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Posted 10/11/2011 4:56 AM (GMT 0)

Well, I have been hospitalized for 7 weeks now, and have been looking for all the resources i can possibly find, and have found myself frequenting this forum "lurking" and soaking up all of the valuable information and sense of community and support everyone here has to offer.

i am id say a third of the way down a long complicated road that i have come to see that most of you understand thoroughly, and decided that im not going to make it without becoming a part of such a caring and personally knowledgeable group. 

So here i am, and if you care to read, the following is my "story", as i feel it is appropriate as a new member.

In November not even a year ago, i had had bloody diarrhea multiple times a day and debilitating abdominal pain for 2 weeks.  the diarrhea increased to bloody stool every 15 min to a half hour, 24 hrs a day....i went to the emergency room and got sent home with diagnoses of GERD or IBS with probiotics to help.  I knew something wasnt right, so went back to the ER for the third time and someone took me very seriously.  2 colonoscopies later i was diagnosed with UC and spent 9 days in the hospital being stabilized and recovering.

Prednisone did the trick and i was on Asacol 4800mg/day for maintenance.  once in remission i was blessed to be virtually unstoppable.  nothing irritated my bowels at all, and it was as if i never had UC.  Then out of nowhere for no particular reason i had a flare up 2 months ago (end of August).  it started with soft stools multiple times a day, then progressed yet again to bloody stools every half hour, DESPITE catching it early and calling my GI doc and attempting to correct it before it got worse.  IT DIDNT WORK.  after 2 weeks of getting progressively worse, my GI advised me to go to the hospital.  2 flex sig scopes later, it was confirmed that it was infact a very severe flare up and i also had the pleasure of having C. Diff.  SO for those that dont know, these are two issues of which the treatments contradict each other so to speak....more iv prednisone, tried imuran, enemas, then remicade. 2 infusions that didnt work. second infusion gave me excruciating joint pain. i felt like every bone in my body was broken, or i was going paralyzed.  i spent a month in the hospital trying to "medically" treat it and was told that surgery was all that was left, as they had given me "maximum medical therapy" with no success.  i was upset that i spent a month fighting it only to have to have surgery. Well, although i was upset about it, after surgery, there was no doubt in my mind that it was the right thing to do.  about all 5 ft of the colon was removed, and it was 20lbs, and 10cm in diameter...most were blown away by how severe it was, incuding the surgeon. (PS i saw the pictures). 

tonight is my last night in the hospital and i felt i needed to get started on this forum, as i have a long road to travel and am gonna need the kind of support i see here.

im here to help as well, though i will say, i may have more questions than answers at this point.  i am in it for the long haul though, and hope that i can one day provide as much value as you all have already provided me.

--Nate 

Posted 10/11/2011 11:57 AM (GMT 0)
Nate, welcome! You have been through a lot in a very short time. You must have had a very aggressive form of UC. I went through a lot of the same treatments, but they'd work for me for a while, so mine was a bit more drawn out that yours.... but it sounds like you are on the road to much better health. Thanks for sharing your story.

Feel free to ask and ask away. Of course at the beginning you have more questions than answers, we all did. I was blown away by how generous people were to me when I was there, and then when I started to have a few answers, just wanted to help others as others had helped me. But in due time....
Posted 10/12/2011 12:35 AM (GMT 0)
Ask all you want we love to share!
Posted 10/12/2011 4:10 AM (GMT 0)
Welcome! It is crazy how fast a severe flare of UC can come on. I had made a couple of trips to the ER for severe flares during my 10 year history with the disease, but never stayed overnight, and those bad flares quickly resolved with Prednisone. Mostly my UC was moderate. I didn't have many true periods of remission, but bad pain and bleeding were my main symptoms. I could still do mostly everything with my disease, and with a few exceptions during bad flares, was generally not chained to a bathroom and certainly never thought I would have to have surgery. Then, bam, last fall I had a severe flare after the best 4 month remission I had ever been in. I too called my GI the first day I saw blood... but it was no use. In a little over a week's time, I went from being symptom-free to going the bathroom 28 times a day. All my maintenance meds stopped working and Prednisone did nothing. I was admitted to the hospital and continued to declined pretty quickly. Even large doses of I.V. steroids were not helping. After about a week in the hospital, I tried an infusion of Remicade to avoid emergency surgery. Fortunately, Remicade ended my flare like a charm in only 5 days... but the night I got out of the hospital, I developed that same joint pain you described. It was the most excruciating thing I have ever felt, and to this day, it is the most traumatic thing I have faced in any of my days with UC or post-sugery. You describe it well with the broken bone analogy. It was absolutely horrendous. The scary thing was that my doctors had never seen that reaction and couldn't tell me if it would ever go away. Like you, my case was called "refractory to medical management." At that point, I wanted surgery so badly. My biggest fear was that something would prevent me from having the operation. The one infusion of Remicade did heal my colon enough to give me time to consult with a top CR surgeon and have ileostomy surgery a month later when I was in better health. (I decided I wanted a permanent ileo instead of a j-pouch...but both are great options). Fortunately, all that pain from Remicade went away in 6-8 weeks and never returned. Did your pain from it go away?

Healing from surgery is tough, but compared to what you have already been through, you may find that it isn't as bad. No surgical pain for me even touched the pain I felt from my body's weird reaction to Remicade. At least you will be improving and will no longer be getting sicker and sicker! Instead, you will be getting healthier and healthier. I am now 11 months post-op and am amazed every day at how good I feel and how far I have come since last year around this time when I was so sick and in the hospital. I am back to doing most things and my life feels very normal.

Keep asking lots of questions and best wishes as you continue to heal!
Posted 10/13/2011 5:36 AM (GMT 0)
thank you for the responses! it was nice to see whom ive noticed to be some of the "usual suspects" welcoming me to the board....

blueglass, i certainly did have a very agressive form......that was confirmed after surgery, though i have to say, i fought it tooth and nail for a month in the hospital before i had no other options. i was upset that i spent so long fighting it only to have to have surgery, but as i said, after seeing the picture, i knew it was the right choice!

summerstorm, thank you, its nice to have people you feel you can trust even when you barely know them!

blueheron, thank you SO much for telling me your story as well. i cant say im "happy" to hear what you went through, but it is comforting, and amazing how similar of a course we had......as far as the remicade joint pain, its very strange, as most of it went away, yet it still lingers in weird joints like my left wrist, right middle index finger knuckle and right base thumb knuckle...weird....it sometimes travels as well, but the majority of it is gone and it isnt even CLOSE to as bothersome as it was...

anyways, ill be around, thanks again all!!
Posted 10/13/2011 11:33 AM (GMT 0)
Wow, I'm a "usual suspect," I'll take that as a cool thing....

I fought surgery tooth and nail for years.... I think many of us, after the fact, think it'd have been better to have the surgery earlier, but you have to be ready, and it's a big thing to wrap your mind around...

Seems to me that people have to struggle w/the decision, either before or after or both.... I go to a support group sometimes and there are a lot of people there who have cancer, and I think that is much harder emotionally.... they were feeling fine, and then all of a sudden they need to have this surgery, and also chemo/radiation.... whereas a lot of the people w/IBD were so sick and now are better... it's just a big deal to lose your colon, not a simple thing....
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