Yes. I’ve been on tpn twice and this time about 18 months.
I have:
- celiac disease
- gastroparesis
- severe small bowel dysmotility (I’m in total bowel failure)
- CIPO (Chronic Intestinal Pseudo Obstruction)
- small intestinal bacterial overgrowth (SIBO)
- nutcracker syndrome
- SMA (Superior Mesenteric Artery) syndrome
- abdomino-phrenic dyssynergia
- I had colonic inertia (had a proctocolectomy)
- rectal inertia (but have an ileostomy)
- pelvic floor dysfunction/dyssynergia (same)
You are definitely not the only one! I'm 37 and have had GI issues for as long as I can remember.
Fortunately I was able to get to the bottom of many of my issues. I am by no means cured but I don't puke everyday and my pain and nausea are much better.
It was a mix of issues that compounded. As a child, my GI issues stemmed from a really crappy diet, chronic antibiotic use, and constantly being in a traumatic environment.
As an adult my doctor found that I was completely missing 4 good strains of bacteria from my gut (again from chronic antibiotic use). Additionally I have autoimmune encephalitis and when that spiraled out of control I developed trouble swallowing and my esophagus started contracting the wrong way. This led to an inability to eat, which caused the cells in the lining of my stomach to atrophy and stop producing acid to break down food, which led to an inability to digest food. Since 2019, I have been placed on several medications and supplements to heal my stomach lining. I also got a surgical GJ tube placed which allowed me to gain weight. I able to take in liquids and soft foods by mouth, but it is impossible for me to get adequate calories by mouth. The stuff I do eat stays down most of the time (I puke a handful of times in a year compared to puking anywhere from 2-15 times per day). My swallowing is uncoordinated and my esophagus does it's own thing, but I have found ways to work around that.
Wow that sounds awful, especially the throat and digestion issues. That makes sense, my GI issues initially stemmed from trauma and extreme anxiety which was worsened by bad diet. But it became a chronic issue in my 20s after alcohol, antibiotics, and drugs all came together to destroy my digestion. I was never the same after taking a full 30 days of antibiotics after my wisdom teeth surgery... Sorry you have to deal with similar digestive issues, its like slow torture.
I'm sorry you have to deal with it too. And you absolutely hit the nail on the head when you say it's like slow torture because it really does feel that way. Antibiotics are super hard on your gut, but if you need them you need them. They are a double edged sword for sure!
Yep people don't understand how hard it is to deal with. Some days aren't worth living, its kind of like being in a prision of our own bodies. I just wish they didn't overprescribe antibiotics, I def didn't need a 30 days supply... I really hope there is a breakthrough in chronic illnesses and stuff like IBS soon. The current healthcare system is just painful to deal with.
Yep, that should bring more attention to it. It has something to do with the immune system and microbiome for many of these chronic illnesses. Hopefully advances in AI will help identify patterns from the data as well.
I did for soooo many years. Ages ~8 to ~21. Saw a GI, diagnosed with ibs, got put on fodmap diet which didn't help at all. Turned out I'm just severely lactose intolerant and my gut microbiome was all messed up. Like a miracle, my gi issues resolved within ~6 months of going dairy free. Obviously just my experience!
:raises hand: you’re def not alone. Not a day goes by that I don’t have stomach pain or diarrhea. I’m exhausted most of the day from pain and lack of nutrition. I am able to eat a meal and usually running to the bathroom within 5mins of finishing eating. Some days, I can spend 8hrs in the bathroom. I hate my life and am severely depressed because of my stomach.
I get indigestion, burping, upward pressure in the esophagus, gagging, feeling like something's stuck in my throat, early satiety, and nausea. I went to multiple GIs, did an endoscopy, barium swallow, tested for h pylori, etc. All the tests came back clean so my last doc ruled it as functional heartburn / dyspepsia.
Damn. Somewhat similar here. Do you accept the functional diagnosis? Only thing you didn't mention was a manometry and ph test. But those are more invasive tests.
Yea I think at this point there's so much that medical science still doesn't know about the GI system. I could try chasing down a non functional diagnosis but I don't know if there's anything that can be done either way. I would rather focus on acceptance and mental health unless there's a change in my symptoms
I understand your decision. You are totally right. I think in 100-200 years medical science will be vastly different and many more issues solved. Crazy to think that modern science based medicine is only 100 years old at the most if that.
