Help, 15 Years After Surgery

[SHERIE]

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



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.

 

[Pat99]

SHERIE-Sorry to hear about all of your problems. The only suggestion I have is to "recruit" your PCP to scout around to try to find a bariatric surgeon or even a talented general surgeon who can correct your condition. Doctor's listen to other doctor's far better than they listen to us. They are also connected in a way that allows them to know who really is the best of the best and also take on difficult cases as favors to each other. Good luck.

 

[TwoMas]

Hi Sherie, Welcome. I am so sorry to hear about the hell you have been through. I hope it has not been like this for you continually throughout the whole 15 years, that is a long time. You must have had your surgery when it was fairly new but out of the trial phases. There has to be a surgeon out there that can help you however being a teacher it would be very difficult to just travel to who knows where to have the surgery done especially if school were in session when you found some one. You are very brave to say you could do it again, I haven't had any complications except for a craving for alcohol that I have never experienced in my life, I have since quit but I too would do it again, I am very happy with my WLS. I don't have any advice except to repeat Pats suggestion of using your pcp to network the medical community. My thoughts and prayers are with you. Tom

 

[SHERIE]

TwoMas thanks for the encouraging words. Unfortunately,my problems started one week our from surg. so I have never really been able to enjoy the benefits of WLS. In a lot of my counseling classes they talk about addicts and their addictions and when an addict gets rid of one they transfer it over to another addiction. I am so glad you have conquered the alcohol as I have seen more destruction caused by alcohol--it is sad. I was just contacted by the ONLY surgical team in S. Colorado that works with bariatrics and they have agreed to see me next week. They have suggested that I make it in to the ER to start the paperwork and testing...I am trying to hold off on this as it is so expensive and no telling who would deal with me. My other option is to go to a university hospital 75 miles away--problem with this...no family or friends that can help me out up there also I do not want any more students learning and training on me. Keep me in your thoughts and prayers as I will you. I am glad I found this forum Have an awesome day!

 

[SHERIE]

Pat, thank you so much for your words of encouragement. My gastro doctor suggested one of the very few dr. here in my area yet he was the one who refused to work on me for the second surg. My PCP suggested University Hospital up in Denver....I have no support up there (did this on my initial GB) and I really do not want a student working on my this 3rd time around. However, it looks like this might have to be the way I go. I will let yall know once a decision has been made.

 

[NanaG67]

I agree with you about University Hospital. My oldest son was born there. But when he was 10 months old and got really sick they kept telling me he had bronchitis, when in fact he had croup and was hospitalized at Denver General for 3 days, then went home had a seizure and was back in the hospital for another 3 days. If University Hospital would have diagnosed him correctly the first time this never would have happened. So please keep you options open. Maybe you can tell them that you don't want a student handling this surgery because of the all the previous problems. Good luck and keep us posted