Calling IBD/IBS/Motility Disorders Sufferers
Replies
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Hello fellow digestivers!
So...I am apparently in a category of GI illness that has no name. I have had scads of tests, and I sort of fit into some categories, but not really.
I have no normal GI peristalsis. None.
So, like gastroparesis...but your entire intestine. Sigh. I have no peristalsis at all in my esophagus. The only way I can eat is via gravity. I have a weird combination of gastroparesis, but with dumping syndrome. And I have "sluggish" intestines. I have wicked constipation (unless I take all my medications religiously, with daily laxatives and fibre supplements and a perfect diet with tons of water) I slip up on anything, at all, and it's horrible.
In order to function when it comes to food, I take 27 pills a day of prescription meds and supplements.
And I have found that I hate food with a passion. I went for years of only being able to eat very specific things (that we're all awful health wise). Fruits, veggies, whole grains....ugh. They hurt going down...and coming back up (since stuff sits in my esophagus for hours at a time). I've taken all sorts of medications that screwed with my hormones and appetite and everything in between (the one med I have actually acts like a pituitary tumour...go figure).
So, it's been a rough while. I've gained over 50 lbs, lost 75 lbs, then re-gained a bunch...and yo-yo'd all over the place. I've had where I seem to be in remission and do really well...then I flare up and it all goes to hell.
At this point I would just like to get to a relatively normal weight for myself and maintain some semblance of normalcy!
And sometimes I feel like a double failure...as I have all these digestive issues that tend to cause people to lose weight...and I gained! Sigh!
But...on the flip side, my doc said odds are good I won't be able to eat at all so and that it will most likely just happen one day suddenly. Then I'll need major surgery and other interventions. Something to look forward to I guess
How do all of you cope with all this digestive fun? And feel free to add me if anyone wants, support is always nice!0 -
I have direrria everyday. I had part of my small intestine removed when I was a baby.0
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hyIianprincess wrote: »godlikepoetyes wrote: »hyIianprincess wrote: »I'm on a low fat/low fiber diet due to gastroparesis. I also have GERD. Currently trying to put on weight and build muscle. I just started strength training a few days ago
What meds are you on? When were you diagnosed?
Currently I'm on Prevacid and I get Botox injections every 3-5 months for the gastroparesis. I was diagnosed in the summer of 2014
Does the Botox work??0 -
I am doing a bit better the last couple of days, able to eat some solid foods. I am moving slowly forward, even though part of me feels "cured" just because I've had 3 good days. That's the hard thing. Remembering that this is not going to magically go away.
I admire you guys with Crohn's and serious complications so much, because you are hanging in there. I cannot image what you've been through.0 -
Hello fellow digestivers!
So...I am apparently in a category of GI illness that has no name. I have had scads of tests, and I sort of fit into some categories, but not really.
I have no normal GI peristalsis. None.
So, like gastroparesis...but your entire intestine. Sigh. I have no peristalsis at all in my esophagus. The only way I can eat is via gravity. I have a weird combination of gastroparesis, but with dumping syndrome. And I have "sluggish" intestines. I have wicked constipation (unless I take all my medications religiously, with daily laxatives and fibre supplements and a perfect diet with tons of water) I slip up on anything, at all, and it's horrible.
In order to function when it comes to food, I take 27 pills a day of prescription meds and supplements.
And I have found that I hate food with a passion. I went for years of only being able to eat very specific things (that we're all awful health wise). Fruits, veggies, whole grains....ugh. They hurt going down...and coming back up (since stuff sits in my esophagus for hours at a time). I've taken all sorts of medications that screwed with my hormones and appetite and everything in between (the one med I have actually acts like a pituitary tumour...go figure).
So, it's been a rough while. I've gained over 50 lbs, lost 75 lbs, then re-gained a bunch...and yo-yo'd all over the place. I've had where I seem to be in remission and do really well...then I flare up and it all goes to hell.
At this point I would just like to get to a relatively normal weight for myself and maintain some semblance of normalcy!
