Bioprosthetic fistula plug

[Chrons Ma]

Hi. New to this group as caregiver for a 24yo son, diagnosed CD at 15, fistulating in ano-rectal area for past 5years. 9 procedures for fistulas. Currently has seton. Considering plug to avoid proctectomy. Any experience please ??? Thanks.
(Originally asked question under treatment )

 

[Chrons Ma]

Diagnosed at 15. Ileo-caecal resection at 16. Initially CD large bowel only, but had several bowel obstructions in small bowel (go figure ?) 1st fistulas approx 5 years ago. (Flair hasnt lasted 5 years per se, but fistulas have been a persistent issue over that time) Total colectomy last year, rectal stump left. Has seen 4 gastros now for total review. Sons a complicated case as many are. Thanks for your concern. Hopefully someone has had experience with these plugs as thats the next procedure on our list !

 

[exit4]

This approach has a very low success rate. My experience was bad. Plug created terrible infection and abscess that needed to be drained. I had to be hospitalized on very strong IV antibiotics that killed all my good gut bacteria and got C diff. That was 9 years ego and for the first year C diff came back twice. Check this video on new treatment research at Mayo clinic: http://medprofvideos.mayoclinic.org...lication-for-stem-cells-crohn-s-complications

 

[Chrons Ma]

Thanks exit4. Always good to hear first hand experience, and appreciate not all experiences are good ones. Desperate to avoid proctolectomy so this was suggested. Have yet to meet with specialist to discuss fully. In NZ so dont have access to Mayo clinic unfortunately

 

[Chrons Ma]

P.S Is this a treatment you have trialled yourself exit4? I will certainly ask about the availability in NZ for Crohns but my understanding treatment here is still limited. What treatment have you found to be successful for your fistulating CD ? Everyone seems to have such varying successes

 

[exit4]

I was not able to travel to Mayo for this trial - active flair on prednizone at the time. Humira worked great for 4 years, then my body adapted to it. Nothing else worked to heal/close my fistula. I am living with a seton now for 5 years. I am waiting for start of a new trial with direct injection of donor stem cells at Miami UH -check this site: https://umiamihealth.org/clinical-t...ords=&term=&page=1&pagesize=20&orderby=weight

 

[exit4]

Thanks exit4. Always good to hear first hand experience, and appreciate not all experiences are good ones. Desperate to avoid proctolectomy so this was suggested. Have yet to meet with specialist to discuss fully. In NZ so dont have access to Mayo clinic unfortunately

I also had Ileostomy for 2 years to heal absess/fistula. Fistula closed. I had a reversal and fistula came back -my rectal inflammation came back.

 

[Chrons Ma]

Next suggested step is replacement of current standard seatons with a 'comfort' seaton for sons fistulas (22 Oct 19). Some live permanently with them we are told. Surgeon wants to trial this first before further discussion re plug. Son is now leaning heavily toward rectal stump removal and being done with it. Life is pretty miserable still with an increase in biologics for control now also knocking him round. Will keep forum updated

 

[exit4]

knot‐free Comfort Drain sounds like a winner! I need to talk about it with my doc - current seton with a knot is very uncomfortable. Is it being used in USA?

 

[Chrons Ma]

Cant definitively say sorry, but I would lay money they will be used somewhere in athe USA - lil ol'New Zealand has never been the first world leader in this area of medical technology as far as I am aware !