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

I know. This is a living nightmare. If the crack in the stoma had happened below the level of the skin I would have peritonitis by now. HOPEFULLY I will hear back from the doc when he returns on Friday and that this will just heal itself, BUT when I ever saw stool coming out of the crack I was like OMG!!!!

AND TO THINK, I did not even have the sigmoidocele that caused the removal of it, due to misread of the defecogram (unknown to me at the time), and all the complications then lead to needing an ostomy in the first place it blows my mind. BUT.... current project to have stoma be safe and open however open it can be and I guess adjust diet to almost all liquid if not have stoma revised.

Today I had mostly liquid and did OK. I miss chewing though. RJ

OK so today I still have waste coming out of the crack in the side of the stoma from the digital check to see if it was stenosing. I have a call in to the stoma nurse of that hospital. The doc's nurse knows about it and so does the doc if he has opened my email. Will be back in the office tomorrow so am sure going to follow up.

I checked with a friend of mine who is in the health field and I had said if the crack goes below the skin level, then I might get peritonitis as all that waste would be released into my abdomen. She said yes, that is correct.

So so far today all I have had is liquids and some rice crispies cereal. I think maybe I should stick to all liquid diet as any thick poo would make the split open even wider.

I wish I had looked down and seen all the blood that was coming out of the stoma onto that gauze as I would have made then stop the digital dilation. As no early stenosis was found, the dilation obviously was unneeded and caused problems.

I did say that the new stoma was very narrow due to half of it collapsing onto my skin. But that is did not look swollen and the hole that is there was clearly open. So that would mean no stenosis at any level. This is simply a small stoma due to half of it collapsing. One would think that they would have told me that when they looked at it. I have learned in a stenosis there is a visual appearance to the stoma that tells you so. BUT what did I know. I just know I cannot eat much solid due to having food blockages behind the very small opening of the stoma. Jeeze! I hope I hear back. Am going to do a little scenario in print in case this turns into some emergency. Had life gone the way it should I would be out swimming right now and have a super tan. Then come home to a nice full dinner of potato, steak, salad, and a dessert. My former favorite. So unreal. R

Sorry Rosemary.... it is sounding like a nightmare. Be sure to take your temperature some and go to the ER if you start spiking a fever... hope things start to turn around, somehow.

Thanks Helen. I live in Massachusetts. And am right now dealing with NYC.

Somedude, your idea is fine but I have so many injuries from the original internal prolapse surgery that got me into ostomyland that there is no way I could be rehooked and have anything work. Good suggestion though as these stomas as you say do not seem to be working out anymore.

Today I contacted the ostomy nurse at the hospital where the resident accidentally split my stoma as she was checking for early stenosis. They listed the symptoms of peritonitis and said not an emergency as long as you are not having these. But you can get the stoma crack checked where you live or we can if it will make you feel better. What will make me feel better is getting the crack repaired by the doctor or some doctor. I clearly should not have had this test but who knew they would split the side of my stoma. As it unswells from the dilation and if that crack then goes down under my skin I am in automatic peritonitis.

If all else fails I can throw myself on the mercy of the doc who did the revision that worked well for a month until the stoma healed all lopsided and just say that he did not repsond to my reports of food blockages then sent me that crazy out of office 4/1-4/9 message; I was worried about stenosing as I had just been through that and had to see someone. And say I would never have had a stoma check if i knew it would tear my stoma. Then just ask if he or anyone knows how to fix the tear. I read one article and they just take a few tiny little stitches. It didn't sound like brain surgery but it is not something you just let go either.

One thing I guess is clear is that even if you get food blockages, IF the stoma is not swollen, discolored, or visibly closed, the one should assume they do not have a stenosis. In a stenosis such as I had in March with the old stoma, it got very swollen, discolored and the hole disappeared. This one did not go this way. I did bring pics of the old stoma stenosing and did say clearly that this one did not even closely resemble that in appearance so could it not be a stenosis? That was their chance to say, nope if you do not have all those things going on then you are not stenosed. Would have been good enough for me to have that confirmed by an MD.

So yes, I really blew it. AND I also think I was a teachable moment for a resident. This place is a big teaching hospital, and I was the teachable moment for a finger exam into a stoma. Again wrong place, wrong time. I just don't know what to do.

Thx Lolly Am working on it. RJ

Hi Marsky,

That's OK. There was no mesh, there was just soooo much scar tissue. I just called a very prominent hospital out in the mid west, you can guess where that was, starts with M..... They said they do not help patients who are in medmal suits or who are in litigation over a work injury. I said the current issue is not being sued for I just need an ostomy that works! I said How did you know I had a medmal. She said your medicare number is listed as secondary and "third party" is listed as primary. That "third party" is the flag that someone is in litigation. Their surgeons do not service people in litigation. I said the litigation is warranted and is the reason i needed an ileostomy. The ileostomy then failed after 4 years and i had to get a redo which is now having issues then a resident at another hospital then accidentally cracked a wall of the stoma doing a finger exam, but I'm not suing any of those docs. I just want help to live! She said sorry. Call back after your suit is over THEN we can help you. I said but I may not LIVE that long. She said SORRY!