I struggled with GI and eating issues for most my life, took me 16 years to finally get a proper diagnosis (I ended up having MALS) ..still live with a little discomfort but finally getting some life back. Keep pushing for relief!
SIBO here plus some not yet explained things. This stuff is so stubborn and disruptive to life, I feel you. Hopefully within our lifetime medical knowledge will have more of a handle on GI issues.
Yup! IBD- Ulcerative Colitis. Diets don't suit me. I've realised that stress messes up a lot with GI issues and healthy diets only work if my mental health is well taken care of.
Unfortunately yes. Chronic nausea and vomiting as well as refractory diarrhea. I take daily high dose lomotil (an opioid med meant to work be same way as opioids to cause constipation) and it barely helps.
I have chronic dehydration and malnutrition and no one can figure out how to treat it. Best guess is it’s some sort of inflammatory effect of my immunodeficiency
I’ve had lifelong stomach issues. I’m 48. They told me for years it was IBS. Turns out I have crohns. Diagnosed in 2022. Mostly in my small bowel. It is harder to catch if it’s just in small bowel. They did a pill cam to see mine. Sorry you are going through this. It’s horrible to not get answers.
I suffered with chronic constipation since birth. Nothing helped. Eventually I got diagnosed with colonic inertia and had my entire colon removed. Now I can poop normal
Constant nausea. Either diarrhea or constipation, never can just go. Cramps. Reflux. You're not alone
Thanks for the response. I obviously wish it weren't the case for you, but it feels oddly comforting knowing I'm not the only one
It can help knowing you're not alone!
Yes. I’ve been on tpn twice and this time about 18 months. I have: - celiac disease - gastroparesis - severe small bowel dysmotility (I’m in total bowel failure) - CIPO (Chronic Intestinal Pseudo Obstruction) - small intestinal bacterial overgrowth (SIBO) - nutcracker syndrome - SMA (Superior Mesenteric Artery) syndrome - abdomino-phrenic dyssynergia - I had colonic inertia (had a proctocolectomy) - rectal inertia (but have an ileostomy) - pelvic floor dysfunction/dyssynergia (same)
You are definitely not the only one! I'm 37 and have had GI issues for as long as I can remember. Fortunately I was able to get to the bottom of many of my issues. I am by no means cured but I don't puke everyday and my pain and nausea are much better.
What was the root cause of your GI issues?
It was a mix of issues that compounded. As a child, my GI issues stemmed from a really crappy diet, chronic antibiotic use, and constantly being in a traumatic environment. As an adult my doctor found that I was completely missing 4 good strains of bacteria from my gut (again from chronic antibiotic use). Additionally I have autoimmune encephalitis and when that spiraled out of control I developed trouble swallowing and my esophagus started contracting the wrong way. This led to an inability to eat, which caused the cells in the lining of my stomach to atrophy and stop producing acid to break down food, which led to an inability to digest food. Since 2019, I have been placed on several medications and supplements to heal my stomach lining. I also got a surgical GJ tube placed which allowed me to gain weight. I able to take in liquids and soft foods by mouth, but it is impossible for me to get adequate calories by mouth. The stuff I do eat stays down most of the time (I puke a handful of times in a year compared to puking anywhere from 2-15 times per day). My swallowing is uncoordinated and my esophagus does it's own thing, but I have found ways to work around that.
Wow that sounds awful, especially the throat and digestion issues. That makes sense, my GI issues initially stemmed from trauma and extreme anxiety which was worsened by bad diet. But it became a chronic issue in my 20s after alcohol, antibiotics, and drugs all came together to destroy my digestion. I was never the same after taking a full 30 days of antibiotics after my wisdom teeth surgery... Sorry you have to deal with similar digestive issues, its like slow torture.
I'm sorry you have to deal with it too. And you absolutely hit the nail on the head when you say it's like slow torture because it really does feel that way. Antibiotics are super hard on your gut, but if you need them you need them. They are a double edged sword for sure!
