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Crohn's Disease Forum » Surgery » To surgery or not to surgery ...


05-11-2017, 06:48 AM   #1
Trix-a-belle
 
Join Date: May 2017
Location: Manchester, United Kingdom
To surgery or not to surgery ...

Hi everyone. I'm new to this forum and in fact to the forum business as a whole but I feel as though I need to speak to other people who may be in a similar situation as me as I really don't know anyone else with Crohn's and I'm feeling very isolated right now.

So to get down to the facts, I was diagnosed with Crohn's over ten years ago (referred via private health care at my work) but due to a truly terrible GP the only treatment I ever received was repeated high doses of steroids which slowly became less effective with each round and resulted in extreme depression, weight gain and just about ALL the side effects. I was never under a specialist and I never spoke to anyone but my GP about my illness.

Last year I changed GP and like some sort of miracle he immediately referred me to a wonderful specialist and team at Hope Hospital in Manchester, UK.

I started Humira last year in October and it's been wonderful. I have no side-effects and my Crohn's has calmed down remarkably. I feel for the first time in years as though I can live a 'normal' ish life.

However.

My inflammation was previously very bad and widespread. I have now had two failed colonoscopies due to narrow stricturing which hasn't gone away despite the Humira. My specialist therefore referred me to a surgeon to discuss options.

Yesterday it was cards on the table time when I saw the surgeon. I'm at a higher risk of bowel cancer due to my age (47) and the length of time I've had Crohn's, the amount and spread of inflammation I've had etc. etc. But they cannot tell me whether I do or do not have any cancer because they cannot do a colonoscopy.

I had an MR scan a couple of weeks ago and I'm waiting for the results, but again that will not diagnose cancerous or pre-cancerous cells.

So the surgeon offered me the option of having a preventative Colectomy with ileo-rectal anastomosis, but explained there was a chance that this wouldn't work and I would end up having a full Colectomy with stoma.

Basically: Have the surgery and I didn't have any cancer, I'm fine but I may have a bag. Have the surgery and I did have cancer, I'm (hopefully) fine but I may have a bag. Don't have the surgery and I don't have cancer, I'll probably need the surgery one day anyway and I can never know if I have cancer or not. Don't have the surgery and I have cancer: I die.

Currently my specialist is talking about upping my Humira to once a week (it's currently once a fortnight) as my strictures are inflammatory and if we can get the inflammation down further they may be able to do the colonoscopy.

I am feeling very conflicted and upset by all of this and really don't know which way to turn. If I have the surgery will it seriously affect my quality of life? Will it improve it?!

Has anyone had a similar decision to make, and has anyone who has had the surgery got any advice?

I honestly feel like I'm living under a death sentence.

Thanks all
05-11-2017, 06:52 AM   #2
Sorebutt26
Senior Member
 
Join Date: Apr 2017
Location: United Kingdom
Hi everyone. I'm new to this forum and in fact to the forum business as a whole but I feel as though I need to speak to other people who may be in a similar situation as me as I really don't know anyone else with Crohn's and I'm feeling very isolated right now.

So to get down to the facts, I was diagnosed with Crohn's over ten years ago (referred via private health care at my work) but due to a truly terrible GP the only treatment I ever received was repeated high doses of steroids which slowly became less effective with each round and resulted in extreme depression, weight gain and just about ALL the side effects. I was never under a specialist and I never spoke to anyone but my GP about my illness.

Last year I changed GP and like some sort of miracle he immediately referred me to a wonderful specialist and team at Hope Hospital in Manchester, UK.

I started Humira last year in October and it's been wonderful. I have no side-effects and my Crohn's has calmed down remarkably. I feel for the first time in years as though I can live a 'normal' ish life.

However.

My inflammation was previously very bad and widespread. I have now had two failed colonoscopies due to narrow stricturing which hasn't gone away despite the Humira. My specialist therefore referred me to a surgeon to discuss options.

Yesterday it was cards on the table time when I saw the surgeon. I'm at a higher risk of bowel cancer due to my age (47) and the length of time I've had Crohn's, the amount and spread of inflammation I've had etc. etc. But they cannot tell me whether I do or do not have any cancer because they cannot do a colonoscopy.

I had an MR scan a couple of weeks ago and I'm waiting for the results, but again that will not diagnose cancerous or pre-cancerous cells.

So the surgeon offered me the option of having a preventative Colectomy with ileo-rectal anastomosis, but explained there was a chance that this wouldn't work and I would end up having a full Colectomy with stoma.

Basically: Have the surgery and I didn't have any cancer, I'm fine but I may have a bag. Have the surgery and I did have cancer, I'm (hopefully) fine but I may have a bag. Don't have the surgery and I don't have cancer, I'll probably need the surgery one day anyway and I can never know if I have cancer or not. Don't have the surgery and I have cancer: I die.

Currently my specialist is talking about upping my Humira to once a week (it's currently once a fortnight) as my strictures are inflammatory and if we can get the inflammation down further they may be able to do the colonoscopy.

I am feeling very conflicted and upset by all of this and really don't know which way to turn. If I have the surgery will it seriously affect my quality of life? Will it improve it?!

Has anyone had a similar decision to make, and has anyone who has had the surgery got any advice?

I honestly feel like I'm living under a death sentence.

Thanks all
Hi Trix-a-belle

What a tough decision... I'll PM you now

X

05-15-2017, 03:16 AM   #3
rorho19
 
Join Date: Mar 2017
Location: london, United Kingdom

My Support Groups:
I hope you got some support on this vis PM. I don't wish to put down's GP's because many are very good ..but my crohn's was missed for 6 months due to GP not taking my symptoms seriously. I had urinary urgency 24/7 - no sleep atall for 3 nights...sedatives just to sleep and he would not do anything..said I had weak bladder. Was actually pressure from bulging bowel due to 2 strictures in ileum...
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