Brandy36

Hi I posted earlier about celiac and pain etc... I am 5 years post-op RNY and for over a year have been searching for answers to my physical symptoms and have seen many specialists and my bariatric group to no avail. I am trying to pinpoint things as specifically as possible so that an answer or diagnosis can finally happen and wondered if I had any company out there with similar symptoms. After I eat, doesn't matter what but after I eat a meal I start feeling ill, not like stomachache but like a virus or actually kind of like a Mono kind of feeling. It starts with a low grade fever usually 99.5 and then it starts to go down. I'm not having a hot flash that I know if because no sweating is involved it's just a feeling of being ill. I usually get a headache along with this and sometimes my throat is sore or irritated. I'm usually fatigued most of the day and that's probably the most annoying part of all of this. I was tested for Lyme and Parvovirus and they were negative and for Epstein Barr and it's in my system but not active for whatever that's worth! Don't recall ever having mono but that's how it feels to me now. I've recently seen an allergist, negative, had a colonoscopy and endoscopy and they did find some irritations or ulcers in the lower intestine where it connects to the new pouch and biopsied six of them for cancer and Celiac and also with the blood test and that was negative. I've seen so many specialists, including hematologist, neurologists, and rheumatologist and nothing. I haven't seen an actually immunologist as of yet but am starting to feel like it must be some type of autoimmune disorder. I've felt like completely giving up as it's such a difficult thing to diagnose and some doctors have been wonderful but unfortunately when you see the bad ones they tend to stand out more and knock you down making you feel like an crazy menopausal hypochondriac which if it were all in my head right now put me away forever because life as it is now is not pleasant! Also having an autoimmune disorder mixed in with RNY must also make it more difficult to diagnose at least this is what I'm finding out, I'm just pooped out in all directions! Anyway anyone have or know of anything similar please let me know, Brandy.

Anyone diagnosed with celiac disease after they've had their RNY surgery?? I just had my endoscopy and colonoscopy to find out what could be causing my symptoms, low Iron, fatigue, headaches and upper abdomen pain and low grade fevers and they found six erosions in my jejunum when scoping my mall intestine. The doctor thinks it could be inflammation due to celiac disease which would cover all my symptoms and would be fairly easily treated. Anyone else experience this after they've had their RNY. It's been almost 5 years since I've had mine, thanks, Brandy.

I agree that mostly they are "surgeons" first and that's what they do best. Unless you deal with a group that has a lot of preop and postop support that's how it seems especially when something goes wrong that's not an obvious problem with your initial surgery. I am now learning that a lot of my issues have something to do with the supplement they have me take which I've stopped due to the pain and chronic constipation and making up my own with different Vitamins. So that's why I had a lot of pain in the upper ab area. Now my headaches and fatigue appear to be due to my CPAP and it's change in air pressure. Even though I'm 50 lbs lighter than I was when I got my machine I now need more pressure, thought surgery would eventually help to eliminate it but maybe it's not all due to "obesity" like they always seem to preach. If it's not making my symptoms better with a new machine and setting then maybe I'll search out a second opinion with a rheumatologist but for now I'm hoping that is all it is as I'm tired of the headaches and from being tired! Good luck to us all who suffer with things that can't easily be figured out!

It's French for the name of the procedure Roux en Y.