And sometimes I feel like a double failure...as I have all these digestive issues that tend to cause people to lose weight...and I gained! Sigh!
But...on the flip side, my doc said odds are good I won't be able to eat at all so and that it will most likely just happen one day suddenly. Then I'll need major surgery and other interventions. Something to look forward to I guess
How do all of you cope with all this digestive fun? And feel free to add me if anyone wants, support is always nice!
Well, all that sucks. I am sorry you are going through this. I have been diagnosed with gastroparesis, and my doctor says my whole system is sluggish. But, after reading all of these replies to my post, I feel fortunate that things are as good as they are. I wish I could do something to help.
Have you read "Living Well With Gastroparesis"? This book, and the author's other book, "Cooking for Gastroparesis," were the only sources of real info I had at first. Doctors are of little help, just telling you to go on clear liquids, then soft foods, then just cook everything really well and eat small meals. That is not enough to deal with this.
So I am finding ways to deal, and seeking others with the same issues.0 -
HannahSwenson82 wrote: »I have direrria everyday. I had part of my small intestine removed when I was a baby.
So, so sorry.0 -
Here's a dumb question. How do I add friends?0
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godlikepoetyes wrote: »hyIianprincess wrote: »godlikepoetyes wrote: »hyIianprincess wrote: »I'm on a low fat/low fiber diet due to gastroparesis. I also have GERD. Currently trying to put on weight and build muscle. I just started strength training a few days ago
What meds are you on? When were you diagnosed?
Currently I'm on Prevacid and I get Botox injections every 3-5 months for the gastroparesis. I was diagnosed in the summer of 2014
Does the Botox work??
It's been life changing for me. Prior to my first injection, I was on a liquid diet. I was dropping weight drastically and my GI doctor said if I continued losing weight they would have to put a feeding tube in me. She brought up my case at her next meeting and she thought it would be worth trying the injections. To my knowledge and from what I've read the surgery is experimental and most patients don't notice a difference though. I still have flares ups frequently but with the injections it's a lot more manageable.0 -
hyIianprincess wrote: »godlikepoetyes wrote: »hyIianprincess wrote: »godlikepoetyes wrote: »hyIianprincess wrote: »I'm on a low fat/low fiber diet due to gastroparesis. I also have GERD. Currently trying to put on weight and build muscle. I just started strength training a few days ago
What meds are you on? When were you diagnosed?
Currently I'm on Prevacid and I get Botox injections every 3-5 months for the gastroparesis. I was diagnosed in the summer of 2014
Does the Botox work??
It's been life changing for me. Prior to my first injection, I was on a liquid diet. I was dropping weight drastically and my GI doctor said if I continued losing weight they would have to put a feeding tube in me. She brought up my case at her next meeting and she thought it would be worth trying the injections. To my knowledge and from what I've read the surgery is experimental and most patients don't notice a difference though. I still have flares ups frequently but with the injections it's a lot more manageable.
This is so good to know. I met with a nutritionist today and she was sympathetic. She actually LISTENED. Now I'm sure that I am not receiving proper care from my NP at my doctor's office. She is just no help at all. I'm trying to get in to see a different doctor in the same practice, but it's probably going to be a no go.
In any case, it's nice to know that Botox is working for you. I knew of it, but haven't talk to anyone who's had it. Please let me know what else you've tried.0 -
Same with me. My dietician taught me more about Crohn's than my GI. I don't feel like he listens and he is a bit behind the times (he tells me I can eat everything.. Even if it triggers me ugh). Being on liquid nutrition sucks (I was on tpn through a picc line for a while and when they removed my picc line I drank vital- which is like ensure but specifically for those with malabsorption/GI issues afterwards and it was no fun)0
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Hi - Just saw this. I rejoined MFP when my GI Doc asked me to keep a food/symptom diary. I go for a colonoscopy next week to see if what I thought was IBS is really IBD (suspicion of ulcerative colitis due to family history and ethnic group).
