Advice on ileostomy for my teenage son

My 15 year old son has had many problems with peri-anal disease - no fistulas but severe fissuring, infections and pain in the rectum. After EUA he has been advised to have a temporary ileostomy (c.12 months) to see if they can heal the fissuring.
The more I read about patient experiences the more worried I am about him coping with it all. Does an ileostomy muck up your food intake? - he is very thin anyway and I really don't to make this worse. Also he has his GCSEs this year so trying to minimise time off school. How long really is the recovery time including time to get used to the whole thing? We have heard so many different views. Does anybody have any thoughts on this?

Peri-anal problems got worse when he came of Remicade (following a severe reaction) and is now on Humira.

Hi Herbsmum

Your son sure has had a lot going on in his young life, and I can only imagine your worry.

I had a permanent ileostomy about 6 months ago, and also had many years of peri-anal disease. I also had a severe reaction to Remicade and failed on Humira. Like your son, I was also quite thin (down to 95 pounds, and I'm 5'6").

The ileostomy has given me my life back. While I was on a low residue (low fibre) diet for the first few weeks, I gradually began to introduce more foods into my diet. I've been eating almost everything for about the last three or four months. I have no abdominal pain, no diarrhea, no cramping, etc. I am now 120 pounds.

In terms of recovery, it really depends on how surgery goes. I was quite sick going in, so I had a few complications along the way. There are others who are up and about quite a bit quicker than I was on this forum. With the ileostomy and the bag, there are a couple of different things to get used to: one is to actually figure out the mechanics of putting a bag on, and the other is to emotionally deal with the bag. I'm not quite sure how your son will deal with it---knowing that it is temporary might be helpful for him to adjust to having an ileostomy and bag.

He's going to be going through a major surgery and he will need time to heal. He's young, so hopefully, that will help him bounce back quicker. I would recommend that he try to drink as much Ensure Plus (extra calories and extra protein), and if possible, high protein drinks that bodybuilders drink. Protein is what helps healing!

Is there a way to arrange for a tutor if he's not physically able to get to school? It'll be at least three to four weeks before he can get about, and the fatigue will stick around for at least eight weeks.

Are you waiting to see if the Humira works before making surgical decisions? Each hospital has an ET nurse (nurses who deal solely with stomas), and it really helped me that i went and saw them before the surgery and had a look at the different bags and stuff. They were great an answering all my questions.

I hope you and your son get as much information as possible before making your decision. I will say that having an ileostomy has been a lifesaver for me and the best possible thing for my Crohn's. I'm enjoying foods again, no more fistulas, abscesses and fissures, and I can go out and about without any worries.

The Stoma subforum has all sorts of stories of people's experiences, as does the 'Parents' subforum which hopefully, will be helpful for you. This is not an easy decision and I wish you well.

Regards,

Kismet

Thanks for sharing your experience.

It sounds like you have benefitted from the surgery medically and encouraging to hear you actually put on weight. Great advice about the protein drinks. I'll get him to drink those now. He aspires to be a mountain-biker so that'll appeal to him!! He's still growing so it will be a good way to get some goodness into him. His appetite is poor.

My son has been on Humira now for 9 months but its not working anything like as well as Remicade did! They are going to try and up his dose to see if it helps but we need to get the local hospital to agree to funding so all a bit slow. In the meantime he is on the waiting list for surgery.

I am very anxious about how he'll cope emotionally and physically. He was surprisingly pretty accepting of the whole thing - better than me to be honest - His attitude was that at least he won't have all the pain anymore.

I just want to be sure it doesn't bring him a whole host of new problems.

Hi Herbsmum!

Have they not given him an appointment with a stoma nurse yet? Stoma nurses are very good at answering any questions that anyone has before getting a stoma and are also very good at the emotional aspect of things.

I got my stoma a month ago now and it is a lot to adjust to but I think it'll be worth it. The fact that he's accepting of the whole thing will make it easier for him. Mentally, I pretty much glided through the operation as I was accepting of it too. That helped with being able to deal with the physical aspects of having a stoma too. I pretty much could change the bag by myself by day 2.

Regarding the food intake, I've only really heard of people putting lots of weight on after the operation as their appetites have increased.

Do you know if he'll be having open or keyhole surgery? That will make a difference to his recovery time. Although saying that, if they aren't actually going to be removing any intestine, I would of thought his recovery would be quite a lot faster. Less healing inside to do!

