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I Do Not Know How Much More I Can Take of This!!!!!! Rosemary

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Posted 8/16/2012 8:09 PM (GMT 0)
Rose,

Your friend's idea that maybe he was using the silver nitrate on the scar tissue forming on the cracks is a good one- I didn't even think of that! Anyway, uc_free is right, Dr. S. is very very good at what he does; he doesn't always say exactly why he's doing something, I have learned to just ask if I have any questions in the moment. If he didn't know what was going on, he would tell you.

Also, if you can't see the area because it's covered in poop, that's a good thing- your stoma is doing what it's supposed to do... poop! :)

Keep us updated....
Posted 8/16/2012 8:41 PM (GMT 0)
Ju,

Yeah, I got such a good impression and he did look my stoma over in good detail. THEN he did seem very shocked that I had poo coming out of the cracks on my stoma from the dilation at the other hospital though those healed, that he MAY have been trying to heal a residual crack that he did not mention. So my friend had an idea there. We shall see what this looks like when I change in the a.m.

So you had all your surgery by him and you did OK? You had a lot done. So too bad we missed each other in the office. That would have been cool to meet though we may have even been sitting next to each other and not even known. RJ
Posted 8/16/2012 9:08 PM (GMT 0)
He did not do my original ileo; that was a three-inch long weenie-type thing. Ugly if I do say so myself. He was the one who cleared up the pyoderma and redid my stoma to be as perfect as it can possibly look. I am so pleased with the way he constructed my stoma. He also really cared what I thought of it, which showed that he is humble regarding his work. I still battle some rashes due to my allergies, but I cannot complain at all, and those have nothing at all to do with him. I have not had to go back to him at all since one follow-up visit back in mid-June, but if anything were to go wrong in the future, I would go back to Dr. S. without a doubt.
Posted 8/17/2012 2:20 AM (GMT 0)
I did have all of my surgeries done by Dr. S., and really trust his judgement/experience. I did very well under his care, even with the abscess/leak issues I had in February and March. Yesterday's appointment was actually my last one until my first annual checkup next year.

Maybe we rode the elevator together yesterday or something. :) I was there early afternoon; didn't seem too busy in the office, only a few patients were there.

I hope tomorrow's appliance change reveals good things. :)
Posted 8/17/2012 2:31 AM (GMT 0)
UC, did he say that you had a lot of adhesions or is that not your issue?

I think medical science in and of itself has not come up with a cure for adhesions no matter how good the doc is. MAYBE if I had gone to him in the very beginning after the wreckage from the original pelvic organ prolapse surgery here in Mass, then he MAY have opened my abdominal wall enough so I may never have gotten into all this stenosis stuff as I fell into this year. I may just have been OK but I went with the doc in Mass who said I can do this. It is ironic that I had contacted Dr. S. at that time, explained the issue, and said can you do adhesion take down and permanent ileostomy would that work. He understood the situation and said, wow, I could but NO PROMISES. The doc in Mass sounded more confident so I went with him. He did give me 4 good years, but the fascial opening through which the stoma was made was gradually narrowing and I did not realize it. glad I didn't or I would not have done all that travel.

So who knows how things could have been different? RJ

PS of course going WAY back in time, I am sure they would have read a defecogram scan correctly at MT. Sinai and if I had gone with my original issue, they would have noted that I did not have a sigmoidocele in the first place.......hmmmm interesting. Geographical location so much to do with the good and the bad surgeries we get into.

Post Edited (esoR) : 8/16/2012 8:34:30 PM (GMT-6)

Posted 8/17/2012 2:39 AM (GMT 0)
Ju, Just curious. Do you have shoulder length blond hair and were you wearing a multi-colored top? Are you maybe late 30's or early 40's or so?

I was the one in the blue sleeveless blouse, dark shorts, and blond hair and glasses. Too thin. I was sitting over by the window. I was there about 2:30. If it was you. YOU came out and I was called in right after you at 3:00. Just curious.

There was an older lady in a wheel chair and a young nurse with her at that time too. Just curious. We could have met and not known it. Rosemary
Posted 8/17/2012 8:34 PM (GMT 0)
I actually have brown hair, was wearing a black and white striped cardigan, and am 21- so quite the opposite of the person who came out before you. :) I was there at 1:45, though, only waited 5-10 minutes before going in, and was out pretty quickly. Sounds like we literally just missed each other! I probably left not 15 minutes before you got there.

I hope you are feeling well today. :)
Posted 8/17/2012 9:22 PM (GMT 0)
Ju

Ah yes so that was not you. Too bad we just missed.

The silver nitrate dr. S put on the area of my stoma that flattened out onto my skin did no harm. When I changed today I did not disturb that part but the silver nitrate just turned the skin out beyond the flattened part of the stoma a bit grey. But it did no harm to any part of my stoma. So it is like we thought. No granuloma like I knew but also no harm done.

My local stoma nurse said that he was likely trying to encourage the skin to grow over that flattened part of the stoma to make pouching easier.