It looks like the most active of the groups related to digestive woes is http://community.myfitnesspal.com/en/group/1311-fighting-crohns-ibs-ibd
though it looks like the last post was in August. I recommend that it might be easier for us to support each other if we try to reinvigorate the group.0 -
@Arianera good luck! Hope you don't have UC! IBS doesn't progress to UC though. They are separate entities. It is common for IBDers to have both or to have been misdiagnosed as IBS before their IBD diagnosis (just saying this so ibs people don't get scared and worry that their IBS will change to UC or Crohn's).0
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@singingflutelady You're right, that was a poor choice of words (though it feels to me like something has progressed to the worse). I've edited my post0
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I hadn't realized there was a group. I will check it out. But if no one's posted since August......I will see.0
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I met with a nutritionist yesterday and she assured me that I will be okay if I'm on a liquid diet. I won't starve. I won't be unhealthy. It is just a different way to get nutrients.
I just came from a barium swallow test. Yuck. But I really do want to eat now! The last few days I've not been getting enough calories. I've been afraid to eat, and my appetite has been poor. Well, I've been eating enough by MFP standards, but I have not been getting enough to really lose weight. I have updated my activity. A LOT. I am getting in 10,000 steps, pretty easily. I am going for a couple of walks every day. I am cleaning and moving and, in spite of my crappy guts, I have more and more energy.
The trick today is to not go all crazy and mess up my digestion. But....another thing the nutritionist told me is that sometimes there is absolutely no rhyme or reason with gastroparesis. I had read this, but my NP never told me this. She just made me feel like everything was my fault. I have made an appointment to see a new doctor.
How do you guys deal with the nausea? I take Zofran, but my NP doesn't want me to take it on a daily basis, and my insurance will only cover 9 pills a month. She won't write an rx for Phenegran. I have ginger gum, which doesn't work when it's really bad. I cannot take Pepto. I put Sea Bands on last night, but they really hurt my wrists and I felt really WEIRD.
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godlikepoetyes wrote: »hyIianprincess wrote: »godlikepoetyes wrote: »hyIianprincess wrote: »godlikepoetyes wrote: »hyIianprincess wrote: »I'm on a low fat/low fiber diet due to gastroparesis. I also have GERD. Currently trying to put on weight and build muscle. I just started strength training a few days ago
What meds are you on? When were you diagnosed?
Currently I'm on Prevacid and I get Botox injections every 3-5 months for the gastroparesis. I was diagnosed in the summer of 2014
Does the Botox work??
It's been life changing for me. Prior to my first injection, I was on a liquid diet. I was dropping weight drastically and my GI doctor said if I continued losing weight they would have to put a feeding tube in me. She brought up my case at her next meeting and she thought it would be worth trying the injections. To my knowledge and from what I've read the surgery is experimental and most patients don't notice a difference though. I still have flares ups frequently but with the injections it's a lot more manageable.
This is so good to know. I met with a nutritionist today and she was sympathetic. She actually LISTENED. Now I'm sure that I am not receiving proper care from my NP at my doctor's office. She is just no help at all. I'm trying to get in to see a different doctor in the same practice, but it's probably going to be a no go.
In any case, it's nice to know that Botox is working for you. I knew of it, but haven't talk to anyone who's had it. Please let me know what else you've tried.
That's so important. If there's anything I've learned when dealing with specialists and doctors, it's that it's really important that you find someone who listens and you like. Good luck trying to find a new doctor. I hope it works out for you!
The only other medicine I've tried besides a bunch of natural/herbal stuff in erythromycin and I had a HORRIBLE experience with it. I've never felt so sick in my entire life. I've heard that Reglan helps a lot of people but it has a black box warning so I've stayed clear from it.0 -
Jmgj27 - my father was diagnosed with ulcerative colitis in 1978 after almost dying.
For him, it is mostly diet. His system was really ripped up at first. He went on a traditional elimination diet and cut out all his triggers. It was so bad, he had hardly any yes foods.
But now he is doing really well. As long as he sticks to the diet. This also includes rotating foods. If he eats the same foods too often, he then develops a reaction to that food.
He did take steroids for a while, and sulfer stuff of some type. But now he is off it.
