Please Help

[BrandiLynn909]

i am 20yrs. old and i have had chron's since i was 12yrs. old. for the past couple months i've been having a relapse of flare ups. since april i have been in the hospital 3 different times. twice for a week and the other time i was only in for a day. i am on all the medication i could be on and still i am not getting better. i recently had a colonoscopy done and they found 5 severe ulcers only centimeters away from my rectum. i go on monday to talk to a specialist, but my gi dr. thinks im going to need a colostomy bag. at first she was just talking about maybe needing reconstructive surgery which i was a little freaked out about. but now she is talking about a colostomy bag which is really scary. its always been one of my biggest fears. i feel like i am too young to have to get such a major operation. i just really need some advice as to what i can do to maybe suppress the ulcers. mostly i just need someone i can talk to that understands where i am coming from. i feel so alone right now... even though i have alot of support from my family and friends they still dont completley understand how this disease can be so depressing. i haven't been able to go back to work at all and i dont think i am going back anytime soon. if anyone can give me some advice on a colostomy or anything else please do i would greatly appreciate it. thank you  

[curvy_charlie]

Hi, I just came across this forum discussion, and felt I had to make a reply as I am in a very similar position. I have had Crohns Disease for a good 2 years now. I had many rectal problems, had to have surgery, and then began having major crohn symptoms when I was over in Jamaica for 8 months. I Had to fly home immediately, just about made it back, and have tried absolutely everything, including many steroids, enemas, and the infliximab infusion which acts as an anti-inflammatory.  My family and friends have been great too, but I understand your feelings of isolation and depression. It's a very horrible disease, and when you're 20 (like myself also) it's certainly a real test of your strength.

About 2 months ago I had an ileostomy resulting in a bag. We were all hoping that this would give the large intestine a rest, and would calm things down. However, after much patience, pain and sickness, 2 weeks ago I had my whole colon removed. They left the rectum, but the surgeon said the intestine was 'rotten' and maybe would even start deteriarating inside of me.

Even though I do have a stoma bag, which ***** I can tell you, I feel lucky, for not only am I finally starting to feel like myself again, which is something I haven't felt for a long time, but it was all done through keyhole surgery, therefore my recovery has been quick, painful to begin with, but moving in the right direction. Also, I know its a big decision, but it is reversable. Even though the doctors are in NO hurry to reverse me yet until things are ALOT better, hopefully one day in the future I can have the bag off. However, If having a bag means I am not ill, sick, in pain and on the loo fifteen times a day with horrific symptoms then it's something I'll have to face and deal with.

Sorry this is such an essay, I hope you get to read this. It's alot to think about, but all I know is that my consultant has been amazing (whittington hospital, London) and did everything they could to save my intestine. However, it really needed to be removed, and I felt immediate relief after the surgery. Hope things get better for you, be strong and take care.

Charlotte xxx

[TrudieC]

I had ulcerative colitis and my son has it now.  I had to have my entire large colon removed and had an ileostomy for a year until I had the J-pouch surgery.  The diseases are different but do have many similarities.  You aren't saying what drugs you are on.  Are you on immunesuppressants?  They are a godsend and my son is in total remission.  It takes quite a bit of time.  He was also on prednisone and steroid enemas (his disease is close to the anal opening too) which helped to calm it until the Imuran took over.  Do ensure you try this route first.

Also, have you tried changing your diet?  When you are young it is hard to want to give up on the things you love but much better than possibly having an irreversible surgery.  Finding ways to reduce stress can also help.

Please fill us in and please get a 2nd opinion.

[lovethebops]

I know how you feel. I have been dealing with symptoms for a year now, and was only diagnosed about 3 months ago. My form is mild to moderate now, however, I have the fistulizing form of the disease, and many rectal issues. I have an open draining fistula and 2 severe open fissures. I will be starting Remicade in a month--Rawina, how is Remicade working for you?? Any side effects?

I would definitely seek another opinion before going forward with the surgery. I was about to have a surgery that could render me incontinent, but I backed out and sought a second opinion. Best thing I could have done. Now, we are going to try medication (the Remicade) vs the surgery. I have the best team of Dr.s now.  Anyway, do seek another opinion. A colostomy bag can be an irreversable choice(depending in the case).

I know there are not many of us here, but we do try to support others when we can. Crohn's can be very depressing. I have since been seeing a specialized disease therapist to cope with my diagnosis. Maybe this could work for you as well?

Best wishes.

[RAWINA]

NO NO NO. Don't do it before seeking more than one openion. I have Crohn's disease for the last 13 years. I even have it-believe it or not- in my lungs. It's sever in all of my intestins. I was told by a GI, 9 years ago, that no choice for me except colostomy bag. I got a nother GI who said not to go for it.None of the treatments worked for me, I am on prednison for 11 years. I had, since then, three beautiful healthy babies,Now, I started remicade.
My friend has the same problem but did have colostomy bag, he is in a very very bad shape. Try to get second and therd openion first. I hope you will get better.