Ileoscopy, finger dilation check or CT Enterography for assessment of stomal narrowing?

JUst wondering. Has anyone had any issues with possible stomal narrowing (stenosis)?

And if so what procedure did your doc do? Ileoscopy? Endoscope into stoma?

CT Enterography where you drink a bunch of water, really puff up your small intestine then they do a CT scan?

Or did your doc or stoma nurse just grease up a gloved little finger and put it in your stoma to check for narrowings?

Rosemary

I did, my stoma was really really tight.  She manually did it twice and when I went back into the hospital on whatever admission it was she removd the mesh holding it and then loosened something - I dunno exactly but it worked!

Yes, it was new - revised, but new LOL! I was actually doing it at home for awhile before we realized what the problem was - it definitely helped to get things moving but I am glad I don't have to stick my finger in there anymore and it works on it's own :) Do you have gloves? Give it a whirl - can't hurt anything as long as you don't have long nails and you go s....l....o.....w. Surprised they didn't just DO IT when you were there, it's not like it takes a long time LOL!

My surgeon is in chicago, il. When he did the permanant ileo he also fixed a hernia he tightened the stoma area which might be the cause of the stricture. Not sure but i really like my surgeon. We will see when he fixes it next wednesday. You could ask the doc to do a digital check....DEBBI

Rosemary......how is it going? Have you seen the GI? Anything definitive?

Trixiemom...sorry to hear that your stoma has to be redone. But better sooner than later, obstructions are just not pleasant. How will the process go for you, your doing it next Wednesday? I'm in Chicago too, if you ever need anything, feel free to ask

Debbi, Hope all goes well for you.

Saw the GI doc today. He had multiple ideas for me to try. He thought my issue was mainly motility. I did ask why a motility issue would set in now when I had not had one in my life time even after getting the needed ileo due to the scarring of colon/small bowel during the pelvic organ prolapse surgery at the other hospital. He said surgeries in general can affect motility. That certainly sounded reasonable as there are nerves and muscles all over the abdominal area. So for that he prescribed tiny amounts of Miralax (which ironically I cannot take, but.......sorbitol and sucraslose......all those fake sugars I discovered after the fact sure speed things along, for me any way.

For gas and the bad bloat I have by night (even when all is passing OK) he suggested finding Digestive Advantage probiotic. I found a nature food store that will order this for me on Monday.

He looked at the CT scan and said according to that there are no narrowings. I said I had not been shown the scan by my current ileo surgeon this time as I was shown two years ago. But he said it showed no narrowings. GI did say that it showed a LOT of gas which does fit with my bloat issue.

I asked if they ever check a stoma digitally and said that I had mentioned this to my stoma nurse when I saw here just prior to the current ileo surgeon. All she said was that the current surgeon might do it if the CT did not tell him the info he needed. The current surgeon did not do it as much of our time was spent by him telling me how my requests for the CT scan had interrupted his work with another patient. The story sort of spun about regarding communication. BUT oh, well, it was my 3 food blockages in 2 weeks and not his. So I said I was sorry that he felt that way, but told him that 3 food blockages in 2 weeks on very bland foods was scary. My friend that went with me echoed that sentiment.

The GI doc asked if the stoma nurse had ever showed me how to irrigate my ileostomy stoma if I ever had a food blockages I could not pass. I said no she had just said that irrigations were for colostomies only. He said no, there are ileo irrigations that patients can be trained to do if they ever have a food blockage that cannot be passed with hot liquids. So he said he will arrange a training session for me with the stoma nurse. This WOULD be valuable info and to have the equipment to do it with if the need ever arose.

Then he said that he could do an ileoscopy and put a tiny scope into the stoma and assess it after he did a finger check in my stoma. I asked if I would be put to sleep for this and he said "Oh, yes, of course." (that was good to hear.) I then asked how far into my small intestine the scope would go and he said 60 cm (THAT IS LIKE 30 INCHES.....WHOA) plus, they have to blow in some air into the small bowel so the scope will go in safely. I was thinking YIKES! We talked about risk of puncture and he said it is always a risk then he gave me the stats on his own successes and a puncture risk would be like 1 out of 8,000. So I am sure he would do fine. BUT, since I have no disease and all that may be detected if anything would be possible narrowing from an old adhesion around the outside of my small intestine. As everything gets to the stoma and the only issue during these blockages seems to be getting food out of the stoma itself, I am wondering whether to do this and take the risk. The only way an adhesion could be cut would be to go in abdominally which I would not do unless I had an actual adhesion small bowel obstruction or a volvulus which none of these current issues are. I had told him that at night I do have to lie on my right side if I have any dense effluent in me to make it come out, so I think this is his reasoning to go in so far.

