SURGERY #3… beyond repair??

So here we go… after 3 years of suffering with no end in sight and being put on several different medications with no resolution, I was at my wits end! My gastric surgeon didn’t seem to care too much nor was he trying to help me. His answer to my problem was… “the medications you are on should of taken care of the problem, I don’t know why they haven’t worked”. I was diagnosed with 2 large ulcers 2 weeks after I had gastric bypass surgery. I was put on medication to help with the ulcers…. Pantoprazole, and Carafate. The medicine did help a little bit but not ever completely. We tried different meds and I had 3 endoscopes done. If you remember from my last post this was all happening right after I had bypass surgery in Nov 2014. So fast forward all of this continuing to the beginning of 2017.

I went to my regular Dr in August of 2016 because my symptoms were only getting worse. My gastric bypass Dr just wasn’t trying hard enough to help me… it felt as if he got his money from doing the surgery and now I have become a pain in his butt so he just wanted to wash his hands of me. And yes, this is the same Dr that did my previous Lap Band Surgery in 2007… I didn’t want him to do the gastric bypass surgery but due to my insurance I only had 2 places to pick from… I tried to get another surgeon within the practice to do it, since there was 5 surgeons in that office that did the gastric bypass surgery. But no luck! The office told me I needed to use the same Dr as I had before as he was familiar with my case and body. I thought after the first experience with him maybe was just a fluke and since it had been 7 years since the Lap Band everything would be okay. Obviously I was wrong!!! I learned I should of listened to my “gut”, pun intended! But can’t turn back time so on we go…

After I went to see my regular Dr he wanted me to go see a Gastroenterologist. I agreed to go because I didn’t want to go back to the quack-a-doodle I was seeing! Only problem was the Gastroenterologist was booked solid until December. So that meant more pain and suffering but I waited it out. I was very hopeful after my consultation with the new Dr that I was finally going to get help. She scheduled another endoscope so she could see what was going on. After the endoscope. was done I was excited for her to say what the next step would be. She knew I did not want to go back to Dr Dumbass (which by this point that is the name my family, friends and I had gave my bypass surgeon) she totally agreed with me about not going back to him, as she too thought his treatment plan wasn’t getting the job done and there must be something else going on inside besides an incurable ulcer. So Dr comes in after the endoscope. was done and told me the news I did not want to hear… she advised me there was something not right at all going on but she wasn’t 100% sure what it was… even the word Cancer was brought up, because of my gastric surgery site she could only go down inside so far but she didn’t know what was going on, on the other side. All my symptoms etc were not leading to good things.

She advised me I would have to go back to Dr Dumbass even though she didn’t want to do that to me. Her exact words were, “you have a big mess in there and he needs to see it”. This was a total blow but she forwarded my test results over to Dr Dumbasses office and I set up an appointment. In January I went and saw him. He did another endoscope so he could see for himself. He said it was still a “little ulcer” which he had previously said on 3 other endoscopes he had done and when we pressured him for more defined answers he would not comply and walk out of the room. Well this time we knew it wasn’t just a “little ulcer” and he said, “I don’t know what to do for you at this point all the meds we have tried should of worked”. He said we should continue on the meds and wait a few more months and do another endoscope to check it. I advised him this wasn’t going to happen!

He made a rude comment and said well, ” 4 of my colleagues all looked at your case this morning during our staff meeting and agreed with me.” Of course I gave him a look from hell and then he says, “well I guess you can go see Mayo Clinic then if you want and we will refer you”. I said, “good, let’s get this started.” I don’t think his pompous, arrogant ass thought I’d say that. So he took me to one of his nurses and told them what we was going to do and for her to get it set up. Both Dr and nurse told me they had never done this before so they had no idea how to do it. The nurse took my information and said she would call me in a couple of days and if I didn’t hear from her to call back. Well of course I didn’t hear back from her so I took matters into my own hands… I was sick and tired of being in pain!! So I called my insurance and found out what I could and couldn’t do and which Mayo I should go too etc.. I found out I did not need a referral so I could set up everything myself and then bring all my records with me once to the Mayo Clinic appointment.

