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.