Ulcers, reversals and pain oh my! XPOST
I'm not even sure where to really start. I apologize if this is long, but I'm trying to process all of this information. I'm currently in the hospital for the 3rd time in a month due to ulcers. I was diagnosed via EGD on 6/6. I was put on Carafate and Protonix and assumed things would get better. Towards the end of June the pain started to get worse. It's that lovely gnawing, burning pain that never lets up. As it got worse I started vomiting a lot. It got progressively worse and I was admitted 7/8 for dehydration. They gave me fluids, put in a PICC line since I am such a hard stick and said if I dtidn't get better we would discuss TPN. I did okay for the first week or so, but it was a struggle. I'm on Zofran for nausea, but it doesn't always help. At this point I was on full liquids, by my choice not my surgeon's order. Liquids were marginally easier to tolerate. Between the pain and the vomiting it was a struggle to get in the nutrition I need. On 7/15 I was admitted yet again. This time my surgeon decided to do another EGD to see how the ulcer looked. It had a few signs of healing, but was still there. Fortunately, it hadn't grown any. He decided to start me on TPN feedings at night and IV fluids during the day to allow my stomach a chance to heal and to make sure that my nutritional needs were being met. The TPN made a huge difference. I had energy and I was starting to feel better. I was having a hard time swalllowing large pills so my surgeon called me in liquid Lortab. Every time I took it (all 3 times) it burned like battery acid in my stomach. It was horrible. It made my pain so much worse. So, I called the surgeon and he told me to just crush the pills. I thought that was the end of it. My follow-up was scheduled for 8/3.
Yesterday morning I woke up around 2:30 am in horrendous pain. I couldn't talk through it to tell my husband what hurt. Next thing I know I'm in the bathroom vomiting although I hadn't had anything by mouth for at least 5 hours. My vomit looked like instant coffee. I could taste the blood in my mouth afterward. I was worried, but I had an appointment with my surgeon at 10am. I vomited 2 more times before I made it to my appointment at 10. I told my surgeon everything that had transpired. He told me he felt a reversal may be in order. I bawled because I don't want this tool taken from me. However, I've dealt with this ulcer since the end of May with no real progress. I told him I would prefer a revision even though I know there is a risk of recurrent ulcers. He agreed to do an EGD today and said we would figure things out from there. I think he was surprised at how adamant I was about not having a reversal. The only way I'll consider a reversal is if I'm dying. I don't want to lose this tool. I'm terrified I'll regain and my health will be just as bad as it was before surgery. If it means living with the ulcer forever the so be it. Or at least that is what I thought at 10am. I live about 2 hours from the surgeon's office. On the way home I got that same mind boggling pain that plagued me at 2:30. This time I pull over at a truck stop, vomit more coffee grounds like blood and then drive home. I was at Sears getting the oil in my car changed when the pain hit again. I went to ask the associate where the bathroom was and before I could finish my sentence I vomited all over the place. This time it wasn't dark coffee like blood. It was red, mixed with clots and some coffee grounds. I was terrified. The associate offered to call an ambulance, but I declined. I helped clean the mess up since I know I wouldn't want to clean a stranger's blood off the floor. I called my surgeon and high tailed it back to his hospital.
They admitted me here last night. My hemoglobin was low, but not low enough for a transfusion. So, they got me somewhat comfortable and I awaited my EGD this morning. The EGD this morning showed that my original ulcer has grown and I also now have another ulcer. The second ulcer ws the source of the blood and the GI cauterized it during the procedure. My surgeon came by this afternoon and said we would discuss all my options tomorrow. He wanted the chance to consult with his colleagues and wanted me to be able to rest some.
I'm scared of what tomorrow will bring. How is it possible to develop an ulcer while on Carafate and Protonix? What the hell is it about me that makes these things not want to heal? I still don't want a reversal. I would rather have a revision, but at this point something has to be done. This has been months of suffering and being in and out of the hospital. I can't take it anymore financially, physically or emotionally. The concern about a revision is the ulcers reoccuring and me ending up with a reversal anyway. Am I crazy for at least wanting to give it a shot? I know that I am possibly putting myself at risk for another surgery, but I want to give my RNY every possible chance to work.
Any advice from people who have been there or veterans or anyone? I'm so confused and conflicted. I want to feel better. I need to feel better, but I do not want this tool taken from me. My friends that are not obese don't understand. I wasn't as large as most people that have RNY, but at 27 I already had high blood pressure, borderline diabetes, PCOS, sleep apnea and GERD. I have normal blood pressure now, no GERD, no issues with my blood sugar, I'm off my CPAP and my periods are normal for the first time ever. I know I cannot continue like this though. I"m just not sure what to do.
I'm so sorry this ended up being a book. If you made it to the end then you deserve a prize.
