Rosemary?

Hi Mrs. B,

I am in a holding pattern. Still living on liquids. LONG story. Asked some questions about adhesion barriers and what the surgical plan was where I was dealing with was told, we will discuss the day prior to your surgery. All I was told was that we will "explore your abdomen but we can make you worse and maybe on life long tpn." Imaging did not show much as in CT scan and retrograde enema xray. BUT an ileoscopy showed stenosed stoma, and 2 acute kinks behind it (presumably from scar tissue).

I had made travel and hotel arrangements for June 11 when the surgery was scheduled for. Made me a bit uncomfortable that I did not know if they were planning to move the stoma to the other side or what as this will be my 5th stoma in same spot if they did not move it and all around it is scar tissue. I realize they cannot say til they get in there what the real story is BUT on the other hand some form of operative plan I needed. And I asked about an adhesion barrier. Asked a few other questions by email through an office person.

Got a call not too far from the end of May that the person who was going to do the surgery cancelled it and they moved me to another doc and moved the whole thing up two weeks. I scrambled madly to redo ride, person to go, etc. Then there was this pre-op day where they were going to install my chest port PRIOR to clearing me for surgery (being knocked out for this) THEN there was about 6 hours of pre-op appts to get to AFTER being knocked out for the chest port. I still had no op plan from the doc then scheduled to do the surgery but I wanted to go. They had accidentally called my neighbor who is my health proxy instead of me and insisted that my email did not work. They had been trying to get in touch with me. The nurse did not leave a message on my neighbors phone that she was trying to get in touch with me. It was an error on their computer system and when the nurse finally got my neighbor in person, the neighbor gave my phone number. The nurse finally got in touch with me. By then it was too late to show up end of May. THis place was 11 hours away. I also asked how I would stagger around after installation of the chest port and the anesthesia and see all the other pre-op people the doctor being last and being cleared for surgery AFTER getting the chest port.

I was offered no alternate date when I was unable to get there. With all the administrative mix-ups and so on I thought what would the aftercare be like if all h did break lose? I still had no answers to 4 basic questions. I mailed them to the second doc and was told by the secy that he would answer them in person pre-op day after I had my chest port in me. The whole thing sounded back end to to me. So about two weeks later, the second doc actually wrote me a very nice letter answering my questions but I still did not get an operative plan as in where are we going to put this stoma or at least some guesses. I did write a thank you note for him taking the time to answer me but I explained due to the delay in my getting the message all had been moved up I couldn't get out there that fast with ride, friend to stay with me, redo hotel, etc etc.

As I need this surgery so much I assumed they would offer me an alternated date. No offer forthcoming.

The questions I asked were specific to my case not reflective of mistrust of these docs as they are technically excellent all of them. BUT my word, all the mix ups.

I did find in my own state a doc who specializes in adhesions, uses the barriers, laid out an operative plan and firmly believes in waiting 12 months for adhesions like mine to soften. I have heard everything from 6 months to 12 months. My blood levels are slipping a bit and if by next month they have slipped even more we are going to surgery (I hope).

In the meantime out of the blue, I get this call from the first doc's nurse saying if I want him I can see him in November. That would be 14 months since my last open surgery. So I had no clue what to do. My PCP seemed to think closer to home and one taking into account my adhesion history seemed the best to do. I am still living on liquids. The whole thing is a nightmare. By even beginning of june my iron stores had fallen significantly tho not yet into dangerous realm and my B lymph cells had fallen a LOT meaning I could catch something or not recover well and this was even by the end of May.

So I try and get out daily. Live on the Boost VHC. The new place had me on the Fodmap diet of vitamixed real food to reduce the carbs as all the antibiotics disagreed with me in some extreme form or another. The Boost VHC has too many of one type of carb that induces small intestinal bacterial overgrowth. The xifaxan completely stopped my system. not so good. And other antibiotics gave me diarrhea or made me dizzy. So they put me on a probiotic as was the suggestion of one GI at the far away place. So supposedly in August or Sept I have the stoma moved to the other side. This will have to be done open and the incision extended just a bit. Not good. But adhesion barriers will be used. There is debate as to whether they do any good, but with me I feel more comfortable with them.

