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Hi I’m hoping to get some answers or find out if anybody else has had these issues. My boy friend has chronic severe pain issues in his abdomen. He’s had endoscopy and colonoscopy and nothing has ever come up as a culprit. We are hoping to get the pill cam done , that’s one thing he’s never had done and it would look at the small intestine, he’s suffered for ten years now, he’s medically released on disability with the army because of this. This pain makes him unable to have a job, the pain comes often with eating. It’ll hurt so bad he throws up, and that can happen for days at A time all day once it’s activated. We’ve tried avoiding certain foods but have realized it’s not food related and he did a stomach emptying study so we know it’s not his stomach ( actually want the gi to explain better to us) but we have no answers. He’s lost 30 lbs recently cause he’s scared to eat anything and half the time throws it back up. This has caused severe mental distress in him since it’s been ongoing several years, he’s now been diagnosed schizophrenia just this year. I truly believe it’s cause of the constant trauma he’s in with his abdomen pain, and a recent custody battle where his toddler no longer lives in the same state. We keep going in circles with doctors and being a veteran that system is very broken ( for instance he’s been waiting for a colonoscopy since last summer , it kept getting rescheduled until March) and his Va primary left so he’s been trying to get help for pain but now he’s waiting for a new doctor and they schedule several months out. So he finally broke out the Va system for a new gi doctor and we’re doing the steps but he needs help now. He is pale, shrinking, and I’ve noticed his teeth look yellow, I think from throwing up so much bile:( it’s terrible to witness and I feel like I’m watching somebody die. His only relief for pain is a heating pack so he’s used this one that you microwave. The stomach pain is so severe he has burned his skin with the heating pad and now that’s a problem, he has burns on his stomach and back where he puts the pad but he says he doesn’t even notice it over the abdomen pain. We’ve recently got him a new electric one but he says it doesn’t get hot enough. I’ve taken him to the hospital 6 times or so to get him fluids and I’ve seen him be on delauted, morphine and oxy app at once, still with a pain scale 7. What can this be? And no he’s not on opioids, he’s afraid to even take Advil cause it hurts his stomach. He says whatever this feeling is, it feels better to throw up and try to push this feeling out. He says he feels a pop in his lower abdomen. A couple times he’s been given oxy to go home with but we want a fix, not more drugs. Sometimes he gets treated like he’s drug seeking and in reality the last thing he wants to do is go to the hospital. So basically he needs an advocate with him every time. He flared January and it’s been really nonstop lately where he basically lives in a hot bath all day or under the heating pad. I’ve seen him go from perfectly normal havinga good day at the lake to throwing up as soon as he eats something. And he’ll sweat through his whole outfit in this pain response. What can this be??? 🙁 please any help.

This started for him close to ten years ago. He’ll flare up. When we first started dating it wasn’t present for the first 4 months. And I remember it would be very random, we’d have a great day at the lake and then we go to eat and he’s throwing up. He has had Covid but I’m not sure if that has exasperated anything…e we are really hoping to get this pillcam done for him but there’s always so much red tape. But it’s the one scope he hasn’t had done and it’s his lower abdomen that hurts so I really hope they agree they need to try something new 🙁

Hi I’m hoping to get some answers or find out if anybody else has had these issues. My boy friend has chronic severe pain issues in his abdomen. He’s had endoscopy and colonoscopy and nothing has ever come up as a culprit. We are hoping to get the pill cam done , that’s one thing he’s never had done and it would look at the small intestine, he’s suffered for ten years now, he’s medically released on disability with the army because of this. This pain makes him unable to have a job, the pain comes often with eating. It’ll hurt so bad he throws up, and that can happen for days at A time all day once it’s activated. We’ve tried avoiding certain foods but have realized it’s not food related and he did a stomach emptying study so we know it’s not his stomach ( actually want the gi to explain better to us) but we have no answers. He’s lost 30 lbs recently cause he’s scared to eat anything and half the time throws it back up. This has caused severe mental distress in him since it’s been ongoing several years, he’s now been diagnosed schizophrenia just this year. I truly believe it’s cause of the constant trauma he’s in with his abdomen pain, and a recent custody battle where his toddler no longer lives in the same state. We keep going in circles with doctors and being a veteran that system is very broken ( for instance he’s been waiting for a colonoscopy since last summer , it kept getting rescheduled until March) and his Va primary left so he’s been trying to get help for pain but now he’s waiting for a new doctor and they schedule several months out. So he finally broke out the Va system for a new gi doctor and we’re doing the steps but he needs help now. He is pale, shrinking, and I’ve noticed his teeth look yellow, I think from throwing up so much bile:( it’s terrible to witness and I feel like I’m watching somebody die. His only relief for pain is a heating pack so he’s used this one that you microwave. The stomach pain is so severe he has burned his skin with the heating pad and now that’s a problem, he has burns on his stomach and back where he puts the pad but he says he doesn’t even notice it over the abdomen pain. We’ve recently got him a new electric one but he says it doesn’t get hot enough. I’ve taken him to the hospital 6 times or so to get him fluids and I’ve seen him be on delauted, morphine and oxy app at once, still with a pain scale 7. What can this be? And no he’s not on opioids, he’s afraid to even take Advil cause it hurts his stomach. He says whatever this feeling is, it feels better to throw up and try to push this feeling out. He says he feels a pop in his lower abdomen. A couple times he’s been given oxy to go home with but we want a fix, not more drugs. Sometimes he gets treated like he’s drug seeking and in reality the last thing he wants to do is go to the hospital. So basically he needs an advocate with him every time. He flared January and it’s been really nonstop lately where he basically lives in a hot bath all day or under the heating pad. I’ve seen him go from perfectly normal havinga good day at the lake to throwing up as soon as he eats something. And he’ll sweat through his whole outfit in this pain response. What can this be??? 🙁 please any help.

