"Surgery" - But I feel good???

[stevo70]

I have had all the tests done lately and my Gastroenterologist just called me (at 6 p.m., never good!) with some results of my capsule Endoscopy last week. These are the tests I have had lately;

CT Scan: Had this for Testicular Cancer check-up and it came back "Small Bowel displays Stenosis, Mucousal Thickening, and Close approximation of bowel loops. Consistent with active Crohns Disease.."

FOB Test: Indicated Blood in stools (Never seen blood myself however)

Blood Test: Iron Deficiency Anemia (Been constant for about 5 years). Other bloods good..

Colonoscopy/Endoscopy: All clear. Able to check into Duodenum and terminal Ileum and no signs of crohns.

Capsule Endoscopy: Have an appointment next Monday to discuss results but GI contacted me tonight stating that if I experience any pain I should get to Emergency ASAP. Appears there is severe scar tissue and that the capsule is most likely still "Inside" me. It didn't pass during the test and was "bouncing around" off scar tissue. (Will have X-Ray tomorrow to find out). GI wants to discuss surgical options on Monday.

I have been on 5 ASA, Pred, Remicade, Methotrexate and an attempt at Aza which I didn't tolerate. I am currently on 20mg MTX (weekly) and down to 5mg Pred (daily). I generally feel great and work everyday. I ran 5km this morning then hiked 10km. I feel good.

Even if the capsule has passed, I think my GI is going to suggest a resection owing to the damage:

Has anyone (whilst feeling great) had a resection to resect the bowel, before you get an obstruction?
Did you come out it feeling better afterwards?
Is this likely to rid me of the stomach pains?

I would be very interested to hear from anyone who may have similar circumstances. It is annoying I have to consider surgery whilst feeling ok... I had no choice last time as I had a blockage in 2002. I guess I am also worried about how much bowel they will need to remove. Is my GI likely to give me an indication of this prior to surgery?

Thanx for listening, hope someone may be able to answer.
Stevo.

 

[Mama & Mac]

Good morning Stevo,
I'm sorry to say that I have not had a resection before a obstruction, but god I wish I had, I do have to say that if your doctor is willing to correct the problem before you obstruct if it was me, I have to say I would jump on the chance, I'm having partial obstructing almost every few weeks and my doctor will only repair it will I can no longer open the obstruction with bowel rest........I know it's not what you wanted to hear! But good luck " my opinion" wouldn't it be great if your feeling good, they fix the problem fore it becomes a problem and you heal that much faster.......hip hip hurry!! Sorry for the long post! And not answering your question But I wanted you to know someone is reading your message and I do sympathize.
Mama & Mac

 

[cgull1]

Hi Stevo--

My husband had a small bowel resection, but he was feeling okay before hand. His symptoms, however, were GI bleeding and when he lost enough blood, he would get light headed and a high pulse. After transfusions, he felt great, but kept losing blood. He had his surgery about 7 weeks ago, removing over 4 feet of his small intestines. Seemed to be recovering well, but then was showing symptoms of anemia (hemoglobin back down to 6) and more GI bleeding this week. Back to the hospital again! Hope things go well with you!
Carla

 

[Jennifer]

My resection was not emergency surgery but it was done to prevent further damage and rid me of risk of an obstruction for now. The medications I was on wasn't reducing the inflammation and the scar tissue was simply building up so they decided that surgery was my best option to start out again with a clean slate (sort of). I felt generally ok before the resection but certainly not 100%. Since then I've been in remission (been over a decade). So yes it should help you but its up to you, your GI and surgeon to figure out what's best for you. Usually they don't know exactly how much they will be taking out until they are in there. I think my GI told me a foot roughly but they only removed 8 inches.

You don't really want to wait until it is an emergency but its up to you.

 

[stevo70]

Hello everyone and thanx for the replies. I had the XRay and guess what??? No Pillcam..
Must have passed so that is a relief. However, Dr still wants to discuss surgery as it appears I have a similar situation to Crabby. I have excessive scar tissue build-up confined to the Ileum. This is causing my stomach discomfort and Iron defieciency (bleeding) Every other part of my intestines appear unscathed at this stage.

Their is deep ulceration, scar tissue and some strictures (in the ileum) however their is normal tissue in between. I am deeply concerned about surgery as I am not sure will they only take the worst sections or because the damage is in parts across my entire ileum will they take the whole ileum?

I guess I am wondering will they remove ulcerated (inflammed) areas or do they primarily stick to the severe scar tissue? I guess I am a bit nervous as this time around I know a bit about Crohns and hope to not end up with a Stoma, especially given the majority of my bowels are ok.

Would love to hear from someone with similar experience.

Thanx again, Stevo.

 

[Jennifer]

Most people are told about the possibility of a stoma before surgery but its certainly not often (I don't have one but was warned of the possibility as well). There's a lot of bowel in there and a long section is the ileum too. Chances are if its good or more than likely salvageable then they wont remove it BUT its very possible that they will remove any portion of the bowel that looks even remotely affected because they don't want you back in surgery a few months later. They can leave the unaffected bowel in there but you'd have two resection sites and that's never good cause now you have two areas to possibly worry about in the future (most patients often have issues again at the resection site when/if they flare again).

Did your GI say roughly how much of your ileum was affected? Chances are they wouldn't take out the entire thing.