Turns out that after mayo got done looking at the whole scenario I have been thru and that "flag" on my insurance they decided I can go as the head colorectal doc looked at everything, pics, my symptoms, records, op reports, the fact that rhe active part of my stoma is only a bit less in size than a dime, the opening is tilted and constricted in the picture, and all the positional stff I have to go thru that this revision needs a revision.

So I should find out tomorrow when my appt is in the next 2 weeks. SO glad they decided to see me. I really want a stoma that just works, does its job and will allow me to eat and move on with life. I was up a lot last night with pain of gas that woukld just not move out of my stoma. I can feel it bubble doiwn into the stoma then just sit there. I have to drink hot grape juice, lie on the right side, arch my back and then a LITTLE gas will come out. The rest is still in me. Having had a stoma for 4 years I know what is normal and what is not. This one sure has the signs of stricture at some level or maybe it is it's bizarre shape and narrowness that impedes output.

But at the same time I am going to really ask a lot of questions about how extensive the surgery will be and what about adhesion preventioin. If I was not an adhesion former I woukd just dive into it. But being as I am I have to be really careful. This doc gets great patient reviews so I am sure I will have enough info for an informed decision. Between now and then I will keep a food log activity log and pain log so I will have some concrete day to day stuff for our meeting. So glad they decided to see me. I think the doc gets the quandry I am in.
Posted 8/17/2012 9:34 PM (GMT 0)
Hi Rosemary,

I have had no adhesions yet, and I think I am in low risk for that as my original surgery was not open. Even for my revision . . . Dr. S. was able to push the intestine over using the old site. No new incision was needed, so I lucked out that way. I had what was thought to be a hernia, as well as a stoma that really needed a revision. Due to the pyoderma they couldn't keep it where it was so they moved locations. So far so good. I can't complain at all!
Posted 8/17/2012 9:52 PM (GMT 0)
You are lucky UC to have no adhesion issues. Glad all worked out.

RJ
Posted 8/17/2012 10:10 PM (GMT 0)
Hubby had a large full open incision from his surgery 20 months ago now... is that something (adhesions) that probably will not be a problem since it has not manifested itself yet or can they occur anytime? (fingers crossed)
Posted 8/17/2012 10:36 PM (GMT 0)
They can occur any time but I had severe manisfestation after the pelvic prolapse surgery 7 months after that surgery. Most people of only one surgery do not have adhesions that give symptoms. RJ
Posted 8/17/2012 11:25 PM (GMT 0)
I've wondered if I will have issues with adhesions- my first three surgeries were all, of necessity, open incision in the same spot. I try not to think or worry about it, though, as there is not much I can do about it now.

I'm glad the doctor at Mayo agreed to see you Rosemary! That should yield good things.
Posted 8/17/2012 11:44 PM (GMT 0)
Thanks here's hoping. That pain is zinging out of control now. Glad - have the appt. Hoping I stay OK another month but will just stay mainly on liquids and vary my position a lot!

RJ
Posted 8/21/2012 3:33 AM (GMT 0)
Well, I have this very weird thing with my new stoma. I have to go to bed totally empty otherwise nothing comes out unless I am on my right side and at that if anything very thick, I have to get up and drink grape juice to get it out. SO so far I have been able to eat some egg and crackers and yogurts early in the day, then a ton of liquid, then grape juice and be cleared out by night.

Then even if I just have the grape juice in me, I still have to lie on that right side or even that does not come out of me. But with just grape juice "stuck" it is not that big a deal. BUT this morning I just looked at my stoma through the bag with a flashlight when I woke up. When I am up it sticks out and is VERY hard. But this morning prior to getting up it was totally flush with my skin. I was like OMG!!! So I get up to do the change, and the half that is the working half (minus the half that closed and collapsed against my skin) is now tilted VERY much to the left. So poop is trying to come out of a slanted opening in the side of a dime sized half of stoma that is the active part. I would GUESS some major retraction issues going on. Like the general surgeon who made this did not loosen enough adhesions or did not detach enough messentry to bring out enough bowel? (OR maybe the Resident who did it) who the heck knows.

SO glad I have the upcoming appt. Plan to fly out Sept 9th in a med flight. SO far just pain around the stoma and have to be able to lie totally down that is why not commercial. PLUS they can pressurize the cabin to sea level so in case this stoma is as narrowed as I think it is, I should not have any bowel burst issues from increased pressure. I soooo wish I was headed west on a vacation. I used to go there all the time on vacations long ago. I should have MOVED there and I would never have gone down this road that I did. HERE IS HOPING!

Rosemary
Posted 8/21/2012 9:19 PM (GMT 0)
Ucwife, I had my surgery April 2007, march 2012 I had a surgery for adhesions! I think it can form over time and for no real reason. I asked him if there was anything I had done to have caused it, and he said no it just happens sometimes.
Then a few months ago a friends employee, who has never had a surgery, basically never a health problem, woke up with a horrible stomach ache, went to the er, and was found to have adhesions!
So I guess anyone can get them, and it seems they form quickly.
Posted 8/21/2012 10:05 PM (GMT 0)
Ucwife

Yep they can come out of nowhere and bite you. My ileo of 2007 good for 5 years basically. Then march 2012 stoma slams shut. Revision of June 2012 already unusually narrowed. Hoping to get a revision that simply lasts!!!!