At this point I have hired an advocate to help me navigate this whole thing. I am very scared of any more surgery and if I could live forever on liquids I would, but this is not for the long term. So that's where I am. Turns out I may not even need a chest port. THis place thinks they can do it with a tunneled catheter in my chest but is not technically a port. This place is good with questions and does not get offended. This is my last chance for possibly a working stoma and life, so I HAVE to ask questions. Not tons but some certainly. So that's where I stand. I will believe in miracles if this works and I do OK. Thx for thinking of me. Sincerely, Rosemary

Post Edited (esoR) : 6/26/2013 10:48:48 PM (GMT-6)

Thanks Mrs. B. me too.

Thx momsi. Actually I am getting weaker had some ice cream today and praying it will pass. Harder to pass stuff. Thought I had found some help closer to home and the plan was to move stoma to other side and give 12 months for adhesions to soften BUT if blood labs slipped then certainly surgery could be moved up.

Well labs are slipping as still unable to eat. Soooo should have just taken chance and flown to CC and "rented" a companion local to there to see me thru. I did not have time to reorganize a ride and companion to go on the short notice they gave me that the june 11 surgery had been moved up to may 29 and a diff doc assigned to me. The nurse who made the call called my neighbors tel. Number for about a week and did not leave a message on her machine. Finally got the neighbor a week later when she was home and neighbor cleared up that it was not my home phone the nurse was dialing but my health proxy neighbor's. So by the time the nurse connected with me I had very little time to get reorganized. It is not like I live near CC. I am 11 hours away! And I dare not really fly with a mostly closed stoma.

So I had to cancel for may. No offer was made to reschedule tho this is life threatening. I was late called by the original nures of the original doc who said he could do my surgery in November!!!!!

With all this mix up and no questions being answered my pcp and I thought maybe closer to home. Well for whatever reason they are into this year long time frame for adhesion softening. Only after I had to cancel at CC did I get a very nice letter from the doc answering my questions. It was mailed june 5 and I was scheduled for preop with him may 28 with op may 29. Hmmmm

Anyway he said that 6 months adhesions are as soft as they are going to get and that at 9 months it is safe (as it can be anyway) to go back in. Now i am at ten months.

I am fading rapidly and am reapproaching them monday. Likely i really blew it. I just never heard of docs being so thrown because a patient asked a few questions. But lessons hard learned. Maybe the ques answer thing is an eastern thing i don't know. But i slammed no doors behind me, paid my bills, and certainly remained cordial.

By now i may need tpn as my ferritin iron stores have dropped 25 points and my b lymph infection fightr cells are 40 on a normal scale of 80 to 616. Odd thimg is that the may surgeons letter did not reflect that he had seen the ileoscopy report showing the stoma stenosis and the 2 kinks behind it and seemed to instead say we don't know if this could be functional or mechanical. There is an awful lot of mechanical stuff going on. I even sent a copy of the ileoscopy report with my 4 questions. Who knows what happened to that but the may doc appeared not to have received that test result tho it is also on their system.

I can see with all the communication issues that i was put off but starving and weakening not a good idea either. This will either work or it won't. Have enjoyed some summer but now so hot. My cat had to be put down today and it was heartmreaking but she was in people age about 100. She saw me thru so much. I said to the vet if this new reloctaed stoma does not work and i am hooked up to tpn for life, i would want "the shot" too. We do it for animals! But i really want to try for a working stoma and more life to live!

So there you are! I should have entered CC in blind faith asked no questions and gone with it. They don't use adhesion barriers and here closer to home they do. BUT at this point i have to go with wherever will do this before i get too weak to have the surgery or this goes emergent. My hair is falling out by the handfuls. Eyes no longer manufacture tears due to malnutrition and have to use restasis drops. Eyelashes are history. In the old days a PCP would try to find one some help wherever. Now it is up to the patient.

Fireworks tomorrow night in my town. Huge crowds. I would give anything for the "good old days" or hey even a working stoma! That was the "new good old days". Maybe with my adhesion issue nobody can make me a working stoma, but i think it is human nature to want to try. I just hope i don't start getting toothaches as soon teeth will go. I force muself to walk daily but have protein deficiency edema by night. Had this since december after being unable to eat for a month. Does not take long.

Rosemary

Thx i am going to contact cc and beg. Here they are postponing for no reason. THx for cat sympathy. Part of me died with her. My phys condition is slipping fast. I may be beyond repair but am going to email a nure at cc and try. RJ