BUT I am soooooo gassy and distended tonight that the thought of air being pumped into my small intestine which then may not come out, sends me into orbit, I could be the good year blimp. I did sign up for this for Thurs. April 5, but on Monday I may call and verify his reasoning for going in so far. I assumed it would just be into the stoma and up a bit. I know someone on here a LONG time ago had similar thing done but it was to drain a small bowel that simply was not outputting at ALL and the person was in super bad trouble all the time. So tonight I read the warnings on my hormone patch box and it did say abdominal distention and bloating as a possible side effect. I have been on these for years and may be getting sensitive. So I took it off and if this improves I will then get a half dose form of the patch from my PCP and try to wean off. It's time anyway.

So I am just going to sit on this idea over the weekend as I am exhausted from this week. Anything obvious would have showed up in the correctly done CT scan that I finally got. All I really want is the stoma nurse to do a digital check with HER pinky finger as hers is very tiny. On my op report it was noted that I had very small diameter small intestines to begin with. So am thinking of erring on the conservative, but we shall sit on it over the weekend.

So all in all a productive visit with the GI. I did ask about the gastric emtpying test because I do get full fast and stay full a long time. I do not however so far have any regurge issues so I think that is why he may not have gone for the idea of gastric emptying test. He did say, let me be the doc. I said definitely so, these were just questions I had in my mind.

So there you have it. What a tiring week. I did sneak a peek at my current ileo surgeon's office visit note of the other day and it was VERY lengthy and details how my asking for CT scan took him away from other patients and so on. All I can say is oh, well. I am a patient and had good cause for concern. I think if I was a doc I would tend to write something like: patient reported 3 food blockages in 2 weeks on bland food, very concerned, called multiple times for CT scan, gave her one and all was clear per scan. I really don't think I would go on about how the request bothered my schedule. Funny he had time to write a very lengthy note and the ordering of the scan and some call backs was such a chore, but who can figure. Hopefully both his and my April will go better with me successfully on my trip and him on to other things. Just interesting.

Brought cat home from vets today and is great to have her back. They trained me how to give her her meds and I think I can do it now. I have to not let the liquid get on her tongue but sort of just squirt it toward the vary back of her tongue. NOT as easy as it looks when they do it.

Thanks for your support and give me your take on having someone go 3 feet into my small bowel and puffing it up with air. I am thinking maybe no?

But very pleased at GI's other ideas and with his understanding for my concerns. Rosemary

Post Edited (esoR) : 3/30/2012 7:33:28 PM (GMT-6)

I am also going off a valium I take for sleep. When the hot flashes start from hormone patch residual that is likely in my system, things won't be good. BUT worth a try before having a scope put in through 60 cm of my small intestine. YIKES! Rosemary

So ALLBLUE,

NOPE nobody has stuck their finger in there. The GI doc was really surprised.

If your stoma was tight at the abdominal wall AND it could be told by the doc sticking her surgi-lubed finger in, THEN....................ALL I NEED IS THE STOMA NURSE TO SURGILUBE UP HER GLOVED FINGER AND SLOWLY ADVANCE IT IN, RIGHT?? If no tightness at the abdominal wall, then I am OK right?

I figure why go in 3 feet if you just need a little finger check?

Also this GI with the scope Idea said after I was asleep he would first put his finger in my stoma and do that sort of check THEN the scope thing in 60 cm.

His fingers are bigger around than my stoma! Do you think I should get my stoma nurse to just do this with her pinky? Her pinky is like mine and would be able to fit in the stoma. I think the GI is on the right track but that long scope idea really has me worried.

What finger did your doc use and how big was it relative to your stoma? I DO want this checked but I don't need a stomal injury or any other. If any thing happened then the surgeon who is ANGRY at me for requesting the CT scan would then be doing emergency surgery on me, NOT A HAPPY THING!

Rosemary

B'D,

Thanks. I have a VERY HEAVY feeling around my stoma. If feels like lead. The only position I am comfortable in is lying on that side. Not know why, one would think it would be the opposite side I would feel best on but whatever.

I asked my current surgeon if I had a peristomal hernia and he checked me and said no. I did notice yesterday the GI doc examined my abdomen more thoroughly and listened to bowel sounds and all. He then felt my stomach and asked me to raise my head while he felt. I think he was checking for hernia. He didn't say anything about finding one.

SO YOUR TIGHT FEELING AROUND THE STOMA ENDED UP BEING FROM A SLIGTH TIGHTNESS of the stoma! Monday I am going to fax the GI doc a pic of me at 99 lbs, an excerpt from my ileostomy op report saying that only one and a half fingerbreadths were opened in my abdominal wall due to being so thin. THIS WHOLE THING COULD JUST BE CAUSED BY MY WEIGHT GAIN!