This issue not the same as summer's but scarring at the abdominal wall level just really came in hard and fast. THeN of all things I remember that most of my ancestors have gall bladder issues at some point in their life. I am like GOD NO!

I am going to ask for a gall bladder ultrasound when I get out west just to be sure there is nothing else lurking. SHOULD have thought of my family history prior to having that pelvic floor procedure that threw me into all of this as none of this stoma business is even disease related. God only knows!!! Gotta step up the prayers.
Posted 8/21/2012 10:10 PM (GMT 0)
JU

I got my medical record from Dr. S visit today. It said stoma very tiny but patent (meaning open). That was he put a Q-tip into it and said it was open at least that much. The other day when I changed it looked like more of the stoma was recessing back into me. I wonder if a stoma can be so tiny that you have issues with it. It would not be so tiny if it had not all pulled to the lkeft and half of it had not collapsed onto my skin. Dr s's note did say granulomas and they were not. It really was the flattened part of my stoma he put the nitrate on and local stoma nurse says that was more likely to be to get the skin to grow over the flattened part. If HE had made the stoma I am positive it would not have gone the way it did. But what could he say? R
Posted 9/3/2012 3:46 AM (GMT 0)
Oh Lordy, Today I tried tomato soup and just a tiny bit of very well cooked spaghetti. Then drank a lot. HUGE ERROR! TONS of thick goo in back of my stoma. Nothing coming out, I was like auugh! So I had 2 glasses of grape juice, the stuff I have been drinking Juicey Juice Grape is only really a bit of grape juice. SO I went and got some tropicana. that moved everything out. thank god, then a ton of the grape juice. NOW I feel like the grape juice is stuck behind the stoma or further back in my right side.

I HAVE to just get back on pure liquids til next sunday or i am going to get into a LOT of trouble. Not that I'm not already in a LOT. Anyway, I have to really talk to the doc out west and find out is this the stoma OR adhered bowel behind it OR both and what can be done. Even the best of the best may not be able to control scar tissue. BUT my original ileo doc sure did right by me. 4 and a half years was very good. I just pray that this doc knows what to do.  This is just terrible.
Posted 9/3/2012 7:38 AM (GMT 0)
Oh Rosemary.. :-( so sad for you. Have everything crossed for you that this new consult will have some answers and you'll finally find a Dr you can trust. Hugs x
Posted 9/3/2012 11:33 AM (GMT 0)
Hang in Rosemary. Thinking of you.
Posted 9/3/2012 12:20 PM (GMT 0)
Keeping you in my thougts . . .
Posted 9/3/2012 2:09 PM (GMT 0)
     Sorry you are still having problems...hand in there!!!
Posted 9/4/2012 2:46 AM (GMT 0)
Thanks all. I am scared I am going to die of this. Today I tried a bit of egg and a half piece of bread. Then of course drank a LOT. The usual happened. The thick goo. To get it to even start coming out, I had to press at the area where there is still pain, between the navel and the stoma. It came out in little increments about the diameter of a Q-tip.

The LAST doc I visited in NYC did put in a Q-tip and said "see it's open." Well, yeah, BUT an opening the size of a Q-tip which does bear out with the thin ribbon type stool that comes out in a ribbon the diameter of a Q-tip. I really have NO CLUE what it is about docs in my area. Other people with stenosed stomas at the fascia OR the skin level just get them fixed, but me OH NO, It's open the diameter of a Q-tip. BIG DEAL!! so do we wait for it to close TOTALLY???? Apparently!

Thanks for well wishes on the new consult OUT OF THE AREA!!! I am hoping it is FAR ENOUGH out of the area! I'm beginning to wonder if I will have to leave the country! THEN there is Sarah IN another country so.........

End of rant. Just had to melt all the crap down with coconut water AND grape juice. Just so worried this will stop working.

I am SOOOOOO hoping this new surgeon I will be seeing Sept 11 can do something about this. It sounded promising on the phone with the office and like she had a plan from the info I sent. SOMEONE needs to deal with this. You cannot just leave a person with a closed poop hole. I did over do the grape juice, so now up for awhile for that to clear out. I just cannot go through another total stenosis.

Keep the prayers coming. I guess tomorrow it is back to all liquids. But only a few more days. Hoping I make it. And stay strong. Too bad I lost my veins while my original current ileo surgeon was doing nothing for 3 months. He was all into this "functional" stuff and totally "missed" a stenosed stoma. I cannot tell you how many residents took a look at the picture of the stenosed stoma and said "who could miss this?" Out of the mouths of honest beginners.

R
Posted 9/4/2012 3:30 AM (GMT 0)
This is just terrible. I've just read through this thread and am so sorry you are dealing with this. It's almost unbelievable that you don't have someone helping you with this. I hope you find a competent Dr very soon.
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