Saturday, November 1, 2014

Halloween Trick or Treat Mini Flare: Helped by Sleep

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So last night was Halloween and to my surprise I didn't eat really any candy however that same day I stopped by Dunkin Donuts for a chocolate glazed donut (quite amazing) and for lunch had a chicken and cheese quesadilla followed by Dominos Pizza for dinner. We tried to order Papa John's however they had a wait of 2 1/2 hours. You don't have to be a nutritionist to know that this was not very healthy. When I was younger I use to remember on Halloween walking up and down the streets of the neighborhood trying to accumulate as much candy as possible and then returning home and trading my sister (one year we mixed up the candy piles and both got into trouble).

Anyways so although I did not have any candy however didn't probably eat the best things I did feel some cramping around 9 o'clock and was over at my parents handing out candy. When I came back to my place I had about 3 bowel movements in probably an hour or so that were all loose (however I did feel better after it was over). I took a hot bath after and felt really good (no heating pad needed). Also I feel asleep around 11:30 P.M. got up an hour later and had a chicken and cheese sandwich since I was hungry and went back to sleep and probably got a good 8-9 hours of sleep. This morning I woke up with no pain and felt back to normal. For some odd reason if I do have a loose bowel it is the week before I take my Humira shot.  I should point out that Friday morning I woke up around 6:30 AM and was up for a while before going back to sleep and getting up for work. I had a cramp most of the day (I think due to lack of sleep). However, I also think it may have been a hunger pain since after I had lunch it went away.

The moral of the story is sleep seems to have an important factor for me. I don't know if the fact that the immune/body is resting and therefore has a healing aspect to it. It would be interesting to measure inflammation rates in IBD patients who get more and less sleep. No doubt though sleep really does have a great benefit.

Saturday, October 4, 2014

Latest GI Checkup: Doing Well

So this past Thursday (October 2, 2014) I had an appointment with my gastroentrologist. I usually type out a summary of the drugs I am taking, my symptoms, and any questions I may have. Also I gave my doctor a copy of my Crohn's history with any major events that I made myself. I feel it is always worthwhile to keep good records (not only for medical history but also because I think it is nice to have some type of archive of your own life). What is funny is he was telling me how patients can come in with binders showing how many times they go to the bathroom, pass gas, and what they eat. My doctor said he tells patients to just throw out all the binders about what they eat and other data. He had a really good line which I have thought about some. He was pointing out that in managing chronic conditions the goal is to make them so they don't feel chronic. The point being that if you are recording your every breathe, what you eat, what you do, essentially you are worrying so much about your condition that worrying becomes part of the chronic condition. At the end of the day if you don't feel well you will go to the doctor and they will try to fix you.

Anyways my doctor in my visit asked if I was OCD when I gave him full history of my Crohn's disease. I laughed because I actually am not OCD and told him I just like to keep detailed notes. It was interesting that from the last time I saw him (back in April).  From the last time I saw my doctor I lost about 1 pound which is interesting since I would have thought I gained a couple of pounds. In another month or so I go for my annual physical so I will see how I am doing overall. Anyways one of my questions was if my doctor has started using Entivyo which was approved earlier this year for Crohn's. My doctor mentioned that he to date hasn't had any experience yet however he wants to wait until the drug has been out a while (I guess to see potential side effects and see if it can work). Also I asked about the Cologuard test that also came out earlier this year. His comment was that the test is good for finding polyps, however not very good at finding cancerous polys (his observation was that this was almost a backwards way of doing it). My believe is that as time goes on the technology will continue to improve and get better at not only finding regular polyps but also cancer polyps as well. My last question was when my doctor thought I needed a colonoscopy. His response that since Crohn's patients have an increased risk of colon cancer usually around 7 years after diagnosed is when a colonoscopy is done. Of course if there is an issue it will be done sooner.

Well I am happy I am in remission and have been for quite some time. Truly I am lucky and grateful that Humira is still helping.

Sunday, September 21, 2014

Vacation Finally! No Crohn's Flares While Traveling

So over this past week I went on vacation (actually a family vacation-we rented a house on Long Island). The trip was very relaxing and it was nice not to have to work (even though I do like working and making a difference). I remember reading this article that traveling could lead to a Crohn's flare. It was nice that I was able to rest and take a break. Resting did seem to help my symptoms (although even though I am currently in remission). To me stress can make Crohn's worse. Stress, sleep, and eating (dark rich chocolate and anything really really greasy) for me seem to be slight triggers. My weight is still pretty good. Currently I am about 167 pounds (I ate a bunch while on vacation but also did a bunch of walking so I guess it balanced out). My game plan is to start eating a tad better (more salads and fruits and less junk food). For a while I was eating pretty healthy and felt better than usual. I know the studies have shown that diet doesn't really show an effect. However for me it does make a minor difference. Well I am heading to bed now after traveling all day. It will be nice for once to finally wake up in my own bed.

Over the weekend I felt a little tired. We got back home on Friday and I was up until about 3 A.M. and I woke up around 9 A.M. Saturday morning (I was pretty tired but no stomach pain). So on Saturday night I went to bed around 11:30 P.M. and woke up around 9:30 A.M. on Sunday morning. I felt pretty good after all that sleep but I think my body might have a slight sleep deficit. Also on Saturday night I had a bowel movement that was solid however did have some minor blood in it. I think I might be slightly anemic since small amounts of blood might be in the stool which is making me tired. I probably will get a good night rest tonight as well.

Friday, September 5, 2014

Humira and Weight Gain

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So recently I have noticed that my weight seems to stay the same (despite the fact that I work out almost everyday). Usually I spend around 30-40 minutes on the elliptical and burn 300-400 calories. When I was in graduate school I was able to work out everyday and burn about 500-600 calories per day and worked out every single day. Also I was walking a mile or two every day to class so that was also working wonders probably. To me it feels like my metabolism is slowing down. For instance, if I work out and cut back what I eat it may take a couple of days for my body to adjust (similar to if I eat a bunch of stuff it takes a while for me to put on the weight). Right now I am about 168 pounds. I would like to get down to around 162 pounds or so. I think I was too skinny before I had Crohn's and enjoy being a little filled out but also like to be comfortable in my clothes. Also I am getting older as well. I turn 28 a couple of weeks ago and maybe getting older is your metabolism slowing down. My internist mentioned that he would prefer I have some extra weight in order to buffer against a flare up. Apparently I am not the only one who has gained weight while taking Humira (an anti-TNF drug) I found this article with others who have gained

Humira is obviously suppose to stop the inflammation due to Crohn's and make me want to eat which is good (at the same time it is nice to feel slim in my work pants). I can still remember when I initially had Crohn's I was down to 125 lbs and came out of the hospital all my pants were too big for me! Most of my adult life I have been probably around 148 pounds-158 pounds. I still remember when I was working out in graduate school up until a few weeks before I went to the hospital and remember getting on the scale and thinking "gee maybe this scale is broke!". Little did I know the scale was actually correct.

Update: So I was working on this blog post the past week and actually started losing a few pounds. As of September 6, 2014 I weigh about 164 pounds (down about 4 pounds or so). I really have been eating well (I feel a little better too). Mainly I have ate salads for lunch and apples after I get home from work.

