Newbie here. Diagnosed with Severe and Acute UC

Hi All,

I'm 28 years old and was admitted to hospital on 25th feb following several months of illness. As I expected (feared) I was diagnosed with UC and kept in hospital for 7 days on various drips and steroids etc whilst they got me under control. They said my case was ''acute and severe'' and the report says pancolitis which I believe means the whole thing was pretty knackered!

I had been going around for months not realising how bad it was and my GP was giving me various different anti-biotics thinking it was a bug. Looking back now I think he might've not realised how bad I was because I was going to work everyday and still going to gym etc. Although towards the final couple of weeks leading to my colonoscopy I was unable to even go gym and could barely work. At night my bed was soaked through from sweating which was so scary and I was being sick all the time.

I'm now on 40mg of Predisolone and 6 x asacol a day. And something else to control my stomach acid whilst on the steroids can't remember exactly what it's called. Having follow up blood tests tomorrow as my phosphate levels were still low and a follow up meeting at the hospital late next week.

I have been reading a number of threads on this board for the past few days and it has been so reassuring to me to know there are people out there who we can talk candidly to without fear of embarrassment or being too shy which I find I am in real life. I play things down and try to deal with things myself because I hate my family and friends to feel sorry for me.

I hope to be able to learn a lot from you all and get on with my life as normal as possible. I went right down to 57k (125lbs) so need to get back to around 68kg (150lbs). I'm off work now for a couple of weeks and getting to grips with my low residue diet. It's quite restrictive in terms of what I cannot have but contains lots of comfort food so I can't complain too much.

On a positive note I feel the best I have in months and starting to put weight back on, I'm only going to the toilet once a day and nothing unusual is coming out.

Anyway, it was nice to get something written down and no doubt I'll get to know you all more as the days and weeks and months go by.

Macca X

Good to hear you responded and got out of the hospital - instead of into surgury. Even better to hear that you have fairly normal BM after just a month on Pred and Asacol. I think the diarrhea and bleeding and mucous and urgency is a large part of what wears down most UC'ers.

I hope you are able to taper off the Pred in a reasonable time and to maintain with a low dose of 5-asa and possibly some supplements (e.g., probiotics, anti-inflammatory foods).

I read here of folks who had a flare, responded well as you did, and then some time later (sometime years) are a bit surprised by another flare and that the medications do not seem to be effective the 2nd time around. Often they report having discontinued their maintenance program. If you continue to improve, take care to establish a regimen of medication and diet and helpful supplements that is very vigilant about another flare.

kazbern, DBwithUC & Mary A - thanks for taking the time to get back to me with all your kind words and helpful advice.

DB - It's funny you should mention that I am ok within a month because It was more or less over night that I got ''better'' when given the steroids. The day before I had my colonoscopy I couldn't eat for obvious reasons, then when I was admitted to hospital following the procedure I was on a drip and clear fluids for two days because I was so badly dehydrated. So that was no food for a total of three days. My stool was still quite watery etc but with no blood. However, since I was allowed back on normal food (albeit low residue) from 29th I have been going to the toilet once a day and it is completely normal and solid.

I am due to start tapering my pred from 40mg to 35mg today, I guess this is where it starts to get interesting. I have a meeting on the 14th with my consultant and have made a huge list of questions for him. I am sure he will be unable to answer most of them due to the unpredictible nature coupled with a lack of understanding of the disease. I feel completely in the dark on so many issues. I have read and been given many conflicting hints and tips so it's nice to hear from people who have actually been through it all and properly understand. Thank you all.

So, what are the rectal meds? You'll have to excuse my ignorance as I've never been ill before or even to a hospital so I am still getting used to all the technical terms. Are they the ones you put up your bum?

Mary A. - Could you tell me more about the supplements you take and their benefits? I was told by my Dietian just to take the all in one multi-vitamin because if you take to many different types of supplement they all fight over the space to get into your system. I can't remember the exact wording but she was almost explaining it like an airport with too many planes trying to land etc. You get my drift...

