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.