P.S.-In the picture of have posted for this blog post I think Crohn's looks like the first guy and currently I looked like the second guy (even though mentally I feel like the third guy). 

Thursday, August 21, 2014

Alcohol, Eye Issues, Dental Work and Crohn's, and Doing Pretty Well

So I haven't wrote a health update in a while. I feel sharing my health is not only beneficial to me (since Crohn's is a life long illness) but hopefully to give others perspective.

This morning I had some dental surgery. Apparently Crohn's can lead to some dental issues. I have had some odd dental issues in the past with Crohn's but basically my gums are receding due to Crohn's being autoimmune and "hard brushing". So my gum dentist this morning grafted some of my gum and reapplied it to areas where the gum line was receding. The whole thing wasn't painful. I took 2 Alieve tonight because it was giving me tingling pain (although I don't like taking Alieve as I believe it may cause issues with Crohn's). Anyways I am doing pretty well right now. I didn't eat all day because of the surgery however ordered some Papa John's (six cheese small pizza) and a cookie pizza (you can't imagine how hungry I was). Anyways I am doing pretty well not and hopefully the pain will go away in the next couple of days.

Last night for the first time ever in my life I had alcohol (just a sip). I was worried about how my body would react and it is a bit confusing. Since I had a four course meal I am not sure if the meal caused it or the alcohol. I actually did have a loose bowel in what I call a day flare. Today I was fine though and actually didn't have a bowel movement. My personal theory is that drinking alcohol can cause flare ups (based on anecdotal evidence).

So last weekend my eyes seemed a little irritated. A few years ago I had an infection in my eye and I was prescribed Zylet which got rid of the infection. I took out my contacts on Monday and went to an eye doctor (who was actually in a mall) and examined me and said my eyes were irritated and gave me some stuff to put in. My eyes look much better now and probably within the next couple of days I can start wearing contacts. I feel as if my eyes are really getting oxygen and rest. Taking a shower is a pain since I have to take off my glasses to wash my hair. Anyways it is always good to see an improvement in health.

Friday, August 15, 2014

Weekend Links: Discontinuing Anti-TNF and Remission, Split Bowel Prep Better Results?, FDA Approves Cologuard Test, Fecal Transplants and IBD, and Jet Prep improving colonoscopy

So I have been busy with work and haven't been able to blog much. Here are some articles related to Crohn's I have found interesting lately. For even more research check me out here on Twitter.

Discontinuing anti-TNF and Endoscopic Remission 12 months After
This recent study published in the June 2014 issue of Inflammatory Bowel Disease showed that patients who were in deep remission (defined as fecal calprotectin < 100 ug/g)) with IBD with an anti-TNF (Humira, Remicade, etc) who discontinued taking the drug.  In the study up to 67% of patients still had clinical remission 12 months after their follow up. 70% of patients who had Crohn's disease in the trial did not have relapse which is a pretty high percentage. What is even more interesting is that 85% of patients sustained an endoscopic remission.

Split dosing for bowel prep is superior than taking bowel prep night before
This study showed that breaking up the bowel prep dosage to the night before and the day of may actually lead to a better colonoscopy. So IBD patients are known for undergoing colonscopies and understand about taking the bowel prep the night before. Anyone who has a colonoscopy knows the bowel prep which can be a pain but is the hardest part of the colonscopy. Anyways usually the doctor will ask you to drink all of the bowel prep the night before. Well a study showed that if you split the dosage into two parts (one the night before) and one the morning of you it could actually lead to superior results. The table in the study shows that since 1997 studies have shown that a large majority of the studies show that splitting up the bowel prep does lead to better results. The one issue however is patients have to get up very early (sometimes 4 A.M.) to drink the bowel prep.

FDA approved test for colorectal cancer (that is much easier than a colonoscopy)
So this past week the FDA actually did something good by approving a test called Cologuard which combines fecal blood and DNA and is able to detect 92% of colon cancer and 69% of polyps with high-grade dysplasia. The test will cost $599 and will be covered by Medicaid and Medicare. The test was actually developed by a gastroentrologist at the Mayo Clinic (Dr. David Ahlquist). This gives doctors another tool to catch colon cancer early and ensure patients don't have to have surgery or chemotherapy. Hopefully, this test will save many lives and also free up gastroentrologist since they won't have to do as many colonoscopies! Between Cologuard and PillCamera it is now much easier for doctors to monitor patients and avoid colonoscopies.

Fecal transplants show mixed results (depending on which study you look at)
So as someone who has actually had a fecal transplant which cured me of c difficile I find it interesting to see the research examining if fecal transplants can help patients with Crohn's or ulcerative colitis. One issue I have with some of the fecal transplant studies is they just look at one infusion of a fecal transplant when I believe it may take more than just one infusion in order to obtain remission for Crohn's and ulcerative colitis patients. In a study 27 ulcerative colitis patients were given fecal transplant enemas. Only 15% of patients achieved clinical remission (higher than the placebo). 26% of patients saw an improvement. In a Crohn's study 8 patients with Crohn's were given one single fecal transplant infusion (by colonoscopy) and after one month 62% of patients achieved clinical remission. A couple of patients required an increase in dosage of medication (my Humira had to be increased from every other week to every week after my fecal transplant as I still was having issues). Fecal transplants seem most effective in children with Crohn's disease. One study showed that after a single transplant through the nose (you can't taste it if you are wondering) 78% of patients were in clinical remission within 2 weeks which is quite remarkable.

Jet Prep for colonoscopy-helping patients with poor bowel prep
So some patients don't prepare well for their colonoscopy (some patients can't tolerate drinking all the bowel prep which is pretty gross to drink). Sometimes gastroenterologist are not happy with the prep patients. There is actually a video of Jet Prep on YouTube here . Jet Prep is made by a company called Medivator. The device allows the doctor to flush loose stool and obstructions off the colon wall with pressurized water and the doctor can also back-flush the device channel if there is too much liquid or feces and aspirate the dirty fluid out of the patient.

Saturday, August 2, 2014

Friday Night Mini Flare-Is This Happening?

So last night I had someone of a mini-flare (loose bowel movements and some cramping and pain). This has happened to me before. I actually sat in the tub and filled it with warm water since my backside was somewhat in pain. Today (Saturday it seems to be a little better with less cramping and pain). The past week I noticed some pain in my backside and tried to use a heating pad to help (it has worked in the past) however it might have made the issue worse. I got pretty good sleep last night (9 hours or so) but feel a little dehydrated and tired. I felt pretty good by mid afternoon today however was still a little tired.  My weight is down about 4 pounds-according to my scale (however this always seems to happen between Friday and Saturday morning anyways). All day I really only had one bowel movement in the morning so this may be short term. Hopefully my Humira shot tonight will help. My last Humira shot had a little leakage which I could understand might lead to some issues now.

Saturday, July 12, 2014

Stale Bread Crohn's Cure?

So a while ago there was this article that was posted that talked about how a 78 year old man named Roy Anderson who had Crohn's for over 40 years. over in Ireland was able to relieve his Crohn's pain by eating stale bread.