SO that is why seriously injured patients do no sue or those of us who do end up getting punished by the system as big name places don't deal with people who are filing suit to afford to live as they have lost their jobs. THE SYSTEM is very scary.

I asked my ins person at work if I just bought my own insurance like a total package like $8000 per year could I then not use the medicare and then it would not flag the "third party" and let docs know that I am in litigation? She said no once you are on medicare you are always on medicare and that flag will always be there denying you care by some of the top places. I wonder if the first hospital where I got the first stoma that worked for 4 years and the current surgeons there ignored the stenosis and said it's all in your head, I wonder if their hospital policy is to not service people with that flag. I should call medicare and let them know this is happening. Rosemary

Thx marsky I hope so. Nobody in family in medical field as I am only one left, no family. No friends In med or legal field I am high and dry and all these people I am dealing with know it.

There is. A new place on my stoma caked in white which is a sign of healing I took a pic of the new place toiday. That may have been or may be an additional crack in the stoma. Here's hoping no cracks in stoma that go under the surface or any small intestine inside my abdomen that also had a hole made in it from the stoma digital exam. Even the secretary was like call the emergency number if ytou get signs of peritonitis this weekend.

Gilda, That is a nice offer. Did you read above where my revision is acting funky then a new consult, the resident actually caused a split in my stoma doing a finger exam. I had poop coming out of the crack in the stoma and they said if I notice signs of peritonitis then I need to call them. I mean she could have also split some bowel apart beneath the layers of my abdomen.

Then the whole issue about being in litigation. I did find the doc I need who has the expertise specific to my injuries and scarring but cannot get registered to see them until litigation is over. If the trial or court date for my defendants is going to string out for years (I will find out right after Sept 4) then I am going to just drop it and get registered and get the help that I need. Dr. Talamini's practice may have the same policy.

THOUGH I may croak in the meantime, I CAN see the logic of some of these big name places having that policy as their docs are so good that they do not want them having to sit about in court rooms testifying at medmal trials when they could be at their practice saving lives. I NEVER thought I would have an issue with my original stoma let alone the revision. AND my suit on my defendants is not all about the money, what they do is really misdiagnosis, negligence, going way beyond consent, then not following up to complications. I wanted to save other women from them. At this point they have 13 combined claims and suits on them. My end of the state is not a safe place because of them. BUT given the choice between "making a statement" and getting my own skin saved from impending peritonitis, I will need to make a decision very shortly.

Let me know how you do with Dr. Talamini. He is at a big hospital like the one out west where I know this doc could help me so I think his hospital would likely have the same policy. I am really going to check into this.

What is Dr. T's plan for you? Is he going to knock down adhesions and do a new stoma? You have seen him before and it has been ages since that time. Why did he leave you like this for so long? Let me know. And again thanks for the invite. I will keep your number. PRay for me that I don't succumb. I am sure that is why defense atty's for medmal suits postpone their depo's many mamy times as mine did. THEY KNOW that either the person will die due to their injuries OR that they will need help at a big place and not be able to get it due to the no help if in litigation rule of these good big places.

That may explain why my current ileostomy surgeon who took over when my original one retired ignored my severe anastomosis stricture. Maybe that very hospital has the same rule and I did not know. The doc who saved me was on the verge of retirement so he did not have anything to lose. Now it is all making sense. Such a horrid system. And so many errors I made but only due to misinformation and not knowing all the legal and medical world stuff. BUT I sure need help and am really scared. I dare not let anyone do anything more to me until I can get to this one expert. There is one for each of us, we just have to connect. I hope Dr. T is your's. Good luck. Rosemary

Rosemary, I can not believe that picture of your stoma..what in the world would have caused that? I don't see how a finger inserted into your stoma would cause it to crack???? What does the doctor think? I have had my doctor insert his finger twice into my stoma to check the size of my hernia and it didn't bleed, only swelled afterwards. Did you post on the UOAA board and ask them if they had ever heard of this happening? There is alot of veterans on that board...

My heart breaks for you Rosemary. I pray for a miracle.

What do I do? Do I put up letters with pics of my stoma old ggod for 4 years, then stenosed, the remade but then part of it collapsed thereby affecting its function, then the food blockages, finger exam done at place highly recommended that cracked my stoma in 2 places, left to monitor myself for peritonitis, not abke to take in much as not much can come out, even less now than before it was cracked and scarred, and see who will advise or help and be able to take down adhesions and make a working stoma? I could do mass mailing across the us and abroad and see what happens?

Likely just waste postage but jeeze!

Thanks there is always hope but I think in this case it will take really hard work on my part. I just hope I live!