Surgery for Fistulizing Crohns Disease with ilium removal

[RG24]

I am a 34 year old male, and while I have very little symptoms... I have pretty serious fistulizing crohns disease. I have 2 fistulas on the ileum (one conects ileum, the other conects to the bladder). I also have 4 perianal (rectum) fistulas.

My ileum is also moderately inflamed.

Anyways, the surgeon (Mayo Clinic) would like to take the iliem out, provide me with a temperary stoma for about 3 months (allow time for the fistulas to heal) and then re-connect. I believe the procedure will be laproscopic

Like I said I have very little pain associated with the disease. I feel good. But, they are adiment that I need surgery.

I have questions. Has anyone gone through surgery like this? I'm sure there will be some pain - but where does the pain come from? The intestines healing, or the ab muscles that get cut or the incision sight? Where does the pain come from?
How long does the pain last?

How about the perianal fistulas? Will that be painful? They are not sure - but they are thinking they will place setons.

What am I in for? Who can help?

THANK YOU!
-RYAN

 

[Grumbletum]

Hi Ryan and a big warm welcome to the forum I'm amazed you don't have a lot of pain and stuff with all that fistula and abscess activity going on. I had a an abscess and a fistula connecting my bladder to my bowel and it caused me lots of pain, repeated bladder infections etc. Eventually healed after several months on Pred, Azathioprine, antibiotics and finally Remicade.
Have you been on meds up til now? I guess because the fistulizing is quite widespread they want to remove the area of bowel involved.
I didn't need surgery in the end, but there are people in the FFABS forum ( where you also posted ) and in the Surgery subforum who have so have a browse in those.

 

[Angrybird]

Hi Ryan, just wanted to say welcome to the forum :bigwave: Op wise I think most of the pain comes from the healing muscle, for me the incisions stung for a while but it was easily tolerable and didnt last that long. Six weeks after the op I was feeling fine and back to work. I did notice though that I still needed to be careful with heavy lifting for as it does take a whie for all the twinges to completely go. I didn't have a stoma though so I am not sure how this may add to things, as mentioned check out surgery and also the stoma sub forums for further info.

Keep us updated on how you get on, I do hope that these fistula's can finally get sorted for you.

xxx

 

[Patme]

I have only one fistula, with a seton suture. The seton does not heal, but only prevents formation of another abcess. I have had a seton in place two yrs now and their is still some drainage from it (external) As the surgeon advised me. The temporary ileostomy and fistula repair has a poor % successful outcome. Works in the short term while temp ileostomy is in place but soon recurs after everything is hooked up again. Which ultimately means one goes through unnecessary surgery. Just suggesting you check the % successful outcomes. All the best for the next step.

 

[RG24]

Wow... That's not real encouraging. Thank you all for the input. Please keep giving me information... I need it!

 

[RG24]

Angry Bird - thank you. Was it six weeks of hell before you were able to return to work? Could you be more specific, and break down you progress? Any problems since?

 

[Angrybird]

Hi, I was really sore for about a week or two but was able to still move around quite well. Then it just got easier day by day to do stuff and by week five I felt really well rested and only had a few grumbles. What surprised me was how tired I felt, it really takes a lot out of you and the first time I went food shopping I then slept for the next two days. Other than that it really was a lot easier than I thought it was going to be. I have had no problems since relating to the op itself but have had a major flare up at the end of last year so back on the meds.