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

So MAYBE the new surgeon was right, BUT I still needed him to do the CT scan for me to be able to see the GI doc, that was part of the condition upon which the GI doc would see me AND it was the GI doc who gave me the clue about wheat, sucralose, though I cued in my own way and did this experiment.

GLAD I had the weekend to experiment. ALso I feel a LOT less dizzy and lots less breathless AND no distention so maybe that hormone patch was doing all this to me? Maybe the wheat? Who knows? anyway...pays to experiment. RJ

Hmmmmmmm!! Allblue, I am getting out the thickened stuff that I put into me. Like today I had some tomato bisque soup, egg, cottage cheese, and the gluten free crackers. Then with the sucralose water and coffee I had about two full bags of sort of thick stuff. It seems like I have been passing what I put in. So yours was the biley type stuff just squeeking past the real food you likely started to eat after getting out of the hospital?

Plus your stoma was new. The stoma nurse did say that they are more apt to stricture when new and that is why she put her finger in mine when I was in the hospital getting mine and now mine is 4+ years old. Plus my effluent comes out in a sizable stream. I am beginning to think mine could be dietary. MAYBE the surgeon was right, but luckily I pressed on the CT scan or the GI was not going to see me. If I am lucky this will be celiac or a wheat allergy.

I will stay gluten free the next few days. Thanks for input for comparison. THEN I could cancel all my stuff and pack for vacation. That would be a miracle. It seems like all I have eaten is wheaty stuff maybe I got sensitive. Glad I have some time to work on this and sort this out. AND that I got into the GI's office. I don't know what we all would do without this board as we are the ONES with this stuff. Nobody else would have a clue what we are all trying to sort out here. Thanks. FIngers crossed.

Rosemary

When I was in for my small bowel blockage the surgeon there stuck his pinky in my stoma (it felt weird ) and said that it was very tight. When I say my original surgeon he tried and he could not stick his pinky in had the PA check it. It swelled up a bit and bled a little it was uncomfortable but did not hurt.I would NOT want a 60cm scope in my ileostomy. My original surgeon used long qtip like things and when he tried to open it the stick broke off. Doc said it should open easy but mine did not. the stick did not break off inside (yikes) just at the surface.

you asked..... 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???

my stoma just worked slowly at the stoma level and poop came out in a little stream... DEBBI

Hhhmmmmmmm! thanks for input. So hard to sort out. Tomorrow I am going to fax a question to the GI doc and just say that upon reflection of the ileoscopy he proposed with digital stoma check and then going in 60 cm that I later figured that out to be going in two feet into my small bowel. As my recent food blockages have all been at the stomal level, I wondered what specific thing you would be looking for 2 feet up. (I thought 60 cm = 3 feet but it is only 2 feet, but still too much for me) Then I will see what he says.

I don't want to cut myself off from help as this doc seems to be the only one who is trying to help me unravel this situation. BUT on the other hand I don't want some risky procedure I don't need, especially seeing as my current ileo surgeon is angry about my CT Scan requests that I needed done in order to get in to see the GI.

Anyway, if the GI has no specific answer as to what he would be looking for, then my thought is I will say I would just prefer a digital exam of the stoma by someone with very small finger as it was noted in my ileostomy report that I had "relatively small diameter small intestines." I plan to tell him that I am very interested in the education session he mentioned that he could arrange with the stoma nurse regarding the lavage training. He said normally they train ileostomates in this (that was news to me and sounds valuable to learn for emergency situations should one occur.)

I then plan to tell him that this weekend I went gluten free just for an experiment and did not have the abdominal distention. My side with the stoma still feels heavy and draggy but maybe that is just the way it is. I can ask if he found any peristomal hernia. He didn't say anything about finding one during my general exam Friday.

I will also tell him between gluten free weekend and the fake sugar ostmotic that things moved along well and thanks for the ideas. I actually had quite a bit to eat: hard boiled egg, high fat cottage cheese, gluten free crackers, and a bowel of the tomato bisque soup and the stoma moved out all I took in and did so with a rather thick consistency of stool.

I just don't want to have some unneeded procedure done and get into trouble, yet by no means do I want to shut this GI off as he is brainstorming some good things for me. I will also tell him I ordered the Digestive Advantage probiotic that he suggested for gas build up. He said there was a LOT of gas on my CT scan.

As he had the current surgeons notes which on quick glance detailed all the CT requests I did and how it interrupted his work day yada yada, the GI did seemed to be a bit guarded and at one point said "let us be the doctors" when I asked if a gastric emtpying test was needed. I just said, "Of course, these were just questions I had." So for whatever reason, I am in the middle of some political issue but goal is to feel better, get only assessment that is absolutely needed then get on my trip. I NEED it big time.

