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Posted 5/16/2010 4:50 AM (GMT 0)
I have crohn's disease and have tried everything out there and nothing has helped. My next step is to have a total colectomy with a permanent bag. I am so scared to do this but in a way think it will bring me relief. Anyone out there have crohn's and have an ostomie??? Please help.
Posted 5/16/2010 6:02 AM (GMT 0)
I am in the same situation. i have tried all the meds over the past 2 years. I have been reading alot of posts on ostomies and what to expect. As much as I wish the meds would work...Im tired and just want to be able to go for a drive when i want, or go to the store when I want...I have crohns colitis and my sphyncter muscle has been destroyed by the disease. My surgery is scheduled for the 28th of this month. Im not sure about emptying the bag 4-6 times a day and 3-4 times at night BUT..atleast I will be able to walk to the tiolet and NOT RUN... :-) . Wish u all the best. 
Posted 5/16/2010 11:14 AM (GMT 0)
sno92c .... there is a very nice lady that posts here sometimes but is mostly on the UC board right now. I think her username is Christine1946. She is on the track for going for surgery to get a permanent ileostomy due to UC. I think it would be cool if you guys talked because she is kinda nervous about the whole thing and it would be good for you guys to talk with each other about it. I actually have a friend that had chrohn's with a perm bag and she is living the happiest life ever. The bag doesn't get in the way of anything. Her quality of life has improved so much and her confidence in life has also increased. You have every right to be scared, but I feel that it will bring you a happy and healthy life. Good luck with everything. BTW, I have an ileostomy with a jpouch. I am seriously considering of going woth the perm. bag option though. I really don't mind the bag at all!

Stay well!
- Anthony
Posted 5/16/2010 12:13 PM (GMT 0)
sno92c~check out the 'new to me' thread by rovin1959...it is a recent discussion about having ostomy surgery. Many of us have Crohn's Disease and an ostomy...some temporary, some permanent and some have Colostomies...but the common denominator is, that once we are through the surgical recovery, we have been able to live a happy and active life!

Do you have any specific questions? Sometimes it is easier to answer the questions that you have at the moment...I know there are many and they change as your knowledge grows!

Another thought is, if your doc has a volunteer or patient, that has been where you are, you could meet/talk to in person and it might help ease your mind.
Posted 5/16/2010 12:41 PM (GMT 0)
Hi and welcome,
I have had crohns/colitis for over 22 years and just had ileostomy and proctocolectomy done last year so Im reasonable new to this but I have to tell you it really has been the best surgery as it has given me back a life. I could not leave the house before my surgery as I always would lose control of my bowel every time I would walk out the door. As for emptying the pouch heaps it really isnt that bad it gets better the longer you have your ileostomy, you also get used to the times you eat etc, so obviously if you eat really late at night then you will be up emptying a few times during the night so I just eat my dinner a little earlier than I used to and try not to eat too many late night snacks. Any other questions please feel free to ask away I am only too happy to answer as best as I can. Good luck and hope you get to feeling better soon too. I will never look back now.
Take care
Doreen
Posted 5/16/2010 12:52 PM (GMT 0)
Welcome, sno92c and LittleSisSmurf,

I was diagnosed with Crohn's in 1999 and tried every medicine for 7 years before having a proctocolectomy (colon and rectum removal) and permanent ileostomy in 2006. I was scared, too, but it was the only option I had left, so I went ahead and did it. For me, it has been a wonderful experience and an amazing gift to have my health and life back.

I have no regrets about having surgery, and would have done it much sooner had I known someone who had been through it and could tell me how good I was going to feel and how having an ostomy is not bad. I think it's so cool how nobody can tell that I have one! :-)

Just an FYI ~ you might have to empty that much in the very beginning, but now I only empty when I go to the bathroom to pee and don't have to get up to empty during the night.

If you two have any questions about anything (surgery/recovery/life with an ostomy), please don't hesitate to ask! We are here to help in any way we can.

