Monday, January 5, 2015

Current Update: 5 Bowel Movements in One Day (Solid), Waking Up At Night, Humira Leaking

So the past few days have be somewhat odd health wise. Let me start with Saturday. So Saturday night I took my Humira shot and there was more leakage than normal. It is somewhat hard to inject on the stomach (even though I do have some fat). I held the pen in for a while and didn't pull away (the key is pulling it out once the color changes to yellow). Speaking of which I switched insurance companies and my GI has to pre-authorize my Humira so tomorrow I have to get him to call the company that delivers it to refill my prescription. I always get a little sad when I don't get my full Humira injection since I know the Humira is blocking the pain. Anyways most of Saturday I was pretty tired and a little irritated (I usually am this way when I don't get my sleep). Also I worked out over the weekend trying to shed some pounds. Right now I am about 169 pounds (I would prefer to be closer to 165).

Since I was tired Saturday I got some high quality sleep on Saturday night. I went to bed around midnight and woke up around 10 A.M. All I can say after this is wow what a difference! My body felt relaxed and in the zone the whole day and I really felt good.

This bring us to today. So at about 3 A.M. I woke up for no apparent reason and was wide awake. I first tried having a snack and that didn't work. After the snack I tried watching T.V. and that oddly enough did work (even though they tell you  not to watch to TV or look at your iPad before bed). Anyways I watched T.V. for about an hour and then passed out and woke up at around 8 A.M. thinking wow that sleep was way too short. It was odd though because when I woke up I strangely felt I had enough energy to last me throughout the day. While at work today I noticed the urge of having to pass gas and also having many bowel movements. Usually I track how many I have but I haven't done that in a while since I usually only have about 1-2 per day. Well today I would estimate I had about 5 bowel movements. What is interesting though is that they were all solid and seemed to be in shorts spurts. After the end of the day I felt a little light headed (I guess from all the dehydration). I felt I had lost a few pounds in the bathroom but when I weighted myself tonight it was basically no change.

My theory is that the Humira does work when I take it properly. Also sleep seems to play a role in my Crohn's as well. When I get 9+ hours (which is rare) my stomach is great but when I don't get a great rest it feels as if someone is very gently attacking it. If my symptoms continue I may go to my GI. Usually these things (especially if there is no diarrhea) come and go.

In other health news my parents think I need to get my lymp nodes checked out around my neck-I keep playing with them.

Saturday, November 1, 2014

Halloween Trick or Treat Mini Flare: Helped by Sleep

pumpkin1.jpg (1024×953)

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

weight_gain_in_men.jpg (300×215)

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.