I'm officially a statistic

Basic jist of the story is that I came in on Tuesday to see my GI at 8:30am. By 9:10am, he had me in emergency, severe dehydration, malnourishment etc and have been in hospital ever since.

I am now officially a statistic as no UC treatments work for me.

Probiotics - reduced gas, but doesn't do much else;
Fibre - helps with symptoms but nothing else;
Garlic - helps with gas, but nothing else;
Olive leaf extract - great for coughs, but doesn't do much for UC;
Salazopyrin - Doesn't work any more;
5-ASA's - Makes colitis worse;
Colozide - the more I have, the worse I get;
Rectal 5-ASA's - cant keep em in and not effective in proctitis;
Rectal steroids - cant keep em in and not effective in proctitis;
Prednisone - doesn't work any more;
Hydrocort - makes me insane;
Abatacept - works, but trial finished so can't get drug;
Golimumab - trialing, but no luck as yet;
The list goes on.....

So yeah, they are talking surgery now... Bloody wonderful.

Did I mention I am allergic to pain?

What about Remicade or Humira?

:)

I am truly sorry to hear this...I know you are SO adamantly opposed to surgery. But you can't fault yourself if you need it- you have done everything humanly possible to avoid it. When it's time, it's just time, that's it. God, the last thing you should worry about is finding a partner! Anyone who is bothered by a bag would not be the sort of person you'd want to build a life with, I can guarantee you that. Would you choose a j-pouch? Cause then it'd only be temporary. And honestly, don't you find some measure of relief in surgery? I mean, it'd be over...all the searching for a new treatment, the cramp in your lifestyle caused by active UC, the overall hassle. Well anyway- good luck! Just get yourself as healthy as possible & go from there... I'm sure you're emotions are all over the place right now! I empathize.

Severin, I'm sorry to hear this. You've fought the good fight. You're a smart guy who looks life right in the face, I know you can get through this. And I've still never heard a j-poucher say they regretted having the surgery.

Hoping for good things for you.

I certainly can relate.  I hope you can find some hope in the future,  It is so hard when you loose that.  I pray for your healing and wish you big hugs...in the meantime, hang in there.

love to all here

bob

i am sorry to hear that you have had such a hard time. I really hope you can get some help and get to feelign better.
Surgery (bag or j-pouch) is not a death sentence, it's not the end of your life, so many people get the wrong idea about it, because it is such a big change and for some reason it seems that people with ostomies aren't viewed as right or something. Not sure i explained that right. Truth is, it's going to be the beginning of your life! noone will know unless you tell them, and it will not keep you from doing anything that you want to do! it will allow you to do things you can't do now! and yeah, you might get annoyed with it, or bummed everyonce in a while, but that will be temporary. For instance, last night me and a group of friends went to Hickory Alive (it's like an outside concert thing) well unless you eat in a restuarnt, you would have to use a port a potty, and i was thinking, it is going to be sooo annoying if i have to empty this thing there, but then i thought, you know without this thing, i wouldnt' be ABLE to go at all!!!
I have, like so many others, finally gained back all that i have lost, oddly enough by losing a piece of my body!
So anyway, that was the long way around to tell you that i know surgery is scary and i know you are freaked out, but i promise it will not be as bad as you think, and that you will be happier!
good luck and i will keep you in my thoughts and prayers

I'm sorry, Severin. But at least you can say that you pretty much tried everything to avoid surgery. I'm afraid of the surgery and the bag, too!

Good luck and keep us updated!

Severin - Im very sorry to hear that.  I really wish something would work for you. I know completely how you feel. I have been flaring for 5 years now and life has been miserable but I refuse to give up! And nor should you.

You say Abatacept worked. So, why cant you stay on it? I am also on the trial, and it is still running. Infact, they are still recruiting. I was told that all trial participants will continue to receive the drug until it gets a license as a treatment for UC.  Maybe you should look into this.

Hope you feel better soon

Take care 

Severin - OK, It is a shame that they cant be more flexible with the dose.  Where you on prednisolone when you went onto Abatacept?  If you tapered, did your symptoms worsen even though you were on Abatacept?  As, since I started tapering my pred to a very low dose I think I am starting to flare :-(   Did you experience this?

Take care

Sorry to hear that uc is forcing your hand.

I may be off base, but in a couple of posts you've mentioned that you're concerned an ileostomy will hamper your search for a partner. I'm a bit older (a bit) and if experience is any guide, I've found that the older men get, the less concerned they are with superficialities and the more willing they are to settle down. If a permanent ileostomy is the "worst case scenario" I don't think it would ruin your chances of landing a partner. . . and maybe having control over uc will allow you to hit your stride at just the right time.

Severin, it is a shame that the treatments haven't worked for you. They only helped Bratcat up to a point and then she would flare again. And she couldn't use prednisone as a means to get her out of flares indefinitely. Surgery was very scary for her (and us). There is always lots of what ifs and what will be's. But going in with a positive attitude instead of a defeatist attitude will help alot. When you are ready to accept that surgery may be the right answer for you, try to embrace it (as best as possible). Look at it as the beginning of a new chapter in your life.

I hope you have a good support system (family, friends). I think that is very important. Lean on them during this time and after surgery. It won't make the pain go away or the healing go quicker, but they can shoulder some of the anxiety and frustrations you will have. And they will be able to give you that push or pull when you need it.

As for pain, luckily there are pain meds! And the pain won't last forever. Bratcat had an epidural in the hospital. Came home with darvocet (percoset made her almost faint in the hospital). She only takes one pill at night to sleep (not every night). Sometimes she takes tylenol during the day.

My brother felt exactly the same as you. He fought with his UC for 4 years always rejecting surgery. He flared a lot of this time and was hospitalised on numerous occasions. We as a family were all telling him to have the surgery to get his life back but being in his 20's and single like you he didn't want to do it. Eventually at the age of 28 he had the surgery, that was 7 years ago. He didn't opt for j-pouch so has the bag. The only regret that he has now is he didn't do it sooner. He can't remember what it was like to be ill. He is now married with children (met his wife after surgery) and lives life to the full. I was diagnosed with UC 2 years after he had the surgery and although my disease is not as bad as his was it does seem to be getting harder to control. If it ever came to it - yes, surgery would be scary for me but at the same time I can see how well he is.

Best wishes to you.

Surgery is scarey. we are in middle of it 23 year old daughter just has it 2 weeks ago still in Hospital but thing are starting to work.Talk to people who had it done,its not easy  its been a tough 2 weeks but you  need to look long term and what is good for u.I am sure we are far from being over  froms ups and downs.We tried Humira instead of remicade, GI doctor what shocked it didnot do anything.Surgeon told us after surgery her colon   was severely diseased. Knowledge is power.Good luck