Fighting For It.: August 2012

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:

I would have to wait a few weeks to even join in order to let the Remicade fully wear off.
Once I join, I would have to go through vigorous testing and poop-journaling before my first treatment, which means even more waiting.
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.
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.
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
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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.

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Friday, August 10, 2012

Coming to Terms

Since my last post I have entered another flare-up, and I am refusing to go on Prednisone, the only thing I know would take my symptoms away. (If you're wondering why, view my post titled "Dread of Pred".) In addition to still being under a full dose of Remicade, Asacol, Rowasa, and all the supplements I take regularly, I have also started Wellbutrin, gone back on some strong probiotics, started taking aloe, and severely restricted my diet (no wheat, meat, dairy, eggs, processed foods, etc.). In fact, the last few days I have been on pretty much a liquid diet. I still have constant pain, bleeding, mucous, urgency, etc. I am watching the inner lining of my colon come out in pieces every day and feeling helpless. After a couple weeks of dealing with symptoms, not being able to eat much of anything, stressing about side-effects and trying to figure out which direction to take, I am finally coming to terms with something.

The only treatments I have heard of and not tried yet are Humira, LDN, and FT (look it up if you don't know what this is - very unpleasant). All three of those have a somewhat limited success rate, and of the people who have seen improvement on them, I haven't heard of any who have achieved a solid, sustainable remission. They all see another flare-up within months up to around a year and a half. So either way I'm looking at more drugs, more symptoms, more side-effects, more dietary and lifestyle restrictions, and always "looking over my shoulder" since this disease is so sheisty. I have had a lot of ups and downs over the years, but I have not achieved a solid remission since my disease progressed to severe pancolitis almost two years ago (since my disease spread to my whole colon, for those of you who are not familiar with the jargon).

After such a long roller-coaster ride, I am exhausted of all of it. I know this blog is called "Fighting for It," but I have been fighting for a very long time, and I honestly don't see an end in sight. I have decided to use the last of the fight I've got left to get through the trials and tribulations of surgery. It is not a decision I have come to lightly or easily. In fact it's one I have been pondering since my UC first got really bad, and with each new drug, method, or treatment that does not work, I have come closer and closer to accepting this as a final option. It is a very personal and emotional decision to make - choosing to cut out a part of you - but a complete colectomy is the only way to be rid of UC for good, and I think at this point it is the path that makes the most sense. And emotionally, I don't think I can handle much more.

A J-pouch surgery is the most popular surgical option today for people in my situation. (The technical name for a J-pouch is ileoanal reservoir.) During this surgery, they remove the entire colon and rectum ( a procedure called a proctocolectomy), then use some of the lower small intestine called the ileum to create a new small storage area - a pouch shaped like a "J" that takes the place of the rectum - and then they route this new pouch back through the usual poop-chute. The whole process is illustrated in the diagram below:

(Courtesy of Eyvazzadeh & Reily Colon and Rectal Center)

In order to do this, the process requires two surgeries. The "new plumbing" that they create in the first surgery takes a while to heal before it is able to be used, so until it does I will have a temporary ileostomy. An ileostomy is where they take a part of the small intestine and bring it through the abdominal wall and attach it there so that waste exits through a hole (stoma) in my side and collects in an external bag. It is the same thing as a colostomy bag except that it uses the small intestine (ileum) instead of the colon. So I will have a poop bag on my side for about three months, and then I will go in for a second surgery to reverse the ileostomy and re-attach the new J-pouch for use.

I will certainly have a sort of "mourning" process as well as struggles (both physical and emotional) with the stoma, equipment, and recovery, but I have had UC for the majority of my life, and the idea of a life free of symptoms, drugs, side-effects, and worry about a disease is unimaginable. So surgery it is! Of course until that happens I will keep trying whatever I can get my hands on to find some relief, and if, by some miracle, I go into true remission, well then maybe I can postpone the surgery. But either way it will happen eventually because I'm out of options.

I have an appointment with a UC specialist at UCSF to get a second opinion and make sure we've covered everything, and I have also requested a referral for a consult with a renowned colorectal surgeon. This doesn't mean I'm giving up the fight; it just means I'm fighting smart. Though I may have to change the subtitle of this blog from "Adventures of an Immunosupressed Teacher & Athlete" to "Adventures of a J-Poucher Athlete," I will continue to keep you posted.