I hope it all goes ok!

Hi Herbsmum,

You've been given some great advice already. I am so sorry to hear your son is going through all of this at such a young age

There are pros and cons to having any surgery, but all I can say it mine has turned my life around. It did take some time, but it was worth it in the end.

I hope whatever journey your son eventually finds himself on, it can help turn his life around.

Gav

this is something that can be a different experience for everyone, but something that must be really tough for a teenager, he will however have great stoma nurses who will help him mentally and also with physically handling the stoma. like misty eyed said, having keyhole is probably quicker to recover from than an open laparotomy. I had an ileostomy in july after an earlier operation going wrong. i had the op after 14 weeks in hosp and was home 2 weeks later. it took me a while to get confident with it but i am now pretty much used to it and sometimes forget its there. i personally have really struggled to gain weight but i have however had a decent appetite.

anyway i hope everything goes well and he soon is back to having a normal life without any pain!

How does he feel about the temp. ileo?

As for Humira, you mention upping the dose.. is he still on fortnightly? If so I would not do anything until he has been on weekly injections for a few months. The difference going to weekly is huge.

the experience is different for everyone, but with having struggled with severe crohn's in my colon, rectum and peri-anal area, i had permanent ileostomy surgery 15 weeks ago and i just wish i had it sooner. my journey has been very positive. if anything your son's age is great benefit to him through the surgery.
i am 21 so i'm fairly young also, i had open surgery with the entire large intestine, rectum and anus removed, i was in hospital for just 10 days and by week 6/ 7 started feeling pretty great.
after surgery, without the crohn's symptoms, i'm sure you'll see an increase in your sons appetite. i gained weight very quickly after my operation. food is not really limited, though they advise that you avoid fruit and veg for the first 6 weeks....smoothies and fruit juices though are fine.

Thanks so much for all this advice. I have already taken action!

I have now managed to speak again to his paediatric consultant and she has established funding, so we are doubling his Humira from next week, to see if this can make enough of a difference for Herb.

In the meantime we have contact with a stoma nurse, and are still waiting for a date for the op but, as it is unlikely to happen before Christmas, we will have the opportunity to re-consider before going ahead and see if the Humira has helped.

We have a plan! If it goes ahead then we will be prepared and least will know that we have exausted other options.

Feel much happier...

I struggled with peri anal disease, fistula - fissures - abscess etc for years. Spent most of my life severely under weight. Put having ileostomy off. Finally gave in, should have done it years before, now trying to lose weight!

Google: jessica grossman - quite inspirational especially for a young person.
Best wishes

That's reassuring - thanks Tay. My son has struggled on and off for 3-4 years with these issues and I think that's why he's quite accepting in many ways of anything that gets rid of the pain.

My son had an ileostomy after 10 years of pain and suffering in his senior year. Graduated, went to the prom etc. with it. He hasn't looked back, no pain, no meds and is doing everything he should be. He graduated from college and has gone on to med school
Believe me, this is the LAST thing I wanted him to have to go through, but he has his life back and it's good.
Good luck

Herbsmum, I was diagnosed with Crohn's Disease and the GI said he wanted me to get an ostomy when I was 15/16'ish. I put it off until I was 21 and by then my life was a wretched mess of pain. If I was him I would go for it now but let him make the choice. As for weight I have gained 30 pounds this past year. I had my surgery on May 25, 2010 9 days after my 21st birthday and it was the best present I received. You can read some of my past threads on here which discuss the difficulty I had during my teenage years. God bless and I will keep y'all in my prayers.

Herb had his ileostomy in December and despite having a severe abscess develop over Christmas for which he had a stay in hospital, he has now recovered, put on 5kg, has so much more energy, a good appetite and is back at school! I am truly amazed at how well he seems at the moment. He is also coping very well with the bag, despite a few leakage issues. He says its not as bad as he had anticipated.
At the moment he is very pleased he had it done as he is pain free which makes such a difference to his day to day life. Thanks for all your support!

HI Herbsmum

So glad to hear that your son is doing so well with the new ileostomy !
My daughter had hers reversed this past December; she had it for 9 months.
We were quite concerned that she wouldn't be able to go off to college with it as well, but she did and she handled everything like a pro!
I wish your son nothing but the best, and many successes ! Hopefully while having it he will experience better health, and continued weight gain.
Thanks for the update !

:hug: I am so happy to hear that news! May his life continue to improve every single day!