As a final note I will say that although the thought of having a ''disease'' inside my body really upsets me I am the type of person who can deal with things logically and I am determined not to let this get the better of me. There's nothing I can do to change it so I need the serenity to accept it and move on. Up to now I have had a great life. My family, job and employer have all been incredible to me and without them I would be lost. I also am back at university part time with a scholarship from my company to eventually become a chartered structural engineer. I cannot let anything get in the way this dream so I will do anything and everything I can to protect myself from this illness. If that means mash potato and plain fish everyday with no alcohol then so be it!

PS I have not had a drink since christmas (when I first realised something was wrong with me) I am too scared to try one just incase it makes me ill. But the thought of a life with no alcohol is daunting, here in London pretty much every social event revolves around alcohol in some way.

How do you all find drinking? The doctor said to me oh you can drink if you like but it seemed very 'off the cuff'

PPS Sorry for the essay - got so much on my mind!

Love Macca X

Post Edited (Maccawings) : 3/10/2012 1:25:14 AM (GMT-7)

Theresa, thanks for the clarification. I have added this enquiry to my long list of questions for the consultant... he's going to love me!

Can anyone tell me what the Asacol actually does? What do the steroids do? Other than make you really hyper (i haven't sat still this week... yesterday I scrubbed my house from top to bottom... took hours but I really enjoyed it :-|)

I have given surgery a lot of thought as I know it could be a possibility due to my diagnosis, they even mentioned it immediately after my colonoscopy because I was so bad. My mum was in tears she didn't understand.

Do you have a permanent bag then? I would do it if I knew that it could be reversed. Narcissistic as it sounds I don't think I could cope with a permanent bag. I am extremely self conscious when it comes to talking about this to people. I don't think I could handle it if I had a bag and everyone knew. Maybe I just need to grow up a bit...

Maccawings,
asacol works topically, it's ph-triggered and opens up in your GI tract coating the lining of your intestines with medicine.
Prednisone and other steroids work systemically decreasing inflammation over your entire body.
my skin always gets amazingly good when on prednisone.
Prednisone can only be used for short periods because of the danger of becoming dependent on it, but it can be a life saver in bad times.
Asacol, Imuran, etc are maintenance drugs designed to make flares shorter and less severe. Most UCers are on some sort of maintenance drug for the rest of their lives.

Youre young, they will probably have new meds or possibly a cure right around the corner.
I had several friends die of cancer, I always believe that if UC is the worst thing to happen to me health-wise, it's OK, I can deal with it and it could be much worse!

I will not need a permanent bag. :) There are two main options for most patients following a colectomy.

You can get a J-pouch (they take the end of your small intestine and create a small pouch in the shape of a J which they attach to your anus so that you can hold waste and pass it like a normal person, although you will have around 6 soft bowel movements a day compared to a normal person's one formed movement) or a Kock pouch (they take your small intestines and create a pouch which connects to a hole in your abdomen, sort of like an ileostomy, but it is smaller and flat on your skin. To empty this pouch, you have to insert a catheter through the hole, which opens a valve that they place in the pouch, which allows the stuff to drain out. You'd do this about 4 times a day.)

If you choose to get the surgery while you are not experiencing a bad flare, your colon can be removed and the pouch made at the same time. However, if, like me, you have to go for emergency surgery, you risk not being able to make the pouch at the same time, either because your rectum is too diseased (for the J pouch, they keep a very small piece of it at the bottom called a rectal cuff) or because your body is too weak to handle it.

Two very good websites to look at are J-pouch.org (check out the illustrated pouch!) and BCIR.com (check out the learn more - how it works section).

If you have any more questions feel free to message me! I had my surgery just two weeks ago but I have gathered a remarkable amount of data since then, with the help of other people on these forums.

by the time you're on the board, you've been diagnosed. Seems to me (and this is my case) that I would have saved months of being on death's door had my GP decided not to be captain of the ship. To all with unexplained symptoms of this sort that don't seem to be getting better with antibiotics or BRAT diets, SEE A SPECIALIST -- immediately and get that colonoscopy. Don't fool with GPs.

Oh my gosh, Maccawings. Exactly what happened to me. Pressure to contain costs by HMO and the doctor's group led to seven ER visits and two expensive hospital stays. An early colonoscopy (and immediate prednisone course, which stopped the diarrhea like a faucet) would have saved tens of thousands of dollars, not to mention time lost to work and devastating illness and suffering.