Hi M, I'm not sure what my next step is because although it's easy to find a hospital with a bariatric clinic to have a multitude of WLSs done trying to find info on reversals or "take downs" is not an easy task. I've watched videos on youtube where they physically do it. I've seen so many doctors who basically said "it's not in my field of expertise" and I'm going in circles also trying to figure this out. In the very beginning my primary and also a nurse said it could all be gastric bypass related but we never went into detail of how, when, what or why. This is what I need to do now is find the right person/doctor to talk to about the relationship of my symptoms and if the causes are to my RNY five years ago. I've also read that the stomach you don't use anymore could be harboring bacteria which is one of the reason it's in your body and your body's immune system is fighting that. So it's hard to pinpoint where it's all coming from. I think they can biopsy your stomach but there is a lot still I don't know. Other than myself my daughter also had this surgery and has had other issues and I have two nieces that had it so I worry about them too but they're all much younger than I am so maybe they won't have these problems God only hopes! Anyway I know it's not easy living what I call half a life or a painful one and even if I read about this possibly happening in my future I probably still would have been stupid enough to have the surgery! I think we all get pressured into it by society etc...and it's just the way our world is unfortunately! It just shouldn't be so difficult for us post-ops to get the treatment we need when we do have issues and not ignored by everyone or passed on to the next doc for them to figure us out. Anyway I hope the best for you and things work out and it's sad you have to wait so long for an appt. but that's part of the deal I've been facing here too! Take care, Brandy!

Thanks M! I'm going to read the link later it looks very interesting and what I was looking for. I just need to find a doctor now who can work with me to either figure this thing out as I did not go to medical school and figure out the next course of treatment for me. Sometimes I wonder if I just drank Water all day could would these symptoms go away and how long would I survive! I know it sounds silly but when you feel like crap all the time you start to feel somewhat desperate. Anyway I know it's not an easy thing for you to post this stuff as it goes against the grain but when we do have complications like this and I'm sure we're not the only ones we need to be able to get things fixed and be able to find a doctor that's not across the world to help us. Maybe with the amount of people getting WLS there will be a new field for those who can fix the people with all the complications afterward! Complications we never ever wanted or expected! Thanks again for all your help, Brandy!

Wow M, Sounds like you're getting much closer to this than any of the tons of doctors I've seen yet have! I just have a couple of questions of you don't mind when you get a chance. So I too revised from lapband but went to RNY and that is my final surgery as of now and don't plan on changing to a third but if I need something fixed I need to know and would want it done. So my first question was why 3 surgeries was the 3rd one to RNY due to the short bowel with leaky gut syndrome? Also who diagnosed you with this was it a different specialist other than your bariatric surgeon? I've read up on some of these stomach related autoimmune disorders and on leaky gut syndrome but mainly it was information pertaining to people who did not have gastric bypass or a DS etc...do you have any links to information that would relate the autoimmune disorders with the RNY or other WLSs? I've searched a lot on line and have read some interesting things but finding a doctor/specialist to deal with my issues and put it all together the fact that I could have some autoimmune disorder and the relationship to the RNY is really difficult to find to say the least! I don't know if it's because I'm in more of a rural area or if it's not something studied and possibly the bariatric people are kind of in denial and it's not really their forte to work with people like us. Also another question is what kind of symptoms were you having that lead to your diagnosis if you don't mind me asking? Every time I've seen a new specialist I get my hopes up thinking they will have the answer for me only to be let down. I'm getting my hopes up a bit now just after reading your post and it does make sense I just need to put more info together in order to search out the right person to help me in my area. Thanks again, Brandy!!

Hi Miss M, Actually in the first few years after my RNY I had a couple bouts of hypoglycemea so am familiar with how it feels and it is not the same but had considered that prior too. I think I need to look into autoimmune disorders and the relationship to the gut and RNY etc...thanks, Brandy.

Hi, Back after a few years but had RNY surgery in 6/09 and things had been fairly normal up until about a year ago when I started having bad fatigue, headaches and low grade fevers. Also ever since my RNY surgery have had chronic constipation due to my Iron supplements. In November I began having stomach pains. I went to my primary and to my bariatric group and was found to be somewhat low in iron but nothing too bad and they did an abdominal x-ray and found me to be full of stool. Due to the fatigue and headaches also saw eye doctor, ENT, pulmonologist, neurologist, allerigst, rheumatologist, hematologist, who gave me some iron fusions to see if they would help which they did not and then had a CT scan done of my abdominal region which showed a lesion on my liver and some cysts on my kidneys but they were not too concerned about those. Referred me to the gastroenterologist due to the fact I was 53 and still had not had my colonoscopy yet. The gastro people looked over my blood work and CT scan and ordered more scans of the liver to make sure it wasn't cancerous before they did my colonoscopy and also are going to do an endoscopy. They put me on a Fiber drink and two colace a day in order to help with the constipation. I still have two weeks until they do the colonoscopy/endoscopy but my stomach pains have gotten worse. It feels like a burning sensation in my upper abdomen and I'm trying to prepare myself for whatever I have to face but not sure if it's RNY related, possibly some type of marginal ulcer or maybe something polyp related once they do my scope. I still get pain in my upper right side but my gallbladder was clear and so I don't know what is going on. Anyone have anything similar that they could share with me who has had their bypass for a couple of years now? Thanks in advance for your help! .

