Posted 3/5/2013 10:01 PM (GMT 0)
Greetings everyone. This won't be a short post as I'd like to share as much as I can, but I'll try to condense it as much as possible.
In the summer of 2009 I had some of the worst pain i ever felt in my life in my abdomen. I went into the hospital where they did several tests and discovered that my gall bladder was extremely inflamed and needed to be removed. I was fine for awhile, health seemed perfect.
During that time, I was a pack a day smoker, but made a personal choice to quit on December 31st, 2010. I smoked my last cigarette at 11:55 PM that night, and have NEVER smoked a single cigarette since. A great triumph right? Well, now I am not so sure..
During the year of 2010 I noticed that I started getting diarrhea in about February, and over the course of the next year it got worse and worse and worse. Eventually, I landed back in the hospital.
I was diagnosed with ulcerative colitis in February of 2011. I started with the basic treatment, mesalamine (Lialda specifically as I could not afford or get on a drug program for the Asacol, but the Lialda I was able to). When this didn't work, my doctor then put me on MP 6 which I was on for several months. I cannot remember specifically when during these times, but I was also on Prednisone on and off, up to 40 mg dosage at a time.
This same doctor informed me that it is 'possible' that my smoking, and the nicotine, was keeping the U.C. from presenting itself earlier in my life. It seems kind of crazy to think that smoking was keeping my health from becoming what it is today... you will see as you keep reading.
Near the end of December 2011, things took a turn for the worst. I had unbelievable abdominal pain and went into the hospital. I can't really recall what happened or what was discovered or solved, but I know what happened next made things INFINITELY harder for me thereafter...
A month or so after I went home from the hospital, sometime in February, my doctor called and told me that I had something called "c.diff", that they failed to inform me about while I was in the hospital.
He immediately prescribed and had me start taking Flagyl to get rid of the c.diff, which seemed to work in just a few weeks.
However, during all of 2012, I had constant recurrences of c.diff and landed back in the hospital for a few days up to a week at a time almost EVERY single month of 2012.
I have been on and off vancomycin and even Fidaxomicin to try to erradicate the c.diff. Eventually, the infectious disease doctors at the hospital became involved and recommend long term vancomycin use. This seemed to help and I have been c.diff free since December.
However, in the last week I thought I may be developing c.diff again despite being on the vanco. The c.diff came back negative, but they kept me anyway.
The most frustrating part is having so many doctors tell me so many different things about what I should and should not be doing or what drugs I should or should not be taking, same with food and etc.
I've had many x-rays, CT scans, sigmoidoscopys, colonoscopys , you name it. I was able to see pictures from the colonoscopy I had last year, and it did indeed reveal very inflamed reddish looking colon. My former G.I doctor used the reference "raw meat" to describe it as I recall :(
Also, during these c.diff flare ups I started Remicade for my colitis, but because of the constant c.diff I had to discontinue Remicade. There was one point I last year where I thought the Remicade was making a difference, but when the c.diff kept coming back they just would not allow me to be on the Remicade any longer.
In the last month I started taking Humira, but I've read that it can take up to 4 months to even start working and, even if it DOES work, I've also further read that it could work for up to a year and then just stop working all together also.
Which brings me to the most terrifying thing of all: surgery. Many doctors have recommended at this point that I have my colon removed to solve all of these problems. This really scares me due to the extremely invasive nature of the surgery...
Through all of this I've seen my body undergo some awful changes, such as my weight increasing from 220s-230s to nearly 300 pounds, all the way down to 170 and back up to 200ish again, mostly the weight gain from prednisone having a side affect of my appetite doubling, to the c.diff/colitis 1-2 punch combo causing me to have no appetite whatsoever and rapidly lose weight.
I've also tried the Rowasa enemas and the Canasa suppositories (although admittedly I did not use them for more then a few days at a time).
However lately, the last few weeks, things have seemed to be worse then ever. I am having such frequent stools that it seems I cannot control it or sleep adequately at all. Things seem worse then ever. I am having constant frequent stools, however since I have not been eating at all lately very little is coming out, but it is still the frequency and urgency issues that are the most troubling to me.
Also, since that December 2011 time when I went into the hospital, I have had worsening and CONSTANT abdominal pain, for which I've been taking narcotic pain killers (percocet and oxycodone). I realize these are bad for the G.I system, according to the G.I doctors, but I don't know what else to do to get rid of the pain short of surgery...
When I started the Humira I did not take the loading dose, my G.I doctor told me since I'd been on Remicade (even though it had been since last summer) that I should only start with and continue the 'maintenance' dose of 1 shot every 2 weeks. I had a slight reaction of itching all of over my stomach and back and arms and legs, but this subsided eventually. Not sure if it will happen after each shot or not as I've only had a few so far. I have yet to discuss most of the recent stuff with my G.I doc, but I have an appointment upcoming in a few days with her.
I still have some Canasa in the fridge, not sure how old it is or if it lasts only for so long, can anyone comment on that? I was thinking about maybe trying to use these every day for a week to see if it would help calm things down and get me back to where I was so things are somewhat controlled...
Basically right now where I am is in a deep state of depression and feel completely and totally LOST as to what I should do next, whether or not I should consider surgery, or if I should give the Humira a chance and try gosh-knows what else. I've seen many people talk about very strict diets and such, but honestly I really REALLY have a tough time with that as one of my few joys in life is enjoying the foods I want; not necessarily talking about bad food like fast food, even though I do like to indulge in those from time time, but have not had any recently so that cannot be a contributing factor to my worsening health lately. I have never really noticed ANY difference in changing my diet, whether it be eliminating dairy or other things for awhile, it doesn't seem to matter.
In fact, I am what you could say an 'addict' to soft drinks. However, the last few weeks when my symptoms got worse, I've had NO soft drinks due to simply not being able to afford them cuz of tough times and expensive medicines and etc, have had to sacrifice a lot of things just to afford medicines. I know sodas are bad for your health overall, and I've been told they could be making my disease worse specifically, but due to recent events I am starting to doubt those were a contributor either...
I apologize if this information all seems kind of jumbled and disjointed, but I'm just trying to pull things from my memory as I can recall them. If I can think of anything else I will edit this post or comment on it and add anything that I may have missed, sorry if this seems like such a long post, I just want to provide as much info as possible to try to get some kind of help ANY help I can...
For the first year or year and a half I was able to keep my chin up and have faith that I would eventually be able to get things under control, but it seems I am only getting worse and really just, don't, know, what, to do :(
Sincerely yours,
Jonathan
~~~
28 y/o male, Ulcerative Colitis w/ recurrent c.diff for the last year (in remission since Dec 2012).
Currently on: 20 mg prednisone daily, 5 ml vancomycin every 6 hours, 40 mg Humira self-administered shot, 30 mg Oxycodone every 8 hours for pain (lately been trying to use 15 mg every 4 hours for worsening/increased pain)