diverting colostomy

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molly m
New Member


Date Joined Jan 2006
Total Posts : 17
   Posted 10/29/2007 9:13 PM (GMT -6)   
Hi everyone,

My name is Molly, I'm 22, and I was diagnosed with Crohn's when I was 12, so it's been a good 10 years now. I had awesome remission for about 5 years, and since then things have been downhill. Long story short, I've been on Pentasa since I was diagnosed, Flagyl, Prednisone, Imuran, Remicaid, Humira, and recently methotrexate. Remicaid worked really well for me for about 6 months, but the time the infusions lasted started to decrease and I guess I built up a resistance. The big problem now is not only do I have flair ups before the time I can have another infusion (I tried Humira and it did nothing) but I have 2 fistulas that get infected and abscess before every infusion. So basically I'm healthy for 3 weeks, and then for the last week or two before my infusion I have fevers, vomiting, you know the whole bit. It's been going on for about 6 months now and it's terrible. Obviously the fistulas need to heal, and the antibiotics, IV form or oral have never seemed to help at all. I feel like my Dr. is in denial about surgery, he's very much against it, so he like makes up things that I should do. He wants to try "intense antibiotic therapy" for the next three weeks as a last try. But I'm not even sure I want to do that because they've tried that 4 times and it's never worked. I'm so sick of living my life like this. Worrying about these stupid things draining, and being in pain from the abscesses is awful. So I guess my question to anyone out there is, is having a temporary "diverting" illeostomy THAT bad that I should be avoiding it with my life like my doctor is suggesting? I know it could end up being permanent, that's always a chance, but my quality of life is so terrible right now I think I'm willing to take that risk. How bad is the surgical pain, or the recovery? I'd really appreciate any information anyone can give me about the surgery itself. I'm really scared, and it doesn't help that I'm getting such mixed signals from my doctors. I feel like people that have been through it themselves are much better sources. Thanks a lot in advance.

Molly confused

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/30/2007 12:31 AM (GMT -6)   
Molly,
I'm so sorry that you've been having health troubles. sad I know exactly what you're going through, because your situation is just like mine was. I had 3 good years with Remicade, and then my body developed a resistance to it, so it stopped working. That's when I developed a fistula and an abscess on my right butt cheek. It was so painful that it had to be surgically opened up, which left me with an open wound on my butt for several months and intense IV antibiotic therapy to avoid a serious infection.

That's when the surgeon recommended a temporary ileostomy to bypass my colon, so that the butt wound could heal without getting infected. They also said that there was a 50/50 chance that my colon might heal. I agreed to the surgery, only because I knew it was temporary. Anyways, the wound on my butt healed, but my colon never did.

I ended up really liking the ileostomy and the freedom it gave me from always having to be near a bathroom. After 8 months of being bypassed, my colon started bleeding nonstop. That's when I called my surgeon and scheduled to have my colon and rectum removed and to keep the ileostomy permanently. That was a year ago, and I have never regretted it. I was sick with Crohn's for 7 years prior to surgery, and now I am completely healthy.

I don't think it's right that your doctor is against surgery. He's not having to live with the pain of Crohn's and abscesses. He should just present the facts to you and let you make that decision. To be honest, I don't need to see any doctors right now, because I am not taking any medicines and am feeling great. They are there if I need them, but I don't need them right now. Keep in mind that doctors don't make any money if you are well and don't need them.

I suggest making an appointment with a colorectal surgeon to talk about the possibility of getting a temporary ileostomy. The surgery is no big deal and many people are out of the hospital in a couple of days. They mainly keep you there until the stoma wakes up from surgery and starts working. Once it's working, you're on your way! You have tried all of the medicines out there, just like I did, and if they are not working for you, then surgery is the logical next step.

Good luck, and keep us posted!
:-) Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


lbw
Regular Member


Date Joined Apr 2007
Total Posts : 24
   Posted 10/30/2007 12:50 AM (GMT -6)   
Hi Molly,
 
My names Luke, I'm 20 and had a permanent ileostomy in June due to Crohn's. I was in remission for about 2 years but was pretty sick most of the other time. Before my operation I didn't really have a life at all, I speant most of my time in bed in pain and I was so tired, but since i had the operation I have had no pain and my energy is really good. Having the operation was a big adjustment but at least I have a life now and I can do pretty much anything I want and best of all I can eat anything. Life's to short to be stuck in bed all the time especially at our age. In terms of the pain, they give you pain medication in hospital which is really good so I didn't really feel a thing from the wound but my back was really sore after I started reducing the pain killers and started moving around again. It has been hard mentally since I had the operation but physically I am better now than I can remember and doing and eating normal things and I have a life now. 
 
Hope this helps,
 
Luke.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/30/2007 11:06 AM (GMT -6)   
Molly,
 
Have you gotten a second opinion from another GI or surgeon yet?  Sounds like from your post that you have pretty much just stuck with the one doctor, and that you are not happy with how your treatment is being addressed.  That in itself would be reason for me to seek a second opinion.  Just my two cents worth re: doctors.
 
I had my surgery a long time ago, and many of the meds you are/were on were not available to me.  Sounds like your doc is trying everything other than the surgery.  Did you ask him exactly why he is so against it (in denial about surgery)?  Does he have a misconception about it?  Does he feel that, for whatever reason, it is not in your best interest?  I'm just throwing out some questions for you to ask him...  I'm certainly not a trained professional! 
 
I had my first temp ileostomy in 1979, it was reversed for several years with no success cuz the Crohn's Disease returned witha vengence incl fistulas, etc; and finally had perm ileostomy in 1984.  No return of CD since.
 
Best of luck to you. 
 
Luke,
 
I haven't seen many posts from you - but you sound like you are recovering well from surgery and getting back into a normal life routine.  Good for you! 
 
Everyone has an adjustment period - there is no question to that.  But keep a positive attitude and keep trying new things.  Isn't it amazing how much you feel like doing when you don't have the pain or the symptoms of CD to deal with?  You will find that with each passing month you will enjoy more and more of what life has to offer. 
 
Keep your chin up and a positive attitude!!  And keep visiting us here on this forum...  and the chat room too!
 
 
 
 
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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