Completely Confused and Not Sure What To Do

[annabellarose77]

Hello Everyone. I haven't posted much here, and I know that my last post I was dealing with stomach issues and complications from RNY. I have recovered from most of the post-c-diff issues, but am still dealing with the severe nausea, heartburn, vomiting, and upper epigastric pain. I cannot tolerate solid foods-every time I try to eat a couple of bites of solid dense protein-I vomit uncontrollably, but no food will come back up-only mucous. After countless stomach tests, EGD, Upper GI, CT Scans, nothing has shown up, but just being told I have a tiny pouch. Well, I have finally got some of my medical records and I'm trying to understand just what was done to me during my RNY. According to my surgeon's op report--I know it was distal--150 cm, but what has me confused is he says after performing endoscopy--"there was a nice 1 cm pouch." I thought maybe he meant stoma, but after reading, I believe he means the gastric pouch..Isn't a 1 cm gastric pouch very tiny? I have been reading about something called a "micro pouch" but I never agreed to that, not was it ever discussed. I got a copy of my last upper scope done in April 2017 and the GI doc states--

"There was not an impressive gastric remnant, but rather appeared to have jejunum attached very closely to tiny stomach remnant, and that a tiny clip was noted at anastomosis."

I have requested all my records, and am hoping to have the hospital records soon, and I have asked for clarification and measurements from the GI doctor, but she has yet to respond. I know I'm going to have to do something, as I can't keep living like this. Does anyone have any experience with having a tiny pouch and possible complications from it, or maybe can understand the medical lingo better than me? I'm in the process of losing another job because I cannot function, keep food down, etc. I'm so frustrated with the surgeon and medical professions telling me you just have sibo, or you're not eating per plan. Yes, I have managed to gain weight, not lose, but the only foods I can keep down are soft, slider foods. I should just stop eating completely, but then the throat burning becomes almost unbearable.

Sorry to ask for so much help, but if anyone can give me so advice, I would really appreciate it.

Thanks.

 

[JackieOnLine]

oh, wow, that's terrible. I'm sorry you are going through this and the smart people will be here soon with advice.

I'm in the process of losing another job

what do you do? have you tried getting a medical leave? do you have health insurance?

 

[Larra]

I've heard of a micro pouch, can't speak from personal experience obviously (I have a DS, not gastric bypass of any kind) but it does sound like that's what you have. What strikes me as odd, and worrisome (again without definite knowledge about this) is that you are having so much trouble with heartburn. Of all the comorbidities that MO people often have, the one and only one that gastric bypass is better at resolving than the DS is GERD.
Given that (it sounds like) your small intestine is attached almost to your esophagus, I'm wondering if you are having bile reflux, i.e. small bowel fluid coming up to your esophagus. If that is the case, antacids won't help, because bile is a base, not an acid. But I would think the GI doc would have seen evidence of this on your upper endoscopy. So I'm confused.
I would recommend, in addition to getting all your medical records, asking the surgeon directly, did you do a micro pouch, and if so, why, and why wasn't this discussed with me before hand. And what do we do about the intractable problems I'm having. That last question I'm not sure about as I don't know how long it's been since your surgery, and sometimes people do have problems for awhile that eventually resolve with time. But I'd still ask.

 

[Munchkin]

1 cm. Here is what that looks like. https://www.google.com/search?q=1+c...qKtrnVAhVExlQKHbKmDeIQsAQIMQ&biw=1920&bih=950

Maybe your pouch could expand to the size of a ping pong ball. Maybe. Try getting one and comparing it to your servings of food. You wouldn't be able to eat much. Maybe 2 bites. Under the best of conditions I would find that very hard to deal with.

And I would be doing what Larra suggests to start!

 

[writegirl]

Wow. I can't believe any surgeon would give a patient a 1 cm pouch without some deep medical need to do so--like some underlying reason. I sure hope that there is some misinformation on your documents. As Larra said, confront your surgeon to see if you can get some answers and a plan to relieve your issues. If not, you may want to seek another surgeon to see if there is some remedy through revision. I am so sorry you are going through this!

 

[annabellarose77]

Thank you all for your replies. I got my records from the hospital, but nothing new compared to what I already have. I did contact my surgeon's office as well. Have to wait and see if he calls me back tomorrow. The GI doctor who did my last upper scope didn't take any measurements, but I'm having another scope this Friday by a different GI doctor who knows what to look for--at least I hope so. I'm making notes for him and plan to make sure he gets measurements. I'm in so much pain right now from just taking a few bites of chicken that I just want to curl up in a ball and die. It's obvious I'm going to need a revision of some kind if the pouch really is that small. It's so hard to believe he would do that, but I have it in his own words.

