I think I want surgery...afraid my surgeon won't agree.

[Adam1971]

Hi Folks-

As my first appointment with a surgeon approaches (Nov. 21), I am feeling more apprehensive about whether or not the surgeon will think I am "bad" enough for surgery. I am curious if I am worrying over nothing. Basically, I am afraid he'll think my stricture is too small, and my symptoms "manageable" enough to put off until it is worse. I am convinced it has to go, the sooner the better. Every day, I have varying degrees of nausea, pain in my right lrq, bubbly and gurgly and over gaseous gut noises, usually on right side (ascending colon I think), and I still feel restricted to low res diet after 8 months. Basically, I usually feel like shit, even though Humira is controlling my inflammation (confirmed in september with colonoscopy).

Won't the stricture eventually get worse? Doesn't it have to come out eventually? Am I off base?

Thanks.

 

[katiesue1506]

Hi Adam,

I guess it really depends. I have a stricture in my splenic flexure and the surgeon wants to leave in in as long as possible provided its not inflamed or bleeding. Currently its just scar tissue and has been well managed through balloon dilation. It took a year or so of getting it dilated during every colonoscopy but the GI thinks this last time that he did it should hold for a while.

Now I had another stricture in the ileum that just wasn't getting better and the GI actually perforated it during my last colonoscopy (woke up with a bag). He said that area was super inflamed and friable and had to go (so he took about 5 inches of it out).

So it all depends on the state of the stricture and the likelihood of making it better with drugs.

 

[Adam1971]

Thanks, Katiesue.

My GI says that he could not get a pediatric scope into the stricture, right at terminal ileum. He also said that the inflammation appears to be totally gone after treatment with humira. That is why it seems to be entirely composed of scar tissue, and thus not really eligible for improvement based on meds.

The GI never mentioned balloon dilation as an option. I'm not sure why.

Thanks a lot for responding.

Adam

 

[Terriernut]

Adam, I dont think it's unreasonable to assume you may need surgery on a sticture that they cant get a ped scope through. A balloon dilation may be possible, but it depends on how extensive the scarring is.

Either way, leaving it isnt really a good idea. Especially since it's causing you issues.

Good luck! Hoping it all turns out well for you!

 

[katiesue1506]

That's exactly where my problem stricture was too. The GI was never able to pass a peds scope through the area. Then my last colonoscopy on 9-26 he was able to get to the area and decided to dilate it. Since I've been on Pred (prednisone makes your skin and tissues a lot thinner) for the better part of this whole year and it was very inflamed, it perforated during dilation (but the GI didn't realize it till I was recovering and in LOADS of pain).

I would ask him about balloon dilation and its feasibility. It may not be something they want to do with you, but dilating the area during colonoscopy is a lot less invasive than a resection. Usually you just feel a tinge of pain for a couple days in that area after the dilation.

You should also ask what would be expected if you did have a resection. Would you have to have a temporary illeostomy (like me) or would it be a simple resection? Would it be open surgery (laparotomy) or could it be done laproscopically (smaller cuts and less recovery time). Also would they take your appendix while in there (is that something you would want them to do or not do?) They did take mine since they were there.

I would also assume your doc will take to heart your personal feelings on the issue.

 

[Adam1971]

Well, I just found out that my surgical consultation has just been moved up a week, so a week from today I'll be having this conversation. I'm glad its been moved up. Its been hard waiting, not knowing what to expect or what will happen. I appreciate the information and support from those on this forum.

 

[Scaryman]

Well I've got three strictures they were able to pass a pediatric scope through it. But when the top G.I. In the field said that if I go on to methotrexate humira combination should work. But if I cannot taper from prednesone I'm in for possible resection. Very unique to everyone. My sig tells where 2 of the three strictures are. The other is below or around cecum.

 

[Adam1971]

Hi folks. I just realized I never updated this post. I met with the surgeon and he did not need any convincing. He was great. I am scheduled for 1 week from tomorrow (yikes). I feel good about the decision. I appreciate the support and advice provided here. Thank you.
Adam

 

[Adam1971]

Well I've got three strictures they were able to pass a pediatric scope through it. But when the top G.I. In the field said that if I go on to methotrexate humira combination should work. But if I cannot taper from prednesone I'm in for possible resection. Very unique to everyone. My sig tells where 2 of the three strictures are. The other is below or around cecum.

Did the doctor say whether or not the strictures were caused by inflammation or scarring? Just curious. Some literaure seems to say that humira actually hastens the scarring because it is so good at getting your intestines to heal. Just a thought.

Adam

 

[Scaryman]

I'm going on humira per his recommendation. So the strictures where caused by inflamation. Since humira was just recently introduced.

 

[2thFairy]

Adam... just a resection or resection with ileostomy? Either way, I'm glad you had a good result from your meeting with the surgeon!

 

[Adam1971]

Hi there...just a resection.

 

[2thFairy]

Cool!