To do surgery or not!

[awmom]

Hi all,
I am the mom of a 17 yo boy who was diagnosed with Crohn's when he was 14 (RA when he was 10). He has been on prednisone, pentasa, 6-mp, and remicade. His symptoms are under control as long as he stays on a fairly restricted diet (gluten/dairy free, no fruits, tomato...). He has a stricture but it does not seem to be causing any problems, however, it prevents a proper view of his TI (which is his problem area) in a colonoscopy. The biggest problems he has are that he is very underweight (94 pounds for the last 2 years), his somewhat limited food repertoire and inability to eat enough without feeling bad, and then, of course, the social problems that come with not being able to go out to eat with his friends. Our regular GI said "this is probably as good as it is going to get". We went for a second opinion at Texas Children's Hospital and they suggested taking the damaged part of his intestine out surgically. He does dot feel any other medication would work. This surgery scares me like crazy!! I think I would feel differently if he were having pain or terrible discomfort. On the other hand, it would be amazing to see him gain weight, maybe grow some more, and be able to socialize and eat more freely.

I would love to hear any opinions or experiences with this type of surgery and its recovery, or any who have been able to avoid it after it has been recommended. Many thanks in advance

 

[Brenda0006]

Hi, I'm 19 and I was recently diagnosed with ibd, I haven't had surgery but I think that you should get advice from a second doctor, the hard thing about ibd or Crohn's is that it's so different for different people some times, perhaps a different doctor or specialist will recommend a different medication which could do the trick. And it's great that your son doesn't feel pain or discomfort, he is lucky in that sense at least

 

[Angrybird]

Hello and welcome to the forum.

If the stricture is caused by scarring then no meds will help and experience has shown me that things will only get worse over time. I had a stricture last year and I only had tummyaches initally, gradually my symptoms then got worse and worse until I couldn't bare to eat food and still experienced lots of pain on the liquid shakes. The docs removed the stricture via key hole surgery and for me it went a lot better than I thought it would. I was in hospital 5 days and back to work after 6 weeks - I was even able to eat bread again after is! There is a bit of discomfort afterwards obviously but I found this very tolerable and only needed minimal pain killers for a couple of weeks. Another thing to bare in mind is usually docs don't tend to recommend surgery unless they really have to. Of course if the stricture is caused by inflammation then there might be other meds worth trying first.

If you would like to learn more about the surgery side of things then do check out our surgery sub forum under the treatment section: http://www.crohnsforum.com/forumdisplay.php?f=71.

We also have a parents forum that is definetly worth checking out, the mums and dads here are a brilliant bunch: http://www.crohnsforum.com/forumdisplay.php?f=49.

Wishing you both all the best and please keep us updated on how things go.

AB
xx

 

[awmom]

Thank youso much for your suggestions and sharing your experience. You are so right about getting a second opinion. We are hoping to get an apointment at the cleaveland clinic in the next few weeks. I do believe the stricture is scar tissue but not positive...can one tell through an MRI?

I was wondering how long the recuperation period is so thanks for the info. The doc said a couple of weeks off from school, but I assumedit would be more. How long before you could eat a regular diet?
Again, thank you so much for responding, I am feeling better after your posts and the info on this forum.

 

[David]

Hi there and welcome Angrybird really covered things well. An MRE which is pretty much an MRI is sometimes utilized to tell if a stricture is due to scarring or inflammation.

I know you want him to be able to eat normally, but with his weight issues, I'd definitely research enteral nutrition if you haven't already utilized in in some capacity.

And please connect with the other parents in the Parents of Kids with IBD section. They're a truly amazing and supportive bunch.

All my best to your entire family.

 

[Angrybird]

Thank youso much for your suggestions and sharing your experience. You are so right about getting a second opinion. We are hoping to get an apointment at the cleaveland clinic in the next few weeks. I do believe the stricture is scar tissue but not positive...can one tell through an MRI?

I was wondering how long the recuperation period is so thanks for the info. The doc said a couple of weeks off from school, but I assumedit would be more. How long before you could eat a regular diet?
Again, thank you so much for responding, I am feeling better after your posts and the info on this forum.

I started having bread within the first week, for about a couple of weeks I was told to eat soft foods like mash etc and then to gradually introduce more things. The nurse also told me to make sure I chewed everything thoroughly so nothing got stuck at the incesion inside whilst it healed. I was also given a weak laxative called Milpar straight away so my stools were not too formed at first and putting a strain on the join - I found this a little amusing considering before the op I hadn't had a solid number two for about 6 months.

 

[awmom]

Thanks for the info...I had never heard of an MRE so I will ask about that. And it's good to know that the re-introduction of food is fairly soon after surgery. Am also going to see if I can get some supplemental drinks that he can tolerate in the meantime (he did a liquid diet 2 years ago and has a hard time drinking supplements). You don't know how relieved I am feeling about this. Am in the process of making appointments to gather more info (and I know better what to ask now!) and will proceed form there. Thank you again!