Cecilia
Posted 5/16/2010 12:56 PM (GMT 0)
P.S. - If you want to see pictures of us, log on to www.photobucket.com / User name: crohnsdisease / password: 6mp3asa smurf
Posted 5/16/2010 2:09 PM (GMT 0)
I was the most resistant person the surgeon must have ever met. He told me I was too vain and he couldn't "save me" without the surgery. I still waited 6 more months and fought the whole idea. After a new surgeon with some kinder ways, he talked me into what I should have done years earlier.

I won't lie and say I think it's all easy and I have my life back completely. The pouch and leaks still plague me some, but I'm still here and the pain isn't like before, so it's all worth it.

I do think it was good for me to get to the end of my rope (figuratively) and have to be swing for awhile to have it be my decision and me be happy with it.

The unknown is a hard fear to conquer, but good luck and God bless on your journey to better health.
Posted 5/17/2010 12:36 AM (GMT 0)
well ill just echo what they all said, its scary, and its hard, but its sooooo worth it!
To have your life back! and not worry where a bathroom is
Posted 5/19/2010 10:14 PM (GMT 0)
I was wearing a temp colostomy on my wedding day. I felt and looked pretty good too. Had a couple funny pictures that I knew,I had pooped in. Just cut them out!!!! Not sure why I am scared of the permanant one. I just do not know why rectum's have to go too. I just keep comming back to this computer,over,and over again.
Posted 5/21/2010 4:11 PM (GMT 0)
<- severe Crohn's up until Nov. when I got my super duper awesome Oscar (colostomy) and rectum removal. I pushed my surgeon after many many many many many many... days/weeks spent in the hospital over the years, I even made a long list detailing what I could do with an ostomy. He broke down, we made a game plan and we went for it. The day after surgery he came to see me and said "Allie, we did the right thing, your colon was so fistulated that sections were hard and no amount of drugs could have fixed you." I know I did the right thing and every single day I thank Oscar for giving me my life back. If you have any questions at all, please ask, someone here has been through it already!


-Allie
Posted 5/24/2010 8:05 PM (GMT 0)
sno92: I couldn't get to the surgial suite fast enough - you'll be glad you did it.
Posted 5/24/2010 11:28 PM (GMT 0)
     Tonight I feel so confused.   Having doubts as to whether to go through this surgery or not...permanent ileo.  I have had UC (actually ulcerative proctitis, as it never went further than the first 4 inches of my rectum, most likely thanks to Colazal) since 1998.  Today I am having a "good" day.  Good day meaning...no bowel movement at all...no pressure, no pain.  Bad days...urgency, pain but only go about 4-5 times.  However, I have become prednisone dependent.  I've been on prednisone (this time around) since January.  I had a very rough February with bleeding, urgency, cramping.  In March my GI doctor performed a flex sig and had to put me completely out.  I tried the Fleets enema and thought someone put a blow torch up my rectum.  It showed moderate inflammation in the rectum.  Actually, the rectum looked pretty bad to me...very inflamed.  Well, here it is the end of May.  When I taper down to 5 mgm of prednisone I start bleeding again.   I met with Dr. Robert Fry, head colorectal surgeon at the Pa. Hospital in Philly, two weeks ago.  He said I was too high of a risk for j-pouch and I honestly have no qualms about wearing a bag.  He did look up my rectum and saw the inflammation, but that was the extent of his exam.  He read all the reports from my GI doctor.  Surgery is scheduled for the 28th of June.  My GI doctor wanted me to go back to the GI specialist at the U of Pa Hospital I saw last Sept, but he didn't offer any other methods of treatment than my GI doctor did.   6MP never kept me in remission and I was on it for seven years, Remicade and Humira did nothing.

     Am I making the right decision?  When I have these good days, it makes me wonder.

