Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Monday, August 27, 2012

Stem Cell Research

  UC = ulcerative colitis     GI = gastrointerologist     BM = bowel movement  

I was offered the opportunity to join a clinical trial for stem cell treatment of UC today when I went in for my second opinion consult with the ulcerative colitis specialist at UCSF Medical Center. In lab tests, stem cells have shown to go directly to sites of tissue injury and start repair, especially in the intestinal lining, lungs, and liver.

I feel a little obligated to take part simply to help and promote the research and just out of medical curiosity. However, I have chosen not to do it for the following reasons:
  1. I would have to wait a few weeks to even join in order to let the Remicade fully wear off. 
  2. Once I join, I would have to go through vigorous testing and poop-journaling before my first treatment, which means even more waiting. 
  3. During treatment, I would have to go in every 1-2 weeks for a full day of testing and monitoring, which means too many days off work. 
  4. Once I start treatment, there is a coin-toss chance that I could end up getting the placebo instead of the real deal, which would mean months of badly flaring UC under no treatment. 
  5. Even if I did get the real drug, who knows the chances of it actually helping, much less inducing remission. 
Since my last blog post my condition has been getting worse as I wait around for appointments, paperwork, and red tape in order to get to the goal of surgery, and I am in such bad shape right now I need immediate relief. There is no way I could wait around for all that drug trial stuff just on an off-shoot chance that it might work. I only have a limited number of days I can take off work for sick leave before I lose my job and medical benefits, so I need to reserve those for surgery... and if I don't start feeling better in the immediate future, I'm going to have to start a long-term medical leave, because I can't work like this.

Even still, I thought I'd just let you all know that the trial is out there so you know what's on the horizon... and that it sounds fairly promising. It is still in a Pase II trial, so early stages of testing, but who knows... It might be the next big thing in UC treatments.

 The specialist agreed that if I'm not going to do the trial, then I should try Humira while I'm waiting around for surgery. It might help relieve some of my symptoms so that I'm healthier when going under the knife, which increases my chance of a successful surgery and reduces risk of complications. I don't have my hopes up that the Humira will do much, but at least I can say I tried absolutely everything out there by the time I go in for a colectomy.

I got my Humira "kit" today with instructions and sample instruments showing me how to give myself the injections, and I made all the arrangements to get it started. The drug will have to be overnighted to me from a mail-order pharmacy once they verify the prescription and insurance authorization, so hopefully I will be starting it by the end of the week.

 I have a tentative appointment with one of the top colorectal surgeons in the nation in mid-September, so I will post again after that appointment in order to share the final plan and potential date for my first surgery.

 T H I S   W E E K ' S   H E A L T H   L O G

Condition:  Mild/moderate ulcerative proctosigmoiditis diagnosed 1995. Severe ulcerative pancolitis diagnosed May 2011.

Current Symptoms:  Frequent and severe abdominal pain/cramping, LOTS of blood, mucous, urgency, 8-15 BM's per day, joint pain, gas, constant bloating and "ache-y" belly.

Current Prescriptions:  Asacol HD (4800 mgs), no longer able to retain mesalamine enemas. About to start Humira and Methotrexate.

Current Side-effects:  None.

Current Supplements:  Probiotics, L-glutamine, aloe juice, metamucil, fish oil, 5-HTP, calcium, multi-vitamin.

Current Restricted Diet:  No wheat, meat, dairy, beans, seeds, whole nuts, raw veggies, anything processed or anything considered "roughage". Eating cooked veggies, fruit, eggs, tofu, soy milk, soy protein powder, rice, potatoes, peanut butter, organic soups/juices, corn products, coconut water. Not eating very much overall, though; some days I eat little to nothing (only liquids) if my symptoms are particularly bad.

Current Exercise:  None - too weak, too much pain and urgency.

Current Stats:  Height - 5'7". Weight - 143 lbs. Body fat - ?% Losing muscle due to insufficient calorie intake and lack of exercise, but looking forward to gaining it back after surgery.

Feel free to leave reactions and comments below...
  Previous Post                                                                                                             Next Post  

No comments:

Post a Comment

Please feel free to post comments or questions. Feedback welcome.