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Posted 6/19/2012 2:51 PM (GMT 0)
I have been to the hospital today and my surgeon has arranged for me to have a colonoscopy, depending on the results of this depends on what operation i have next. I have been suffering from Perianal Crohns for 3 years now and have had numerous operations to drain and lance abscesses, unforunatley my Crohns has spread to my colon which is causing serious problems, weight loss, loss of appetite, hair loss, and several other things. Today my surgeon said to me despite what the outcome is of the colonoscopy i will be having either and ileostomy (temporary) or a colostomy. I am still quite young (22) and finding this hard to deal with, but my quality of life at the moment is just rubbish. Anyone shed any light and give me there own experiences and how it has helped please. x
Posted 6/19/2012 3:26 PM (GMT 0)
If you have crohns I would think they would just do an ileo.
But anyway, I got mine when I was 29, I got sick when I was 21. I wish I had gotten it that day! I wasted my 20s in and out of the hospital, too sick to do much of anything. Since surgery 5 years ago I haven't missed anything because of my ileo. I've been able to do everything I wanted. It's great! Sure there can be complications, I had to actually have adhesions removed a few months ago, but I still don't regret surgery! So what if I had to do that for a healthy life, its worth it!
You said your life is rubbish now, so you know you are miserable. I felt the same way ansd I thought, I KNoW I'm miserable now, so IF after surgery I'm still not happy, I haven't really lost anything. But I had read so many success stories and so many people who were so happy, I didn't see that happening.
Good luck!
Posted 6/20/2012 11:42 AM (GMT 0)
Hi and welcome. I'm so sorry you're going through this. I can relate, because I had Perianal Crohn's for 7 years and had fistulas and absesses.

I was only 28 when diagnosed and also felt I was too young for an ostomy, so I refused surgery for all of those years. I tried every medicine available and even did restrictive diets (like becoming a vegan) hoping for remission, but ultimately nothing worked.

After a colonoscopy in 2006, I had 4 gastroenterologists tell me that my rectum and colon looked so bad that I had to have surgery. I was too scared to have my colon and rectum removed, so I agreed to a temporary ileostomy, again hoping that the disease would go away if I bypassed that area for 6 months.

Well, much to my surprise, I loved having an ileostomy. It gave me freedom from always having to be near the bathroom, and I could sleep through the night without having to get up every hour to go. I could go shopping, swimming, eat out at restaurants, go to the movies, you name it, and I wasn't in pain or running to the bathroom all the time. Plus, the pouch was so flat against my stomach that nobody could tell that I had one. I had my life back and felt great!

After 8 months with the ileo, I started bleeding from the rectum and decided to have my colon and rectum removed, because I did not ever want to go back to the life I had before. I also did not want to worry about the possibility of getting colon or rectal cancer, so I had them removed and haven't looked back.

If you have any questions about the surgery or anything at all, please feel free to ask. Wishing you all the best and good health.

Cecilia
Posted 6/21/2012 1:53 PM (GMT 0)
Well, I will tell you what I told a surgeon... at one consultation, a surgeon told me "you don't understand, a colostomy bag is life changing!" and I promptly told him.. " No, life changing is NOT seeing my grandchildren grow up, not seeing my great-grandchildren be born...a colostomy bag?? that's just a bag of crap you deal with!" He wouldn't see me after that :)
Posted 6/21/2012 2:25 PM (GMT 0)
Mrsbugzy, I love that! Awesome way to think of it.
Posted 6/21/2012 5:04 PM (GMT 0)
I was 18 when diagnosed, and 28 when I had exhausted all of my medication options and just had no other choice but an ileostomy. I chose a permanent one because I was done living like I had been. The anxiety about finding a bathroom EVERYWHERE, the expensive meds, the side effects of those meds, the hospital, the doctors appts, the fear of not getting better, the constant diarrhea, the feeling like crap, the exhaustion, the horrible immune system that could fight NOTHING...

I am so, SO, SOOOOOOO glad I had the surgery. It has changed my life for the better. If you have any questions, please feel free to email me directly because I was young and I know what you're thinking but honestly, I am thankful for it every single day. I have never regretted it. It has given me my life back and I didn't realize how much I was missing until I wasn't sick anymore.

I hope you can stop suffering soon. Hugs!!
Posted 6/21/2012 11:12 PM (GMT 0)
I was sick for many years with Crohn's (probably, could be UC, still not completely sure). I lost perspective on just how sick I was and how much it impacted my quality of life. I fought surgery for a long time, didn't want to lose original body parts. I tried almost every drug that's out there. Then I started having horrible complications -- had boils all over my butt, EN nodules (huge red bumps) all over my legs, got an eye condition that made me so light sensitive I just wanted to lie on the couch all day w/a blanket over my head, and finally spiked a 104.6 fever, while I was on immune suppressing drugs. Finally I just said enough -- I tried, my docs tried, but we just couldn't beat this thing right now.

And then I had surgery and got my life back. Now instead of running to the bathroom 20 times a day and being skinny, anemic, and low energy all the time, I find myself thinking I should lose some weight and wondering about a small patch of eczema on my arm. People I've known for a decade or more say that I look better than they have ever seen me. I eat whatever I want (part of the weight thing... ) and am already swimming a half mile 3 times a week and walking all over the place.

The bag is an adjustment, but it's so much less intrusive than Crohn's. It's overwhelming at first, but people here were so great about helping me. Once I got used to it, it really became no big deal.... I feel kindly toward my stoma and the bag, because they are a small price to pay for what they gave me....

Feel free to ask more specific questions after you see your doc. Hang in.
Posted 6/21/2012 11:54 PM (GMT 0)
I had UC for 14 years, and was in remission for most of that time. When I was sick though, the disease was completely unforgiving. I think I am a strange case though. Imuran was so good to me; I had a decent quality of life when I was in remission. Last late spring/early summer was when the last horrific flare really started. It totally ruined my quality of life last summer, and I hadn't realized that until now. I just went to the pool with my friend and our kids the other day, and the last time I had been there, I needed to run to the bathroom at least 5 times. It took me a while to realize how much I had been missing, because right after my surgery, I was only remembering the times I felt good. Now I am truly beginning to see, as I am at the pool and having a ball every day with my kids, how lousy I felt last summer. Surgery is a very big adjustment for many of us, but in the end, we do realize the many, many benefits there are.

If I had it to live those few weeks before surgery over again (and boy am I glad I don't), I would journal every day that I felt I was a prisoner in a POW camp, because that is exactly how I felt. I was hospitalized for three weeks, away from my family, was in agonizing pain and was not allowed pain meds due to their tendency to paralyze the bowel, was frequenting the bathroom as many as 20 times a day DESPITE 60-80 mg of intravenous Salumedrol, was starving due to not having eaten in over a week, losing tons of weight, was being stuck multiple times a day and once 11 times to find a site for an IV, fresh water suspension enemas in a badly diseased and ulcerated colon, etc., etc., etc. That time was probably the lowest time in my life, and I blocked it out due to so much trauma on my brain, I guess. I hope I never fully forget any of what I went through, just so I can appreciate every second of this new lease on life.
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