How he actually made his treatment by taking sliced bread for seven days and poured milk over the stale bread and heated it in the microwave before he ate it. It is important to point out that he didn't eat anything the day before in order for probably the treatment to be more effective. The article also mentions that 90% of severe Crohn's patients improved after going on a special liquid diet.  The liquid diet is the basic nutrients which starves bacteria in the colon. Right after he act the bread he didn't have any pain and had normal bowel movements.

The fact that Roy Anderson has gone a year without any stomach pain is quite interesting. It would be curious for other Crohn's patients to try this in order to see if it has any benefit. I don't think it will help everyone who has Crohn's but could possibly help some Crohn's patients. A doctor in one of the article I read said he didn't believe it would help anyone else. It would be interesting to have a small group of patients try this to see if it is effective and helps symptoms. What is interesting is that many Crohn's patients try to stay away from carbohydrates and this treatment would be taking an aged carbohydrate. I personally doubt stale bread will help cure Crohn's (although I would like to see what a colonoscopy of this guy looked like before and after treatment).

Sunday, July 6, 2014

Thalidomide and Crohn's (An Update): 3 Patients in Remission Long Term Study

I wrote this blog post about thalidomide a while ago and it seems as if now thalidomide may possibly be a treatment for Crohn's. This recent study in the July 2014 edition of Journal of Clinical Gastroenterology (if you want something to read before bed) found 3 patients who took thalidomide. All patients achieved a complete clinical remission and showed endoscopic evidence of healing. The dosage amount that patients took was between 50 and 150 mg/d. Treatment ranged from 4-8 years (which is very long for a clinical trial). 2 patients had perianal fistuals and the other patient had upper gastrointestinal Crohn's lesions and an inflammatory ileocolonic stricture. There were some side effects such as drowsiness, peripheral neuropathy. Peripheral neuropathy was reported in half of the patients (however is reversible once the medication is stopped). The rule seems to be once patients have a cumulative dosage of 50 grams of thalidomide then neuropathy occurs. Patients also have to be careful in not trying to conceive during the treatment or 6 months after ending the drug.

In the same issue of Journal of Clinical Gastroenterology is a letter from someone discussing the possible future for thalidomide. In one study with 12 male patients who had low doses of thalidomide (50-100 mg) daily 70% of patients had a response with 20% getting to remission in 3 months. In another study however when the dosage was increased to 300 mg each night 75% of patients responded within 1 month and 40% were in remission by 3 months. In a multicenter, double blind, placebo controlled (these types of studies are considered the gold standard when doing clinical trials) in 56 children showed that 46% of children achieved remission compared to a 12% placebo. The patients who were given the placebo were given thalidomide 52% of these patients achieved remission.

Thalidomide which was thought of as one of the worse drugs ever created caused some serious birth defects for women that took the drug. These days thalidomide is making a come back and is used to treat a wide range of diseases such as multiple myeloma, cancers, HIV, rheumatoid arthritis. Now it looks like Crohn's may have a role for Crohn's patients especially for patients that are having a flare up for a short period of time. Also patients who are older with Crohn's would benefit since they are not likely to conceive. I hope more studies can be done to show how this drug could help many people.  

Friday, June 20, 2014

Top 10 Ways To Improve Crohn's Symptoms: My Own Experience

So having Crohn's since December 2011 I thought I would publish a list of what I have learned over the years. This is only for educational purposes and is does not constitute medical advice.

1. Take your medications! (even if you feel fine)
2. Make sure you get sleep-research shows it predicts flares
3. Find a good gastroentrologist or internal medicine doctor (check to make sure they are board certified  gastroenterology (here is a link to check)-usually doctors train first in internal medicine and then specialize in gastroenterology
4. When it is cold swim in cold water I have found this helps and do did this guy
5. When eating do what I call the greasy bag test-picture the food being placed in a bag and think of how much grease will it create and then think of the bag as a your digestive system
6. Work out and exercise when you are not tired
7. If you are having a flare make sure you see your doctor as soon as you can-waiting can cause more complications and problems
8. Don't get down-the last couple of years we have seen so many new drugs (with more to come) to treat Crohn's and ulcerative colitis-not to mention surgery for IBD has become less invasive over the years
9. Make sure you have insurance in case you have to get hospitalized and to cover any large expenses you may incur
10. Live life to your full potential and continue to fight Crohn's and educate others (even random strangers about it).

Friday, June 13, 2014

Humira 2 Year Anniversary: Still Going Strong

So I started Humira June 6, 2012 and really haven't looked back ever since. My first post on Humira was about 3 months after taking it here. I still remember feeling much better a week or so after. The worst probably time in my Crohn's timeline was in May of 2012 (my initial visit to the hospital wasn't too bad considering I had someone always monitoring me). I actually can still remember being up to 2 A.M. in the bathroom and actually vomiting. My GI had put me on Asacol  when I was first diagnosed and Prednisone. However, the Prednisone was always a spare tire (and I think made my hair a little flatter even to this day). In retrospect I wish I would have started Humira earlier in my treatment plan.

The only thing that derailed my Humira treatment was my c diff which sucked (and I had to go to my internist to actually get fluids) and ended up getting a fecal transplant which luckily cured it. The only side effect I have noticed from the fecal transplant is that I am a little heavier than I usually am-and my thighs are a tad bigger. The one thing I learned about Humira is to make sure you hold in the Humira pen long enough to make sure you get the medication. If there is any fluid leaking then you are not holding it long enough and not getting 100% of your medicine!

If someone had told me I would have gone two years with very little pain I would have thought they were crazy. When I was first diagnosed with Crohn's I thought I would have a pain for the rest of my life. When I was initially diagnosed with Crohn's I did have some what I would call light depression (of dealing with a new disease). This study from 2013 showed that patients can go 4 years and more on Humira. This Japanese study showed that Humira was effective for long term use in patients with moderate to severe Crohn's. These days I am more positive given how much has changed (even since I was diagnosed) and new drugs continue to get developed. People always seem to come up with ideas and products that we haven't even thought of or could never imagined. Hopefully, the future will be bright with new discoveries and eventually a cure to a disease that impacts so many people and families. 

Friday, June 6, 2014

Sprained Ankle/Taking NSAID With Crohn's/Alieve Cramping With Crohns?

So Wednesday night (June 5, 2014) I was working out at the local apartment workout center and after I did my work out I was coming off the elliptical machine and came down the wrong way and ended up on the ground in pain. I knew right away I had sprained my ankle. I was on the ground and then got up and was a little light headed. So I found the closest bench I could find and just took a rest there. I was able to get out of the work out room (actually in not much pain). I went back to my apartment and put some ice on it and did some research and saw raising the sprained foot also helps. The pain the first night I had the sprained ankle wasn't too bad. Although, I did wake up around 2 A.M. Thursday morning and felt like someone had stabbed my foot. On Thursday morning I could barely get out of bed. I called my mother and said I probably should go to the doctor. I then called my internist and he was on vacation so I was able to go to an emergency care center in town.  The wait time was really quick as no one else was waiting. A nurse asked me what drugs I was taking, what hurt, and how it happened. A doctor came in and then said he would take x-rays. I was taken on a stretcher to get some x-rays done which didn't take long. The results were sent to a radiologist and the doctor came back with the results within a few minutes which was quite impressive.

