I have a long list of illnesses (see it here). In 1995 when I was 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 fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Wednesday, July 18, 2012

Remicade Roadblock

  UC = ulcerative colitis     GI = gastrointerologist     Remi = Remicade     BM = bowel movement  

About a half-hour into my fourth Remicade infusion on Monday, I started feeling a severe tightness in my chest and difficulty breathing as well as intense and painful itching inside my right foot. After noticing how flushed I was, the nurse stopped the infusion and called my GI. The doctor told her to push 125mgs of hydrocortizone and then continue the infusion at a slow drip rate. When the nurse originally stopped the infusion, my breathing slowly returned to normal, and when she gave me the shot of steroids, the pain and itching in my foot died down. After she continued the infusion, I developed some very mild itching in my feet, but that was it. That was two days ago.

Yesterday I woke up with intense fatigue, severe joint pain all over my body (could barely move my right hand), swollen fingers, loss of appetite, and a mild headache.  I took an 800mg ibuprofen (left over from my sprained ankle) which helped with the joint pain.  This morning I woke up with all those same side-effects except the headache had gone from mild to splitting and was NOT remedied with the ibuprofen.  In fact, it's still killing me as I write this.

I had an appointment with my GI this morning.  Sometimes our bodies can create antibodies against the Remicade, so she ordered the bloodwork to test for these antibodies.  However, she said that with the reactions I am having my body is no longer tolerating the Remi, and she doesn't want to risk another dose.  This means our only options left (according to tradional western medicine) are Humira (weekly injections that are only about 40% effective for UC) or surgery to remove my colon.  She knows that I am young and want to put off surgery as long as possible, so she's sending me to a couple of UC experts located at the University of California, San Francisco.

There is actually one other drug out there that the doctors don't know about.  It is an off-label use of the drug, so not really discussed in the medical community but well-discussed by patients on the UC message boards and responsible for quite a few people going into remission.  It's called LDN, or Low Dose Naltrexone.  I won't go in to all the details about how it works here on this blog, but you can find out more about it at this website: http://www.ldnscience.org/.  I asked my GI about it this morning, and she had never heard of it, which meant she was hesitant to prescribe it since she knows nothing about it.  She said the experts in the city might know more about it and that I should ask them.  Either way, I'm going to try to get on it before I try Humira or surgery.

The good news is that since I was able to complete my infusion, I have a good two months to figure things out before that dose wears off.  Wish me luck, and I'll keep you all posted when I hear from the "experts".



T H I S    W E E K ' S    H E A L T H    L O G
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My Condition: Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms: Occasional (mild) abdominal pain, 2-3x per day.

Prescription Meds: Remicade, Asacol HD (4800mgs), nightly mesalamine enema.

Side-Effects:  Severe headache, joint pain, fatigue, loss of appetite, swollen fingers, itchy feet, chest tightness/difficulty breathing during infusion.

Supplements: Creatine, BCAAs, CLA, glucosamine, whey protein (post workout), casein protein (before bed), L-Glutamine, Omega-3, calcium, vitamin D, vitamin C, biotin, multi-vitamin.

Diet:  Breakfast - Kashi Go Lean cereal & soy milk.  Snack - Activia yogurt.  Dinner - turkey burger, sweet potato.

Exercise:  None so far this week.

Stats: Height 5'7", weight 150 lbs, body fat 18%.

Have Tried: Imuran, Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.


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7 comments:

  1. I did when I was at my worst a little over a year ago, and it didn't seem to do much, but I was in pretty bad shape back then. I do think I should try some more diet modification, especially if I go on LDN, as I heard they work great in conjunction with each other. Will have to look more into it, as everyone has different recommendations for what to cut out of the diet for UC, and if you did all of them you'd be left with literally nothing, LOL. I do know that many years ago when my UC was mild, a diet that worked for me was to cut out all meat, wheat, dairy, processed foods, fatty foods, and sugary foods. It was very hard to stick to 24/7, though, and with diet modifications, you have to be pretty strict about it.

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  2. Why are you taking Ibuprofen??!?! It causes internal bleeding in UC sufferers (look it up!) - NOT a good idea. Take acetaminophen instead.

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    1. I've had this disease for long enough (seventeen years) that I know all about the risks associated with ibuprofen. I have a lot of experience with ibuprofen over the years (recommended by my doctors for various other issues) and know exactly how my body reacts to it. Which is usually... no reaction at all. (However, I am still careful about using it.) I was in a lot of pain and needed immediate relief, and the ibuprofen was the only thing I had in the house that was prescription strength. At the time my UC symptoms were almost nonexistent, and since I just had a fresh dose of Remicade, I was not too concerned about my UC symptoms reappearing. And guess what... my symptoms actually improved that week. (Going from a dime-sized drop of mucous every few days to none at all. Yay!)

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  3. YOu seem really strong and motivated, it seems worth it to give LDN and diet a try before more extreme stuff. I know of a few people who have done very well on it -- seems to be pretty low side-effect -- its just that the GI specialists don't know much about it. Good luck

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  4. I saw your post on HW. Have you considered fecal transplant? Has helped my son greatly.

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  5. Hello, Anonymous (both of you). Thank you for your comments. However, after reading about many people who have tried both LDN and FT, I ultimately decided I was not a good candidate. First of all, my UC was so bad that nothing was doing much good against it... and since LDN and FT are both considered complimentary medicine, I do not believe they would have been strong enough to do much for my situation. Secondly, people who do LDN or FT have to still stick to pretty strict dietary and lifestyle guidelines for it to work. I have never heard of either one working very well without food restrictions to go along with it. And lastly, anyone I heard from who tried it didn't have success for very long. It was spotty (maybe some improvement but no solid remission), and within months they were in the midst of another flare, often blaming it on something else, but a flare nonetheless. I think they would be good treatments to try for people with mild or even moderate UC, but mine was severe pancolitis. I felt I needed more drastic measures, and I didn't have time to wait around to see if any other fringe methods would work because my disease was slowly taking my life away, piece by piece.... which is why I ultimately chose surgery.

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