Hi,

My husband has a complex fistula and has been referred on to a new surgeon, as the first guy doesn't feel he has the experience to play around near a j-poucher's sphincter (fine by us!).  From what the first surgeon said I think the new guy has been involved with trialling this procedure.  We've just been given an appointment for tomorrow afternoon (yes fellow-NHSers, tomorrow afternoon - more on that later) with the new surgeon, so I need to speed up my learning!  Does anyone have experience with this?  And any advice on questions to ask about any and all fistula treatment options?

Thanks,

Cait

ps I nearly forgot - the appointment explanation.  The initial appointment and MRI were done in early summer, the follow-up appointment was last week and just consisted of Surgeon A reading the MRI results and telling us he was referring DH on to Surgeon B - it's a good outcome but the delay was completely unnecessary.  So I called the new guy's secretary on Friday  to ask what his waiting list is like and whether it'd be worth requesting a private consultation to speed things up.  And she rang back this morning to say a slot had come free for 4pm tomorrow  

Original Post

Hi Cait

I'm new to this site and just saw your post.

How did it go for your husband?

I am presently researching procedures for the next stage of dealing with my fistula. My options are keeping my Seton, having the LIFT or the plug. Hence, I was wondering how things went for your hubby.

Regards

M

 

  

Hi M,

When they took him in for an investigation they found that the fistula was less extensive and less complicated than it looked from the scan, so they fixed it there and then, I don't think they ended up using the plug.  But I don't know how they did fix it because he doesn't know.  I hate not speaking to the doctors myself!

But it's now back and more painful than before, so he's due back in surgery in late July - I'll keep you posted if I manage to learn any of the details myself.

C

Hi Cait

Many thanks for your reply.

Good to hear that the fistula wasn't too bad, BUT sorry to hear that it is back. These fistulas really are quite terrible things to suffer with. 

Unfortunately, doctors / surgeons seem to have a knack of not telling you exactly what's going on (hence the reason sites like this are such a great help).

I'm also possibly looking at (yet more) surgery late July. Had quite a few operations / procedures over the last two years, presently have a Seton fitted.  

Regards

Martin

 

Had one for a few years. Have had my pouch for 33 years. To close it up from the inside out my best dr. Used a wire that went in and around the rectum. It bothered me even more. After about 2 months I cut it out my self and it finally healed!! But it did heal from the inside out. Good luck

Hi Cait

There is no easy answer to your question, I'm afraid. And as a non-driver I'm not the best person to answer it either. Some people have great problems with Setons, others won't have any issues at all. Some heal quickly, some don't heal at all. There are two kinds of Seton too, the normal type and a Cutting Seton. My first Seton fell out within a couple of weeks. My second was far too tight and was cutting into my butt cheek quite severely to the point where I could hardly walk and was taking morphine for the pain, I managed to get an emergency appointment with my GP, who loosened it. That one eventually fell out too. I had a third Seton fitted (a double one to make it stronger). This I have had for around nine months, during which time I've had terrible days and pretty good days. As, I said, I'm not a driver but if your husband's procedure goes well then I don't see why he shouldn't be driving a few days later, I'm not sure about for half a day at a time though. He may be very sore for a while (duration unknown). Mine still gives me discomfort and limits what I can do (and then there's the whole hygiene issues). I use a rubber ring (and a thin pillow) to sit on most of the time (your husband may find one useful in the car. The rubber ring goes with me on most car journeys when I am a passenger, and I do know that public transport (buses) can still be very uncomfortable experiences. I am a keen cyclist, used to do hundreds of miles a week, but I haven't sat on a saddle for over two years. At my latest appointment the consultant said I would be able to ride a bike but I'm not so sure (other doctors have agreed with me, as have other sufferers). Obviously, the type of Seton your husband has will determine what he can and can't do, as would it's specific location.       

Martin

 

Ok folks!  I have experience with this!  My son had a biological plug done last September 2016.  It is not a common procedure.  It was done at Weill Cornell in NYC.  He was only the 13th patient at that facility to have this done.  It was done by Interventional Radiology. He had a fistulia in his small intestine, just at or above the stitching line of his pouch.  I did not remember who the company was that makes these plugs but they are custome made for the patient. There is about a 60% success rate.  I did not read all the responses here as I didn't have a chance but I would suggest that who ever you see has some knowledge or experience.  Like Cleveland clinic, Mayo, or NY.  If I can help further please pm me.

 

dianne

Hi all, any advice would be greatly appreciated!!

i was informed last week I was missed diagnosed with UC 9 years ago. I have had a j pouch for over 6 years. Got pouchitous under control after a few years with. Prednisone 2 mg foam enimas. Everything seemed great until 6 weeks ago I had a seton put in a fistula abscess. Last week my specialist informed me it now appears I have Crohn's!! Whilst informing me I need another abscess drained. This requires daily dressing as the hole is 30mm deep and 10 mm diameter. My problem now is trying to keep the packing in for 24 hours as have BM 5-6 times a day.  I'm on antibiotics but concerned I will continue to get infection. As imposible to keep packing in as need to wash bottom end after BM or major bum burn!! Anyone else experienced similar and had success???

thanks for your time!!

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