How sick were you at the time of surgery?

@ddd~ I do know that C Diff causes UC like symptoms and is surely contributing to some of my problems. I can pinpoint the day that the C Diff really started to bother me because of the fever, exhaustion and increased D that began that day. But, I had been in an awful flare for 2 months before the C Diff started....had lost all my weight in that time and haven't slept more than 2 hours at a time since this all started. So, while the C Diff is making me worse right now, I know that I am also battling a terrible flare. My UC is steroid refractory and I am not sure if the Remicade is working, but it may be too soon to tell. We'll just wait and see. And yes, I am eating as much healthy food as I can with none of the crappy canned drinks. I have no appetite at all is the biggest problem. I do have a scrambled egg with cheese and avacado every morning though, so good call on that! :) Have been eating lots of chicken, applesauce, banana, chicken soup made from the bones of the chickens I roast with some well cooked carrots/zucchini/mushrooms...sometimes spinach. Almond milk, juice....stuff like that. Any other suggestions would be great!

@ByeBye~ So sorry to hear about your mother in law. I have heard before the C Diff complications can be fatal with the right combination of circumstances, and that is scary for sure. I think I'm feeling a little bit better after a couple days on the Flagyl, so hopefully that continues.

As always, I feel something of an anomaly and the odd one out. Sometimes I think the only way people believe you are really sick is if you look like a skeleton and I don't: I probably look the picture of ruddy health at the moment. The apparent 'competitive' nature in this thread over who is/was the most sick or thinnest prior to surgery also makes me feel uncomfortable.

I'm booked in for a subtotal colectomy and end ileostomy on the 20th Feb, so I will be having surgery very soon indeed. Yet I'm not going 30 times a day and I've put on what feels like a ****ton of weight, not lost it. (Which bothers me, if I am honest.) Okay, part of that - especially the weight gain - is surely down to the lovely Pred and barely being off it for the past 16 months.

I actually did lose a lot of weight, but it was over a long period of time and I had no trouble putting it back on. My conclusion is I lost the weight due to undereating, not due to malabsorption.

Anyway, my story begins in September 2011, I suppose. I had been ill with fevers, diarrhoea, and fatigue before then, but no hospitalisations or surgeries. But this time I relapsed with a 40C fever, with excruciating wave-like obstruction pain to boot. I was on Remicade and terrified. I went to A&E and was admitted for a few days, but my GI seemed to assume it was norovirus and did not put me on steroids. I was discharged, felt very ill over the next few days, and the excruciating pain returned: saw my GP who, upon seeing me, instantly called an ambulance. He knew I wasn't faking the pain. Spent a further 9 days in hospital, where I learnt that my CRP had been 350 and that an abdominal x-ray showed a dilated colon with the description of toxic megacolon. This time I was put on iv steroids.

Went on a liquid diet for a month after leaving hospital. Got through November and December, but in Jan 2012 I relapsed and ended up back in hospital. More steroids. Tapered off. Relapse. Another week in hospital. This happened a couple of more times during 2012.

It was always the pain which drove me back to ER, but it changed somewhat from the original total obstruction pain. During a flare-up, the slightest thing would trigger it - eating, drinking, going to the toilet. And, while I was not going 30 times a day, I was certainly going several times a day, often passing a stupidly tiny amount, but still enough to lay me out on the floor with pain for up to an hour. I developed anal fissures and my rear end burned nearly constantly: passing anything became excruciating. Wiping my bum was like wiping an open wound. I also felt dreadfully illl; sometimes had fevers, sometimes not.

Weird year, looking back upon it.

It does upset me a bit that I don't think many people know just how ill I've been. I'm not out for sympathy and 'there there's'. But just because I'm no longer a walking skeleton doesn't mean I wasn't in pain and ill. The surgeon has wanted to do surgery all along. All tests have shown Crohn's colitis and a stricture. And I'm now completely Pred dependent. So yeah, I think I am "ill" enough to have surgery. Despite not having dropped 30lb in two weeks, or whatever.

Post Edited (NiceCupOfTea) : 2/16/2013 5:34:57 PM (GMT-7)

You literally could not have served more to prove my point if you had tried.

I am angry beyond words at the moment about being patronised. I have been deathly sick without any dramatic weight loss - does a CRP of 350 and toxic megacolon mean anything to you? Or fevers of 40C? Not to mention intolerable pain.

A constant dose of 40mg Pred is barely maintaining me at the moment. If you folks had been on a high dose of Pred for months on end, maybe you might not be suffering dramatic weight loss either. You want to be chubby: go on Pred.

It's okay, colitiscanuck, apology accepted...

I have a feeling deep down I overreacted anyway. If you read my last post in my thread, I said I would probably look back and cringe at what I wrote at a later date :-/

If I was too much of an ass, then I apologise for that.

@NCOT~ Being the OP of this thread, I am very sorry if anything I, or anyone who responded to my questions, wrote offended you. I asked the question because I am seriously considering surgery. Many people on the UC board wouldn't agree with my choice because i wasn't diagnosed very long ago, and I definitely have not tried every option out there. Thing is, who cares what anyone else thinks?? I know how miserable this disease is making me and I know why I think surgery could be a very good option for me right now.

The only reason i asked the question was out of fear and concern for my well being. I wanted to know how sick people were at THE TIME they underwent surgery, because the sicker you are, the more drugs you are on, the higher the risks. I was simply looking for some peace of mind that a successful surgery is very possible even in my poor state of health. In no way did I see anything on this thread as a "competition". Some people who answered were very sick at the time or their surgery, some were not....but that doesn't mean they weren't miserable from this awful disease. Everyone who did respond helped me very much, no matter what their situation.

Again, I am very sorry that I started something that rubbed you the wrong way, certainly never my intent. I hope you feel much better very soon.

I suffered for 25 years with regular flare ups as well as periods of extended remission (6-7 years). The last flare up lasted 8 months and I was literally on my way out....couldnt keep anything in my stomach even because colon was so inflamed. I was so happy to have it removed and have felt like a new man since. I wish you well and I think we'll see you posting positive comments within a short time after your surgery. God bless you.

UCwhat?

I had blood work done 1 week before surgery..when I went to see Surgeon for pre-surgery visit, he stated "..you won't make it to surgery.." reasons? - low blood protein, boderline kidney failure, massive dehydration, etc....

Plus, my hands/feet were numb, tongue was numb, was terribly nauseated, couldn't think straight, etc....cool huh?!

But, when I drove myself to emergency room, and the put me in bed, I got a calm over me that was unbelievable....I knew I wasn't getting out of hospital again until after surgery....

Hope you feel better, but you don't need to feel perfect for surgery..actually, compared to others, I was doing pretty good!

God Bless and best regards,
jimmy