I asked my surgeon about this countless times and he said weight gain no issue. BUT I have read since that even weight gain as little as 10 lbs can affect a stoma's function. THEN some say NO it does not affect function. So, who's to say? BUT I agree that getting a digital stomal check IS what I need and is VERY easy as I remember it when my stoma nurse did it when the ileo was new. Glad you felt nothing. I remember feeling nothing too. The GI doc WAS looking at it yestearday but then said, "oh, I can check your stoma when we do the ileoscopy". I should have asked for the finger check then and there..but there was poop coming out of it at the time and we were scheduling the ileoscopy. That was when I did not know how far 60 centimeters was that he plans to scope next Thurs.

I think the current surgeon the day before going on and on about how my asking for the CT interrupted his work day intimidated me so much I have forgotten to ask for what I need from others. I feel like this GI doc is my only hope in getting this all dx'd. He seems thorough and willing.

Thanks for telling me of your digital exam. (I would not look either.) I remember looking when the stoma nurse did it when it was new and i was still in the hospital from having it made. I remember thinking, what on earth is she doing, but it was no pain. Maybe that is because it was open and no tightness at all. Rosemary

B'D,

My GI doc put in the Rx for Miralax that I can't take. I remember taking lactulose and that is REALLY gassy. Drinks with fake sweetners like sorbitol really thin stool down too.

Thanks for suggestion though.

I am getting really creeped out about some scope and air being blasted into my small intestine and going 3 feet up. Monday I think I will fax the GI doc and ask him why he hast to go that far up. There may be a reason but all I really want is the digital check by the stoma nurse with the little tiny finger. LIke you said, so quick so simple. Auuugh! RJ

Rosemary,
She did it with her forefinger and she is a tall slender soldier LOL! She went up past the second knuckle and she has long fingers. I felt it only b/c I was having an obstruction right at the intersection of the abdominal wall/small intestine and the mesh was infected and it wasn't pain so much as EXTREME PRESSURE when she did it. I dunno how they decided how tight is too tight but I could definitely tell mine was SUPER TIGHT and I could feel the muscle contracting when peristalsis was happening - it was TOTALLY CREEPY!

Well wouldn't this be an opportunity to put your foot down and say you only want a digital and he should do the digital without putting you out?
I mean that endoscope exam is actually not a big deal, I had my colon examined that way at least 6 times, but they do have to put you out for it and there is a bit of air in there. If he just wants to be thorough, since you have been through an ordeal the last weeks, then ok, let him go the whole nine yards (figuratively), I mean if he still has a concrete reason to do so after the digital exam. Otherwise tell him you want the digital before they put you out. That's your right. I would only do it his way if he has a good reason.
But whew, are we getting to the bottom of this or what?
It is 11:20 pm and I have logged in 10 poos today. The 11th may still happen, if not now then definiteyl will wake me up in the night. I just wrote to my cousin about how it was so much easier with the bag then it is to get through this transtion time. I don't even want to leave the hosue.

DID AN EXPERIMENT TODAY AS I REALLY DO NOT WANT THAT 60 CM SCOPE UP MY ILEUM

So far so good, this is amazing. In addition to those 3 food blockages I had at the stoma level, I have been having horrific abdominal distention by night time looking 6 months pregnant. I even took pics to all the docs I have seen. NONE of them denied distention.

ONLY when the GI doc sent me for the repeat Celiac test did I think of doing an experiment, then he wrote and RX for Miralax which I cannot take, but I know that Sorbitol and Sucralose also have osmotic properties, then to rule out the structural stuff we booked the finger check of the stoma and that ileoscopy that goes up 60 cm that I am now rethinking.

SO TONIGHT I HAVE ABSOLUTELY NO ABDOMINAL DISTENTION.....Today I avoided all wheat, bought a LOT of gluten free crackers and bread. THEN I drank flavored water with sucralose in it. SO tonight abdomen just fine, poop passed all day into my bag with no issues, and except for the heavy feeling around the stoma I feel fine. I cannot believe how flat my abdomen is.

I will be VERY curious if my celiac re-test comes back positive. One can still get the bad effects from wheat even if not gluten sensitive as in celiac disease. SO barring anything horrific like adhesion recurrence which would be obvious like Summer's recent issue, MAYBE mine are now related to food.

The days I had the food blockages I had a regular wheat white bread with the tuna as I did with the chicken spread and with the high fat cottage cheese. Today I had some high fat cottage cheese and gluten free crackers and the Sucralose flavored water.

Am definitely cancelling the 60 cm ileoscope and maybe???? not even need the stoma digital check??????? Those who have had stomal tightness at abdominal level, were your food blockages intermittent as mine are OR could you just not get poop out of your stoma at any time???

Rosemary