HELP!!! ADVICE!!! 15+ years after surg. MAJOR COMPLICATIONS

[SHERIE]

I am 15 years post surg and looking for others like me who have had complications like myself. Besides the little things like IBS, anemia and malnutrition I have also lost most of my teeth from so much vomitting, I have also never been able to eat a reg. meal since my surg. I have had many hospitalizations for dehydration and blockages. I have had one surg to remove scar tissue that was closing off the opening of my stomach and am now having to face another one. BTW for the second surg. I had developed so much scar tissue that they had to crack me wide open again from sternum to belly.
Here is my main problem: Last October I started vomitting a lot and throughout the next two months was on a very restrictive diet of soft foods as we found out that once again my stomach opening was less than the diameter of straw and had once again developed a bleeding ulcer on top of the opening. My gastro doctor tried to stretch the opening with the smallest of instruments but could not do so as I started to hemorrohage. After this my gastro said I needed to find a surgeon that could tailor a procedure for me and I would be lucky to make it a few months without a total closure and emerg. procedure. In that time I lost several more teeth and now wear an upper denture...uugghhh. Fast forward---I made it through the school year (I am a teacher) and the last two weeks --have not been able to eat any soft foods except protein drinks.
The total closure is almost there as even when I am drinking I can feel it build up and if I don't vomit then I can feel and hear it make its way through the very small opening and then CRAMP up so severly that it doubles me over pain. My first two surg. were done over 150 miles and nobody where I live now wants to touch me for surg. My old doctors office said that it can take up to 30 days to get my records to a doctor or me. I have one doctor here that says he doubts he will be able to help me but will take a look at me after he recieves my records. I really don't think I can wait this long for several reasons: the pain, the vomitting, I am so VERY hungry and the recuperation time needed before I go back to school--early Aug.
This has also taken an enormous toll on my relationship. He is very giving and understanding but all the medical bills, not being able to go out and have a nice dinner or nice time without me either getting sick or being too tired etc.

I am sorry to sound like I am having a pity party...I am just sick, tired and more than anything frustrated!!! Does anyone have any suggestions, advice or been through this? Please help if so

For those wondering-- here are the answers to the following questions I always get asked:

1. How much weight have I lost and kept off?--I started at 305 and my lowest weight ever achieved was 188. Even with all my vomitting my body hit a weight and wouldn't lose more.
2. How much weight have you gained back?---I gained back as much as 30 lbs. but lose it when I have to revert back to the soft foods
3. Why didn't you lose more if you were doing so much vomitting? I have often asked this of various doctors--Answers I have been given range from you have shut your metabolism down, I eat too many carbs (they are easier for me to digest than proteins and veggies are IMPOSSIBLE for me to eat because either I can't digest them or they create a blockage) and lastly I am a grazer--this is b/c I can only eat a little without vomitting and again the carbs.
4. Would I do it again? YES! Even with all of my problems, I would go about things differently but definitely YES!
Thanks again for listening and any help to be offered.

 

[SHERIE]

Thanks everyone for the support. I have now seen a specialist and just completeted anther endoscopy...my opening is now less than 2mm and the bleeding ulcer has returned with also another diagnosis of Acid Reflux -- they are talking complete reversal if possible...scared to death of this for many reasons...

 

[Pat99]

Sherie-Such courage you have facing yet another corrective surgery. Technology is so advanced in bariatric surgery that this may indeed be the answer to your problems. Although it's perfectly normal to be scared just keep in mind the advances that have been made in the past 15 years are nothing short of a miracle. I'm sure you are in excellent hands. All of your friends here in the forum will be thinking about you. Just make sure to come back to let us know what's happening.

As far as having problems being able to eat without vomting, have you tried any of the products made with soy like the burgers and other "meats" made by MorningStar Farms and Bocca? I still have problems eating meat but find the soy products easily digestable and most are very tasty. In my opinion MorningStar Farms makes the best tasting products. Try the various burgers and "ribs". I also tolerate canned meats like tuna, chicken and turkey and lean lunchmeats like turkey and ham. I tolerate veggies well but when I first reintroduced them back into my meal plan some were easier on my pouch than others. Winter squash was the easiest and is still one of my favorites, especially butternut. I buy it fresh and steam it and portion it and freeze for later use. Well cooked chopped cabbage, chopped frozen spinach and frozen mixed veggies are also easy on my pouch (cooked soft and moist). I also tolerate raw baby carrots as long as I chew them very well and can have salads with fat free dressings. Low fat cottage cheese and scrambled eggs are staples for me as well. I still have a hard time with "whole" meats and find them uncomfortable no matter how tender I cook them. I posted a Greek spinach pie recipe on this site that you may be able to eat because it's very soft and moist and the pieces are small.

Good luck to you and sending good thoughts and well wishes your way

 

[SHERIE]

Thank you again Pat for such encouraging words...here is where I am at now and I can assure you that I have quite a few moments of backing out and panic attacks as I won't be able to do pain meds. Keep in touch and bless you..They know some of what they will be doing and said they will have to see the rest when they crack me open. What they do know they will do to me is total revision...not of Fobi but RNY (I am still asking questions about why this procedure as I hear it the success rate is lower than 80% for long term), cut the stricture from my intestine and put 6-8 new inches of new intestine, work on the ulcers, clean out old scar tissue and the small hernia that is also present. I will be on a feeding tube for 4-6 weeks after. They are going to have to do another full open (3rd one) since they also need to get pretty invasive and I have WAY too much scar tissue. They tell me my leakage rate is going way up along with other complications....can you fill me in on what they have told you so far and what you are looking at? I am getting more calm about this but still have my panic moments when I want to back out...yet I know I can not continue to live like this and this quality of life. I will be starting at 200#s...I have also been told that one doesn't lose very much with a revision...still checking on this though. I mean REALLY to have to go through all the pain and not lose weight..give me a break!!!! LOL Hope to hear back from ya soon