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Surgery Question

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Ulcerative Colitis
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Ruby777
New Member
Joined : Jul 2018
Posts : 13
Posted 10/17/2020 10:08 AM (GMT -7)
Hi Everyone,

Has anyone on here had Jpouch surgery?

If so how long does it take?

I'm not sure I will go for the pouch and I might just stick with the colostomy. This is because Ive heard bad stories about the pouch such as pouchtits.

I used to be in Remission with Mezavant for 5 years but then I had a stressful situation ended up on Antibiotics and ended up in a major flare and was hospitalised.

I used to have proctitis but now have sever left sided colitis. I was also put on Azathioprine along with Mezavant and did well after my hospitalisation for about a year but a week ago I started to flare. I got bloods done and I actually wanted the steroids but the GPs said my blood work was not bad enough to have them.

I don't want to go on biologics and am thinking maybe I'll go down the surgery route.

How long does it take to get the first surgery?

This is also a controversial question. Has anyone used nicotine patches to remmission their Ulcerative Colitis? I met a cryropractor who said he had Ulcerative Colitis and he used nicotine patches to remission. Has anyone else used these?

Thanks everyone
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18315
Posted 10/17/2020 11:13 AM (GMT -7)
Ruby, I can't answer your questions about surgery. Here in the states unless someone is severe & has failed all medications including a couple of biologics insurance will not cover surgery. Also, a surgeon has to agree with the need for surgery. Any of the surgeries can come with it's own set of potential complications, nothing is guaranteed 100%, including medications used to treat the disease.

You mentioned a GP being involved with your care, is there a reason you are not seeing a gi?
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Ruby777
New Member
Joined : Jul 2018
Posts : 13
Posted 10/17/2020 11:37 AM (GMT -7)
Hi straydog,

I live in the UK and I am seeing a specialist IBD nurse too, as well as my GP. They both said my bloods were not bad enough for steroids. The IBD specialist wants a stool sample which I have to give on Monday.

I'm just afraid of biologics. Someone I work with has had the surgery and she is doing well and is on no meds. She had 1 biologic fail.

This is covered on the NHS so we don't have to worry about insurance. It's just last year my flare was so bad they said I might need emergency surgery but luckily Azathioprine and Mezavant worked, but now I'm having problems again, so I was thinking about surgery. I'm not entirely sure they will let me to be honest but I want to find out more about it.

I'm nearly 44, 44 in November so I am older and don't know if I will handle it as well as the person I work with.

Thanks for replying
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 921
Posted 10/17/2020 3:40 PM (GMT -7)
I would say biologics are safer than azathioprine - they only target one component of the immune response whereas azathioprine is a more global immunosuppression. I would really try to see a gastroenterologist who specializes in IBD before making any drastic decisions regarding surgery. I'm from the UK originally and would not trust anyone less than a consultant gastroenterologist to handle a refractory case of IBD.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 921
Posted 10/17/2020 3:43 PM (GMT -7)
Ps I would also consider 44 to be quite young for surgery, assuming you're generally in good shape otherwise.
If 3 time champ is around he had surgery age 60 (i think?) and is doing great
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Mrs. Brady
Regular Member
Joined : Feb 2015
Posts : 279
Posted 10/17/2020 5:36 PM (GMT -7)
I have had the first 2 surgeries and my third is scheduled in November. I would try biologics first. Just my opinion. I was steroid refractory and tier 1, 2 and 3 meds failed.
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chocotofu
Regular Member
Joined : Aug 2019
Posts : 35
Posted 10/18/2020 12:02 AM (GMT -7)
Why would you choose surgery before attempting biologic medication or even steroids? Biologics like Remicade are extremely safe. I'm shocked your doctor would even consider surgery before trying biologics.

And you do realize that even with surgery you can STILL experience UC symptoms?
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Ruby777
New Member
Joined : Jul 2018
Posts : 13
Posted 10/18/2020 10:05 AM (GMT -7)
Hi chocotofu, I don't know if they will allow me to have surgery before I try biologics, it's just I'm afraid of them personally.

I do realised there may be problems even if I have the surgery but there may not be also. There are people who live full lives with surgery.

Ive only thought of it because Ive been struggling. I've done a lot of diets and for me the best diet is actually a low histamine diet. I struggled with kifer, and fermented foods but low histamine is very limited. Much more than paelo or SCD. Because I personally struggle so much I was thinking it may be an option and I'm worried about reacting to the biologics. Any way thanks everyone 😊
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1657
Posted 10/18/2020 6:29 PM (GMT -7)
I chose surgery before remicade or humira bc they lower your immunity and I don’t have a spleen and I was in late 50s. My gastro and Surgeon agreed. All the above contribute to lower your immunity which isn’t good in this day and age (I had Corona in March so what would of happened if I was on a biological??). Tough choice but I made the right choice. Had surgeries in ‘18 and life is beyond good compared to anxiety of 32 yrs with UC. Hope the best for u all
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1657
Posted 10/18/2020 6:38 PM (GMT -7)
Poopy I was 59 but have always been in good shape. 6’5-230lbs. I’m a contractor so have always done physical work. I didn’t like being a hostage to UC. Last round of Pred was not healing a flare and it always did for me so I knew it was time. Actually last colonoscopy my Dr said colon looked horrible/scared which wasn’t a surprise after 32 yrs. in recovery room he suggested Remi of Humira and I said NO I would rather go surgery route. He said I can’t disagree with you so I made right choice
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RunJerRun
Regular Member
Joined : Oct 2017
Posts : 131
Posted 10/19/2020 9:48 AM (GMT -7)
Hi Ruby,
I had my (1st of 3) j-pouch surgeries in February 2018. Before surgery I was in really rough shape and had no luck with medication (even prednisone). Because of my cancer history, my Dr’s steered me away from most the biologics. They put me on Entyvio because it was considered safer. Unfortunately, after several infusions/ months, I saw no improvement. By the time they told me Entyvio had failed, I was so sick I was almost looking forward to surgery. Most people have good results with biologics and go into a sweet remission with them. While my life is a thousand times better now then when I was suffering with UC, I’m glad I at least tried biologics before deciding to go forward with surgery. All of us have to make our own choice. I would just recommend getting as educated as you can about all your options. That might include finding a really qualified surgeon to talk to.
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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3691
Posted 11/13/2020 10:33 AM (GMT -7)
Why would you want a colostomy over an ileostomy? Just curious
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 11/15/2020 7:31 AM (GMT -7)
I think she mistyped. You can't have a colostomy with uc surgery. A colostomy comes from the colon and uc surgery removes the colon.
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