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Probs with colostomy, considering ileostomy

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Posted 11/16/2013 1:41 AM (GMT 0)

Please, any suggestions or advice welcome!! Had colostomy due to nerve damage/severe constipation in May 2013, by Aug/Sept, still had major problems with constipation, so my Dr put me on Linzees to liquefy output. These past 6 months, I've tried to be careful with food, can't eat high fiber, raw fruits or veggies, no high fat either.  Seems everything but a very low residue/low fat diet affects me! Yes, I've tried chocolate ice cream...now I throw it up.

The past two weeks, I can't eat much at night. It sits in my stomach and I feel nauseous. I've thrown up before bedtime a few nights in the past 2 weeks. My output had slowed, even with the strong med Linzees. The surgeon is doing a CAT scan next week to see if there's a kink in my bowel, but we talked at length. Nothing is giving me relief and the surgeon is suggesting I consider an ileostomy.  Just get rid of the large intestine because its done nothing but give me problems!

I'm upset & depressed, to say the least! The car accident 3 years ago has left me with nerve damage & severe constipation and I just don't know what to do next. I thought the colostomy would take care of this problem and it hasn't. I'm considering trying a gluten-free diet to see if that will help. I absolutely hate this...am I ever going to feel normal again?? I could deal with a colostomy, ..but not one that doesn't work!

Does anyone know of specific tests that may pinpoint the nerve damage? Are there any type of Specialists, other than colorectal that can help me? What should I expect if I do have the ileostomy?

Sorry for my rant, but I'm beside myself. I'm the strong one...a good cry and I get up and get moving. I'm so sick half the time, moving around is not even an option!

Posted 11/16/2013 9:26 AM (GMT 0)
Hi Lincee,

I feel sorry for you. But if you ask me, colostomy is definitely easier to manage compare to ileostomy. Ileostomy have a higher tendency to cause skin problems due to the watery output. If you are living in the US or UK, you should be able to have access to a lot of products to prevent skin sores. I have huge problem absorbing liquid intake too with my ileostomy. But in your case I cant comment much as you are facing problems with digestion. Maybe you should get a second opinion.

I would like to know if you can ever get your stoma reversed? I reversed my colostomy and ended up with an ileostomy because of infection. But I still have a chance to get it reverse.

Hope this help.
Posted 11/16/2013 2:25 PM (GMT 0)
Have you had any testing to confirm there isn't a motility problem in the small intestine? I'm not an expert but I think a Sitz marker test would be the one. If food is "sitting in your stomach" you might need to look into gastroparesis as well, no stoma is going to resolve that.
Posted 11/17/2013 2:50 AM (GMT 0)
Thanks for replying Accident Survivor & Pluot. I'm sorry I sounded a little deranged last night, was just a bit panic-stricken that colostomy is not working out. I finally did pass a lot of stuff during the night. So perhaps I've had a slight blockage causing problems the past few weeks? Being on strong meds, that's not supposed to happen at all.

I had a 2nd opinion with a top Dr at NY Univ. Hospital before agreeing to the colostomy. He ordered the Sitz marker test. After 4 days, the markers were still spread throughout the large intestine, with most in the descending, sigmoid section. By day 7, I had close to the right percentage cleared...so it was a toss-up whether the Dr called it slow or normal motility...he chose normal. Funny that I had a full bowel for both sets of x-rays, I didn't know....because I've had no feeling in my rectum for a couple years!

I may go back to the Gastro, I started with them when I had the initial bowel problems after the accident. Also going to try a gluten-free diet, see if that helps. I guess, like many people on this forum, my recovery is not going to be without problems. Thanks again for your suggestions and I apologize for sounding like I've lost it. Just trying to take this latest development one day at a time.
Posted 11/20/2013 9:18 PM (GMT 0)
Pluot, my GP does think I may have gastroparesis. He's ordered a upper GI series with small bowel follow through. I'm picking up a new med that's supposed to help too. Hopefully that will kickstart the rest of my digestive tract!
Posted 11/30/2013 5:45 AM (GMT 0)
Ten days later & still having problems eating meals, especially at night. Getting used to eating lighter so I don't throw up. I had an upper GI series with small bowel follow thru scheduled for today....and woke with a sore throat and fever! The nurses thanked me for calling & rescheduling test, so I don't spread the virus or whatever to them!

I had to stop the Reglan (sp?) the stomach meds, after a few days. While it helped food move along, my vision was very blurry and I had major problems with constipation again.

Hope at least sharing my experience will help anyone that may run into the same problems, 5 months after temp. colostomy -slow digestion, vomiting. Glad I'm getting it all checked out and will update once the Doctors figure out what's wrong.
Posted 1/20/2014 8:02 PM (GMT 0)
Just wanted to update, a stomach or duodenal ulcer was found during my GI series tests in Mid Dec. (thus, pain was not from colostomy) I was sent back to a Gastro Dr & he prescribed a generic of Prilosec and its working pretty well.

However, that Gastro Dr did NOT like the look of my stoma hernia....it's quite swollen & often have pain now (first mentioned it in Nov 2013) and so, I spent New Year's Eve back in the ER to get a more informed opinion, should they do surgery or leave it alone? ER's really don't want to do surgery unless an absolute emergency, so I was sent home to follow up with my colorectal surgeon.

I saw the Ostomy Nurse at the colorectal Dr's office, she wants me to try a peristomal hernia belt first. Yeah, ok....should have asked if she'd like to help me put socks on everyday....or would she like to clean my home since I am not able to bend without a LOT of pain or go for my usual walk without a LOT of pain!! Whatever, bring it, what's one more pain??

Wish I was told that hernias are a common complication after having a colostomy & that a hernia/support belt might prevent hernias. I wore a belt occasionally, didn't know it was a good idea to use daily!

Ok, so problem with nausea & pain at night solved. Next up...the hernia! My insurance company demands we use one particular Ostomy supplier & they have belts on back order....few more weeks of pain before I find if the belt helps with the pain. It hurts just sitting here, typing this. Hope I can hold out and not insist on surgery! Nurse claims surg is not that successful, hernias usually come back.

Post Edited (LinCee) : 1/20/2014 1:05:16 PM (GMT-7)

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