Ileostomy?

[Daisy123]

I have had crohns for over 30 years. Six or seven operations. My last resection was three years ago. I had about six months before I got ill again. I was very ill over Christmas and had a CT scan about a month ago. It didn't show active inflammation but did show 3 small strictures in my ileum. I have been on the low residue diet since Christmas but struggling with it. To cut a long story short, I have asked for an ileostomy. My last resection removed most of my large colon and am struggling with continence and dehydration. Before passing me to the surgeons, my GI wants to do a sigmoidoscopy. I have been trying to push things along. I received a letter from my GI saying that I have dehydration issues and need to be on oral electrolyte mixture :ymad:and also need to take selenium. On top of everything, I now have to have a cystoscopy

I am worried about two things. Firstly having more scopes as I am very sore because of irritation around my bottom and secondly because I know that unlike a colonoscopy they tend to do them without sedation. I can't face them sober and sane. Secondly I read about someone being reconnected because of dehydration issues. I am scared I think the ileostomy is the right thing but what if I can't get hydrated.:confused2:

 

[DJW]

Hi Daisy. Welcome to the forum. Ive had my ileostomy for many years. Dehydration can be an issue. There are various rehdration receipies you can use. A nutritionist can help you with that. Ostomies are not perfect but mine releived a lot of suffering. Scopes are much easier with an ostomy. Hope things work well for you.

 

[2thFairy]

Welcome to the forum!

First, I saw you also posted in a thread about proctectomy. Are you for sure having a proctectomy with closure of the backdoor or just an ileostomy? It is possible to have an ileostomy be temporary or permanent, and not everyone has the rectum removed.

I had issues with dehydration when my ileostomy was brand new, but over time the ileostomy slows down and dehydration is not such a big risk. My ileostomy was one of the best medical decisions I have made. Mine is temporary, but I am hanging on to it for as long as I can, as it has given me a new life!

I have had a cystoscopy before as well. I was given an injection of local anesthetic in the urethra before it was dilated, and throughout the entire procedure, the only pain I had was from that injection. The rest of the procedure was painless, though it is an odd feeling to have your bladder be full of fluid until it is over.

 

[Daisy123]

I am not sure but my bottom is well and truly buggered. My anal sphincter has been eaten away and it is bleeding. So my thought is to go the whole hog. I just want to get on with my life. I find surgery so traumatic that one more is quite enough. I had an anal fistula or fissure when I was first ill and that was the worse pain ever. I can see removal of the anus and rectum might be similar. I have told the hospital that this is what I want. But the GI won't send me to my surgeon within the scopes. Honestly I don't want any more scopes to where the sun doesn't shine.

 

[2thFairy]

I completely understand. Most of my disease was in the rectum and I certainly didn't want anymore scopes or bowel prep. However, even though my GI and surgeon both knew what was going on, I did need to have a final colonoscopy and EGD before surgery to satisfy EVERYONE's criteria (including the insurance company). My GI and surgeon scheduled it on a day so that both could be present to see it for themselves.

I had a total colectomy with proctectomy, with a J-pouch formed at the time of surgery. I have 5 cm of rectum remaining, but the mucosa has been stripped and small bowel attached to it. So essentially, I can be reconnected at some point if I chose to do that. If I do and the J-pouch fails, I would then elect to have the remaining 5 cm of rectum removed and everything sewn shut.

Your decision on surgery is not an easy one at all. You might even consider just a temporary ileostomy without removal of any bowel and see if allowing the rectum to rest will give you the relief you need.

Do as much research as you possibly can and feel free to ask questions. I read a ton of books, but it was talking to the people on this forum that helped me the most before and after my surgery for ileostomy. Every time I had a bump in the road, I remembered that someone else here had been through it and what they did to fix it or cope with it. I definitely did not feel like I was doing it alone.

 

[Daisy123]

My surgeon wouldn't agree to a temporary ileostomy, not now. I haven't much bowel left and I can't keep the illness in remission. I am in constant pain and on morphine. My last operation was three years ago. I am too tired to have multiple surgery, I did that when I was younger. I am not sure what will happen with strictures, I am hoping they can do strictureplasty so I don't lose more bowel. I am incontinent because I only have half a sphincter and the low residue diet means I have liquid stools. I have been on low residue since Christmas and cannot bear it any longer
I just want my life back.

 

[2thFairy]

Sheesh! You've been through the wringer all right! Sending lots of hugs your way!!

 

[Daisy123]

Sorry. I just read what I posted. It was a bit stream of consciousness, I blame the medication. I have been desperately trying to avoid this for thirty years. I should have let my surgeon do the ileostomy last time round. I knew I had made a mistake very soon after the surgery. My issue is that I have a very poor quality of life at the moment and if I am not proactive I will lose my job which I love. I also want to spend time with my nieces. I don't want them to remember me as sick. I am scared about the surgery but I just want it over. I have pushed as much as I can, but still waiting for a date for the scopes. Thanks for replying