Calling IBD/IBS/Motility Disorders Sufferers
Options
Replies
-
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?
0 -
Diagnosed with IBS-D. I don't know why anyone calls it a "functional disease"! I so canNOT function. I have not worked in so long. I have a Masters degree and I can't even work in the field that I spent so much time studying. 2 weeks ago my GI took a stool sample and called me 24 hours after the lab received it and said test confirms I have C-Diff. I took all my medication as prescribed but things are still not that great. I will retest next Monday. Anyhow..I know how much I suffer and how much my quality of life has diminished. It makes me so sad. Aside from that I take a medication that is supposed to help with the IBS-D and the side affect is weight gain. As if things are not hard enough! I feel for everyone who suffers from this disease and similar ones.
I know. I'm getting sad, but trying to concentrate on the good stuff. But it's so hard and no one can really understand.0 -
I suffer from SIBO, ibs, celiac, etc and I'm crazy limited with what I can eat. I'm so sorry you're having a hard time too
Good lord. I've been tested for celiac. Neg. But I'm trying gluten free because it's easier for anybody's digestion. And diary free. And going quite mad. I got sick last night. We were watching a movie at home. Then nausea hit, hard. I have to stop writing about it. It's making me sick.0 -
I have ulcerative colitis, diagnosed last year (probably brought on by my twin pregnancy in 2014). Been on and off steroids since I was diagnosed and put on a bunch of weight (and I was fat to start with). I've cut out alcohol and cut back on caffeine and red meat and seem much better now. Also managing to lose weight reasonably easily and slowly weaning off the steroids (down to 9mg a day from 40mg). Trying to avoid taking an immunosuppressant if I can help it but if I can't wean off the steroids I won't have much choice. Good luck with it, it's not much fun and takes a lot of medicine/lifestyle juggling before you can find something that works for you.0
-
I have ulcerative colitis, diagnosed last year (probably brought on by my twin pregnancy in 2014). Been on and off steroids since I was diagnosed and put on a bunch of weight (and I was fat to start with). I've cut out alcohol and cut back on caffeine and red meat and seem much better now. Also managing to lose weight reasonably easily and slowly weaning off the steroids (down to 9mg a day from 40mg). Trying to avoid taking an immunosuppressant if I can help it but if I can't wean off the steroids I won't have much choice. Good luck with it, it's not much fun and takes a lot of medicine/lifestyle juggling before you can find something that works for you.
I think that will be the trick. Figuring out how to manage.0 -
@happymom221 i want a bag. It would improve my life so much! I have several fistulas and they are a pain in the butt. I'm on azathioprine and Remicade so 2 immunesuppressants.I'm doing OK at the moment but so, so exhausted all the time, chronic pain and the darn fistulas. The Remicade is starting to fail or I am starting to flare ( my GI is unsure at the moment) so I am scared!0
-
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 20140 -
godlikepoetyes wrote: »singingflutelady wrote: »@Happymom83 are you on a biologic and do you have fistulas? I'm on Remicade but it hasn't helped my fistulas.
No fistulas. No biologic. I've not heard of them for gastroparesis.
That was for happymom. Fistulas are complications of Crohn's and biologics are meds like Remicade and humira0 -
singingflutelady wrote: »@happymom221 i want a bag. It would improve my life so much! I have several fistulas and they are a pain in the butt. I'm on azathioprine and Remicade so 2 immunesuppressants.I'm doing OK at the moment but so, so exhausted all the time, chronic pain and the darn fistulas. The Remicade is starting to fail or I am starting to flare ( my GI is unsure at the moment) so I am scared!
The fistulas. I had poop coming out of the wrong place due to the recto-vaginal Fistula. I am sorry you are going through this. I was in a constant flare even on every drug possible Remicaide probably caused my liver issue which can was misdiagnosed by 2 docs. Thank god- because it gave me about 10 years to live so grateful everyday.
0 -
@happymom221 Yup with the poop coming out the wrong places. I have one through my skin too. I was just diagnosed a year ago after ignoring symptoms forever and blaming IBS. I ended up in the ER very close to perforating basically on my death bed. Was hospitalized for 34 days with the usual antibiotics, steroids, tpn, etc and the Dr put me on Remicade right away but it didn't start working until September. If I didn't get the Remicade I would have lost my large intestine by now. Worried and scared it is failing I'm going to get the Prometheus test soon. The fistulas appeared about a month after diagnosis while on Remicade and it hasn't helped close them yet.
I'm glad the surgery worked well for you. I know lots of people with bags or j pouches who now have a better quality of life.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!0 -
I have direrria everyday. I had part of my small intestine removed when I was a baby.0
-
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
-
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
Categories
- All Categories
- 1.4M Health, Wellness and Goals
- 391.4K Introduce Yourself
- 43.5K Getting Started
- 259.7K Health and Weight Loss
- 175.6K Food and Nutrition
- 47.3K Recipes
- 232.3K Fitness and Exercise
- 389 Sleep, Mindfulness and Overall Wellness
- 6.4K Goal: Maintaining Weight
- 8.5K Goal: Gaining Weight and Body Building
- 152.7K Motivation and Support
- 7.8K Challenges
- 1.3K Debate Club
- 96.3K Chit-Chat
- 2.5K Fun and Games
- 3.2K MyFitnessPal Information
- 22 News and Announcements
- 918 Feature Suggestions and Ideas
- 2.3K MyFitnessPal Tech Support Questions