My spouse by this time which is in the military had been mobilized in Texas since October. So I was trying to get into a Mayo branch clinic in Texas, that did not work and we eventually decided to make the long trip to Rochester, Minnesota. BTW, we live in Kansas. I was seen in March and after the Dr’s had reviewed all my medical records and looked at the endoscope results told me that I was not getting blood to my new stomach pouch which then was resulting in the ulcer. They drew us diagrams and everything which was so awesome!! In 10 minutes we understood so much verses 3 years going through this with Dr Dumbass!! They said I needed to have another endoscope done by their Dr’s. So that was scheduled for April. So in April we went back for the endoscope.

Let me just say that Mayo Clinic in Rochester, MN is fantastic!! We had NO idea what to expect or what we was even doing but that place runs so efficient that it will blow your mind!!! They have it all down to an exact science from the elevators to giving each patient a print out of where they need to go, what desk they need to check into… it was an amazing experience under the circumstances! The place is huge and so many people… you know people that go there are really sick and I found myself wanting to ask them when you are crammed on an elevator… “so what are you in here for”? LOL!

So April and the endoscope… before we went in the nurse had told us we would meet the Dr doing the scope and then afterwards we would get the results from a nurse but we wouldn’t see the Dr again. So while I was in recovery room, the Dr came in… I knew this probably wasn’t good and it wasn’t… he informed us I had a very large, nasty ulcer and things didn’t look good. They were worried about my pancreas and if it had been damaged and other medical terms I don’t even remember. He flat out told us that we needed to be prepared… I needed surgery sooner than later and there were odds stacked against me to survive. This was life threatening and the surgery would not be easy. My Dr’s at Mayo never said an ill word about Dr Dumbass but they agreed had I not sought out help from them then I would not of lived through this.

I was so worried about having to reverse the surgery back to my original stomach… I was more afraid of gaining back weight vs dying. Since Dr Dumbass had told me the only thing he could do before I went to Mayo was to reverse the surgery. Mayo Dr’s advised me they didn’t know what would happen once they got in there but they would try to save it. They could of done the reversal but since my new stomach wasn’t getting blood supply and basically dying (they call it ismatic) no matter what surgery they did to fix this it still may not get blood to it after they did surgery. Its extremely rare the complications I had even happens. They have only seen it in 2% of gastric bypass patients. Mayo sees the worst of the worst cases and I was no exception.

So after all this my new surgeon came in and met with us along with a team and we went over everything. All we had to do then was wait… we had to come back home and wait for insurance to approve everything etc. They said it would take about 6 weeks to get everything set up. Mind you, I needed to have surgery sooner than later. Ugh. So it was a very stressful time. Not knowing what was going to happen and I was still in a lot of pain. Finally insurance was approved but my original surgeon that we met at the Mayo Clinic had to take a leave of absence… but he knew I had to have this surgery so he gave all of my information to his colleague. I was then scheduled for surgery July 13th.

Day of surgery… surgery lasted a little longer than they thought it would… my “small” ulcer that Dr Dumbass had diagnosed had attached itself to my liver and it had to be removed. Then because Dr Dumbass had not put in the correct length of my limb on first surgery… the Mayo team had a hard time re attaching the bypass… then when Dr Dumbass had taken out my feeding tube a year and a half ago prior to this… he didn’t get it all out and I had to be rushed into x ray to make sure it would pass. I actually was waking up during this part and they were trying to tell me that I may have to go back into surgery. Luckily, x rays showed the remnant that was left in me would now pass naturally now and all was good.

My surgery was an open surgery which I knew this going into it. I woke up with a wound vac on my incision but all went well! I survived the surgery!!! The odds were not in my favor but I beat the odds!! Surgery was a success! I was in the hospital for 5 days. The worst part of that whole ordeal was when they had to put in the epidural! HOLY CRAP, that hurt! That was all done before surgery tho, and they could not get a vein for my IV and stuck me 5 times!! I looked like a walking pin cushion!