This morning (June 6th, 2014) I woke up for work and actually felt pretty good. My ankle did have some pain and was bruised but was an improvement over yesterday. I am not back to normal and still have to walk slow but I should improve over the weekend.

The doctor wrapped up my foot and I was given crutches to take home (they a pain to use). I asked the doctor since I have Crohn's is it okay to take Tyenol and other NSAID (non-steroidal anti-inflammation drugs). So let me take you back to the fall of 2011 when I had Crohn's but actually didn't know I had it. I was in constant stomach pain all the time and must have taken multiple bottles of Tylenol Extra Strength which may perhaps made my condition worse. I still remember going to Walgreens to get some more Tylenol thinking how much of this stuff can I take? Growing up however I hardly ever used Tylenol or medications in general for pain. I called my gastroentrologist to ask if I could take Alieve. His office replied back within 15 minutes after asking him and he said it was okay to take. So I took Alieve and I did notice some cramping a little after. Tonight (June 6th, 2014-2 years to the day I started Humira) I did notice a loose bowel movement (however I did have chocolate ice cream which usually gives me the best chance of having a loose bowel movement). I take my Humira injection tomorrow night which should put me back on track.

This study from 1987 shows that 4 patients that had inflammatory bowel disease that were given nonsterodial anti-inflammatory drugs had prompt exacerbation of their disease. This meta analysis (a grouping of all the studies that have been done) showed in 2004 that some patients had a flare after taking NSAID drugs. I think there is no evidence one way or the other, however given I felt some cramping after taking Alieve I will try to stay away as much as I can from taking NSAIDs until I see data to prove otherwise.

Sunday, May 11, 2014

Does Asacol Help Crohn's? Review of Literature

So for a while now I have been off Asacol HD 800 mg. My usual routine was to take 2 pills in the morning when I woke up and 1 pill before bed (the logic I hear is that if you have side effects you would get them in the night-which is why you take the lower dosage before bed). Speaking of side effects my primary doctor told me that since Asacol is aspirin based it is possible to get ringing in the ears (which I did have from time to time). Asacol always for some reason gave me cramps (which is odd since Asacol is designed for inflammatory bowel disease!). This would be like taking an anti-depressant and then becoming more depressed.

The very first study I could find was this one from 1983 in the Journal of Gastroenterology which showed that improved the symptoms of 72% of patients with Crohn's disease (only 18 patients were in the study though). It seems as if in the 1990's there were studies that showed that Asacol was effective in treating Crohn's. In 1992 this study showed that Asacol helped patients who didn't have ileal involvement. In 1993 this trial showed that 78% of patients maintained remission when Asacol was used alone.  This study from 1994 showed that oral mesalamine (Asacol) was effective in helping achieve a partial or complete remission in 60% of patients as opposed to 22% of patients in the placebo group. In 1995, this double blind study showed that Asacol had a "moderate but significant benefit to preventing relapse in Crohn's in remission; this occurred only in patients with small bowel involvement or those older than 30 years". This 1998 study showed that 5-ASA treatments were helpful after surgery (in resection) for maintenance of Crohn's disease

Then this study from 2007 showed that oral mesalazine right after surgery prevented endoscopic recurrence in Crohn's over a 2 year period and it was estimated that it prevented 39% of all recurrences.

Recently however, the data doesn't support the notion that Asacol helps people with Crohn's. This study found that Humira after an intestinal resective surgery was effective in preventing endoscopic and clinical recurrence of Crohn's. This study showed a small subgroup of Crohn's patients may be helped from 5-ASAs (Asacol). This study shows a benefit for Asacol for patients with ulcerative colitis but the evidence for Crohn's is not clear. Perhaps Asacol has become less effective over time, Crohn's has possibly changed, or some other reason.

From what I understand Asacol is very effective for people with ulcerative coltis (I don't have a medical background to explain why this is), however for me at least I did get cramps from taking Asacol at night usually. I now feel better after getting of it. Also the fewer drugs you are taking the fewer risks for not only short term but potential long term side effects substantially decreases. I would be pretty happy if I didn't have to take Asacol for a while. Time will tell though.

Sunday, April 27, 2014

Getting Off Asacol, Feeling Tired, and A Little Bit Anemic

So over the past week my GI called me (from what I have heard very few doctors call back patients with lab results and results. My blood test looked good although he told me I was just a tad bit anemic. So last night (Saturday night) I had a pretty big bowel movement (I could see some blood inside it-not explicitly). When I was at Mayo I was told that sometimes blood can at a small level be in the bowel is hard to see with the naked eye. Anemic seems to be common for Crohn's. Lately I have been feeling a little tired (I felt tired even before getting off the Asacol). First I thought it I wasn't getting enough sleep but a few weeks ago on a Sunday night I felt tired at 9:00 P.M. (which is usual unusual). Tonight I feel like going to bed around 9:30 P.M. On April 20, 2014 I took my last Asacol pill (hopefully I won't have to retake it). I have been taking Asacol since December 2011. Really I haven't noticed too much of a difference. My doctor said "it may take time to notice a difference".

It feels as if the Asacol really didn't help in the time I took it. Really the major game changer was Humira which I started in June 2012 and still going strong on that. I can still remember in May when I was really tired, really sick, and had to throw up at night (actually the morning around 2 or 3). When I was initially diagnosed with Crohn's I actually didn't feel really bad. Yes, I felt pretty tired, was down to 125 pounds but I didn't feel as if I were going to die.

Hopefully, my doctor can give me something to help to help the anemia and feel a tad better. All in all I can't complain too much though. I actually think I may have less cramping after getting off Asacol. Time will tell though of course.

Sunday, April 20, 2014

Update: Car Accident, Sleep, Cramping, and Easter

So this week has been a crazy week. On tax day (April 15th, 2014) I got into a car accident. Luckily I wasn't serious hurt. My back felt a little bit sore afterwards, however that seems to be going away. Dealing with the stress of getting the car towed, talking to the insurance company, working, and studying, does get stressful. I also moved in to a new apartment so I have been pretty busy trying to knock things out and take care of things.

I have been cramping a little bit. I honestly think it is due to lack of sleep. My apartment has a window that lets a lot of light into it. In my old bedroom I had plantation shutters that could block that out (which I like). Usually my alarm on my iPhone wakes me up. Anyways, some cramping and feeling tired from this. I have been okay otherwise. Last weekend I had some fast food since I was moving in and didn't have very much in my apartment. I can honestly say I felt pretty good even after eating it. At night I still sometimes use ice packs. This weekend I will try to get more sleep and not feel as tired. This morning (Sunday) I woke up and was a little tired (even after 9 hours of sleep) however sometimes your body has to get going in the day to wake up.

On Monday I see my GI. I have some questions for him in terms of how useful Asacol is. There is a rebate program that allows you to save $200 on Asacol, however it is a pain to deal with and I had to get multiple cards from my GI and resubmit them to Asacol in order to get the drug. I hear Asacol is going generic so I will have to ask him about that. When I see my GI I usually type out my list of questions because sometimes I forget what to ask and I only am allowed probably 10 minutes with him.

