Ulcers, reversals and pain oh my!
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.
This group is the only bariatric surgeons in the state that my insurance will cover. I can't afford to go any further away than I already do. This whole ordeal has left us struggling financially. I trust the surgeon for the most part, but he keeps pushing a reversal and I'll suffer with the ulcers for the rest of my life before I have one. The only way I would consider a reversal is if I were going to die without it.
You deserve a prize for hanging in there.
I have been in a similar situation, but not due to ulcers so all I can do is say hang in there. I have to say that my friends kept wanting me to get a second opinion etc, but I know what is in the area and I totally trusted my surgeon and his collegues. I had a PICC line (w/TPN) and a feeding tube for 4 -5 months, but things ended up well, FOr whatever reason my body just started to challenge the surgery and my intestines had shut down.
Things will get better and take one day at a time. I know my surgeon was suprised when I said I did not want a revision and even though I continued to have pain on my left side into the second year. I totally understand your fear of losing what you have gained! (No punn intended!)
Stay strong and REST! I know is is easier said than done!
I have been in a similar situation, but not due to ulcers so all I can do is say hang in there. I have to say that my friends kept wanting me to get a second opinion etc, but I know what is in the area and I totally trusted my surgeon and his collegues. I had a PICC line (w/TPN) and a feeding tube for 4 -5 months, but things ended up well, FOr whatever reason my body just started to challenge the surgery and my intestines had shut down.
Things will get better and take one day at a time. I know my surgeon was suprised when I said I did not want a revision and even though I continued to have pain on my left side into the second year. I totally understand your fear of losing what you have gained! (No punn intended!)
Stay strong and REST! I know is is easier said than done!
I have a few questions for you. Have you taken any products with NSAIDS or aspirin in them at all since your surgery? You are only 4 months out which is pretty new to have such serious ulcers. Did you take a PPI since your surgery or did they just put you on the protonix once you got the ulcer? All RNY's should be on a PPI - protonix, prevacid or nexium for the first 6 months to a year minimum and many surgeons do it for life to protect from ulcers and reflux. Have you taken Pepto Bismol? Many people don't realize that it is an NSAID. Have you taken any steroids?
The carafate you are taking - are you taking it 4 times per day -1 hour before meals and at bedtime? How many times per day are you taking the Protonix? If the ulcers are that serious, you probably need to take it 2 times per day and not once. When you had the endoscopy, did he do a biopsy for HPylori? HPylori is a bacteria that causes ulcers and if positive, it needs to be treated with a Prevpac - 2 antibiotics and Prevacid. It is a 14 day pack taken 4 times per day to kill the bacteria, then after that, you continue on either prevacid or protonix until the ulcer is healed or in a case like yours, probably for life. Without the antibiotics, the ulcers will never heal if you have hpylori. Please ask your doctor.
Don't take the ulcers lightly. Bleeding ulcers are serious and people have died from them. You are lucky you got to the hospital in time for them to cauterize it to stop the bleeding in time. Make sure you are taking lots of iron. I am sure you are severely anemic at this point.
I know you don't want a reversal but you have to think about your life.
The carafate you are taking - are you taking it 4 times per day -1 hour before meals and at bedtime? How many times per day are you taking the Protonix? If the ulcers are that serious, you probably need to take it 2 times per day and not once. When you had the endoscopy, did he do a biopsy for HPylori? HPylori is a bacteria that causes ulcers and if positive, it needs to be treated with a Prevpac - 2 antibiotics and Prevacid. It is a 14 day pack taken 4 times per day to kill the bacteria, then after that, you continue on either prevacid or protonix until the ulcer is healed or in a case like yours, probably for life. Without the antibiotics, the ulcers will never heal if you have hpylori. Please ask your doctor.
Don't take the ulcers lightly. Bleeding ulcers are serious and people have died from them. You are lucky you got to the hospital in time for them to cauterize it to stop the bleeding in time. Make sure you are taking lots of iron. I am sure you are severely anemic at this point.
I know you don't want a reversal but you have to think about your life.
Oh sweetie, I was about your age and weight when I had a BPD WLS in 85'(similar to a Long Loop RNY).
Your complications are very close to what I experienced. I went through hell.
Remember this. No WLS is worth jeopardizing your life!
After 4 revisions (not to other WLS, they were adjustments to lengths of bowel, etc.) I almost died, ended up with ulcers, on TPN for a long time and finally "reversed" in 89". By then, I was so ill, I ended up with almost no stomach, less small bowel.
I will never be the same or even as "healthy" as I was before WLS.
This is the dirty little secret about what some of us go through...
Some folks do well while others just don't.
It's years later, and I'm currently struggling with many late, onset illnesses caused by all of this. Some of them are quite serious.
Go to to the WLS Complications Forum to see my list of comps.
Consider the reversal if you need to.
If you haven't tried it, here's what you could do.
Reverse, join the free group, Overeaters Anonymous (note: this is not a diet group), then see if you can get some good psych. counseling.
It's crucial now and if you elect to reverse.
I worked in the WLS field (as a researcher and counselor) so, I've seen this before and have walked the walk.
Don't take too long to decide. The longer you do, the more ill you may become. You want to be in a decent condition prior to doing a reversal.
Ask the surgeon how many reversals he's performed. If he hasn't done many, you find a way to get to a doc who has.
You can claim medical necessity and request an out of net work surgeon if they don't have one who is very experienced doing WLS take-downs.
Get you primary or other docs to push this.
Good luck.
Let me know how it goes.
Your complications are very close to what I experienced. I went through hell.
Remember this. No WLS is worth jeopardizing your life!
After 4 revisions (not to other WLS, they were adjustments to lengths of bowel, etc.) I almost died, ended up with ulcers, on TPN for a long time and finally "reversed" in 89". By then, I was so ill, I ended up with almost no stomach, less small bowel.
I will never be the same or even as "healthy" as I was before WLS.
This is the dirty little secret about what some of us go through...
Some folks do well while others just don't.
It's years later, and I'm currently struggling with many late, onset illnesses caused by all of this. Some of them are quite serious.
Go to to the WLS Complications Forum to see my list of comps.
Consider the reversal if you need to.
If you haven't tried it, here's what you could do.
Reverse, join the free group, Overeaters Anonymous (note: this is not a diet group), then see if you can get some good psych. counseling.
It's crucial now and if you elect to reverse.
I worked in the WLS field (as a researcher and counselor) so, I've seen this before and have walked the walk.
Don't take too long to decide. The longer you do, the more ill you may become. You want to be in a decent condition prior to doing a reversal.
Ask the surgeon how many reversals he's performed. If he hasn't done many, you find a way to get to a doc who has.
You can claim medical necessity and request an out of net work surgeon if they don't have one who is very experienced doing WLS take-downs.
Get you primary or other docs to push this.
Good luck.
Let me know how it goes.
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