We came home and all was well… until 2 days after being home my incision started separating. We called Mayo asked them what to do they said go to my local ER here. I was bleeding so bad, it looked like I had been stabbed when I walked into the ER waiting room… just like in the tv shows… I had a towel putting pressure on my stomach and boy did the people stare. They got me back in a room and thought I just had a hemotomia… which meant I had a small blood clot that released itself under my skin. They did some other tests and found I had a UTI which they said was common after surgery since I had a catheter put in. So they put me on antibiotics and sent me home. A couple more days went by and my wound was getting worse… I reluctantly by the advise of my mother and spouse called my regular Dr and made an appointment to see him. My mother had come to take care of me while my spouse worked during the day. I was very weak and didn’t have the energy to go anywhere but my recliner. My mom took me to the Dr and he took one look at it and said, “I need to make a phone call” he came back into the room and told us we need to go see the wound specialist and he would see us now. His office was across the street. I didn’t have the energy for this but off we went. Long story short they thought maybe my wound had disdained from the inside which meant my insides could come out… this Dr visit was grueling to say the least!! I didn’t feel well at all and we ended up having to wait for over 3 hours… I was in the worst pain of my life and all I wanted to do was go home and rest. The following day I had to have a contrast CT done to see if the wound had disdained. Luckily, it had not! But I had a very bad infection!!! Which meant I could disdain at any time if I wasn’t careful. I still had staples in steri strips in between. I was supposed to have the staples removed in just a few days.

My wound care Dr was going to be out of town for a wedding so he wanted his colleague to look at it and check on it before I had those staples removed. My mom and I went back to see the colleague that we had been introduced too and that we had a made an appointment with to check the staples. He undid the top staple, nothing happended… then he took out the second one and nothing… then the staple right above where the infection was… I was literally looking at my mom when she was about ready to say, “so what happens… OMG!!” I of course looked down and seen my stomach part like the red sea!! Even the dr stepped back a little bit, which I knew couldn’t be good. I was waiting for the blood to start flowing but nothing happened. My mom says, “well what now” and Dr says, “we leave it just like this and let the wound heal like a book” It will heal from the inside out. I had a HUGE gash in my gut that was so disgusting!! He put some gauze in it showed my mom how to clean it and sent us home until the other Dr got back in a couple of days to look at it. I was so grossed out when my mom had to clean it, I couldn’t look at all.

When I seen my wound Dr the following week he sent me over to the Wound Care Center at the hospital to get a wound vac. Boy, those aren’t fun to have at all!!
My wound was so deep he could literally put both hands inside my stomach and once all the staples came out, I tore, and so I had an open wound from my breastbone to past my belly button. 14 centimeters long 8.6 cm deep, 12 cm wide. I wore the wound vac for several months. I had to have a home health nurse come 3 days a week to change it out. Not a fun process at all!!

I was supposed to go back to work August 26th but wound Dr said no. My work place HR was not helpful or very understanding and Dr kept pushing my release date. He finally agreed to half days for awhile. Even though I was a dispatcher and got to sit all day, I was still not ready to go back to work. I tried but it was very hard on me and painful. My spouse and I decided I just needed to quit and focus on my health and getting better.

So that brings you up to speed now… I’m still recovering… my wound looks much much better! I do not have much energy still and some days are a lot harder than others but I have come a very long ways from where I was and I’m getting stronger everyday! I have been through so much adversity and challenges beyond my control but it is true what they say, “what doesn’t kill you, only makes you stronger”! Very true statement!!

Thank you for reading all of this and my journey… now that you know my back story we can focus on the future! I am in school now to become a certified health coach and my goal is to help others that struggle with their weight… so now we can focus on that… onward and upward!!

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Food Rebel

Just a girl with a story about the struggles and triumphs in my battle with food.