Thanks for the info I will look into it. Right now I'm experimenting with removing gluten and now dairy from my diet which is not easy for me but until I get a diagnosis from my doctor I might as well try something and see if it helps, take care, Brandy.

Wow I'm so sorry miss m I can't imagine having to go through all of that! I had the lap band before revising to bypass and have no clue what they'll be able to do to help me but just hearing your story and others I'm basically pretty scared right now. Anyway wish you the best and hope somehow things will get better for you. Maybe they'll develop a new specialty for gastric bypass complications god knows they'll make enough $$$$ from that too!

Wow very informative and it really helps the people who are having complications to know others are having them also. The thought of having to revise to another surgery is not something I am willing to do. When you are basically a newbie you never want to think these things could happen to you that's just normal and let's hope it never does but these things happen to people who follow the rules so don't fool yourself into thinking otherwise. Also nots everyone who is suffering with this basic feeling of not thriving are not all underweight. You can have this and still not be at goal as most bypass patients do gain back a percentage of their weight back it's just normal. Having chronic fatigue and daily multiple headaches and stomach pain and fevers are not what I expected after 3.5 years post op but it is now my reality Good luck to all of us who now suffer with complications, brandy

Miss m, Thanks for all your information. I see my gastroenterologist on the 17th and will see if he has any more of an actual prognosis for me. My fatigue is really the worst side effect for me because I feel like only half a person! I suppose the fortunate part is my 2 daughters are 25 and 29 and if they had been younger my mother guilt would be horrible right now. This doctor is not my bariatric surgeon and I get the impression from them that they did their part and unless something is wrong with the staple line or I need a revision or reversal then it's out of their hands. Do you see a new doctor for your gastric complications or are you still treated by your bariatric surgeon? Those that have not suffered these types of complications I have a feeling are in denial that it could happen to them also. I followed all the rules and take my Vitamins and supplements daily and was always a healthy person except for the extra weight. This was not a side effect(s) I was even expecting and like you said and others before you the doctors are not equipped to fix these problems. I've seen so many doctors starting with my primary and then going back to my bariatric group twice before they shipped me off to other specialist of which I've seen just about as many as I can think of and the majority of them point a finger at my bypass surgery! I seriously am worried that I may have to get a reversal but I just can't imagine going through that as well as worry if it would even work but I also know that I cannot live my life out like this as a 53 year old woman who feels like she's. Slowly dying! So thanks for your info I will look it all up and ask my doctor what he thinks. I hope we can all recover from this, brandy!

I've also heard of the intestinal twisting and since you've had your gallbladder out you'll probably need to look into your issues more also. I kind of jumped on the bandwagon when the doctor said it could be celiac disease thinking there's finally an answer to my probs so I bought a bunch of gluten free foods thinking that would make a change in how I felt and so far not! I need to continue my patience and wait till I see the results of my biopsies with the intestinal ulcers etc... I also have a question about the stomach that is not functioning anymore and if there could be an issue there considering they can't scope there. The staple line looked good but what is going on past the staple line. I need a doctor like House who would be able to figure me out after an hour show. Good luck with your health too, Brandy.