This seems to be genetic. Both my brother and I became very ill in our 20s. Removing gluten solved it for both of us. This includes rye. I think that since we are strict with our diet and got out in front of the "illness" we are Ok.
On the bad side, it is a messed up immune reaction and my allergies to lavender have really really spiked. I have to carry benedryl now. I think it is all the same cause.0 -
Jmgj27 - my father was diagnosed with ulcerative colitis in 1978 after almost dying.
For him, it is mostly diet. His system was really ripped up at first. He went on a traditional elimination diet and cut out all his triggers. It was so bad, he had hardly any yes foods.
But now he is doing really well. As long as he sticks to the diet. This also includes rotating foods. If he eats the same foods too often, he then develops a reaction to that food.
He did take steroids for a while, and sulfer stuff of some type. But now he is off it.
This seems to be genetic. Both my brother and I became very ill in our 20s. Removing gluten solved it for both of us. This includes rye. I think that since we are strict with our diet and got out in front of the "illness" we are Ok.
On the bad side, it is a messed up immune reaction and my allergies to lavender have really really spiked. I have to carry benedryl now. I think it is all the same cause.
It is very frustrating when you KNOW that all your symptoms and illnesses/disorders are tied together and your doctors won't listen to you. But I am very glad for you and your brother that you headed this off at the pass.
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Jmgj27 - my father was diagnosed with ulcerative colitis in 1978 after almost dying.
For him, it is mostly diet. His system was really ripped up at first. He went on a traditional elimination diet and cut out all his triggers. It was so bad, he had hardly any yes foods.
But now he is doing really well. As long as he sticks to the diet. This also includes rotating foods. If he eats the same foods too often, he then develops a reaction to that food.
He did take steroids for a while, and sulfer stuff of some type. But now he is off it.
This seems to be genetic. Both my brother and I became very ill in our 20s. Removing gluten solved it for both of us. This includes rye. I think that since we are strict with our diet and got out in front of the "illness" we are Ok.
On the bad side, it is a messed up immune reaction and my allergies to lavender have really really spiked. I have to carry benedryl now. I think it is all the same cause.
This gives me hope. I was diagnosed with Crohn's basically on my death bed. I am super strict with restricting my trigger food (so much of it) but sometimes react to safe foods.
Since it is an autoimmune disease and our immune systems are attacking our body there are tons of non GI symptoms. I am on immunosuppressants (azathioprine and Remicade) basically for life and still have symptoms (but way better than before). Terrified if I stop them that my suppressed immune system will come back and try to kill me again. I'm kinda going into a flare right now and terrified my drugs are failing.
Autoimmune diseases suck!0 -
IBD has a genetic factor. I think they have found around 10 (could be wrong with this number) mutated genes associated with it and currently have a long standing sibling study. I'm the only one in my family with it but my mom has gerd and IBS and I have tried to get her to get a colonoscopy as I am worried her IBS is really mild IBD (I was misdiagnosed as IBS forever)0
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I belive I have IBS - D. My doctor is of the opinion that I'm imagining symptoms, the same ones since I was fourteen, and really didn't take me serious until I was in my twenties.
I ended up finding a website about IBS and after recognizing a lot of the symptoms as things I suffered through I signed up for the newsletter. There was a really helpful member made list of "safe" food that I picked through to find what was safe for me. And it started me on peppermint capsules for the cramps and stomach pains. Fiber for regularity though for some it had the opposite effect. And a Probiotic to help out my stomach when flare ups made it feel as if I'd stripped all of the good and bad bacteria from it.
I eventually managed to get the rampant diarrhea under control somewhat. And even though she didn't really understand why I had so many "stomach problems" my mom was really helpful. She'd bring home safe foods, she changed her diet a bit to make it more stomach friendly for me so we could eat out together again. And she even knew where all of the bathrooms were in any new place we went.
The best part was that she didn't get upset or short with me when flare ups had me bathroom bound during outings and she had to wait a while for me to be able to leave it.
