Suffering from ulcers and chronic pain, help!

[Prayingforbetter 2]

Hey there WLS family,

Back in 2017 I had a sleeve done and then a roux-n-y conversion due to severe acid I was dealing with due to the sleeve.
Since then I’ve dealt with ulcers every single year since. No matter the medications I’m on they always come back and they have left me in the hospital from just a couple of weeks to even 3-4 months on feeding tubes, and hydromorphone for the pain. Last year was probably the scariest of all the years as my ulcer began bleeding and left me have to get a transfusion only a week after being discharged and told I didn’t have any more ulcers.

Due to these ulcers, I’ve been on long term disability now for two years. I’ve been sober for almost two years, which includes no coffee as well just in case as they said alcohol and foods and drinks that are acidic can make matters worse. Alas nothing has helped.

The bariatric doctors I have here in Canada remind me constantly that they are the best in Canada and that there’s not a single thing they can do and I’ll just have to live like this, for the rest of my life. The nurses constantly remind me that this isn't new and the amount of people that have complications is actually pretty high (at least in our area) and that they hate seeing people come in and be dismissed. Being only 27 it scares the **** out of me, the idea of being in pain and on a daily dose of ppis (prevacid), hydromorphone (dilaudid), and sulcralfate. I’ve always wanted to have children and carry one and now I feel like I’ll never be well enough to carry my own child.

I’m writing this because something in me says maybe someone has dealt with these issues, maybe your doctors came up with a better plan that allows you to live a more fulfilling life. Maybe you’re on medications that are actually helping. After begging these doctors to send me for a second opinion as they told me there’s nothing they can do to help me, it ended up taking the second opinion doctor four months to get back to me. That phone call he made sure to remind me I already saw the best of the best, and that I shouldn’t expect him to find anything or this situation with him to be the panacea. All his words. I broke down on the phone call not expecting a doctor to tell me that since I already saw those doctors, who have missed things in the past, that he will likely be of no help to me whatsoever. It’s left me depressed and defeated.

If you’re someone who has dealt with this in the severe case I have and you’re doing much better or you’ve been given drugs that actually work, had procedures that actually worked, anything, please reply on this or send me a personal message.

I can’t live like this anymore. No one deserves to live like this and I won’t take their “‘there’s nothing more we can do for you” as the be all end all.

By no means to scare anyone but complications do happen and they should also be considered upon choosing wls.

[The Greater Fool 2,072]

Welcome to the forums.

Wow, aren't you having a rough time.

First of all, don't give up. You can't give up. It's up to you to take care of you and advocate for you. You need to be the squeaky wheel.

Stop going to the Docs telling you to live with it. I can't believe any doctor would say this. It seems they are more focused on not being blamed than fixing the problem(s).

Find new Docs that will work to figure this out. In fact, I would get a set of Docs that can review what has been done and how your surgeries may have contributed. A lot of new information has come out about ulcers in recent years. Make sure you get a Doc that is up on it.

I am not a Doc.

I believe there is a solution out there. You need to believe it too.

You may not be getting good results from the Dilaudid. It is time released and those don't always work so well for Bypass folks. It's a MAYBE thing, so if you feel it's working ignore this.

Did you have any of these issues before you had surgery? Where are the ulcers? Are they in the bypassed stomach? In the pouch? In the intestines? Educate yourself so you can challenge your Docs.

Look at any over the counter drugs you may be taking. Some OTC drugs contain things that might be problematic for Bypass folks. Such as NSAIDs. Look at OTC things that contain multiple ingredients, check each active ingredient. Check the side effects.

If you haven't started already, log your food and drink. Time, quantity, location, company, mental attitude. There may be a connection the Docs can make between your log and your symptoms.

Again, if you give up you can't find a solution. You must keep going, keep working at it, keep advocating for you. If you don't do it, who will?

Good luck,

Tek

[Prayingforbetter 2]

Thank you so much for that message honestly. It’s been pretty crappy I won’t lie and after talking to that last surgeon is really just left me feeling like a big pile of poop.

in terms of medications and whatnot I totally don’t mind sharing. The dilaudid Im currently on is the liquid version which I find super helpful but obviously it’s strong as hell and can lead to an addiction. I already know my body is addicted just based on what happens if I miss a dose (typical withdrawal symptoms.)

I don’t take anything over the counter anymore due to my fear of making them worse so I’ve been really big on just taking the medications they give me and praying they work.

I know that they have found the ulcers (usually on one or two at a time) in the stomach pouch near the incision site where they closed the stomach. I never used to deal with ulcers before surgery and they were why I actually had to get the bypass, the sleeve was creating far too much acid which was then leading to the ulcers forming.

Thank you so much for all of your advice. I’m for sure gonna start tracking my foods and moods as I continue forward. I do have a psychologist I see frequently and I’ve been working with her to help keep my stress low as that’s the only thing that I can say that’s not something that I have been taking too seriously compared to the diet changes, drinking, and even medication changes.

Your advice on educating myself is actually super smart and tomorrow I’m going to reach out to all my doctors and the hospitals and ask for their paperwork on everything from 2017 when I had the sleeve. Part of me feels like if I educate the hell out of myself I can poke holes in what they or saying or if another doctor throws his hands up and says “‘what tests do you want me to do, because I’ve done as much as I can” I might feel more comfortable actually holding them accountable and giving them a test request.

While Im exhausted and over this, you’re right, if I don’t advocate for myself and fight for my health no one else will. No one deserves to live this way and just because they don’t know how to deal with these issues today doesn’t mean they won’t be able to deal with them in the future.

Thanks again 💛

[RickM 1,753]

You have been through the wringer on this, so sorry you have had to go through it. I don't have any experience specific to this, but some maybe distantly related. I have seen that when they have an intransigent ulcer problem, classically it's around the anastomosis between the pouch and intestine, they usually just reverse the bypass, though that isn't really an option for you as that would put you back to your sleeve, which implicitly may not have been that well done in the first place.

By reputation, I would try to seek a second opinion with Dr. Michel Gagner, who I believe has a presence in Toronto. He was one of the early adopters of the duodenal switch back in New York and has done some fairly complex revisions (such as RNY to DS) so is familiar with more complex problems.

As to "done as much as we can" there is more that can be done. The most extreme thing would be a total gastrectomy, which isn't all that far from where you are now with an RNY, and is done in some cases of gastric cancer or gastroparesis. Basically they remove the remainder of the stomach and hook up the esophagus directly to the intestine, where your pouch is now. or close to it. Between surgery and adaptation, they form a new pouch in the intestine. Surgically, it is a bigger deal than it sounds as they don't like attaching the esophagus to anything other than itself (you would likely be on a feeding tube while it heals, but you've already been through that,) but it is a not uncommon configuration that people live well with (similar to your typical RNY lifestyle once everything heals.) Your average bariatric practice may or may not have the experience to do this, and you might have to go to a hospital that has a specialized gastric surgery department and/or cancer center.

Simpler than the above, I have seen reference to a few people who were having significant RNY ulcer problems, again in the typical anastomosis region, where they went in and moved the anastomosis down the intestine a bit farther to a fresh spot, so that might be an option depending upon circumstances.

Those are a couple of ideas that you can look into and question your docs about, and maybe seek out ones with a somewhat different specialty that may be able to help.

Good luck in working through this,