Posted 5/24/2010 11:32 PM (GMT 0)
you are doing the right thing! have the surgery! I told you that tricky colon is gonna try to stay in there, lol.
Just remember how miserable you were two days ago, and thats gonna come back, its not going anywhere. You may have one good day, but you will have 10 bad days.
Its fine to worry about it and second guess it, you wouldnt be normal if you didnt. But just keep remembering WHY you are doing it, what you want out of it!
Posted 5/25/2010 12:24 AM (GMT 0)
Hi,

I HAD to get a permanent ileostomy due to irreversible damage to my healthy colon and rectum and severe adhesions that wrapped around my small intestine. This was all a result of a surgery for a benign internal organ prolapse situation, most of which I did not have found upon review. Too long of a story to go into. However, as my colon and rectum were severely scarred within their walls, I could not expell stool. I also could not eat for 7 months due to chronic small bowel obstructions from the adhesions. Was going to die if someone did not do something. Took me 13 months, 11 surgeons, and 7 hospitals before I found a doc to help. He lysed the adhesions off my small intestine and made me a permanent ileostomy. Since then I have traveled a LOT, gone on cruises around South America and around the world in 2009. As I had no disease, the only danger I'm in is of possible re-adhesion obstruction, but so far that has not happened and hopefully won't. I don't sit around worrying about it.

If you have a disease that is keeping you homebound, then having the bag would be a blessing. Mine was from an injury, but the result is the same. The bag is do-able and you will regain your life. If in your case you can have your surgery laporoscopically, that would be best as that minimizes adhesion formation. Best of luck to you, Rosemary
Posted 5/26/2010 9:05 PM (GMT 0)

I have had Crohn's Colitis since I was about 10- I was dx at 18 in 2002. I very quickly went from Asacol being enough to having to try Remicade. The remi helped a lot until I developed an allergy on my third infusion. I tried Humira but it had no effect and finally, I was on Cimzia for the last few months before surgery. I thought it was helping some, but I ended up with multiple fistulae and setons and a major stricture. It got to the point with the stricture that I was taking triple+ doses of Miralax daily just to be able to go. As a result of the stricture, I was having new fistulae all the time and also had severe edema in places you really don’t want edema.

 

This was when I cried and begged the surgeon to help me out, there had to be something she could do…I had went to a CCFA conference on Women w/ IBD literally only weeks after being diagnosed and they had three women who had had the ostomies installed (seems like the best word to describe it to me!) and all of those women were so happy they did it. Their lives were 1020202393949% better. When I relayed this story to the surgeon she knew that I was serious and we scheduled my operation that day. On March 9, 2010 I had a total proctectomy with end colostomy.

 

The surgery was very difficult, the surgeon told me that the disease was just horrible; it would have started to invade my other systems soon. She said we did the surgery just it time because the inflammation from my intestines was just everywhere and spreading. Now, she says my insides are "pristine" I couldn't believe it- of course there's always the chance the Crohn's could show up elsewhere and I'll have to have an ileo or something but NOTHING will ever be as bad as the perianal manifestations of the CD I had before.

 

Now? My life is so much better. After having been in a flare for the past 3 years, I forgot what it was like to feel good. I get up in the morning and I'm awake, not exhausted. I only need to sleep for 6-7 hours a night, not 10 like before. It has changed my life- all for the better. Surgery is always a scary prospect, but this is something you should truly think about- it could change your life too!

 

Please feel free to ask me any questions!

Posted 5/27/2010 4:16 AM (GMT 0)
hi every1, its been really good reading about every1s surgerys as im also thinking of having my colon out. il pro ask some stupid questions but bare with me.
Does this mean every1 has a bag on the outside? any1 have a j pouch?? i guess like alot of other ppl on here im crapting myself about get it done, im told its horrific surgery?. but iv had so may probs with my colone ova the last 10yrs. i have an ilio which was put in last yr but the pain in my colone seems to have returned recently.sigh. im also scared that il have this surgery and it cld come back in the small intestines?? i hate this disease.
Posted 5/27/2010 4:36 AM (GMT 0)
Julsgirl:
It doesn't have to be "horrific" but there can be complications. That doesn't mean you shouldn't do it however.

I might come back- it might not. Anyways, between the surgery and it coming back you could have many many great years. Many great years is so much better than what you have now- miserable all the time.
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