All and all things are pretty good. I would like to improve the cramping some. Not sure what my weight is these days since I don't have a scale (update I have a scale and now am 168 pounds by Saturday this was down to 164 as I worked out for the week).  I have been working out in the apartment gym which is pretty nice. Today is Easter and I will be having dinner with my parents at their home. Most likely we will just be having Mexican food takeout.

I can't complain too much. Crohn's is a lifelong disease and chronic. Feeling 90% is a great feeling. I often am grateful there are medications like Humira and Asacol now and glad I didn't get this disease in the 1980's or early 1990's. Hopefully the future will bring even a better understanding of Crohn's and how to treat it to improve the quality of life of so many people.

Sunday, April 6, 2014

Weekend Health Update: Less Cramping, Dry Nose (Still), and Sleep

So this week my stomach was a tad better. The beginning of the week brought some cramping but cleared out toward the end of the week. The ice pack at ice seems to help out. I tend to have cramping after I take Asacol. My nose continues to be crusty and dried out. However, I am thinking in the next few weeks we should get more humidity and help out. The thing that bothers me is sleeping. My whole life I have been a late night person and usually on weekends I fall asleep around 2 a.m. but my mind keeps going for a while. I sometimes wish I could start work at 11 a.m. (I could probably work more hours and be more productive). Today I felt like I got a pretty good rest however my body is trying to make up from the lost sleep from the beginning of the week so. I was worried I wouldn't be feeling well since some of the Humira injection came out 2 Friday nights ago when I injected it.

Next week I move into an apartment (I have been living at home a while-saving money) and working). I get a little nervous that I might get a flare up, however I am pretty sure I have a flare up it won't be as long as when I was initially diagnosed. I just saw a study that showed that about 21% of Crohn's patients missed >25% of work in the previous week.

I am just glad I am feeling good these days and a far cry from last year when I went many months with c difficile!

Sunday, March 30, 2014

Friday Night Stomach Hurricane, Humira Leaked (A Little), and Dry Nose

So Friday night (March 28), I had a large bowel movement. It really was multiple bowel movements at once. In order to help myself recover I put some ice (as I normally do over my stomach to recover). Saturday I felt pretty good. My body woke up at 9 a.m. (usually I get up around 8 for work on weekdays). However, I went back to sleep and when I woke up around 11 was a little tired but the rest of the day I felt pretty amazing. I didn't have a bowel movement the whole day and my stomach felt fine. Personally I wonder about the connection between sleep and how Crohn's or IBD patients feel. When I did my injection Friday night I also did notice a small amount of liquid that leaked out of the injection pen. It seems to be harder to inject the stomach than the legs. Just have to remember to hold it in as long as possible!

Saturday morning when I woke up my nose was stuffy (it has been pretty dry for about a month or so). There was stuff in my throat that made it feel sore but it was just nasal dripping. It really sometimes gets annoying sometimes having a mildly bloody nose. Taking a shower is the best thing for it and I often do Sinusrinse to get everything out of my nose.

Other than what I mentioned above I feel pretty good. Some days I really don't know I even have Crohn's which is a miracle. Today (Sunday) I was even able to work out for 50 minutes on the elliptical burning roughly 500 calories which is great! I plan to move out of the house very soon and get my own place. The apartment has a work out center so I will be hopefully able to burn some calories and get somewhat in shape. My weight these days is around 167. My whole life I was around 150 or so. However, I feel better being more filled but wouldn't mind shedding some pounds to fit into my pants a little better.

Wednesday, March 26, 2014

Dr. Thomas Borody on Fecal Transplant and Cure for Crohn's?

Recently an article came out about Dr. Thomas Borody claiming that a fecal transplant might be used for a whole host of things from multiple sclerosis, to Crohn's, to Parkinson's disease. In the article nurse Suzanne Heskett had Crohn's and seems like she had a bad flare up in 2001. She was going to the bathroom 18 times a day and thought she would have to get part of her colon removed. In trying to help her dire health situation she went to Dr. Thomas Borody (who even I will admit is a gastro star doctor in Australia and has done tremendous research in gastroenterology in general).

Suzanne had a nasal tube and three different donors donate their "stuff" which took about 5 hours and she felt better right after and several months later her condition improved. What is interesting is that 11 months after having a colonoscopy and Dr. Borody didn't even recognize she had Crohn's. Borody first did a fecal transplant for Crohn's in 1988 according to this journal article.

Borody goes on to say that he has done a fecal transplant for someone with a young person with rheumatoid arthritis and it went away after the transplant. He also claims that he has "cured" dozens of people with colitis and Crohn's. Dr. Borody also claims that three Parkinson's patients was helped by fecal transplants. Fecal transplant even has the potential to help patients with Alzheimer's, autism, obesity, rheumatoid arthritis, acne, insomnia, major depression, autism, and even diabetes. 

I am a little skeptical of the claims that fecal transplants will "cure" Crohn's, however I don't think a fecal transplant would hurt Crohn's patients. Speaking as someone who actually had a fecal transplant in 2013 I did feel a little better after the transplant, however still had a flare up (which could have been caused by the c diff I had). However, I feel pretty great now and some days don't even realize I have Crohn's. All the research I have seen tends to show fecal transplant work better for ulcerative colitis. 

If you don't live in Australia Dr. Thomas Borody will charge $10,000-$15,000 and you can be expected to stay between 2 and 10 weeks and have to have a doctor that will resume care after the procedure. The first step however is to have an initial interview which would cost $150. However, Borody has been doing fecal transplants since the 1980's and as I wrote here does 5-6 per week and I estimate by now has done close to 2,000 fecal transplants.

The application of fecal transplant for multiple illnesses sounds exciting. Perhaps the reality will be it won't be apply to as many things as possible but could have an impact on people with Crohns, ulcerative colitis, and other major diseases. Hopefully, with time we will learn even more about fecal transplants and how they can help hundreds of thousands if not millions of people suffer less and enjoy life more. 

Monday, March 10, 2014

Weekday Links Part II: Anti-inflammatory herb for IBD, Stem Cell Crohn's, Detecting Crohn's With Laser, Sweden Highest Crohn's Rate in Europe

Endoscopic Balloon Dilation and Crohn's
So I wasn't familiar with what even a endoscopic balloon dilation (EBD) does. The procedure seems like it is mainly used for strictures and can be used as an alternative to surgery. In the study 43% of patients achieved long-term benefit from EBD.

Vitamin D and Crohn's: Sunlight Decreased of Crohn's Disease 
In a study that looked at over 90,000 women in France higher levels of sun exposure was associated with an decrease in Crohn's but not ulcerative colitis.

Anti-inflammatory herb for IBD?
So it seems as if a Chinese herbal drug may have some benefits in people. The trial looked at just mice however showed that FAHF-2 may be a novel treatment for Crohn's.

Hematopoietic stem cell transplantation in refractory Crohn's. 
Stem cells has been used for Crohn's (however it can be quite dangerous and even deadly). In this trial 26 patients were included. Many patients in this study (which just looked at toxicity) experienced infections and the study recommends to use the stem cells only in extraordinary situations.

Early Detection of Crohn's With Laser
Recently it was announced that a pill camera was approved by the FDA to be used as a colonoscopy. Now it seems as if researchers are taking colonoscopy to the next step by using blue laser which can magnify the intestinal wall and magnify it 1,000 times and see the earliest abnormal cells. The laser is being used by Ohio State Medical Center. Dr. Razvan Arsenescu has been using the laser and the hope is the laser will be used not only to treat IBD but also lung, bladder, and other diseases.

