So, my suspicions were right. My new stoma revised due to the stenosis is not able to function normally on "normal food." I have not been wrong about
anything yet, but for reasons beyond my comprehension I have to PROVE everything.
1. The hospital where I got my original ileostomy surgery and the original ileo doc retired, his successors did not believe I had a stenosis though signs were obvious.
2. FINALLY after 3 months I found 2 docs who supposedly worked together who said the stenosis was obvious and did "fix" it. The senior partner was a colorectal specialist (though after the fact, I find out was not colorectal certified.). The younger partner who is lapro specialist is great at that though not a colorectal surgeon and I knew that. BUT the plan was they were to operate together. The younger to do the lapro, the senior to do the new stoma. Turns out the senior was not even in the OR.
3. First month, June, all good while the stoma was swollen, and all
open.
4. Second month, July, naturally the swelling goes down but because the stoma was stitched quite far out to the left, when the stoma shrank, the left half of it actually grew out flat onto my skin. The remaining part that does all the work is only 1/2 inch wide.
5. See three stoma nurses and vna to bag the thing as leak occured. Got this conquered. VNA nurse is fabulous but as she was not needed for the bagging part any more I was discharged. OK makes sense. BUT she was like try to eat normal food and if it looks like it is not coming out, take an ativan and don't worry about
it. OK again, granted I do get worried as I have been through so much.
6. So today I eat 2 pieces of thin bread with a scrambled egg and lots of water, then ice tea. Then I have a half of a VERY ripe banana chewed very well and more water. Granted banana and bread (though thin sliced) are "thickeners" but to put this stoma to the test I needed to eat something more than yogurt and rice crispies and protein drinks.
7. Transit fine, in 3 hours that banana and sandwich are right at the stoma. It swells I got into horrific pain. THere is no way in H--- that I am going to take an ativan and "chill out". I have a major food blockage, what does the non-ostomate world not get about
this? It is a blockage of waste behind a stoma! Even hot tea does not help.
8. So with the TINY 1/2" across part of the stoma that is TRYING to peristalse but cannot fully do it as it is adhered to the skin by the part of the stoma that has grown into the skin, it cannot pass waste. So I do something I never thought I could do... Glove up, grease little finger and gently insert it only a few millimeters into my stoma. No doc's little finger could even fit in the
opening of this half inch wide part of stoma where the food comes out but the tip of my little finger could. That LUCKILY started things rolling.
9. Then grape juice and hot tea and a walk. Then suddenly tons of this really thick poo comes out. I was praying all the time. Then the stoma due to the blockage starts to swell so I took a bath, changed the appliance cut a bigger hole cut, had some more tea but I guess it was all out of me. In lots of post blockage pain but I THINK everything is out of me.
10. I had been in touch with the doc who revised my stoma whose heart I believe was in the right place, but I told him of the functional issues of difficulty with getting effluent out and having to walk and drink hot drinks and lie on my right side or be in constant motion to get stuff out like a cheese sandwich and soup and that the funky shape of this stoma with half of it anchored on my skin and the other half trying to move poop out there was an issue. He is like as long as the function is OK. Function not OK that was my point.
11. Felt myself getting in trouble the other day but had not eaten as much or anywhere near the bulk I did today. I send a short email saying odd shape affecting stoma. He emails back but not as timely a fashion as the automated emails, like he had some time to think about
it "automated email will be out of office and limited email accessibility 4/1-4/9. Call office (then gives tel number) for emergencies." What??? April is gone by. So has July 1-9 if it was just an error the 4 instead of 7 for July. The bounce back time for this "automated message" was not instant like they normally are. ? Does he not want to hear about
his stoma revision not working??? I am not looking to blame I am looking for help.
12. Meanwhile original ileo surgeon who did the stoma that lasted 4 years and cured me of sbo's but now retired from the place where his successors did not choose to deal with the stenosis says if obvious signs of stenosis, then contact the doc who revised the stoma. I HAVE! Do I want to go back to the doc who with good intent did the needed revision but now does not appear to want to deal with the complications?
13. Had appt the other day with a different colorectal surgeon at another hospital who never looked at my stoma who just said 2 months has to go by before we can tell anything. Granted likely true and he did look at the pics I sent and did read my symptoms. BUT there are things going wrong that are being ignored that I am explaining. Prior to today for example I said having to live mainly on liquids, all well with stoma until it shrank, grew onto my skin, and now only half of it is working.
14. Have appt Aug 13th with another doc who is supposed to be tops in his field (this one far out of my area), after he saw the pics he had his secretary call me right up. Aug 13 not THAT far away and I can just go back to eating gush and pray.
BUT what is going on? I feel like I am back in the twilight zone! One friend says eat what you want, get a blockage, stick finger in and clear it out. I am like NOOOOOO pain involved here not the thing to do. Another is like well got all that house cleaning done yet?
What are people missing? Am I not being clear? I understand people without stoma's cannot relate. I do not understand docs not getting it when I tell them symptoms that I am getting in trouble.
Do I need to hire an advocate at this point in time? I do tell docs that I have cruised for 4 years and my goal is to get back doing that. This lets them know that I have a goal, I have a life, and I want to get back to it. I am not enjoying being in trouble with a stoma that does not work. That I was grateful for the one that did for 4 years and I circumnavigated the world and every continent on it in a ship all while learning to ballroom dance. It is not like I just sat home.
I am at the point of what do docs want? I have pics, I have concise obvious lists of symptoms, and I am goal oriented to getting my life back. I do not go on about
the original gyn surgery that lead me to need an ostomy. I just take it from today forward wanting an ostomy that once again works.
I know THIS post goes on, but I am much less wordy with docs. It is like, I am OK with a working ostomy, but need it to work so I can eat, gain nutrients, pass waste so I can get back to my life. Here are pics of what is going on, here are my symptoms. I keep it short.
SUggestions of how I can do this more effectively or find someone who can fix this issue if it is now not beyond repair. I have to admit at this point, this has gone on so long, I am completely at a loss. Rosemary
Post Edited (esoR) : 7/27/2012 10:34:47 PM (GMT-6)