My doctor eventually took me serious enough to recommend a medication. It masks the symptoms of a flare up though so I had to stop taking it and went back to monitoring what I was eating. Now the flare ups aren't so bad and they don't happen as often.
My only real concern is that I seem to be developing new trigger foods and all the exercise I'm trying to do results in a flare up within five minutes of my stopping exercise.0 -
I have suffered from IBS for 40 years. It has changed a lot over the years, and I am basically IBS Alternating - if I treat IBS-D, I get IBS-C, and vice versa. I have GERD as well, and Post-Cholecystectomy Syndrome, which is basically dumping syndrome subsequent to gallbladder removal, which 10 to 15% of people develop after gallbladder surgery (but nobody tells you about prior to surgery).
There is no rhyme or reason to my guts - they do what they want, when they want, and just when I think I've gotten some control, they laugh at me and change course. The one thing that is certain is that I can eat almost no leafy or cruciferous vegetables, which makes dieting a bit more interesting. I am housebound a great deal, know every location of every bathroom in about a 30-mile radius of home, and spend a lot of time in bed, either in pain/discomfort (and never minimize discomfort) and/or recovering from a bout. It is hugely demoralizing and depressing, and I already suffer from clinical depression and anxiety.
That said, my brother has suffered from Crohn's for the same length of time, almost dying on three separate occasions, so, as bad and life-limiting as this is, at least it isn't potentially fatal.
I want to point you all to the IFFGD (International Foundation for Functional Intestinal Disorders) site: iffgd.org/ They are a non-profit organization that provides a great deal of information for people like us, and I just wanted to share their site with you for any questions or problems you are having. They have answered a few direct questions for me, and have been very helpful in helping me locate resources for medical care. They also have forums like MFP you can post questions on, although I haven't been there in a while so am not sure how active they are. They also have a very active Facebook page if you are on Facebook: https://facebook.com/IFFGD/?fref=ts
I'm sad to see so many others suffer from these digestive issues, and I wish you all well in your struggles against these diseases/syndromes.0 -
@godlikepoetyes I should have explained fistulas are "connections" (like tunnels, holes) between two structures. They usually form because of abcesses. They can be between any two structures but in Crohn's it is usually between different parts of your intestines, your intestines and bladder, your intestines and vagina or intestines and skin (perianal) with skin ones and vaginal ones the most common I think (I have both of these). 40sh % of Crohn's patients have them. They leak fecal matter, blood, pus, discharge, etc and sometimes urine and are painful. They can have many networks inside the intestines. Fun, fun stuff0
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I belive I have IBS - D. My doctor is of the opinion that I'm imagining symptoms, the same ones since I was fourteen, and really didn't take me serious until I was in my twenties.
I ended up finding a website about IBS and after recognizing a lot of the symptoms as things I suffered through I signed up for the newsletter. There was a really helpful member made list of "safe" food that I picked through to find what was safe for me. And it started me on peppermint capsules for the cramps and stomach pains. Fiber for regularity though for some it had the opposite effect. And a Probiotic to help out my stomach when flare ups made it feel as if I'd stripped all of the good and bad bacteria from it.
I eventually managed to get the rampant diarrhea under control somewhat. And even though she didn't really understand why I had so many "stomach problems" my mom was really helpful. She'd bring home safe foods, she changed her diet a bit to make it more stomach friendly for me so we could eat out together again. And she even knew where all of the bathrooms were in any new place we went.
The best part was that she didn't get upset or short with me when flare ups had me bathroom bound during outings and she had to wait a while for me to be able to leave it.
My doctor eventually took me serious enough to recommend a medication. It masks the symptoms of a flare up though so I had to stop taking it and went back to monitoring what I was eating. Now the flare ups aren't so bad and they don't happen as often.
My only real concern is that I seem to be developing new trigger foods and all the exercise I'm trying to do results in a flare up within five minutes of my stopping exercise.