Sweden Highest Rates (In Europe) of Crohn's Disease 
Canada has the highest rates of Crohn's disease in the world and it looks like Sweden has the highest rate in Europe. The study showed that patients who had Crohn's for 40 years had an increased risk for surgery. The mean annual rate for Crohn's was 9.9 people/100,000/year (which is still a very small percentage of the population).

Weekday Links Part 1: Low Dose Naltrexone for Chronic Pain, Traveling Increasing Risk of Crohn's, Patent for Oral Anti-TNF, Qu Biologics Trial

I got a little carried away and found many links in the past couple of weeks and found some great links. So enjoy!

LDN for Anti-inflammatory treatment chronic pain
     For a while now I have been blogging about low dose naltrexone (LDN) and how it really has shown benefits for Crohn's patients here, Originally approved for alcoholics in the late 1980's the drug has shown promise for people with Crohn's disease and other chronic illnesses. Since 2007 Dr. Jill Smith of Penn State has shown that LDN has helped Crohn's patients with very limited side effects. The only problem is the trials for LDN are small (< 50 patients). For major drugs you generally needed hundreds of patients.

This article talks about how low dose naltrexone is low cost and well tolerated. However, the article points out that the sample sizes are low and replications of studies have not occurred. The article does finally conclude that LDN may possibly be used for management of chronic pain disorders

Traveling Increased Risk of Crohn's 
This is probably a favorite study of mine and something I have been wondering about for a while. It seems as if traveling in an airplane could induce some inflammation. An even better study would be to take a c-reactive test while in the air and then when people land to see if it changes. The thinking is that hypoxia can lead to inflammation in the gastrointestinal track. The patients who frequently traveled and go to places above 2,000 meters had more flare ups when compared to patients in remission.

Patients Benefit From Second Treatment of Remicade (Infliximab)
In a study where 29 patients who had Crohn's disease who took Remicade (infliximab) and Humira (adalimumab) restarted Remicade. The conclusion was that a second treatment of Remicade after Remicade or Humira don't work could help.

Patent Awarded to Avaxia for Oral Anti-TNF for Inflammatory Bowel Disease
Drug company Avaxia Biologics filed a patent (AVX-470) in order to deliver anti-TNF (Remicade and Humira) to patients. I had read before that creating an oral anti-TNF would be difficult because of the way the digestive track broke down the medicine. The drug it looks like the Phase 1b clinical trials are for ulcerative colitis.

Qu Biologics Opens Crohn's Trial to U.S. Participants
I have been following Qu Biologics for a while. The company is a small Canadian company that has probably come up with the most novel therapy to treat Crohn's. The company uses Site Specifics Immunomodulators (SSI) which are used in order to reboot the immune system. 60 patients are being used in the drug trial. 10 patients have already been treated and the results are pretty good. 70% of patients showed a full resolution of clinical symptoms after 3 months or more. 40% of the 70% or (28% of the overall patients) had sustained clinical remission after discontinuing all medications (including the SSI treatment)! This is pretty amazing that patients were able to not only stop the actual treatment but all other treatments. Hopefully SSIs can be used to help people with Crohn's in the near future.

Thursday, February 27, 2014

Importance of Not Skipping Meds For Crohn's

So this morning I forgot to take my Asacol. Right now I take 800 mg (3 times a day along with some 3-omega fish oil since my bad cholestrol is a little high (although I have started to eat salads for lunch which so bring this down/working out more). According to this article about 50% of patients with chronic illnesses don't take their medications. Part of the reason might be cost of the medication. The other part of the puzzle might be that patients might believe that the medications they are taking my not help them.

When I didn't take my medication this morning my stomach felt a little cramped. This morning I had to wake up early for a meeting (usually my body likes extra sleep in order to heal-just a theory). I had to go almost the whole working day without taking it and when I got home took 1 pill and then took 1 in the evening and 1 before med. If I learned anything about the human body it is that it likes this in dosages that are spread out. Asacol seems to mellow out my colon and tells it to chill out. I have rarely missed taking my medications. Today serves as a reminder to make sure to take all your meds. Speaking of meds I am due for my every other week shot with Humira tomorrow night. Usually I have a loose stool on Friday or Saturday night but recently that hasn't been the case.

Tuesday, February 25, 2014

Sam Faiers Diagnosed With Crohn's Disease: A Viewpoint From A Crohn's Patient

So recently Sam Faiers came out and said that she had Crohn's disease. I live in the United States and she lives in the UK so I am not familar with her (although she is pretty attractive) and is a model and reality TV star in the UK. At any rate Sam Faiers is only 23 years old and lost a stone and a half (21 pounds for those in the United States). She started to lose weight and realized it wasn't just a stomach bug. Crohn's actually does affect 100,000 people in the UK. Sam said she couldn't hold food down for almost a month. Currently, Sam is drinking shakes (all-liquid diet for the 6 weeks in order to give her bowels a rest).

Sam has an experience that many Crohn's patients have. When I was in graduate school and got symptoms I had no idea what I actually had. I remember feeling very tired (pretty similar to when I had mono in college) but actually felt tired before the stomach issues started to come up. My father who is a chemical engineer researched everything and told the doctors it was c diff and they told him no it was something else. My GI suspected it was Crohn's and actually confirmed it via a colonoscopy. Catching Crohn's early on can not only help the patient but reduces the risk of having surgery. I have not had surgery yet and continue to take Humira (I started it June 6, 2012) and feel actually like I did before Crohn's (some days I even forget I have it to be honest). Getting the diagnosis for Crohn's or any illness is the best feeling you can get. I still remember feeling a little bumped knowing I would have Crohn's the rest of my life (unless we find a cure). However, the human mind constantly is creative and creating things we never thought possible. Think about it 20 years ago would you have honestly imagined some of the wonderful technology we have today? 

I hope Sam Faiers gets well and gets herself into remission. However, maybe the silver lining is raising awareness about Crohn's which is positive. Sometimes I tell even random strangers about it just to spread the knowledge and awareness. 

Monday, February 24, 2014

More Sleep, Dry Nose, and Cold Water

So in my last post I talked about how I didn't get much sleep last weekend and had a dry nose. So this weekend I did a little better on sleep getting about 9 hours on Friday night which made me feel really good all day Saturday and last night I did pretty well on sleep about 8 hours or so and felt okay this morning.

For my dry nose I bought a humidifier from Target and used it last night. This morning I woke up and it felt like I wasn't as dry as usual. The humidifier has 2 levels (low and high). However, the high level can be a little loud so while I was sleeping I had it on the low setting.The other thing I bought for my nose was NeilMed for dry nose gel and it seems to have helped. I had Mexican food last night (Sunday night) (chicken tacos with refried beans and rice) and didn't feel too bad.

This weekend I had a few green bowel movements (which has happened to me before). I really don't get worried unless I start losing weight and feel cramping which I am actually weighing about 165 these days (however I don't feel large I just feel more filled out).

