11 years post op and needing advice

Hello everyone. I had a route en y gastric bypass surgery in February of 2004. You could say that the surgery has been successful as far as weight loss is concerned as I have maintained a healthy weight of 130 pounds to date. However; I have suffered complications pretty much from the get go and instead of them getting better as years go on, they are getting much worse. I feel like just about every complication that they warn you about before surgery has happened to me. ALL of them! I have severe lactose intolerance, early and late dumping syndrome, hypoglycemia, multiple vitamin deficiencies (despite daily vitamin intake), medication intolerance, chronic nausea, chronic stomach pain, dehydration, and frequent unpredictable diarrhea. I am at my wits end. I have now developed a severe anxiety disorder with a fear of eating and taking medications. I am afraid to be out of reach of a toilet for any length of time and these complications are literally controlling my life. If I have to leave my home for any reason.. work, school, traveling etc. I will not eat. Not even a bite. Sometimes I may not eat until 7 or 8 p.m. when I am in the comforts of my own home. Hypoglycemia is severe at times as well and occurs whether I have eaten or not. Here in the past few weeks it has crashed almost daily and at times 2-3 times a day. In addition, because of severe medication reactions since the surgery, taking just a Tylenol for a minor headache is a huge and panicking ordeal. I can no longer keep living this way. I am miserable and I don't know what to do anymore. I have seen my original surgeon to discuss my issues and I'm always told that I must be doing something wrong either eating foods I shouldn't or eating too much or too quickly. I assure you this is not the case because I am not eating at all most days and still having symptoms. I guess I am just wondering if anyone else has experienced these types of complications and to this degree and if so what are you doing to control them???? I am desperate to get some relief and regain control of my life. Any suggestions are greatly appreciated. 

That is horrible. Sorry you are dealing with that. 

I had and still have some of the issues you describe

Hypoglycemia and severe reactive hypoglycemia , plus some other factors, like being tired, very low BP, etc, etc, made me look for a doc - endocrinologist, that can help me. It took me 2 years to find a right doc, and get diagnosed with adrenal insufficiency. My body does not make enough cortisol ~ steroid, and now i take that daily, a few times a day. that changed my life. But it was difficult to find a doc who would listen and run tests. Plus expensive, even with insurance. 

over the years i really with extreme gut pain. I didn't have runs, but i suffered from severe constipation and pain.  That could be described as IBS-C, while yours it is IBS-D. 

I am not sure why, and if low cortisol had anything to do with that, but over the years i developed food allergies and intolerances. It took me a while to get tested.  (And again cost $$$ and too find right doc)

But finding that i have allergies to dairy (not only lactose, but the proteins ~ whey, casein ) plus allergies to soy was my first clue. I had to comply eliminate those.  I did not show allergy to gluten ~ but i have severe intolerance, if i eat that, i may be in pain and discomfort for a couple of days after (for as long as tthat is in my gut, plus a day for my gut to stop being "angry")

Additionally running more blood tests for allergies indicated allergies to things like vanilla, pineapples, and a few more.  That again was $$$ plus tying to find a doc who knows what he she is talking about, was a challenge.

challenlastly

Lastly ~ i suspected that all my issues may be connected, and finally i think i found what may be hapoening to me ~ SIBO...(google that). 

That could explain most of my issues ~ IBS, vitamin mineral deficiencies, gut pains, food allergies, roseacea, even body pains and aches (Inflamation in the body).

Again, it took me time to find a doc who is current on that subject (new research is being done on that), and who wanted to help me. 

I take a lot of vitamins. And minerals. I get iron infusions if my ferritin drops below 30...i get weekly B12 shots. 

I take allergy pills ~ daiky, to help with some of my allergies. I had to drastically change my diet, avoiding foods i am allergic to plus foods that my gut hates (most foods from FODMAP list. Google that).

I avoid grains, raw veggies, dairy, soy, and most starchy vegetables, including root vegetables, beans. 

I avoid - limit my fruits. Berries are the only fruits i eat once in a while. 

What do i eat? Meat, fish, eggs, nuts, some cooked veggies, cucumbers, pickles, avocado, olives, ...cooked greens. 

There is still a lot of foods i can enjoy. 

Doing all of that gave me my life back.  I cook most of my foods, but i also have not a huge problem eating out. I travel, for business and pleasure. 

Google SIBO...and FODMAP...

iVit

Thank you so much for sharing your story with me. It does sound very similar to all of the problems I have been having. I will definitely look into SIBO and I think that allergy testing may be helpful to me as well. I certainly hope to find a good doctor that is both knowledgeable and willing to help me very soon! Again, thank you for taking the time to respond to my post. :)

Find another doctor, as soon as possible. When I had chronic nausea, vomiting and abdominal pain, it took two months of various tests and seeing different doctors before I finally found the doctor who ordered the one test I needed for an accurate diagnosis (it was my gallbladder). 

Unfortunately, some doctors just aren't that good. Many surgeons don't have a great bedside manner (although they may be good at surgery) or don't spend enough time with their patients. If your surgeon continually blows you off, you need to find a doctor who will work with you to try and find an answer. I hope you feel better.

Thank you for taking the time to respond to my post. I am currently searching for another doctor who will be willing to try and help me. So far that has proved to be a challenging task as not many doctors are willing to take on a patient that they did not operate on themselves. I am not going to let that discourage me though and will keep trying. :)

what do you eat on days that you DO eat?

My diet has become very limited recently. Even foods that I have considered to be "safe" for me to eat for years have now begun to make me sick as well. My diet mainly consists of eggs, grilled or baked chicken, lean beef, grilled pork, salads, and vegetables (green beans, cucumbers, squash). Even when I eat these foods I still frequently experience stomach upset and diarrhea so I allow myself to eat at least 2-3 hours before I have to leave my home for any reason. As you can imagine, having to do this makes going to work and attending my college classes very difficult so I just choose not to eat to avoid catastrophe. Of course not eating is making me very sick too. I just can't seem to find a solution and I am not sure what to do anymore. :(

Have your doctors ruled out CDIF?