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Questions on upcoming surgery for my mother - permanent ileostomy

Hello everyone,
I joined this forum on behalf of my mother, 62 yrs, CD detected in year 2007.

She was initially on azoran, which didnt suit her as she had bone problems. Now she takes Budez thrice. Her rectal area is affected badly, and she has lot of pain. She had been administered remicade for 6 times - full course (3 doses).

She had multiple fistulas. Doc couldn't do seton treatment since the fistula was like a web and not connected to rectum. He opted for dilation and deroofing, which gave her temporary relief. She was subsequently administered infliximab.

Now, its been 4 months and she suffers from incontinence, fistula and extreme abdomen pains.

Her doctor has advised ileostomy next week. She is taking it all well, but just wanted to know whether there are any chances of Crohn's flare up after surgery. Most likely the surgery will be permanent.

thanks,
Rahul
 

DJW

Forum Monitor
Hi Rahul,

I've had my ileostomy since my late teens. It was a life saver for me. With the ostomy I could do things that had become almost impossible. I could go to school and work.
Spots have always been a big part of my life.

I enjoy:
Cycling, softball, golf, ice hockey, walking, etc.

It takes some getting used too, but we adjust and life goes on.

Sending you both my support.
 
My daughter is having the surgery Wednesday. She has been fighting the incontinence, pain, and a whole bunch of other issues for 3 years. We tried multiple meds, exhausting all options. Has your mom tried other biologic meds? I'm not saying she shouldn't have surgery, but you want to feel luke you have tried all you can before surgery in my experience.
 
Has your mom tried other biologic meds? I'm not saying she shouldn't have surgery, but you want to feel luke you have tried all you can before surgery in my experience.
Hi SupportiveMom,
My mom is also taking homeopathy medicines since past 2 years, but nothing much is working out.
She takes Budez, mesacol, bifilac, calcium tabs, bio D3, multi vitamins, lenoxin(heart pumping rate is between 20-30) and remipril (for hypertension).
Plus, she is in immense pain, unable to sleep since she has to even take warm seat bath in the night as well. She had been extremely active, had her own school prior to Crohn's. Now all she can do is move from one room to another, and its really heartbreaking.

Honestly, we feel ileostomy might be a ray of hope. Pls do suggest.
 

Spooky1

Well-known member
Location
South Northants
An ileostomy can be a lifesaver for some. My mum has had one for 43 years. She coped very well with it, but it was for Colitis. I suffer the horrors like your mum but I don't want an ileostomy, and my Crohns is from mouth through so would still dash to the loo to empty the bag multiple times each day and night. This disease is hard work. No wonder we are so exhausted. Having said that there are plenty on this forum that have milder cases and have never had surgeries. Each one has their own case of IBD and each is very different. If I was your mum I'd be on potato and salmon. Rice goes right through like ants eggs, and other foods are no good either. But I have far less diarrhoea and pain if on the bland stuff. I do however, have liquid feed.

Good luck to your mum. Crohn's can be crucifying.
 

UnXmas

Banned
I have an ileostomy and I love it.

If you have any questions about the surgery or living with an ileostomy just post them.

Crohn's can continue after the surgery, as it can affect any area in the digestive tract. However, if the rectal area is currently causing the most issues, having it removed and a stoma formed instead will will end those problems. It will certainly resolve the incontinence. Are you confident in the surgeon and his opinion? Do you or your mother have any specific worries aboiut the surgery?
 
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Surgeon is really good and experienced, me mom and dad, all have full faith in him. I suppose initial apprehensions about the surgery is there :)
 
I had a permanent ileiostomy done last December after nearly 30 years of coping and suffering with CD, I can hand on heart say it's the best thing I've ever done.
I was worried initially about the surgery as I'd never had any so was unsure what to expect, it all went really well, I was out of hospital in 6 days, and have never looked back.
I think it's easier to accept if you've been in a lot of pain, suddenly, you are pain free, and don't give a hoot about the stoma !.
There are also so many products available now, that most problems can be overcome with a bit of trial and error.
Do let us know how your mum gets on.
 

UnXmas

Banned
I suffer the horrors like your mum but I don't want an ileostomy, and my Crohns is from mouth through so would still dash to the loo to empty the bag multiple times each day and night.
This was one of my worries before I got an ileostomy. I knew I had trouble elsewhere in my digestive tract, and I nearly always had diarrhoea, so I thought I'd be emptying my stoma bag ten times a day or more. Now I have my stoma and I empty it two or three times a day, and it's never in a rush, I have plenty of time and empty when it's convenient. It's difficult to predict how it will be. Another worry I had was that I'd still be passing mucus via the rectum, but I pass no mucus at all.
 
Update:
Mom had ileostomy a week ago. All well now. Her surgery was risky since her heart rate was very low - she was in ICU for few days.
Now back to normal. She has gained 8 kilos after surgery, looking much more radiant - thats the awesome part.
But she has rectal pain - planning to show to the GP tomorrow.
We have ordered Prowess single piece bag from amazon. Any recommendations on the bag?
 
If you look online for ilieostomy supplies, you'll see lots of manufacturers, most if not all, will send you out free samples.
I use Coloplast Sensura Mio pouches, mainly because the wafer is so comfortable and moves with your skin.
I've also used Convatec Esteem, which worked really well, but the adhesive on the wafer left my skin very red.
Great to hear your mum is doing so well, long may it continue xx
 
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