A couple of days the past week I went swimming in semi cold water which felt great. However, it didn't have the same effect when I swam in very cold water last fall (it does feel pretty good though). The water temperature was about 65 degrees making it chilly but not unbearable.

The start of 2014 has brought me pretty good health and I feel just like I was pre-Crohn's which I count as remission. Hopefully, this will continue into the near distant future.

Sunday, February 16, 2014

Sleepless Weekend, Ice Pack, and Dry Nose with Crohn's

So this weekend was somewhat interesting. On Saturday morning I woke up around 9 am and had gone to bed around roughly 3 or so and felt out of it most of the day. I usually need 8-9 hours of sleep to feel reasonable. With 6 hours I felt a little grumpy and zombie. Years ago around junior year of high school I got 5 hours of sleep one night and remember the next day feeling like the longest day ever. In high school I use to get up around 6 am to either catch the bus or drive in. In the afternoon I went to work out and felt pretty bad (just very tired). For dinner I had eggplant Parmesan which I have had before, however around midnight I had a semi mixed bowel movement. About 20 minutes later the bowel movement was completely loose (reminded me of my c diff days). I lost roughly 3 lbs in the bathroom (if my scale is right). For some odd reason on select Friday or Saturday nights is when I do have a small episode of diarrhea (not exactly sure why). At night for a while I have been using ice packs (even though no pain-although m stomach at night churns after taking Asacol). 

This morning I woke up with somewhat of a headache (which is pretty rare for me). I went to sleep around 1 in the morning and woke up around 11 and felt this semi-good sleep (mostly because my body was catching up on sleep). Sleep is like a bank account sometimes you don't get enough and have to more than make up for it on weekends. I felt much better today but still feel a tad tired. Hopefully, tonight I will get a good rest before work tomorrow. I haven't had a bowel movement all day today so that is good. 

So the past few weeks or so my nose has been very dry. I usually do SinusRinse (which can be gross at first but does work wonders). Where I live it has been cold recently but with all this stuff in my nose my nose feels stuffed up. I went to Walgreens and bought some NeilMed stuff for dry noses. I have noticed when I take a shower my nose does feel a lot better with the moisture. Hopefully this dry nose is temporary. 

Monday, February 10, 2014

PillCam Approved: Will This Help Treating Inflammatory Bowel Disease and Save Billions in Healthcare Costs?

PillCam for colonoscopy testing

So the past week the FDA approved the use of PillCam (mind you it is approved to be used in 80 other countries already-the FDA seems slow at this). Note that more than over 1.5 million patients have used this and the FDA is just now getting around to approving it. Colonoscopies can be pretty expensive and as this New York Times article points out can vary depending on where you are in the United States by thousands of dollars. The average price for a colonoscopy in the United States is $1,185 however in Switzerland is only $655.

Given Imaging is the company that makes the PillCam.  The camera is battery operated and takes pictures for about 8 hours and then sends those pictures to a doctor. The patient wears a recording device about their waist. The company has been producing the PillCamera since 2001. One drawback are the images are not as great as an actual colonoscopy. Also if you actually do have a polyp the doctor then has to go in via colonoscopy and get rid of the polyp. However, there are patients who can't complete a colonoscopy (anatomy, previous surgeries, colon diseases, etc). which is about 750,000 people. The PillCam is only $500 which is much less than $4,000 for a typical colonoscopy (an 88% decrease in cost). According to estimates there were about 14.2 million colonoscopies performed in 2002. So just by sheer growth that number is much greater than that today. Now if you had a few million people take the PillCam instead of a traditional colonoscopy you could start saving billions of dollars in healthcare costs.

The company does make a pill camera just for Crohn's which is PillCam SB (Small Bowel). According to the company 75% of Crohn's patients have legions in their small bowel. What is even more interesting is that 62% of Crohn's patients changed their therapy within 3 months of using the PillCamera. The procedure is pretty easy. It requires patients just fast the night before and then you go to the doctor's office and wear a belt around your waist over your clothing, swallow the pill with a tall glass of water, then come back to the doctor's office after the images are sent. The PillCam passes through the bowel movement within 24-72 hours after you ingest it. There are of course risks which are very small (less than 2%) however for Crohn's the risk of retention with the PillCam is 5% (I would imagine if you had a stricture). Since Crohn's and ulcerative colitis patients in general have complications the PillCam might be something that could supplement a traditional colonoscopy. GI's could give monitor Crohn's or ulcerative colitis every couple of years (with a lot less hassle of having to do the nasty prep-honestly the prep for the colonoscopy isn't bad I have had 3 since 2011 and my advice is to start the prep as early as you can).

No question over time the technology will improve, the images will get better, the pills smaller, and the complications will get reduced. Gastroenterologists will have to do fewer colonoscopies which would mean more time to spend with patients. However, gastroenterologists may not be happy if a pill camera is able to replace a job that they do. GI's are some of the highest paid doctors making on average over $340,000 per year and 4% make $750,000 or more (I would assume these are researchers, administrators, or they own a practice). Gastro doctors have to spend 4 years in medical school, 3 years of internal medicine residency, then 2-3 years of a fellowship. My GI for example graduated medical school in 1984 then did a one year internship then 2 year internal medicine residency, then 2 year fellowship for gastroenterology (ending his fellowship in 1989-so 5 years total after medical school). So essentially gastroenterologist go to school or have training for almost a decade after they graduate college! No question though that the PillCam will be an added improvement, potential to save billions in healthcare costs, increase monitoring of Crohn's and ulcerative colitis and most importantly may spare many people the process of having to do the prep the night before!

Monday, February 3, 2014

Weekend Links: Drugs Cut Surgery by 60%, Texting, SCD Diet Study, Marijuana Helps Crohn's, JAK1 Study for Crohn's, Golimumab, Fecal Transplant Helps UC and IBS

(Note: I started this post on Saturday however wasn't able to finish it as I saw some more stories to add).

Drugs Cut Need for Surgery By 60% 
     You could say if there is any time to get Crohn's if you had to get it. So in a study that looked at 5,000 patients and looked at the effect of the thiopurine drugs. Azathioprine  for more than 12 months had a 60% reduction within the first 5 years of diagnosis. Thiopurines have been around since the 1970's.  

Texting Helping Children with Crohn's 
      The medical expenses for treating IBD are quite high. Estimates place of IBD is roughly $1.8 billion according to the CCFA. So one way to bring down the costs may be using doctors in order to get patients and doctors to communicate with one another. A clinical trial is taking place at Cincinnati Children's Hospital were an application which uses information from the user and sends it back to the doctor. Patients can respond if they are taking their daily medications and how many times the patient felt sick. The app can track the behavior and get an early idea of when a flare up might occur. The CCFA website has an app called GI Buddy that people can download and track nearly everything related to IBD (bowel movements, what you eat, how you feel, etc). Technology is a no brainer is reducing costs related to not only Crohn's but other chronic illnesses. If you had data on 1,000 different Crohn's patients and ran some analysis on it you could find patterns (what foods help with Crohn's, what foods are likely to cause a flare, what medication works, etc). If patients were able to have their information sent to doctors and doctors could data mine the data to see what patients needed to be responded to first it would make things much more efficient (for both the doctor and patient).
Small Study on SCD Diet 
     So in a very small and uncontrolled trial Dr. Ece Mutlu at Rush University looked at 20 patients who adhered to the specific carbohydrate diet (SCD). There is plenty of controversy about this diet. The Crohn's and Colitis Foundation (CCFA) doesn't believe that diet helps. However, if you read internet stories you can find dozens of people who have seemed it helped. This study just looked at the intestinal bacteria. Mutlu claims that some of his own IBD patients have "drastically improved" with mucosal healing and were able to discontinue their immunosuppressants for several years.

