Crohn's Disease Forum » Surgery » Worried, Need feedback!

12-10-2014, 05:53 PM   #1
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Join Date: Dec 2014
Location: Montana
Worried, Need feedback!

I have been living with crohn's disease for the last 16 years. I have had my ups and down but in all reality nothing real serious. In April my doctor called and said that I have to have a colonoscopy (no big deal right. We have to have them all the time.) A week later the doctors office calls and says that I have a blockage and I will have to have surgery in 6 to 18 month. Okay, I freak out a little (okay a lot). I ask the doctors office what I am suppose to do. The doctors office says that I need to do the x-ray where they make you drink that die so they can see how bad the blockage really is. I say okay. I do the x-ray and they say that I do have a blockage and a lot of scar tissue. The doctor then says that I will have to have surgery but when is up to me. He tells me that when I can no longer handle the pain they will do surgery. Does this sound right to all of you? Has this happened to any of you? I am lost and do not know what to do. Thank you all for reading this and I would appreciate any help or insight that anyone can give me.
12-10-2014, 06:32 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

I've had surgery because of scare tissue. Unfortunately surgery is the only treatment. It won'tget better over time so eventually surgery is required. Going on a no fiber low residue diet can help but it's a bandade solution. My recommendation, based on my experience, is to not wait until it becomes urgent/emergency surgery (a total obstruction). It's better to have elective surgery.
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12-10-2014, 07:58 PM   #3
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Muppetgirl's Avatar
I second what DJW has said. Getting your head around surgery can be tough, but not much will be getting around the blockage without it. I may have read your post wrong but it sounds like you're saying you were not really aware there was something wrong until they found it? If this is the case it seems odd that you were advised to base surgery on how you are feeling. Waiting could lead to an emergency op. Even if it does not, in my experience obstructions of any sort can be extrodinarily painful and unpleasant- not something I would wish on anyone. If you can face it I would recommend not waiting. Good luck.
12-11-2014, 12:43 PM   #4
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Join Date: Dec 2014
Location: Montana

I did have pain before the colonoscopy and I thought that I was having a relapse but my doctor said that my blood tests were normal so I was not having active Crohns. At this point he put me in a very strict diet (meat and potatoes specifically). No one had ever said anything about a blockage occurring so I guess I never thought of it. I know that I have had Crohns for a long time but I really don't know that much about it. To me it is something that I just have to live with. I am just very confused because I feel like my doctor is not giving me information to base my decision as to whether I have surgery now or later. I am suppose to go by my pain threshold and how much pain is one person suppose to go through. Thank you for your reply. I appreciate and information that is given to me.
12-11-2014, 12:56 PM   #5
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Clash's Avatar
I agree with the above posters as well. Since you can't heal scar tissue then surgery is the only way to fix the issue and ensure obstructions don't occur. I'm with DJW in that I would not wait until it was an emergency situation. If you know it has to come out then I would set a date and have the time to wrap my head around the upcoming surgery.

My son had a small bowel resection, an ileocecectomy. Setting a date and preparing for the surgery mentally and emotionally was advantageous to my son.

Maybe you could make a list of your questions and concerns and then make an appt to go over them with your GI. That could possibly give you more confidence in the decision and more insight to your disease state.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-11-2014, 12:57 PM   #6
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Join Date: Dec 2014
Location: Montana

I want to thank you for your reply and I looked up the no fiber low residue diet. I am pretty much on that diet but my diet is a little more strict. Thank you for the suggestion. I will be seeing my doctor in the next couple days and I will be asking him again about the surgery.

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