Yesterday morning I woke up around 2:30 am in horrendous pain. I couldn't talk through it to tell my husband what hurt. Next thing I know I'm in the bathroom vomiting although I hadn't had anything by mouth for at least 5 hours. My vomit looked like instant coffee. I could taste the blood in my mouth afterward. I was worried, but I had an appointment with my surgeon at 10am. I vomited 2 more times before I made it to my appointment at 10. I told my surgeon everything that had transpired. He told me he felt a reversal may be in order. I bawled because I don't want this tool taken from me. However, I've dealt with this ulcer since the end of May with no real progress. I told him I would prefer a revision even though I know there is a risk of recurrent ulcers. He agreed to do an EGD today and said we would figure things out from there. I think he was surprised at how adamant I was about not having a reversal. The only way I'll consider a reversal is if I'm dying. I don't want to lose this tool. I'm terrified I'll regain and my health will be just as bad as it was before surgery. If it means living with the ulcer forever the so be it. Or at least that is what I thought at 10am. I live about 2 hours from the surgeon's office. On the way home I got that same mind boggling pain that plagued me at 2:30. This time I pull over at a truck stop, vomit more coffee grounds like blood and then drive home. I was at Sears getting the oil in my car changed when the pain hit again. I went to ask the associate where the bathroom was and before I could finish my sentence I vomited all over the place. This time it wasn't dark coffee like blood. It was red, mixed with clots and some coffee grounds. I was terrified. The associate offered to call an ambulance, but I declined. I helped clean the mess up since I know I wouldn't want to clean a stranger's blood off the floor. I called my surgeon and high tailed it back to his hospital.
They admitted me here last night. My hemoglobin was low, but not low enough for a transfusion. So, they got me somewhat comfortable and I awaited my EGD this morning. The EGD this morning showed that my original ulcer has grown and I also now have another ulcer. The second ulcer ws the source of the blood and the GI cauterized it during the procedure. My surgeon came by this afternoon and said we would discuss all my options tomorrow. He wanted the chance to consult with his colleagues and wanted me to be able to rest some.
I'm scared of what tomorrow will bring. How is it possible to develop an ulcer while on Carafate and Protonix? What the hell is it about me that makes these things not want to heal? I still don't want a reversal. I would rather have a revision, but at this point something has to be done. This has been months of suffering and being in and out of the hospital. I can't take it anymore financially, physically or emotionally. The concern about a revision is the ulcers reoccuring and me ending up with a reversal anyway. Am I crazy for at least wanting to give it a shot? I know that I am possibly putting myself at risk for another surgery, but I want to give my RNY every possible chance to work.
Any advice from people who have been there or veterans or anyone? I'm so confused and conflicted. I want to feel better. I need to feel better, but I do not want this tool taken from me. My friends that are not obese don't understand. I wasn't as large as most people that have RNY, but at 27 I already had high blood pressure, borderline diabetes, PCOS, sleep apnea and GERD. I have normal blood pressure now, no GERD, no issues with my blood sugar, I'm off my CPAP and my periods are normal for the first time ever. I know I cannot continue like this though. I"m just not sure what to do.
I'm so sorry this ended up being a book. If you made it to the end then you deserve a prize.
I am SO sorry you are having to go through so much. I know you've been struggling with the ulcers for quite sometime and I wish they could find another route for you besides a reversal. I wish you much luck and I hope they figure something out so you can start feeling better and actually ENJOY your tool. {{HUGS}} 
From what I've read they can "revise" the RNY and cut out the portion of the pouch with the ulcers making a new smaller pouch. I've also read of cases where the RNY can be converted to the VSG. Both surgeries would allow for them to cut out the areas that are ulcerated. However, there is still a risk that I'll just end up with more ulcerations. I've been researching for months and everything I've read said a revisional surgery is the next step in treatment of marginal ulcers. A reversal seems so final and I would like to still eventually get to a healthy weight.
I'm so sorry you're having such an awful time.
I can't really advise you about what to do or say what I would do as far as a revision, reversal, whatever. I just don't know enough. I can say that I would have an indepth conversation with my surgeon, asking why he thought the ulcers were getting worse instead of better. I'd want to know, if I had a reversal, how that would help the ulcers get better and what the chances were that I'd still have ulcer problems even after a reversal. I'd want to know what my options were for a revision (VSG? DS?) and what the chances were that I'd continue to have ulcer problems after the revision.
I understand that you gotta do something and I think if I was in your shoes, I would wanna do it soon. I mean, how much longer can you possible go on like this? But I'd still want to get as much info as I could so I could make the best decision for myself. I might want a second opinion, too, especially before I opted for a reversal.
I can't really advise you about what to do or say what I would do as far as a revision, reversal, whatever. I just don't know enough. I can say that I would have an indepth conversation with my surgeon, asking why he thought the ulcers were getting worse instead of better. I'd want to know, if I had a reversal, how that would help the ulcers get better and what the chances were that I'd still have ulcer problems even after a reversal. I'd want to know what my options were for a revision (VSG? DS?) and what the chances were that I'd continue to have ulcer problems after the revision.
I understand that you gotta do something and I think if I was in your shoes, I would wanna do it soon. I mean, how much longer can you possible go on like this? But I'd still want to get as much info as I could so I could make the best decision for myself. I might want a second opinion, too, especially before I opted for a reversal.
Kelly
Please note: I AM NOT A DOCTOR. If you want medical advice, talk to your doctor. Whatever I post, there is probably some surgeon or other health care provider somewhere that disagrees with me. If you want to know what your surgeon thinks, then ask him or her. Check out my blog.
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