Marijuana Treats Crohn's (How Many More Studies Do We Need)
     In a recent study published in the journal Pharmacology showed that cannabis has been shown to help people with cannabis. I have not seen anything published that shows marijuana has a negative impact on Crohn's. This study showed that 70% of patients improved after treatment (this first study was done in 2011). In a follow up study found that 90% of patients had a decrease in their symptoms while 45% of patients had a remission of their Crohn's. Clearly, cannabis should be something that is studied more to see if it can help people with Crohn's. With Colorado allowing people to possess cannabis without any legal trouble it seems perhaps more people will be able to experiment and see if it helps them.

Galapagos Phase 2 Trial For JAK1 Inhibitor for Crohn's 
According to this press release to conduct a phase 2 trial on a JAK1 inhibitor. In the past JAK1 inhibitor as pointed out by Dr. William Sandborn here. Dr. Edward Loftus had a concern about the lipid effects as the drug did increase LDL (bad cholesterol) however Loftus said it wouldn't be a deal breaker. The trial will enroll 180 patients (over 49 different clinic centers around the world) for a 20 week trial.

Golimumab Maintains Clinical Response in Patients With Ulcerative Colitis
     In this phase 3 trial patients were given either 50 mg or 100 mg (subcutaneous injection). There were 464 patients that were enrolled in the trial. Roughly 47% of patients who took the 50 mg treatment were in remission as opposed to the nearly 50% of patients that were in remission in the 100 mg group. 3 patients did die (they were all taking the 100 mg dosage too). Also remember that 3 patients out of 464 is a little more than 1/2 of 1%.

Fecal Transplant Shows More Promise for Ulcerative Colitis and IBS
      So fecal transplant which by the way I believe saved my life is being studied for digestive disease such as Crohn's and ulcerative colitis. All the data I have suggests that fecal transplant would benefit ulcerative colitis patients more than Crohn's patients. Dr. Brandt who has been doing fecal transplants for a long time reported that 63% of his patients (16 patients had IBD-with 14 having UC and 2 having Crohn's) had a lower frequency of flares after they had fecal transplants. The diarrhea also decreased by 56% (8.2 bowel movements to 3.6 bowel movements) after the fecal transplant. Symptoms resolved in 29% of patients and decreased by 43% of patients (21% of patients saw no change). Which means almost 80% of patients saw some benefit to a fecal transplant. Dr. Brandt also looked at fecal transplant for IBS patients and found that 73% of patients had a complete or partial resolution of their symptoms.

Monday, January 27, 2014

Cold Weather, Sleep, and Relaxation = Remission Plus

I recently took a road trip to Dallas, Texas over the past weekend. Work has been a little rough lately so I am glad I could take a little break (I like to work but a break every now and then doesn't hurt). I felt on Friday a tad minor flare up as I woke up early to leave for my trip. After the drive I was pretty tired however after a hot shower felt pretty good. During the trip I tested a theory I had about cold weather and Crohn's. So I rolled down my window while traveling in cold weather (under 34 degrees). I had very minor pain but realized that I felt better the longer my hand was outside. This is an interesting phenomenon. It is pretty similar to putting yourself in cold water which I did here. I don't know what the scientific underpinnings of this phenomenon but it sure is interesting.

I got pretty goods night rest last Thursday night. On Friday night I slept pretty well but still felt a little bit tired (my sleep cycle has a debt to it). I have noticed sleep does make a difference in terms of how I feel. This has been seen in some of the here and here. I wish more studies could be done like these types of things since as someone with Crohn's disease know when they feel better or worse. Knowledge from patients is important since we have some idea of what works and what doesn't work. As more people develop Crohn's and we share this knowledge we will continue to have a better understanding and refine why people get Crohn's and hopefully find a cure.

Today (Monday) I woke up for work and felt a little tired. I felt like I was just walking through the steps this morning when I woke up. Tomorrow I don't have work due to an ice day so I plan to catch up on some rest. When I don't get my sleep I also seem to crave snack food. My weight is getting up to about 166 (I am 5'11). I feel a little heavier and plan to slowly wean this down some. On the positive side I would rather have a few extra pounds then be a very skin (a few extra pounds gives me cushion in case of a flare up).

Wednesday, January 15, 2014

Minor Fissure Bowel Movements Back To Normal/Unisom and Crohn's

So in my last post I mentioned that I had a solid bowel movement. Well that seems to have cleared up however I started having minor blood near my rear area. The last time I had a fissure I couldn't even walk and had heating pads/took hot baths/used the car warmer feature to try to heal my rear. Sunday night I usually have Mexican food (I usually have cheese enchiladas and re-fried beans) however perhaps this may have caused some issues. I think the better explanation is I did take some over the counter Unisom which is suppose to help sleep however I think it ended up making me worse and discontinued using it. There was some blood on Monday (not a whole lot). By Tuesday it was almost nil and today was perfectly normal. I am not sure of the effects that Unisom has for Crohn's but it can't be good.

Everything seems to be back to normal. This Friday I take my shot and next week I have a trip planned for some relaxation (which I would be willing to bet will chill me out some).

Saturday, January 11, 2014

Humira Dosage Didn't Hold In Long Enough, Sleep, and Feeling Pretty Good

So my health has been doing pretty good. This past week I have been eating salads at work for lunch to try to be a tad healthier but always find myself hungry. This evening around 10 PM I had a semi-loose stool. However I forgot to take my Asacol this morning (I had to go into work for a few hours this afternoon). Also a few weeks ago on my Humira shot I didn't hold it in long enough and some of the medicine leaked out which is never good and sometimes take a while before you notice the results. The only other thing I have noticed is I probably need a little more sleep. At night I do have a little bit of cramping and get use a cold-pad from Walgreens that seems to help out but it doesn't seem cold enough and just cover the sides of my stomach. When I get a bag of ice and place it over my stomach it feels pretty good however you can't leave it on too long or else you end up with a  Last night I got a decent amount of sleep (8.5 hours most likely) and my mind seemed pretty active. Normally I get to bed around midnight (after watching Fresh Prince of Bel-Air) and wake up around 8. For some reason my body isn't always asleep. I remember the one time I slept for about 10 hours and felt like I was cured of anything I ever had. My work schedule has been busy with projects (more stress than usual). In order to relive this stress I plan to take a road trip in a couple of weeks for the weekend which usually does wonders in terms of relaxation and stress. I plan to see my GI doctor in April for a usual checkup (it is actually good when I don't have to see him since it means I am in remission).

I am glad I am not where I was last year with c difficile and a fecal transplant. I am always happy and grateful to be in remission but as even I know Crohn's is a lifelong illness that will be with me for the rest of my life (unless there is a cure). The only thing to do is take it one day at a time and live everyday to the best I can.