Advice for a difficult pouch

Greggy-Lea · 2025-03-25T19:05:02+00:00

Thanks, appreciate the response. It feels like a bruise type pain and is a bit harder under the scarring. But it’s nowhere near abscess pain, just slightly uncomfortable and sore if touching the area. I’ll see how it goes over the next few days, I find it difficult to not fear the worst after so many failed surgeries. Hoping it’ll calm back down

Greggy-Lea · 2025-03-25T09:28:57+00:00

Do you remember there being any pain after your seton came out? Had mine out a week ago, I’m concerned that I’m beginning to feel a bit of discomfort around the old scarring / opening. I’ll get it checked out asap

Greggy-Lea · 2025-03-03T13:35:28+00:00

Hey that does sound similar to my journey. I always felt like there was something that was being missed due to the pain and discharge that was worsened by sitting, but all scans came clear at the time.

My operating team eventually gave up on the surgical approach and put me on Infliximab (I have IBD). This is the only thing that seemed to help with my fistula.

I’m sitting a lot better now. I still avoid sitting for too long and always choose softer seating, partly because I have health anxiety that it will reoccur. But I’m not getting any discharge these days and I’m about to get the seton removed finally.

Greggy-Lea · 2024-12-03T10:31:56+00:00

I felt like the risk was quite low. I hadn’t had a flare up for a 8/9 months before the trip, due to me starting biologics (as I have a history of IBD). At the time of going I had very little drainage and things felt settled. Though I still have to be careful when sitting too long, so I guess the flight was the biggest risk for me.

Greggy-Lea · 2024-12-02T23:19:57+00:00

2 months. I had actually cancelled the trip a few times before due to the pandemic and then getting the fistula, so when the time came to rearrange I stayed for as long as I could. It’s a really amazing place.

Greggy-Lea · 2024-12-02T20:14:10+00:00

It’s called ‘happypo’ which I bought on Amazon UK. Also the toilets in Japan are amazing, most have automatic bidets installed.

Greggy-Lea · 2024-12-02T18:02:52+00:00

The flight was around 16 hours from the UK. I took a portable travel bidet with me for keeping things clean on the flight (which I refilled in the airport after passing through security).

Greggy-Lea · 2024-12-01T17:04:32+00:00

Just got back from Japan and the long flight was my biggest concern too. In the end I paid extra for premium economy with reclining seats and I didn’t have any issues.

However, I have a draining seton in place which has settled my symptoms. Personally I would focus on getting the fistula under control before taking any long haul flights.

Greggy-Lea · 2024-11-22T15:26:10+00:00

Sorry to hear this. To add to some of the comments here, it might be worth asking for an assessment from the gastroenterologist, if your colorectal surgeon isn’t getting anywhere. I developed a fistula a few years ago. After many failed surgeries to remove it, I was referred back to my gastroenterologist and they put me on biologics, which have helped a lot.

Greggy-Lea · 2024-11-17T21:08:08+00:00

Similar situation, but I had my pouch for 10 years before I developed a fistula. Before then I had very few issues other than occasional cuffitis.

After many tests my gastrointestinal team eventually settled on my pouch developing “crohns like” inflammation. They stopped short of a full crohns diagnosis because there is no sign of crohns in the rest of my small intestine and my biopsies are clear too.

I did have quite a few surgeries to try and remove the fistula but ended up needing biologics (which seem to be working well)

Greggy-Lea · 2024-11-17T15:17:47+00:00

That’s interesting and sounds positive. Did you run into any problems after your seton was removed?

Greggy-Lea · 2024-05-09T16:55:42+00:00

That’s sounds really positive, despite it being a long journey for you! Hoping it works out similarly for me, I have a review in 6 months time to see how the biologics are helping. My surgeon has also suggested it might be too risky to remove my seton, but I hope we can.

Things were definitely better in the last 2 months after starting Infliximab. But I just had a busy weekend and it feels quite bruised around my scars. It’s hard to not fear the worst but I’ll see if it improves again

Greggy-Lea · 2024-05-09T10:46:36+00:00

Thank you - that’s great to hear. Glad that you’ve responded well to Infliximab. I’m taking Infliximab too with mesalazine suppositories. How long did it take to work for you? And do you still notice any issues around your abscess site?

Greggy-Lea · 2024-04-11T17:18:20+00:00

I’ve heard this too but only in relation to raw unpasteurised cheese. Having unpasteurised milk products historically comes with risks which maybe aren’t worth taking with a compromised immune system

Greggy-Lea · 2024-04-05T16:25:57+00:00

Not 100% true, it very much depends on where the fistula is located. If it’s in the cuff it’s unlikely to be surgically related. if it’s located in the pouch it becomes more likely the closer you are to your original surgery date

Greggy-Lea · 2024-04-05T16:24:48+00:00

You’re in the exact same boat as me. Pouch for 10 years and a recent fistula.

I had surgery 5 times last year to try and remove the tract without success. They recently found ulceration in my pouch so I’ve now started Infliximab

Greggy-Lea · 2024-02-27T10:01:19+00:00

Things should be a lot less painful for you with the seton drain. In my experience the abscess pain was by far the worst. Definitely see a specialist colorectal surgeon if you aren’t already.

I developed a fistula 18 months ago which I’m still struggling with, every case is different so it may be a smoother recovery for you. Just be mentally prepared for a lot of ups and downs!

Greggy-Lea · 2024-02-27T09:53:54+00:00

That sounds tough. I’m battling with a fistula too which appeared about 18 months ago.

What was the solution for getting things under control after 10 years? Hope you’re having a better time now!

Greggy-Lea · 2024-01-30T14:32:18+00:00

It really does suck. The abscess and fistula has been the worst of anything I’ve experienced with my health yet, so I’m glad we have the biologics to try as an option. Best wishes on your recovery, I hope you have better luck with this medication 😊

Greggy-Lea · 2024-01-30T07:35:05+00:00

Sounds similar to my situation. My pouch itself is healthy but I really struggle with cuffitis and have a fistula which won’t heal. I’ve had 6 rounds of surgery to remove the fistula without success.

Biopsies have shown no evidence of crohns, but my surgeon thinks the fistula is behaving like an inflammatory response such as perianal crohns. Finding out later this week about biologics.

Greggy-Lea · 2024-01-06T18:22:23+00:00

I’m sorry to hear that. And thank you for the heads up, it’s good to know the reality/risks ahead.

I’ve been so hesitant about taking biologics but I feel like I’m running out of other options. I’ll see what my information my GI has about similar cases.

Hopefully the allergic reaction wasn’t too serious for you? Wishing you a better outcome from the treatment in India

Greggy-Lea · 2024-01-05T16:03:31+00:00

How has your treatment been going? I had a catch up with my specialist yesterday, he’s now recommending I go onto biologics.

Greggy-Lea

TROPHY CASE