Surgery for son, 1st time, please help

[AntsMommy]

Hello everyone,

My son, new to Crohn's, had an upper GI series and small bowel (??) test last Friday. (barium x-ray) He also has an upper endoscopy and colonoscopy scheduled next Tuesday.

The pediatric GI specialist left me a message (we are playing phone tag and now she says she is off and I can't reach her until Friday!) saying that the xray results are abnormal, that he still has a narrowed terminal ileum and they are concerned about blockages (which is why he was hospitalized last month and led to his diagnosis) and that they feel the tests scheduled next week will be too painful. They would like to schedule him for surgery before hand.

I have NO other information. She left a # for the surgeon she'd like us to see, but they also are gone for the day. Does anyone have any information at all about this surgery? Will they remove the narrowed portion? Recovery? Colostomy? (please, no!!)

Sorry, I am so clueless, but I am new to this and surgery so soon was completely unexpected and I can't reach the physician.

Thank you for any info you can provide!

Kelly

 

[DustyKat]

Hey Kelly,

Deep breaths! Okay, there are many people on here that have had that surgery, my daughter included. Unfortunately her surgery was an emergency as her bowel perforated. If the surgery goes ahead, yes they will remove the narrowed portion. One advantage you have, and it is a big one, is the operation will be done under controlled conditions and by that I mean the surgeons will be going in pretty much knowing what to expect, therefore the least amount of bowel will need to be removed. It won't sound like it at the moment, it's pretty scary ay, but this is a much better situation for your son to be in. I would say as a general rule most people do not need a colostomy for a straightforward resection. Here are the links to a couple of threads of members that have recently had surgery to the terminal ileum. Dougute's would be more like my daughters as far as amount of bowel removed. I am assuming that your son would most likely be more like Dallie's daughter? ........

http://www.crohnsforum.com/showthread.php?t=12219

http://www.crohnsforum.com/showthread.php?t=13324

Even with emergency surgery and a large amount of bowel removed my daughters recovery was uneventful and she was back at school after 4 weeks. In Dougute's thread I have outlined what you may expect post op in hospital. I hope this helps!

Take care,
Dusty

 

[DustyKat]

Oops, mean't to add..........did they say it will be a resection or just surgery? It may be a strictureplasty in which case they don't remove any bowel but rather use a technique to open up the narrowed portion of bowel. Sometimes they do both a resection and strictureplasty. Sorry, probably confused you even more now!

Dusty.

 

[CDDad]

Hi Kelly,
Sorry to hear about your son. What hospital are you using? I was just wondering if you're going to a Crohn's speciality hospital like Mt Sinai? If not, might be worth the trip for a consult there.

 

[AntsMommy]

Thank you both for your replies!

Dusty, I checked out both threads. Both are very encouraging, thank you! A little scary, yes, but better to know what to expect. I am concerned about my poor son missing so much school, too.

Joe - I am going to the Maria Fareri Children's Hospital at Westchester Medical Center, although today I just found out that the surgeon the Ped GI referred me to doesn't accept our insurance. Mt. Sinai is two hours from me, but Maria Fareri is also over an hour so I don't mind traveling. Do you think I should be getting a second opinion at Mt Sinai?

Oh and Dusty - Dr did not say resection, just surgery - so maybe she does mean the other procedure. She isn't available until tomorrow and I will then know more!

Thank you!!!!!!!!

 

[Zalanicht]

I had 28cm of Ileum removed because of a narrowing and blockage. Send me private a message if you have any questions about the surgery or anything.

 

[kello82]

hey kelly.....i currently go to mt sinai for care and i highly recommend them. the organization of the institution itself is a tad...dodgy...lol but the docs are top notch and are well known for their work in IBD. just figured id give you that info.
good luck hope your son gets whatever he needs.

 

[CDDad]

Hi Kelly,
I don't know anything about the pediatric program at Mt Sinai, but maybe 13 is old enough where a "regular" surgeon could handle it.

You want a Colon and Rectal surgeon that handles Crohn's and GI disorders every day. Hopfully that is what your GI recommended, and not a general surgeon that does it a few times a month.

My last surgery was at Mt Sinai, and it's a bit of a hassle, but I wanted to be in the best hands. My sugeon was Dr Bauer - does not take insurance so I had to submit the paperwork myself. Of course, he was way more than the "customary charge", so I had some high out of pocket, but was glad to pay it.

But, there are great surgeon's everywhere. Meet the surgeon at Maria Fareri, and see how you feel. When I met with Dr Bauer, I just had a feeling I was in great hands. You want that same feeling. I think most of the top level surgeons at Mt sinai will not take insurance.

Here is a link to a list of the Surgeon's using keyword "Colon Rectal Surgery"

http://www.mountsinai.org/vgn-ext-t...ctal+Surgery&sp=Surgery&ips=&g=&hrs=&s=Search

When you click on their names, you can see what plans they take. For example, Dr Bauer's younger partner is Dr Chessin, and he takes many plans.

 

[AntsMommy]

Thank you all for your replies and information!

Thanks CD for the link, I will also check that out.

I wanted to update you on the situation and get some input. The Ped GI says she is not certain that he will need surgery yet, but is sending him for the surgical consult to see. He has 6 cm of small intestine that is extremely narrowed and she is concerned about blockages.

In the meantime, she prescribed him Entocort. I went to pick it up and was presented with a $1,208 bill. Insurance would not cover this medication, so now she is putting him back on prednisone, 30 mg. for 2 weeks. (She said for the 'stricture')

In the meantime, I have a name of another pediatric surgeon. I am not sure how frequently he handles crohn's patients or if it is his specialty. His practice is closed until tomorrow. Sigh.

 

[AntsMommy]

Hi Kelly,
When you click on their names, you can see what plans they take. For example, Dr Bauer's younger partner is Dr Chessin, and he takes many plans.

Thanks again CDDad. Unfortunately, not one of the surgeon's listed take our insurance! (MVP) I am not in the position to pay out of pocket at this time.

Thank you for your help, though.

 

[CDDad]

I wonder why your insurance would not cover Entocort. Was it for a generic version?
The stricture she mentioned is the narrowing. Prednisone should be effective, but the long term side effects are so bad. Hopfully he'll be off in two weeks and stay off.

Good luck to you and your son.

 

[AntsMommy]

I am not sure. Insurance would not cover Pentasa either when we were first discharged from the hospital, and because of that he is taking Asacol instead. Is this normal?