Constipation Complications - Seeking Advice for Long-Term Ileostomy and Fistula Issues

Hi, a lot of you will know I have a temporary loop ileostomy formed in an attempt to allow a recto-vaginal fistula to heal.

I have had this now for almost 6 years. The ileo has over the years malfunctioned, feces has bypassed the loop causing me to have a couple of days in hospital every few months as the pain has been so severe and I end up incontinent through my vagina and fistula.

Since Christmas, if not before, (my last hospital visit for this was Sept 2009) I have had a very lumpy colon, full of feces (which I can feel easily as my parastomal hernia is so large). I am unable to take anything orally as it would just come through the ileo, or rectally as it would just come through my fistula and vagina.....

Over this period of time, I have had a terrible taste in my mouth, thought to be gastric reflux, (several meds have had no effect)~bad nausea up until mid March and the most debilitating fatigue. I think that I am now beyond the sphere of my GP, who bless him, just shakes his head and pats my knee!

I am about to undergo tests to see if my pelvic floor can stand any more surgery - if it seems that I will be okay with it and my fistula is repaired successfully:

1. Has my colon been left too long for it to be anastomized and normal function returned, there is obviously no peristalsis going on there currently?

2. Could this current constipation be causing the symptoms I am experiencing now?
Surely it isn't good to have feces backing up for such a length of time - is it not building up toxins etc as the stuff is normally expelled quite quickly?

I know no one can really give me the answers here, but I am asking for you to be devil's advocate and please come up with some ideas so that I am prepared with questions when I next see my GP and Consultant. Hope that all makes sense - my brain has shrunk considerably recently, I think I am losing the plot?

Rachel xxxx

Rachey, you poor sweet girl, it kills me that you are going through so much.....I am researching this outside our group here and am anxious to bring these points and questions up to my Osty Nurse who runs the Ostomy Support Group I have finally joined...she is AWESOME and she might be of some help, she is so dedicated to helping people like us, more dedicated than most nurses I have personally met...I will let you know asap. Hugs! ~Doe

Thanks Doe, you are a real star .....

Any info or thoughts on my situation would be gratefully received from anyone!

Rach xx

Thanks Ed.... Can't even think of a use for the Velcro boots, so won't be getting those out again.

..... Oh, hold on..... Upside down, gravity.... Enema.... Ooooh might do the trick... I will let you

know! xxxxx

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Rach

No answers for you but good luck and let us know what the doctor says. My thoughts are with you.

Jax

Thank you, Jax. xxxxx

I am not a doctor and am far from an expert in these things, but I know that when Tyler had his surgery and we asked about the "take down" surgery, we were told that our surgeon personally did an anastomosis on a patient who had had his ostomy for 17 (SEVENTEEN)! years. So I don't see how it could be "too late" for you - but you do have certain personal health circumstances that could complicate things, so the only authority to consult on this matter would probably be your physician.

*HUGS*! Please hang in there, we are all pulling for you!

I sure will! Thanks, Tiggy. My memory is a bit rubbish lately, just wondered if anyone out there had any thoughts that I could take with me when I go!

Ended up at the GP as the abdomen was very tender and had started cramping on Tuesday. It was suggested that I put a glycerine suppository down the other bit of stoma to see if I could get it moving from above - wasn't even sure if that was possible, but it has gone internally somewhere? Anyway, so far the earth has not moved! Still very tender, but actually yesterday was the best day I have had since Christmas - long may it last!
xxxxx