I've tried to contact different surgeons in my area and none of them will take me as a patient because they didn't do my surgery. Dr. Boyce looked at my op report and said he didn't see any need for a revision so I don't know where to go next. I would love to go to Dr. K, but I cannot afford the $4000 program fee right now.

@JackieOnLine-- I just started a new job a couple of months ago so I don't qualify for FMLA yet. They have been working with me to this point, but if I need additional surgery, I don't know if they will keep me.

 

[hilary1617]

All I can say is that I'm sorry you are suffering and I hope a means to resolution is found soon. Hang in there!

 

[annabellarose77]

All I can say is that I'm sorry you are suffering and I hope a means to resolution is found soon. Hang in there!

Thank you!

 

[annabellarose77]

I've heard of a micro pouch, can't speak from personal experience obviously (I have a DS, not gastric bypass of any kind) but it does sound like that's what you have. What strikes me as odd, and worrisome (again without definite knowledge about this) is that you are having so much trouble with heartburn. Of all the comorbidities that MO people often have, the one and only one that gastric bypass is better at resolving than the DS is GERD.
Given that (it sounds like) your small intestine is attached almost to your esophagus, I'm wondering if you are having bile reflux, i.e. small bowel fluid coming up to your esophagus. If that is the case, antacids won't help, because bile is a base, not an acid. But I would think the GI doc would have seen evidence of this on your upper endoscopy. So I'm confused.
I would recommend, in addition to getting all your medical records, asking the surgeon directly, did you do a micro pouch, and if so, why, and why wasn't this discussed with me before hand. And what do we do about the intractable problems I'm having. That last question I'm not sure about as I don't know how long it's been since your surgery, and sometimes people do have problems for awhile that eventually resolve with time. But I'd still ask.

Thanks Larra for this information. I'm going to bring it up with the GI doctor today before he does my upper scope tomorrow. I had my surgery June 30th 2015 and lost from 331 to 239. I have had problems since two weeks out of surgery and was on a PICC for 2 months. The surgeon said nothing was wrong with the surgery that it is me, and that's what he keeps saying. I know I haven't been 100% complaint, but it's been very frustrating to not be able to eat. I get to the point that I know I'm going to be sick regardless of what I do, so what does it matter anymore. I know that's a horrible attitude and I need to work harder, but I cannot help but feel my surgeon set me up for failure. I'm going to reach out to a few of the RNY to DS revision surgeons listed on this board that have been vetted to see if anything can be done. I hope I can get a revision to a DS which is the surgery I was suppose to have in the beginning anyway, but he cancelled it. Kind of glad though because now I'm not sure if I would trust him to put a band aid on me.

Thanks again for your informative response.

 

[Larra]

@annabellarose77 please don't be hard on yourself as to your attitude, or for not being perfect with your diet. Being chronically ill wears on a person, regardless of what the illness is, and your surgery was 2 years ago and you've been chronically ill almost the whole time. Pain will wear on you as well.
I hope the next GI doc will give you some definitive answers so you know best how to move forward. Request both the report and also photos - any potential revision surgeon, whether for DS or other revision, will want them.
Also, I realize that 4K is a lot of money, especially for someone who has been ill and out of work, but consider borrowing from family or other means, whatever it takes to gather up enough money to get the best of care. Think outside the box about any and all financial resources. You need, and deserve, the best.

 

[annabellarose77]

Thank you for the kind words Larra. I feel like a complete failure right now. My surgeon has yet to return my calls, but hopefully I will at least get some measurements tomorrow during the upper scope. I got a phone consult scheduled with Dr. Ayoola for August 22nd and he does take my insurance. The lady I spoke with didn't think there would be much difficulty getting approved. I'm just hoping he will take me as a patient for a RNY to DS conversion. I don't know how much the out of pocket cost will be, or if there is a program fee. She said that would all be discussed during the phone consult. So I'm praying for good news, and way out of this mess I've gotten myself into. My family feels like my previous surgeon should fix the mess he created, and I guess he should. He has done a few virgin DS's but I don't think he's capable of doing a revision, nor would I trust him to. I don't think I can trust him to do anything at this point. Not even to fix the gastric pouch. I really don't know what my options are with him since he hasn't returned my calls. I do know that if I get confirmation that this pouch is only 1 cm--I never agreed to that. I never knew that a pouch could be so small. In all of the Center's literature and in the Gastric Bypass Manual they give out--it states the pouch will be the size of an egg. So, something is not right. Either his records are wrong, or he decided to play God and give me the pouch size he wanted. All I wanted was to be healthy. I'm grateful for the weight I have lost, but this is no way to live. It's not what I signed up for.

