Some improvement but may need surgery

[kernelmom3]

Grayson has been in the hospital for three days now with a stricture. He got his second Remicade infusion yesterday and has been getting Prednisone too. He hasn't eaten or had anything to drink in three days (but they're not talking TPN yet, thank God). The GI says he's not as distended and seems to be improving but if he doesn't have a bowel movement by Monday he'll most likely need surgery!!! Since his diagnosis/perforation 5 weeks ago he's had a perforation, an abscess, a fistula and now a stricture. All of them have happened near/at his terminal ileum. Part of me wonders if we're just delaying the inevitable but obviously if we can avoid removal/re-section, that would be ideal. He's just so frustrated and in pain (and hungry!). He's missed so much school and he's in all Honors courses so he's nervous about that too. My husband and I were thinking about having a social worker come and talk to him but Grayson said absolutely not. He's fifteen so I have to respect his wishes to a certain extent, but I'm wondering if we should do it anyway.

Can anyone tell me their experience with strictures? I know every patient is different but I just really need some info from people who have kids who have been where I am. Also, has anyone had a psychologist visit while in the hospital? Was it helpful?

 

[Maya142]

My daughter sees a psychologist regularly. She was very against seeing one and is very quiet and was nervous about talking. Fortunately, her GI insisted that it would help and eventually M agreed to see the one in the IBD clinic, who works mostly with IBD patients. It was a great fit and though it took a while, M now looks forward to seeing her. I'm SO glad her GI convinced her she needed to see one (because she wouldn't listen Mom, of course!).

We had been to two psychologists previously whom M did not like. It may take a while to find a good one, you really need one that has experience with kids with chronic illnesses. If you do see one in the hospital, I would ask his GI if he could recommend one.

Another option that your hospital might have is Child Life Specialists.

I'm so sorry to hear about all your son is going through and hope he feels better SOON.

 

[worriedboy]

I am talking from my own experience, not as a parent of a Crohnie.

I hope Grayson will get better soon; what is the length of his stricture ? Is it all inflammatory or partially fibrotic ?
Fibrotic part wont respond to meds. This leaves two options of dilation or surgery. Were they able to distinguish that ?

About school, let him know that you trust him to fill in the gap when he gets better. Back him up and give him a sense of confidence that whatever it is you are right behind him.

I pray that he recovers soon and gets back on his feet. I was older than he is when diagnosed, it was not easy by any means. I guess it's not easier at all at 15. So maybe talking to someone can make good, but hey - if he doesn't want to than why force him to ?

All the best to you.

 

[LauraJ]

You should definitely ask about dilation and surgery as a last resort. My husband had a striture, the left him on TPN for month and tried to dilate. They didn't want to operate on an area that was already not happy! Unfortunately a second doc took over his case, pushed gor surgery and he had a temporary duodenal ostomy, his old doc. 2 months later they dilated his stricture reversed his ostomy.
His original surgeon was very annoyed. Surgery should be the last resort. Have they scoped or done contrast? Without looking they don't know if it is inflammation or scar tissue. Push for a scope etc, demand they check what us happening inside before they even consider surgery.

 

[LauraJ]

Nearly forgot, does he have an ng tube? Every time my husband had an type of obstruction they put one in to empty things out and release the pressure.

 

[Clash]

My son had narrowing in his TI, at his ileocecal valve and a bit above. He recently had surgery to remove the area. There were deep ulcerations and fissures in the intestinal wall. He had been on remicade, high dose and mtx. Although the area was bad he had no GI symptoms. His only symptom was an inability to gain weight.

I hope the meds work quickly to turn things around for your boy. If it is due to inflammation remicade is great at controlling that for most people.