Vedolizumab vs. Surgery

Good morning Ruth06943 - I struggled with UC for 5 years culminating in 2 serious “Flares”. I was terrified of surgery but after an infusion of Infliximab which didn’t work I was left with little choice. It’s 27 months since I had my Colon removed and an Ileostomy and 10 months since a second operation to removed my Rectal Stump (not a glamorous technical term). There’s is the obvious downside of managing the Stoma (physically & psycologically) but many benefits including getting your health back. I have given up the battery of drugs some of which are fairly grim and I can do anything I did before. I eat and drink what I choose and have put weight on. I’m fortunate in benefitting from the support of my lovely wife. The first operation is major surgery (5 hours) and recovery is slow which is something you need to factor in. After the first operation you have options and could opt for a J pouch rather than a Rectal Stump removal. Surgery has been a positive experience for me. I feel very much alive.

Dear ruth06943 I became unwell with UC in 2013. Steriods All that time & various meds-  none worked. My story similar to Darasdad. I’m the female version! 

My colon was removed on 7th February 2017 & I’m awaiting the second op to have the rectal stump removed. Re infections & healing after op whilst on meds. I was on steriods before op & they decreased the dosage but kept me on them to keep me well enough for surgery. They removed the colon but left 15cm attached to anus as This area could take longer to heal & have complications. Also gives options to have Stoma reversed & have j pouch later.  I continued to take steriods tapering off & stopping about 6-8 weeks after op. I’m having endoscopy on rectal stump 1st Feb & awaiting next op after that. I’m not on Any meds at the mo other than calcium. I’ve got pentasa for inflammation in stump but that’s not working. Hope you can get all the answers from medical team. I’m sure they will only have you on meds that aid your healing. 

Dear Ruth,

A super response from Ruth.

I'm not in a position to make any comment as to date I've not been in your situation.  So my only contribution is to wish you every possible success in making the decision which is right for you and that whatever you choose brings you real and long-lasting relief from this wretched condition. 

With thoughts and prayers.

Peter A   

Dear ruth06943

My UC was severe from onset & I had it right the way around my bowel not just in the left side. I was disappointed but wasn’t surprised that I still have some inflammation in the small amount of bowel that is left after the first op. I would rather not have a Stoma some days BUT there again  I wished I’d Never got colitis at all! It is very easy to be in denial about how unwell you are & some time after the op you forget how your life was dominated by trips to the loo or not even being able to leave the house, & perhaps feel a bit regretful . That’s how bad I got, couldn’t even go out for weeks. Then you snap out of it & get on with your life being very grateful to the surgeons. 

I can now go out knowing I won’t be constantly searching for a loo sometimes not even getting there in time! 

I can swim, go on holiday- lead a ‘normal life’. 

No body knows you have a Stoma, unless you want them to. 

Once I have the second op to remove the rest of the bowel I should be uc clear! I feel lucky. 

Before my op I heard some very negative terms used regarding a Stoma even from some professionals . I decided very early on that when I had my Stoma I would ‘ not look away’ when I first saw it because this is MY Stoma ( Stanley) & I need to deal with it myself. I was not repulsed by what I saw. On the contrary I was really pleased with how small & neat it looked. A year later my Stoma has shrunk to half the size it was straight after the op. I can change by bag in 5 minutes. When I first had it it took me an hour in the bathroom- what was I doing? Lol

There are hilarious moments when I wake up & the bag is like a zeppelin because it’s full of gas. 

Sometimes in the early days it made various farty noises but I just blamed the dog or my grandkids, lol. Please keep asking loads of questions to Hospital & Stoma wearers. My Stoma nurse watched my op & told me afterwards how they did it. I wanted to know Everything! 

Good luck with decision. B x

Hi Ruth...

My story is similar to yours, I had about 2 3 infusion of inflixamab and it just wasn't working and I was still bleeding, also my colon had began to swell and a fear that it could burst. They also gave me the choice of Vedolizumab or surgery, they said it would take at least a few months before any signs would show if it was working or not, but by this time I had been home and unable to do anything for 6 months + and I just had enough. I decided to have my colon removed and have the a ileostomy. Im a year on now and life is so much better, I mean I have to get up in the night to empty my bag but that is the only real draw back that I'm still trying to get used to. The procedure is pretty straight forward, the recovery is long and hard and takes some getting used to but you will have the support of the stoma nurse.

I hope all goes well with whichever you decided and please ask any questions you have. 😊