 

[Munchkin]

Back up just a second. You said you signed up for a DS. And 'he' canceled it. He who and what happened?

 

[annabellarose77]

Hugh Houston at Centennial in Nashville, TN. I did all my research and knew the DS was best for me. When I had my consult with him--he grilled me on it then said I knew the facts so he agreed to do the DS. Fast forward to less than a week before my surgery was scheduled--he called to tell me he hurt his knee in a skiing accident and could not stand long enough in the operating room to do the DS. They were suppose to get back with me to reschedule and they never did. I called numerous times and his office manager, Holly, never returned my calls. I had completed all the pre-op stuff and he was the only surgeon near me that did the DS so I didn't want to change surgeons. Looking back--big mistake. Anyway, I called the program director at Centennial and then Houston called me and just made excuses for Holly not getting back with me. He said he could do the DS but it would be another 4-6 months to get it on the books because he was going on another vacation. I was suppose to go back to nursing school and I needed to get my surgery done so I could have enough recovery time. But he said if I agreed to do the Gastric Bypass, he could get me scheduled in the next couple of weeks. He told me I would be much better off going this route--less complications etc. Being stupid, and feeling like I was out of options, I agreed. My problem is I don't have anyone who can drive me out of the area, and at the time, no income coming in. So I really felt like I didn't have any options. I realize now I should have waited, or better yet, saved up money and went to a much more qualified surgeon to get the surgery I wanted. That's one of the reasons I feel so stupid and like a failure.

 

[Settledownnow]

Thank you for the kind words Larra. I feel like a complete failure right now. My surgeon has yet to return my calls, but hopefully I will at least get some measurements tomorrow during the upper scope. I got a phone consult scheduled with Dr. Ayoola for August 22nd and he does take my insurance. The lady I spoke with didn't think there would be much difficulty getting approved. I'm just hoping he will take me as a patient for a RNY to DS conversion. I don't know how much the out of pocket cost will be, or if there is a program fee. She said that would all be discussed during the phone consult. So I'm praying for good news, and way out of this mess I've gotten myself into. My family feels like my previous surgeon should fix the mess he created, and I guess he should. He has done a few virgin DS's but I don't think he's capable of doing a revision, nor would I trust him to. I don't think I can trust him to do anything at this point. Not even to fix the gastric pouch. I really don't know what my options are with him since he hasn't returned my calls. I do know that if I get confirmation that this pouch is only 1 cm--I never agreed to that. I never knew that a pouch could be so small. In all of the Center's literature and in the Gastric Bypass Manual they give out--it states the pouch will be the size of an egg. So, something is not right. Either his records are wrong, or he decided to play God and give me the pouch size he wanted. All I wanted was to be healthy. I'm grateful for the weight I have lost, but this is no way to live. It's not what I signed up for.

No, the unresponsible and unprofessional surgeon who created the mess cannot fix it. Do not even allow him near you. Go see Ayoola.
August 22 will be here before you know it.

I remember @Whit posted that she had an RNY micropouch prior to conversion to a DS. Maybe she can chime in here.

 

[Munchkin]

Hugh Houston at Centennial in Nashville, TN. I did all my research and knew the DS was best for me. When I had my consult with him--he grilled me on it then said I knew the facts so he agreed to do the DS. Fast forward to less than a week before my surgery was scheduled--he called to tell me he hurt his knee in a skiing accident and could not stand long enough in the operating room to do the DS. They were suppose to get back with me to reschedule and they never did. I called numerous times and his office manager, Holly, never returned my calls. I had completed all the pre-op stuff and he was the only surgeon near me that did the DS so I didn't want to change surgeons. Looking back--big mistake. Anyway, I called the program director at Centennial and then Houston called me and just made excuses for Holly not getting back with me. He said he could do the DS but it would be another 4-6 months to get it on the books because he was going on another vacation. I was suppose to go back to nursing school and I needed to get my surgery done so I could have enough recovery time. But he said if I agreed to do the Gastric Bypass, he could get me scheduled in the next couple of weeks. He told me I would be much better off going this route--less complications etc. Being stupid, and feeling like I was out of options, I agreed. My problem is I don't have anyone who can drive me out of the area, and at the time, no income coming in. So I really felt like I didn't have any options. I realize now I should have waited, or better yet, saved up money and went to a much more qualified surgeon to get the surgery I wanted. That's one of the reasons I feel so stupid and like a failure.

That sucks. You trusted this guy to do right by you and he didn't. I can't even tell you how many times I have heard versions of this same story. We even have a name for it. Bait and don't switch. Don't ever let this guy come near you with a scalpel again! Yes, you should have waited, but he sold you a bill of goods.