I have to be careful with some exercise, esp. twisting motions when I stretch.0 -
LaceyBirds wrote: »I have suffered from IBS for 40 years. It has changed a lot over the years, and I am basically IBS Alternating - if I treat IBS-D, I get IBS-C, and vice versa. I have GERD as well, and Post-Cholecystectomy Syndrome, which is basically dumping syndrome subsequent to gallbladder removal, which 10 to 15% of people develop after gallbladder surgery (but nobody tells you about prior to surgery).
There is no rhyme or reason to my guts - they do what they want, when they want, and just when I think I've gotten some control, they laugh at me and change course. The one thing that is certain is that I can eat almost no leafy or cruciferous vegetables, which makes dieting a bit more interesting. I am housebound a great deal, know every location of every bathroom in about a 30-mile radius of home, and spend a lot of time in bed, either in pain/discomfort (and never minimize discomfort) and/or recovering from a bout. It is hugely demoralizing and depressing, and I already suffer from clinical depression and anxiety.
That said, my brother has suffered from Crohn's for the same length of time, almost dying on three separate occasions, so, as bad and life-limiting as this is, at least it isn't potentially fatal.
I want to point you all to the IFFGD (International Foundation for Functional Intestinal Disorders) site: iffgd.org/ They are a non-profit organization that provides a great deal of information for people like us, and I just wanted to share their site with you for any questions or problems you are having. They have answered a few direct questions for me, and have been very helpful in helping me locate resources for medical care. They also have forums like MFP you can post questions on, although I haven't been there in a while so am not sure how active they are. They also have a very active Facebook page if you are on Facebook: https://facebook.com/IFFGD/?fref=ts
I'm sad to see so many others suffer from these digestive issues, and I wish you all well in your struggles against these diseases/syndromes.
Thanks for this info. I am going to look up "Post-Cholecystectomy Syndrome" because I suspect that some of my symptoms are related to gallbladder removal.0 -
singingflutelady wrote: »@godlikepoetyes I should have explained fistulas are "connections" (like tunnels, holes) between two structures. They usually form because of abcesses. They can be between any two structures but in Crohn's it is usually between different parts of your intestines, your intestines and bladder, your intestines and vagina or intestines and skin (perianal) with skin ones and vaginal ones the most common I think (I have both of these). 40sh % of Crohn's patients have them. They leak fecal matter, blood, pus, discharge, etc and sometimes urine and are painful. They can have many networks inside the intestines. Fun, fun stuff
Yes. I have acne inversa, some issue, though mine hasn't gotten that bad and I intend to do my damnedest to keep it at bay. I am just so sad that so many of us have these disorders and that they are all so connected, though our doctors cannot tell us how, even if they do care and listen. There's just so much we don't know.0 -
Crohnie here! Hi all!! I was diagnosed with Crohn's almost 10 years ago and now waiting to get tested for Lupus. No meds or surgery has helped keep my IBD at bay and currently dealing with a 4 week flare + the flu.0
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nojuicejustjin wrote: »Crohnie here! Hi all!! I was diagnosed with Crohn's almost 10 years ago and now waiting to get tested for Lupus. No meds or surgery has helped keep my IBD at bay and currently dealing with a 4 week flare + the flu.
Hi, Crohnie. I am so sorry you're in a flare. I just came out of a flare (gastroparesis/fibro). Hope yours ends soon. The flu, or anything really, usually knocks me backwards. I was tested for RA and Lupus, and treated for a while. My docs have decided I have neither, just fibro and osteoarthritis. And gastroparesis.0 -
godlikepoetyes wrote: »
Hi, Crohnie. I am so sorry you're in a flare. I just came out of a flare (gastroparesis/fibro). Hope yours ends soon. The flu, or anything really, usually knocks me backwards. I was tested for RA and Lupus, and treated for a while. My docs have decided I have neither, just fibro and osteoarthritis. And gastroparesis.
Hi! I hope nothing but remission and pain relief! Anything autoimmune is always tricky when you try to exercise. It's a challenge but we are fighters to something much bigger than just exercise.
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I know this is an old thread but @happymom221 I finally had a total proctocolectomy with end ileostomy and barbie butt surgery 7 weeks ago because of the fistulas. I have some complications but it's way way better than the fistulas0
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