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Rosemary,

That stinks! Hopefully when the swelling goes down, your stoma will function much better than it has..

Fingers and toes and all other crossable-body parts praying for you :)

I'm sorry you're still having such difficulties.

Just to ease your mind a bit about going home, I visited for a minor problem and the staff (WOCNs, Vicky and a random Dr.) was talking to me . They said if I had an issue and went to an ER for this particular problem, then they would just transfer me to Cleveland. I don't live 11 hours away, but I do live 3.5 hours away.

So, in other words, if you ended up in the hospital at home with something stoma related/digestion related, you should call them up and they would figure out if you needed to be transferred and a way to get you transferred.

Darn that's suppose to be thinking

Rosemary, if your bleeding after a dilatation was so extreme or dangerous I surely think the CC ER dept would have admitted you to the hospital. They did not do that. Instead you said they offerred you to stay longer in the ER which seems to have been their way to alleviate some of your possibly unnecessary panic. I also strongly suspect the ER docs spoke to Dr. Shen while you were in the ER and I know for certain he would have had them admit you if he had concerns. In addition you mention his assistant told you that things are ok by now.

So maybe you just need to step back a bit, relax, and try not to hit the panic button on every thing that happens. I don't understand you wanting to see your local surgeon at this point. Seems you are starting to walk a thin line again with doctor hopping.

It seems your radiology results showed Dr. Remzi something which he wanted further investigation on before he opened you up or he thought might be resolvable in an endoscopy room. So he called in his #1 ace GI guru to look at things and try what he could to keep you out of the operating room. And I think Dr. Shen doing an ileoscope without taking biopsies would be medically irresponsible. Biopsies are taken not just to rule out IBD or other autoimmune diseases which can cause intestinal inflammation - which can start anytime in your life, but also to rule out dysplasia. This is one of the reason why these doctors are the best, because they are thorough. That is a good thing Rosemary

Sure seems to me that they are working together as a team at CC trying to help you. I still believe if you want to get well that you need to put your trust in the CC team, and try not to be so overcome with worry and panic at every step but rather try to keep things in perspective.

Post Edited (ddd45) : 4/17/2013 3:47:53 AM (GMT-6)

ActiveUCer said...
Hi Rosemary, I just wanted to come in and say that yes...you are going through some very difficult times but trust CC. Listen to DDD45 and be careful about Dr. hopping.

 

Sounds like this might be the way to go....stay put and let CC do what they are best at.  What is the opinion/consensus of closing up the "bad" side of things and relocating an making a totally new stoma on the other side as you mentioned????

Rosemary I would stick with the doctors you are seeing now I know how hard it is to trust them but switching doctors again could just complicate things further , the team you have now are recommend by so many people on the forums and like they say if they were so concerned about the bleeding I'm sure they wouldn't have let you leave the hospital . Rosemary let dr remzi help you don't think about dying I'm sure they will fix you up if you just give it time and most of all trust them .

Rosemary,

Sorry to hear you are still not feeling that great, and are getting discouraged again..

Perhaps while you are there you can talk to someone..a patient advocate, a minister, or a psychologist/psychiatrist..

I am not trying to insinuate anything, just that this has taken such a toll on you mentally, physically and emotionally that having someone professional to talk to may help you clear out some of the cobwebs in your mind.

Love and hugs, keep your chin up and smile~ get some sunshine and relax..you are in good hands, let them do their job :)

What you tell a psychologist or a psychiatrist is not "there for the world to see." Things are reported only if you are a danger to yourself or others. You have to sign very specific paperwork for them to tell anyone (including any other doctors) anything. I had psychology/psychiatry care before I had UC and I was very happy I had continued counseling throughout these difficult and stressful situations. Anybody with chronic health problems is going to be put through a good deal of stress and have greater anxiety than someone who does not have chronic health issues.

If the bleed area wasn't showing at the time of the scope, then that's a sign the bleed area is healing on its own.

You are not dying. Others have said they were on a liquid diet for years. In addition, a little blood can look like a ALOT of blood. On fabric, in toilet water, and mixed in with output in a bag. Even if your bag was a third full of just blood, I think that's comparable to getting five/six tubes of blood taken from you at the hospital for testing. Unless you were given a blood transfusion, you weren't bleeding a terrible amount. An unsettling amount, probably. Especially unsettling for you to see it come out of your own body. But it's mostly stopped. The Dr.'s are offering to treat the bleeding issue if you need it.

Thx for suggestions. The laest from the NP is that the doc will still be willing to "explore my abdomen but that as he told me at consult no promises that it will solve my gut issues". I don't get the lingo here. The scope/dilation try that the gi tried that triggered the bleeds did show definite stenosis, angulation, sharply angled areas in my smalll bowel 5 and 10 cm inwards from the stoma. His assitant said this is indeed mechanical and is in the surgical realm. I just don't get the "willing to explore your abdomen but no promise of being able to fix the gut function". I have no motility issue. Mechanical issues have been actually endoscopically photographed. Am I missing something with the lingo? I have one more chance to ask some good questions and I need some answers. Am working on it and expressing that I understand there are no guarantees but that absolute mechanical issues have been identified.

