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Crohn's Disease Forum » Surgery » Doctor is pushing surgery


06-20-2017, 07:20 AM   #1
angrystomach
 
Join Date: Jan 2017
Location: Toronto, Ontario
Doctor is pushing surgery

Hi all,

I was diagnoses with Crohns 7 years ago and according to recent scans I have 15cm of bad bowl at the terminal ileum with one fistula to my colon and one abscess. I consider my Crohns mild as it only ever bothers me during a flare up that may happen 3-4 times a year. Even during a flare up it doesn't really bother me enough to severely effect my quality of life as I am still able to work and eat with minimal pain. I would say that I get a severe flare up once a year that may actually cause me to take a sick day or two and ease up on my food intake to let the flare up subside. These flares typically last 3-4 days and are usually caused by a high sugar intake (I have a bad sweet tooth). 3-4 days of watching what I eat along with my meds clears everything up.

My doctor is really pushing for a resection to clean everything up and start new. During a recent colonoscopy my colon came back with a perfect bill of health but my doc was unable to get a look at my crohns area as there is quiet a bit of scar tissue clogging up the area. My Doc said that even though I'm feeling good he wants me to get it taken care of now before it gets bad. Post opt he would take me off all medication until any signs of CD returns at which point I would start remicade. He is hoping I stay in remission for a while.

My biggest concern with the surgery is the possible ever lasting urgent diarrhea situation that I hear can happen when removing that specific area of intestine. Is it really worth saving my self from a hand full of days with mild discomfort for the chance of having to worry about being around a washroom 24/7 for the rest of my life? I meet with the surgeon next month but I was hoping some of you who had a minimal resection can chime in on if you were ever able to have normal BMs again.
06-20-2017, 07:25 AM   #2
Lisa
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From the extent of the disease you describe, I would NOT call that a 'mild' case...yes, your SYMPTOMS may be mild - but there is damage being done and being allowed to continue to develop.

You mention scar tissue which limits how far your doctor was able to get a scope. That is a ticking time bomb - sounds like it could cause an obstruction at any time, which COULD be a medical emergency.

While no one can obviously tell you what you need to do with your own body, you should seriously consider what unseen damage is being done by allowing the known issues to remain vs. what surgery may resolve. Elective surgery, with a controlled situation vs. emergency surgery with potential serious complications.
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
06-20-2017, 09:01 AM   #3
rorho19
 
Join Date: Mar 2017
Location: london, United Kingdom

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Angrystomache,

Yeah I am in similar situation except that I have pain daily and have been steadily loosing weight for 4 years.about to have resection in the next few weeks.

I think the bottom liner is how much worse emergency surgery is than pre planned...open not laparascopic and maybe six months real recovery time rather than 2-3 weeks.
06-20-2017, 09:43 AM   #4
JessPeper
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Hi all,

I was diagnoses with Crohns 7 years ago and according to recent scans I have 15cm of bad bowl at the terminal ileum with one fistula to my colon and one abscess. I consider my Crohns mild as it only ever bothers me during a flare up that may happen 3-4 times a year. Even during a flare up it doesn't really bother me enough to severely effect my quality of life as I am still able to work and eat with minimal pain. I would say that I get a severe flare up once a year that may actually cause me to take a sick day or two and ease up on my food intake to let the flare up subside. These flares typically last 3-4 days and are usually caused by a high sugar intake (I have a bad sweet tooth). 3-4 days of watching what I eat along with my meds clears everything up.

My doctor is really pushing for a resection to clean everything up and start new. During a recent colonoscopy my colon came back with a perfect bill of health but my doc was unable to get a look at my crohns area as there is quiet a bit of scar tissue clogging up the area. My Doc said that even though I'm feeling good he wants me to get it taken care of now before it gets bad. Post opt he would take me off all medication until any signs of CD returns at which point I would start remicade. He is hoping I stay in remission for a while.

My biggest concern with the surgery is the possible ever lasting urgent diarrhea situation that I hear can happen when removing that specific area of intestine. Is it really worth saving my self from a hand full of days with mild discomfort for the chance of having to worry about being around a washroom 24/7 for the rest of my life? I meet with the surgeon next month but I was hoping some of you who had a minimal resection can chime in on if you were ever able to have normal BMs again.
I had an emergency resection done three months ago. The D only lasted two weeks and now I'm having the most regular bm's I've had in years.
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3rd Generation

Dx with CD 4/16

Ileocecectomy 3/17

Reoccurrence 8/17


Current Medications: Lialda 4.8g daily, Azathioprine 100mg daily, Prednisone 20 mg daily. B12, Folic Acid, Primal Defense probiotic.
06-20-2017, 10:01 AM   #5
angrystomach
 
Join Date: Jan 2017
Location: Toronto, Ontario
I had an emergency resection done three months ago. The D only lasted two weeks and now I'm having the most regular bm's I've had in years.
thats great to hear! Do you know how much they removed? From what I can see 15cm seems to be on the low side of what a lot of people are getting removed so I do have that going for me.
06-20-2017, 10:17 AM   #6
JessPeper
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I had 20cm removed. Before surgery I didn't have D at all more so the opposite so I thought it would last longer than it did. I was pleasantly surprised when it slowed down so soon.

As Rorho19 said , you are better off to have a planned surgery if you have the option. I was not able to plan for mine. I woke up in the night in horrible pain and throwing up. Went in to the ER at 6am and didn't leave the hospital for 5 days!

Best of luck to you!
06-20-2017, 10:22 AM   #7
rorho19
 
Join Date: Mar 2017
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jess..pleased to here the d only lasted 2 weeks..i'll be counting the days after my op..hope the wound is healing well now and life getting back on an even keel...
06-20-2017, 10:57 AM   #8
JessPeper
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Its almost fully closed up now!
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