Help needed for next step.. Proctectomy or no?

[sam357]

Hi,

I am quite new to this forum and this is my first thread :smile:

I am currently at a bit of a crossroads at the moment with my Crohns and would really appreciate any thoughts or help from other IBD sufferers.

Ill start from the beginning....

After 3 years of pain going to the toilet and a few weeks of being ill with sickness, fevers, diarrhea etc I was finally admitted to the hospital where they found 3 perianal abscesses and diagnosed me with Crohns.

Unfortunately in the days that followed I was still very ill so the doctors decided to operate and give me a temporary colostomy. This was to enable my bottom to heal without being used.

Anyway, over two years later and things have not been much better. To begin with I was on Infliximab with azathioprine, then a year later I switched from Infliximab to Humira as It had not improved.

As well as treatments I normally have to have an examination under anesthetic every 3-6 month as I get sore again sitting down and walking. Each time they find another abscess and end up putting another seton in or washing everything out and redoing the setons.

At the moment I have three setons and a hole the size of a 5 pence (not sure what this is as it is a result of my surgery last week. Will find out when I see the surgeon in 2 weeks).

Before my surgery last week I spoke to my surgeon and he basically said that the doctors have now run out of options... As my bottom is so scared from the abscesses not healing my colostomy has now become permanent as he said I would just be incontinent if they reconnected me. He also said that perhaps I should think about the proctectomy operation as I have also exhausted all medical treatment options. As far as the hospital are concerned, this is my only option left.

I would be so grateful if anyone could give any information on what this surgery involves, the pros, the cons, the risks, healing time etc (basically what really happens, not what the doctors say) as I am finding it hard to come to a decision. Or even if anyone can recommend any new or alternative treatments that could help?

I am a 26 year old who does not have any children but would like to in the future.

Thanks for reading :cool2:

 

[littlemama1]

Hi,

I don't have personal experience here but I had a friend who was in a similar situation. She had really bad perianal disease with anal fistulas and abscesses. They gave her a colostomy in hopes of giving her anal area a rest to heal up, but it didn't happen and the disease in the rest of her colon continued to get worse. She did end up having the rest of her colon removed as well as her rectum and anus, and it worked out for the best for her. She said that an ileostomy with a mostly healthy small intestine was far easier to manage than a colostomy with a sick colon.

I don't remember if she had issues, but I know some people in that situation have trouble with their perianal wound healing. Some surgeons sew the incision around the anus shut, and some leave it open if they feel there is a high chance of it getting infected. I have heard of people having a difficult time healing that wound when that happens, but I don't know how common it is. Anal wound healing with the fistulas and everything should definitely be on your list of things to ask about.

As far as surgery, like I said, I did not have that exact surgery, but my two biggest surgeries were my colectomy + jpouch + temporary ostomy surgery, and later the surgery to remove my jpouch and close my anus. For the first one, I was horribly ill going in to it and on TPN, and I felt like I'd been hit by a truck and spent 17 days in the hospital. For the second, I was really healthy going into it, spent 4 days in the hospital and started a summer college class a few days after that. So I really think it depends a lot on how healthy you are going into it.

I hope that helped a little. Best of luck to you, whatever you decide.

 

[Daisy123]

I am also facing the same operation because of constant pain and incontinence. When I spoke to my IBD nurse at Christmas and was talking about a permanent ileostomy, I was struggling with 'what ifs' - what about if a cure is found, what other treatments are there that I haven't tried. Her response was that I had to deal with the here and now. She is right. It is about quality of life, and that is the decision. I have met many people with ileostomies that have children. It shouldn't stop you having a normal life.