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Loop Ileostomy-Colon Intact-Colonic Inertia/Pelvic Floor Dysfunction

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Posted 5/12/2017 3:03 AM (GMT 0)
When my ileostomy was done in February, I thought I did my due diligence and knew what was going to happen. Humbled, to say the least! When the surgeon said she was doing to loop and merely bypassing the colon/large intestine, I didn't think much of it, other than what it meant. I was told that it could be reversed if I ever wanted it to be... "although, with the pelvic floor and poor muscle issues; highly unlikely". NOW, I wish I would have asked more questions.

I know colonic inertia and whatnot doesn't seem to be as bad as UC, IBD and certainly Crohn's. BUT, I have to say over 50 years of horrible chronic constipation or diarrhea (no in between) wasn't great, often keeping me from daily activities or plagued with 3-4 solid days of migraines. After not have a bowel movement for 10 days to 2 weeks, it tends to make a lady pretty grouchy!! My point is, I want and need to be taken seriously too.

The last couple weeks, I have had terrible pains, cramping and often double-over stabbing - mostly lower abdomen and left side. I feel terribly full, just like being backed up. I constantly feel like I have to poop! Not long after surgery I did pass mucus and a few large waxy plugs and have been told that may happen from time-to-time. Nothing has come through now, except for gas... yet I SWEAR something is in there.

The two sides of the stoma are uneven, with the active portion needing deep convex (especially when I bend) but the inactive sort of pushes over on top, pushing stool under the wafer. It feels like it's being chafed. I'm having a bit of trouble keeping the skin around the stoma(s) from breaking down. It especially bothers me that the inactive part of the stoma gets a lot of sticky mucus and stool packed into it. I have to clean it out.

SO, my questions are:

1.) Am I just being paranoid and making a mountain out of a mole-hill? I was feeling so much better, but now I feel like I'm regressing and am feeling horrible fatigued and defeat.

2.) How long is normal to leave the "loop"? Is it a big deal to make it permanent? I don't want to offend the surgeon or pretend to tell her how to do her job, but is it ok to ask to have it changed?

3.) Is it typical to leave and bypass the colon? I'm assuming I should continue to have colonoscopies? Will the "irritable bowel", diverticulosis and spasms ever go away?

So, sorry if I rambled! Any suggestions or ideas would be greatly appreciated. I have real issues with major depressive disorder, anxiety and some other things too, so I know I am sensitive but this all seems to have me on my last nerve.

Thanks for your time, Vicki
Posted 5/12/2017 1:56 PM (GMT 0)
V & R:
I replied to you in an earlier thread and do not mean to be intrusive in replying to you in this thread.

To your specific questions:
Q1. No. You are not making a mountain out of a mole hill. In fact, if anything, you are discounting your own serious intestinal issues and needs. There is no contest as to who has it the worst, ulcerative colitis or Chron's or idiopathic constipation. Unresolved constipation is serious in its own right.

Q2. A loop ileostomy is normally a temporary measure. It is used in some instances to allow for healing of a different area of intestinal resection or pouch creation. In the case of pelvic floor dysfunction and constipation, a loop ileostomy is usually done as a "trial" of sorts. If the diversion provides significant benefit in relief of constipation and elimination symptoms pre loop ileostomy, then the plan is usually for an end ileostomy with removal of the large intestine and rectum (end result either a Barbie butt with anal closure or retention of a small rectal cuff).

You are likely feeling "punk" because fecal matter is making its way down the mucus stoma where it is accumulating due to inability evacuate its' accumulation. Remember, your diverted intestine is a living organ. It continues to secrete mucus and serous fluids that need to exit via the anus. With your pelvic floor dysfunction, likely you have accumulated fecal and intestinal material. In addition, a resting intestine is rarely a happy intestine. The passage of fecal material through the digestive tract serves a purpose in lubricating and moistoining the digestive tract. A diverted intestine is prone to diversion colitis - basically inflammation of the resting portion of the digestive tract.

Q3. You should schedule a follow up with your surgeon. He/she needs to be aware of your growing symptomatology. If your surgeon is not aware that you are suffering, he/she will not be calling you to discuss a permanent end ileostomy. You are not questioning their knowledge. You are bringing to their attention something that they will well be aware of (diversion proctitis and difficulty with eliminating fecal material with know pelvic floor dysfunction with a loop oleo).

But I will add, as someone with several serious chronic health issues: never fully trust any physician. I have had more misdiagnoses than accurate diagnoses. And I have been the subject of more medical mistakes than appropriate decisions. There is a lot that physicians do not know.

Trust your own intuition and sense of your body. Your body is your home. You know it better than anyone.
- K -
Posted 5/12/2017 9:11 PM (GMT 0)
Hi Karen!

Please don't apologize for reaching out again, you are NEVER an intrusion. In fact, YOU are the reason that I started questioning everything and knowing in my heart of hearts, that I do have a right to feel good and may very well have to be the proverbial squeaky wheel to get there. You always have such compassion and excellent advice, wish you were a surgeon... I'd seek you out smile

I had an appointment with my surgeon this morning. When we initially discussed the surgery, she told me that because of the pelvic floor problems, I may not get rid of all the pain but at least I would be able to feel empty. I am supposed to give myself some enemas (something I was SO hoping I'd never have to face again) to see if I can pass any mucus or stool that might be lingering. She is going to schedule an x-ray or scan. We talked about (why) diverting the colon and she advised that I indeed may need to treat with fatty acids if there is colitis/proctosis. I have done a lot of reading about what part the vagus nerve plays in the digestive system and brain chemistry. I can understand that leaving the colon in place could have a little benefit as well.

With regard to the "loop" ileostomy, she did say it could be revised but wants it to mature for six months to a year. I'm sure we'll have more conversations about this issue. I was encouraged because she did agree that the situation I described would be obnoxious. Right now I'm having trouble getting the skin around the stoma to play nice. I had been changing the flange every other day and everything was looking great. Because the insurance only approved 10/month, I started trying to get longer wear out of them (I hear some getting 5+ days). I've tried with and without barrier film and/or rings, powder, sprays, and crusting. I spoke to Byram Healthcare, so they'll get authorization for more. I do understand that I need to get the skin well healed before ever thinking about messing around with the stoma(s).

Thanks again for your kindness... you inspire me! I don't know how to chat within this forum but I sincerely welcome any an all advice you care to offer. PLUS, if there is every any way I can reach out to you, whether offering a shoulder or listening ear - I'm here and willing!

Vicki
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