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Reply to "Remicade"

Once again, thank you for the responses on this topic.  Just a couple of further points to my situation.  I had my Total Colectomy back in July of 2000, almost 19 years ago.  I had it done all in one surgery.  The doctor had initially told me that he could possibly do the surgery to hook up the j-pouch all at once same operation) but there were a couple of things to consider.  First, he told me well in advance that he would not attempt doing the full hookup in a single operation if I were on steroids at the time.  He said it had to do with scarring a d allowing it to heal first.  He said that if I were completely off steroids, during the operation, he would make the decision whether to give me an ileostomy or hook me up to a j-pouch in one shot.  I actually had my surgery scheduled for April.  But after hearing this, and since I was once again in the process of weaning off of prednisone as I had done so many times previously, I told him I wanted to wait at least another couple of months to try and get off the prednisone first.  This way I would have a legitimate shot at a having a single operation to get it all done.  I can tell you that the surgeon was not happy with my postponement and made that clear to me.  I decided to stick with my plan and not get pressured into doing it on anyone else's terms but my own.  Besides, if we are doing this for a long-term improvement,  why the rush?

Wouldn't you prefer 1 operation rather than 2 for the same eventual outcome?  Having said that, my biggest concern was just that -- the outcome.  I asked the question "does either scenario give me a better chance for a better long-term prognosis, whether I have it done in either 1 or 2 operations?"  The answer was not likely.  So, if getting it done in 2 steps would give me a better long-term outlook, I certainly would have been willing.  Since my surgeon didn't endorse that, I decided to keep the single operation option available and leave it in his hands during the operation.  My new scheduled date was July 14, 2000.

I woke up from the surgery just as I had been told to expect -- like I had been hit by a truck.  It was a gruesome and ugly few days.  I vividly recall being in total and complete pain, with the pain getting even worse when I moved even slightly. I know they tried to get me up and walking the next day which was not something my body wanted.  Then I remember laying in the hospital bed puking up all this green vile many times.  It was nasty.  I couldn't talk, cough, sneeze, or laugh without horribly intense pain.  The biggest issue I had in my recovery was that for some reason I was unable to have a bowel movement for 4 or 5 days.  It caused tremendous pain and distress.  I am not sure I recall exactly what the cause was but eventually it got sorted out after tests and more tests.  Then, it was diarrhea around the clock 25+ times a day everyday.  I vividly recall the horrible ongoing pain in my anus from wiping those 25+ times a day.  There were no bidets - hand-held ones or the ones I have now that are connected to the toilet.  It made for absolute agony to go with everything else I dealt with at the time.  My recovery was very long and very slow.  I had no way to control was seemed like non-stop diarrhea around the clock.   I remember a few weeks later talking to a cousin on the phone who had IBD.  She had asked me about the surgery and if I felt it was the right thing to do as she had been considering her own options.  I cursed that surgery again and again and was even angry with myself for going through with it.  As difficult as it was to live with UC, the mess I was in after that surgery was clearly much worse.  The only difference was that I was off prednisone -- or so I thought.  However, they gave me more prednisone after the surgery for a while to help heal me!  

My life was a difficult mess for months.  My weight -- I was in decent shape at about 165-170lbs before the surgery.  After the operation I was down to 143-145 and felt like a skeleton of my old self!  Finally, with the diarrhea frequency not really letting up for about 6 months post-surgery, I asked the doctor if I could try what seemed to have worked at times before my surgery.   Codeine.  So, I started taking Tylenol 4s to help slow down my digestive system and also deal with the constant anus pain.  It helped immediately.   It had helped pre-surgery but was frowned upon due to the risk of a rupture I was told.  Now, that risk seemed to be gone as my colon was removed so the doctor didn't have an issue if it helped me in my miserable situation.  Eventually I has my prescription switched from Tylenol 4s to straight codeine without the Acetophetamine (as it was the Codeine that I needed most).  It was Codeine Sulphate or Phosphate or whatever the drug company labelled it.  It took 360mg daily spread out over 3 doses 120-120-120 to do a decent job of controlling my diarrhea.  I have been doing this since January of 2001!  Only about 4 or 5 months ago when consulting with a new family physician, I switched to slow-release Codeine.  Now, in the morning I take one 150mg slow release tablet with a 30mg regular one.  Then about 12 hours later in the evening I do the same again.  Previously, all those years I had been taking 4 of the regular 30mg tablets first thing in the morning (before breakfast), around 2-3pm, and again before bed.  My body was so used to it.  Most days it seems like not enough and I dealt with the withdrawal symptoms as well as increased diarrhea as I got into the late stages before my next dose.  The idea of the slow release Codeine is to help alleviate those symptoms.  I am not sure it does a whole lot in that regard but it's nicer to take 2 doses per day rather than 3.  I still seem to get the withdrawal and diarrhea symptoms as the Codeine wears off but it maybe a little less intense.  

Fast-forward to 2016.  A GI I was seeing did his tests and observations and diagnosed me with Crohn's.  He said that my small intestine is also inflamed in addition to my rectal area / the cuff of what's left of my large colon.  He highly suggested Humira as all the other stuff never seemed to work (ie) antibiotics, suppositories, and enemas.  I did Humira for 4-5 months with no benefit.  Blood tests showed that a majority of the drug wasn't getting into my bloodstream.  So, he then suggested Remicade.  Since my family and I were relocating, I decided to wait till we got settled.  Now it's the middle of 2019 and after seeing a new Gi in another province, and doing all of the tests once again, Remicade was suggested.   So, here I am on Remicade!

Just to update, my first infusion was June 20.  My next one is 2 weeks after that date.  Not sure what the percentages of Remicade's success or effectiveness rate is after the initial infusion although I would love to hear from others.  To be clear, I have not noticed any benefit as of yet.  I don't think I can report any side effects either.  But so far, I haven't noticed any benefit whatsoever. 

That's my story in a nutshell   Again, I appreciate your responses.  I just wrote this entire post while walking on the treadmill at my local fitness centre!!!

 By the way, if this long post helps anyone in anyway, then I suppose it was worth it.







Last edited by capper
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