UOAA Discussion Board

Hello

Can anyone offer me some advise please

I had a Loop Ileostomy 6 months ago too and I was hoping that I could get some advise?

I have suffered for many years with bowel problems and have a complex history and the reason for my ileostomy was a combination of Slow Transit, Constipation and Animus.
I was taking a lot of laxativesand Resolor.
I had a full Pelvic Floor investigation last year and the results of the Transit Study showed that ALL of the markers were impacted in the Caecum area.
I cannot retain Enema's or irrigation due to Low Rectal Tone and the Animus, so it was decided that the best course of action was a Loop Ileostomy, which was carried out in December 2019.

Since my Ileostomy, I have been experiencing the following issues:
Significant "Constipation" pain in the stomach.
Near inability to evacuate the contents of the colon due to the Rectum/ Animus issues.
Significant amount of faeces spilling over into the Distal Loop.
Significant amount of Mucus / Lubricant / blood being produced in the colon which I struggle to evacuate.
Mucus / Lubricant / Faeces flowing backwards and discharging from the Distal Loop. Possibly due to the slow transit. ( The discharge from the Proximal loop is fine).
I have taken photographs showing the contents and the volume of the discharge for the benefit of my Consultant and he has now agreed, subject to the Covid 19 restrictions, to "End Off" the Loop Ileostomy. He is insistent on leaving my Colon and Rectum intact?
I am concerned that even after the Ending Off, that I will still produce Mucus, continue to experience the excruciating pain on a daily basis and still struggle to evacuate?

Another of my concerns is that my last Colonoscopy was back in 2014 (6 years) which proved to be a very difficult procedure because I apparently have a "Very Loopy Colon". I have suggested to my G.P. and Consultant that it may be prudent to have a new Colonoscopy, but my G.P. say's to "Leave it to Specialists"
I am considering going Private for the Colonoscopy for peace of mind. Would I need a referral from my G.P. or Consultant? Also, given that I have a Loop Ileostomy I am concerned about how I would prepare the bowel for the investigation, knowing the amount of Mucus / Faeces / Blood that is in the Colon?

Please can anyone give me some help and advise?

Margaret T (UK)

Hi Margaret,

I dealt with anismus and dysfunctional anorectal muscles all my life -- inherited from my father. Very long story short, In 2002, I finally had surgery for a colostomy because I felt an ileostomy would be more difficult for me to manage. Due to slow transit time still in my gut and a host of other issues like a very painful abscess in my sigmoid and a parastomal hernia, in 2018, I had major surgery and now have a permanent ileostomy. Because of diversion colitis (you can search for it on the bulletin board -- with an ostomy, the colorectal area doesn't receive critical fatty acids found in stool that's diverted to the pouch so it can become irritated and inflamed -- with mucous and blood), I also had my rectum and anus removed because of this -- a big relief! Many others up here do pretty well by flushing out their anal cavities in the shower and removing the mucous -- please do a search. The surgery is major and I developed a wound which took months to heal but ultimately, I'm happier.

I should know more about loop ileostomies and can explore that later or someone wiser will pipe up. I definitely no longer am constipated. I have quite a bit of output (even when I limit eating -- and am getting a test on Monday since there seems to be quite a bit of bile in my stool). It could definitely be MY condition but I'm still very distended which is a disappointment. I could have SIBO -- small intestine bowel overgrowth and we'll be testing that, too, and I'm investigating a diet plan that reduces gas. Everyone is different. The almost constant flow of an ileostomy takes time to get used to but thanks to people up here, I FINALLY found a way to solve major leakage.

I don't know the credentials of your surgeon but I experience none of what you are dealing with. It could be that a total ileostomy would be better.

As far as getting a colonoscopy, my excellent G.I. doctor is in charge of that, not my internist. Perhaps you can find one or your surgeon can recommend? Some surgeons will perform colonoscopies but you may want to search for a new one if you're dissatisfied.

I hope this helps.