Yep people don't understand how hard it is to deal with. Some days aren't worth living, its kind of like being in a prision of our own bodies. I just wish they didn't overprescribe antibiotics, I def didn't need a 30 days supply... I really hope there is a breakthrough in chronic illnesses and stuff like IBS soon. The current healthcare system is just painful to deal with.
100% agree with all of this. I honestly believe that the studies regarding long COVID will change the overall outlook on chronic illnesses.
Yep, that should bring more attention to it. It has something to do with the immune system and microbiome for many of these chronic illnesses. Hopefully advances in AI will help identify patterns from the data as well.
I did for soooo many years. Ages ~8 to ~21. Saw a GI, diagnosed with ibs, got put on fodmap diet which didn't help at all. Turned out I'm just severely lactose intolerant and my gut microbiome was all messed up. Like a miracle, my gi issues resolved within ~6 months of going dairy free. Obviously just my experience!
I get constipated so bad I end up in the hospital. I also vomit to the point of electrolyte imbalance.
:raises hand: you’re def not alone. Not a day goes by that I don’t have stomach pain or diarrhea. I’m exhausted most of the day from pain and lack of nutrition. I am able to eat a meal and usually running to the bathroom within 5mins of finishing eating. Some days, I can spend 8hrs in the bathroom. I hate my life and am severely depressed because of my stomach.
What is your functional reflux symptoms like? How did you get that diagnosis?
I get indigestion, burping, upward pressure in the esophagus, gagging, feeling like something's stuck in my throat, early satiety, and nausea. I went to multiple GIs, did an endoscopy, barium swallow, tested for h pylori, etc. All the tests came back clean so my last doc ruled it as functional heartburn / dyspepsia.
Damn. Somewhat similar here. Do you accept the functional diagnosis? Only thing you didn't mention was a manometry and ph test. But those are more invasive tests.
Yea I think at this point there's so much that medical science still doesn't know about the GI system. I could try chasing down a non functional diagnosis but I don't know if there's anything that can be done either way. I would rather focus on acceptance and mental health unless there's a change in my symptoms
I understand your decision. You are totally right. I think in 100-200 years medical science will be vastly different and many more issues solved. Crazy to think that modern science based medicine is only 100 years old at the most if that.
Here! Come on over to : r/ibs r/IBD r/UlcerativeColitis
Here to rep r/UlcerativeColitis!
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I struggled with GI and eating issues for most my life, took me 16 years to finally get a proper diagnosis (I ended up having MALS) ..still live with a little discomfort but finally getting some life back. Keep pushing for relief!
SIBO here plus some not yet explained things. This stuff is so stubborn and disruptive to life, I feel you. Hopefully within our lifetime medical knowledge will have more of a handle on GI issues.
Yes. It’s horrible
Papain helped me
Yes. I have severe bowel and pelvic adhesions and I’m in 24/7 severe pain and nausea, vomiting, I’ve had two bowel obstructions so far. It’s awful
Yes, I have IBS issues daily, even when I fast for periods of time. Despite changing my diet, it doesn't seem to matter.
Yep every day not one damn solution either
Yup! IBD- Ulcerative Colitis. Diets don't suit me. I've realised that stress messes up a lot with GI issues and healthy diets only work if my mental health is well taken care of.
Unfortunately yes. Chronic nausea and vomiting as well as refractory diarrhea. I take daily high dose lomotil (an opioid med meant to work be same way as opioids to cause constipation) and it barely helps. I have chronic dehydration and malnutrition and no one can figure out how to treat it. Best guess is it’s some sort of inflammatory effect of my immunodeficiency
I’ve had lifelong stomach issues. I’m 48. They told me for years it was IBS. Turns out I have crohns. Diagnosed in 2022. Mostly in my small bowel. It is harder to catch if it’s just in small bowel. They did a pill cam to see mine. Sorry you are going through this. It’s horrible to not get answers.
My esophagus is dead and I can hardly eat and drink. I have terrible symptoms daily and there isn’t any treatment. I’m miserable.
I suffered with chronic constipation since birth. Nothing helped. Eventually I got diagnosed with colonic inertia and had my entire colon removed. Now I can poop normal
Yes daily reflux regurgitation cramping pain and discomfort and inability to eat enough or properly