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.