I have had genetic testing for Celiac Disease. Being gluten and lactose free for quite a few years, has been a real help. Recently I have been dx with silent reflux, laryngealesophogeal GERD, which limits my diet further. It beats dealing with reflux. It sounds like you both may have to do your experimenting diet wise like introduce one food at a time until you hopefully find something that's doesn't cause a bad reaction. I am sorry for what you both are dealing with. It isn't easy I know. Prayers for healing going up.

@nicolemramirez
Has your boyfriend gone to a dermatologist to ask what could be done to treat his skin on his stomach and back? It looks like his skin is burned and may need special treatment. I don’t think the heating pad is a good idea because heat would not help GI issues. Abdominal pain is below the skin surface and does not seem to be tied to muscle soreness in his abdomen if he gets pain after eating. Heat on surface skin would not help his stomach, gallbladder or intestines.

@nicolemramirez
Has your boyfriend had bloodwork and ultrasound or CT done by his gastroenterologist? Has he had a HIDA scan of his liver and gallbladder to check how it is functioning? I had endoscopy which showed esophagitis and gastritis so they put me in omeprazole. This was due to taking too many NSAID pain relievers for too long. The HIDA scan showed my gallbladder wasn’t functioning (biliary dyskinesia). This can cause pain across abdomen under rib cage from stomach on left to liver on right. This pain can be triggered after eating. Has your boyfriend had his gallbladder checked (gallstones or dysfunction) or did he have it already removed?

He’s been told that he doesn’t have celiac disease:/ and really it’s basically any food. We’ve tried to eliminate stuff but the gi doctor told him it’s not lactose for sure. I’m gluten free myself and I might get arthritic but this is way worse. Today I got him out biking to have fun and he was afraid to eat breakfast but we did a smoothie at the park and he was dying by the time we got home. A friend of his came over and we realized he missed a call from the neurologist. One major other component is that he had a arachnoid cyst on his brain and he’s had several migraine and nerve type issues there but they have told him 4 different times that they wouldn’t drain it. The missed callers said they had some report saying he had extra cranial pressure and some other stuff they want to address and do some sort of procedure. I feel like this was a hopeful call and he’s calling Monday to hopefully get scheduled. I went with him to a neurosurgeon in Nov to talk about the obvious symptoms he’s having and there’s actually so many articles of ppl with this specific cyst to have mania. Paranoid psychosis. I shared with them and still they have made us go in circles ( this was an out of the Va neuro) but the Va has circled back this time. This is seriously ridiculously way too hard and it’s so unfair to our veterans. I thought before that maybe the cyst was it all, and I’m really hoping it’s the answer after all. His friend is in medical insurance for veterans so he’s going to start going with his to doctors appointments to hopefully get shit done😢
Thank you for your support. How amazing would it be if eliminating the cyst it would go away. The doctors can’t find anything in his gi system so it does seem logical!!

@nicolemramirez
It is good that you are getting help with the arachnoid cyst. That may be the source of the nausea and vomiting. The HIDA scan may not be helpful if your boyfriend already had his gallbladder removed and has the brain cyst causing symptoms.

Read the following about heating pad type burns. It can increase risk for certain skin cancers and would be good to stop using since the cause is neurological and not necessarily caused by something wrong in his GI system. He may want to try burn creams, Salonpas Lidocaine pain patches or capsaicin creams if he has any nerve pain on his skin.

Praying for answers and treatment for his cyst. That seems the most urgent issue to address to prevent further damage to his brain/body.

Hello, my name is Danielle & I've had CRPS in my right foot & leg from an injury since 2007. It stayed contained, and while very painful at times, was manageable. About 18 months ago I started having odd symptoms & pains & it spread up my right side, into my shoulder, my upper right back & now across to my left shoulder. My lungs are also effected & I believe other things but the Dr's. don't know anything about it so I don't really have any answers. There are days touching my 9yr old are almost impossible. I can't lay or sit. It's actually less painful to be up & moving which is mentally taxing because there is no break, no getting away from, no relaxing. It's been incredibly hard but I'm learning I have to be my own advocate & fight for answers & help. Finding support in people who understand has been helpful. Thank you for listening🧡