So why would fixing these not help? Or is it my pronation to form scar tissue? I want to know what the surgical "road map is" hope this makes some sense. So exhausted and hungry trying to live on protein drinks and so hoping no bleeds restart.

Am hanging about til wed to see if my body has healed itself. But if any more bleeds I will have to have the scope cautery. The stoma tears and subsequent scarring are healing. As a consequence tho the stoma is somwhat constricted and working less well than prior to the scope dilation attempt. Liquid yogurt won't pass as it could prior neither can ice cream. Auuugh!

No Dr is ever going to say to you that a surgery will without a doubt going to fix your problems. They are all going to say it might work, or it will probably work. He probably just words things differently. You have a very difficult case and you yourself are very pessimistic about everything. So he is not going to tell you "oh yeah this will fix it all". When it's a difficult case and you seem to have already decided it won't. And that you need your stoma moved. I have a feeling that no matter what any doctor tells you you aren't going to like it or think its the right way to go. You haven't trusted anything any doctor has told you so far. And you have been questioning this doctor before you even saw him. You have to listen to what the actual doctors say, the ones who have actual training. Let all this negativity from the first surgery go that's not helping you. People who put negative energy out get negative energy back. That is something therapy could help you with. You constantly go back the first surgery. It's not changing anything at all to talk about it. It's not doing Any good to carry around all that anger over things that already happened. Was it a horrible thing? Yes it was. Did it really suck that the surgery didnt go the way it was supposed to? Yes. Does bringing it up and dwelling on it and using that as a reason for distrusting every single doctor you have seen since help anything? No not at All! Find a therapist, get some help, maybe some meds. There is no shame in that. Millions of people need that. And then start trusting that this dr who has years of experience knows what he is doing!

I love you all so much and I totally get the point. Even without dwelling on the first surgery that threw me into all of this, and focusing on the now, I have soooo much scar tissue in me that I don"t know if my situation is solvable by anyone. I know I am dealing with one of the best surgeons in america with over 50 percent of his surgeries being difficult reoperative surgeries. It is not his expertise I doubt but rather what I am phusically bringing him to work with.

To use an analogy, bringing damaged lumber to the best carpenter in the world and saying can you make me a great house? The adhesions web site and the karen steward book sum ot up, some of us are zebras where most are horses. Meaning some of us are scar tissue formers to the max and most people aren't. Some people or I should say most people could probably have many stoma redo's and be fine whereas I cannot. I have one more chance. It has to be the doc who is the most mindful of adhesions not necessessarily the most famous.

The code from my home town docs is to do nothing as in we do no harm. But in doing that am I just going to dwindle away at some point? Some of my friends are even blaming me for all these stoma redo's and for what caused me to need a stoma in the first place. That does not help.

So far no stoma blood since wed. But we shall see. I did hold on the subsequent scoping and cautery IF source of bleed of last sunday and tiny one wed could be found figuring if my body is healing itself then why go in and rile it up. Stoma working much worse since the well-intended dilation. It is now hardly able to put out liquid and boost vhc. I will be very very careful how I word some questions I have for the surgeon. But withstoma now unable to pass even liquid yogurt and ice cream like it could when I came here I am not sure what to do. Planning to head home wednesday IF no bleed whats-so-ever. The ER last sunday was also of the mind set with head GI if the big bleed stopped as it did then not scope back in. As the wed bleed was so short and so little in amount and stopped I really hesitated on the scope to possibly cauterize what was already healing or trying to heal. Again I am a zebra most people are horses. Most people would be hunky dory with a dilation. My stoma split in two places filled in with scar tissue and became worse in function and bled. Most people's would have not. I have very narrow small intestines so very narrow stoma. Tho without all the scar tissue it would be working ok as did my first one for so long.

Maybe acknowledging that my body is different than most in terms of scar tissue may be a way to ask the remaining questions I have without sounding doubtful or offensive?

I have spoken with my counselor who is the best of the best. It doesn't solve the issue but focuses me in the now. But that is in itself a challenge. Sure the dilation sounded like a good idea. Did it turn out well for me? No. Made things worse, what can I say. It was a try at a non surgical approach. Tough being without food for so long 6 months so far.

The nutritionist here is a sweetheart but she doesn't understand why 3 grams of fiber in avery thin ensure shake backs up in my stoma. Well even the ones with zero fiber back up. What can I say.

Nice here today. As an aside I am weak but we went to the rock and roll hall of fame today. It is down by lake erie. Along with the science center. We may go again tomorrow and monday as we need to stick around til wed to await has the bleed issue really stopped. I have boost vhc literally stuck in me. But what can I do?

Again, I take nothing wrong that anyone has said. I will use it to guide me in my questions that I get to email in on monday.

Here here...or hear hear!!

Oh by the way, medi evac's all on me, no ins being used for this. Spending all my money in attemppt to save my life which may be fruitless due to the adhesion issue. May lose house etc. Sorry to have taken your time and atention. Would love all those soups people have suggested. Only thing is grape juice and sugar is all that will break down the boost vhc diluted in coffee that is all that will fit thru this stoma. Up til last march when first stoma slammed shut I was touring the world, cruising, out with friends, leading normal life. There is no reason I would have taken up "doctor chasing" if not for all these closing stoma's. It' quite the problem but won't bother you again with it. Sorry. Will do my best.