So how does my plan sound. As I have no disease (No IBD or anything in my small bowel) I cannot imagine what he would look for 2 feet up from stoma other than maybe this is just what they do? I am learning to ask why then view things as a menu of options.

Rosemary

Post Edited (esoR) : 4/1/2012 11:33:34 AM (GMT-6)

Hey all,

I talked with the GI doc today. It went well. He did not seem shocked that I changed my mind on the ileoscope up 2 feet. I explained that when I made the appt I didn't know how far 60 cm's was. So we made a compromise that he just digitally check into my stoma with his finger which he said is 4 inches.

4 inches would be enough to check for stomal narrowing at the level of the abdominal wall wouldn't it? The stoma is only about a half inch out from me. Am a bit scared of this even, but this needs to be done. I told him I had asked the stoma nurse who has a very tiny pinky finger and had done it 4 years ago when I was in the hospital. Like she COULD have done it the other day and it would have been no big deal, but she works in the current surgeon's office, so, that is as it is. NOt sure what is up with that office nor what I did to offend, but......

I also did a second approach to the GI about the gastric emptying test that he said no to the other day. I just faxed in my symptoms and said why I thought they may have something to do with the slowed gastric emptying. I did say I didn't mean to sound presuming to know what my issue was but that my symptoms all seemed like perhaps gastric emptying. He said that surgery can cause functional alterations. Makes sense as nerves and muscles abound. So am having that non-invasive test. You just eat and egg with nuclear stuff and they geiger counter you every few hours takes a long time but should be worth it. I just told him I was all twirled up wondering what is structural and what is functional, that I don't feel well and I was too scared of that far in small bowel scope.

He seemed fine about it. He said nothing showed higher up on the CT but that he could not guarantee that there wasn't if he did not see farther up which makes sense. So should get some answers. He also retested for Celiac and I should find out in a week. I also ordered the probiotic he suggested and got the RX filled that he mentioned. So he is exploring all the angles of this that can be explored. So, that is good. Am hanging in and feel like I have someone in my corner now so that is good.

From what others have said regarding digital checks of stoma's the worst I have seen on here are some bleeding afterward and maybe some swelling. I asked if I should cut the opening in the wafer larger to allow for his finger and he said that we would take the assembly all off and he would totally check out the stoma, something the current surgeon has never done. So that is a good thing too. Still scared but at least feel like I have some support and will get some sort of answers so that is good.

Rosemary

B'D Digestive Advantage Gas Defense. Not in stock anywhere around, but I did special order it through a nature store from the Schiff Company here in the US. You can google it and order it online too. It may really help, I think this doc has some good ideas. at least he is attacking this dx from all different angles. Rosemary

That is all that happened to me and some minor discomfort..Yes take off the appliance to let him check it.Thenall you have to do is reapply it after he is done....DEBBI

Rosemary, sounds like a lot of progress, glad to hear it. Highly doubt that his finger can get stuck....just think we'd have heard of that before..... will he use some kind of lubricant on his glove?

Sounds like it would be good for you to practice some deep breathing during the test..... you don't want to be clenching all your ab muscles because you're so stressed out about the test itself.

Rosemary, I promise that the digital exam of the stoma is not a big deal. It is, let's compare, about 3% the stress and exertion of a routine gyn vaginal exam. Maybe less, because you will not feel anything at all. and there are no instruments going in there.
I suggest you just look the other way before he starts, and ask him to let you know after he is finished. You won't have remarked anything at all. That is what I did when the young surgeon examined my stoma last July. I had no idea what finger he used, I read in his report later it was his pinkie. This is absolutely not worth the usual risks of knocking you out, and if I remember correctly, it did not last all of 60 seconds.
Really nothing you need to tense up about physically, or in your head is what I'm saying. I also think he is the doctor and he is going to do it because he is the one making a diagnosis, not the nurse.

esoR said...
Debbi,

Was the stoma able to work when it swelled after the check?

How long did it stay swollen?

How much and how long did it bleed?

How long is the doc's finger in the stoma? Just in and out? or does he like feel around in there?

Any chance his finger will get stuck in my stoma? ((((((((SORRY HAD TO ASK!)))))))))) I have this mental picture......auuugh! Rosemary

It worked fine I had the doc check it a few times and it worked fine the swelling went down a few days later bleeding was not much. the finger is in a short time like a minute or so the doc felt around a little and i really do not think his finger can get stuck (lol) You will be fine. i have had a tube put in it at one time and it stayed in my stoma for 2 days with no problem did not even feel it in it or anything...DEBBI