I am still very new to this and am awaiting my actual diagnosis. Have been feelng very ill for over a year now and have had many blood tests and scans and have seen a variety of specialists. My sypmtoms have been overwhelming fatigue which Iron fusions did nothing for, daily multiple headaches, not migraines, upper abdomen pain and especially on the right side but doesn't seem to be as debilitating as your pain, low grade fevers every day and basically feel ill and like I'm aging much faster than I should be. I'm 53 and feel like I'm 83! I also have hypothyroidism but that seems to be fine due to my synthroid. I have a lesion on my liver but it's small so they're just keeping a watch on it for now every 6 months. I have/had GERD so they did an endoscopy as well as my almost 4 years late colonoscopy on Friday. That is when they removed a small polyp in my colon but don't think it's anything and found erosions in my small intestine six of which they are biopsying now so I won't find out for 10 days what's up with those. This is all new to me now and didn't even know that erosions were "staged" and what the staging represents. The only thing he could tell me was that it appeared to be inflammation and maybe due to Celiac disease. I've felt so ill for so long at this point I'm ready to give up gluten if that will help even though they don't know for sure yet. I'm that desperate to feel better. So many of my symptoms mimic other illnesses and it takes so long to figure out what is wrong and it's very frustrating. I suppose having RNY in the mix just seems to complicate things also and makes it even harder for doctors to diagnose you. Also I'm not sure if RNY may have set off whatever illness I am having now and celiac from what I've read also contributes to malabsorption of nutrients which is normal with RNY even if you take the supplements and Vitamins they tell you to take. I know there are blood tests to tell if you have celiac, just make sure you find the right specialist and make sure it's also not your gallbladder if you still have yours. I still have mine but it appeared fin on all my scans and I've had a lot! Also did they biopsy your intestine spots and give you any info on them. Hope you are doing better and keep us all posted if you find out anything as I will too, Brandy.

Sorry you too are having issues. I suffered with GERD and was on meds for that but bariatric people took me off of it because it messes with your Calcium absorption. So I have no clue what is going on inside me until they do the endoscopy and the colonoscopy in less than two weeks. Sometimes I think getting no news is not always better than bad news. Possibly the trouble is that the bariatric surgeons are good at surgery but not so good with followup issues that can affect a variety of different parts of our body once something as drastic as RNY surgery has been done. I'm hearing from different doctors that there isn't enough info out there on our health afterward and what we've done with this rewiring can be doing more harm than we initially thought. We all had this surgery for the same reasons and were pretty desperate to have it done but it's a crap shoot as to who will have problems and when. So good luck to all of us, I have three other relatives who have also gone through this surgery and so far it seems the younger the patient the fewer the problems so maybe they don't show their ugly head until we hit a certain age. Thanks for your response.

I had that pain but it was within 2weeks of having my rny. Turns out my gallbladder had to come out. I never had any trouble with my gallbladder before. Once it came out i was better. But I'm Murphy's granddaughter and whatever can go wrong did. Well the consensus here is it's my gallbladder but I still don't think so but I will let you all know after my "scopes" what turns up, lol. They used to take out the gallbladders here when they did RNY surgery but then stopped. I wouldn't worry about being Murphy's granddaughter "shite" happens to all of us! Take care and thanks for your help!

I first had a CT scan with contrast of my chest-pelvic region and in that report it said that the "gallbladder was seen and no gallstones". Due to the small mass on my liver they did an ultrasound and then a liver blood pool scan. During the ultrasound they also said that there were no stones or sludge. I tend to have most of the pain in the early morning on an empty stomach. Also due to my chronic constipation that may be partially the cause. My daughter and a few other family members have had to have gallbladders removed and I remember the pain was much more consistent and worse than what I am experiencing. If nothing is discovered during my scopes I will have to keep on searching for other things but I'm very tired of this whole thing and pray that they figure me out by then! Thanks for your help!

Thanks for your response, I think because of the scans I've had done they didn't see anything on the gallbladder and due to the liver lesion they seemed to concentrate on that. But I'm hoping with the colonoscopy and the endoscopy they'll finally figure out my issues. The fatigue is the worse of my symptoms and worrisome too because I think of cancer since everything else has been checked. I'll keep you all posted and thanks again!