Calling IBD/IBS/Motility Disorders Sufferers

godlikepoetyes

Hello. I invite everyone who suffers from a digestive disorder to come together and support each other. It is hard enough to deal with food when you are food-obsessed, but when you are suddenly unable to eat anything that you love and are forced to deal with food in ways you've never imagined, it can be overwhelming. If you, like me, suffer from digestive disorders, please get in touch.


Here's a bit about me, at this moment--

I have Gastroparesis, GERD, LP Reflux, and SIBO. In short, I am having a really hard time with food and everything having to do with eating. I am afraid to eat at this point and have been on liquids the last few days. I cannot go out to eat. I can no longer take a sip of wine. I cannot drink tea or coffee except in the morning. I can't really explain Gastroparesis to anyone because it instantly confuses them when I say, "Well, I can't eat fresh fruits and vegetables." "No, I cannot eat the salad." "No, I cannot have whole grains." What, they think. She can't eat fiber? Huh?

happymom221

So sorry that you have to deal with that. I have Crohn's disease. I had my whole large intestine removed and 12 inches of small. I have had a colostomy bag since 2007 It was a party to not worry about the bathroom After surgery so I slowly gained weight.
I am working on healthy habits now and am progressing thru STRONGLIFTS 5x5

singingflutelady

I have severe fistulizing Crohn's. I just maxed out on stronglifts and started doing Texas method. It's hard with the exhaustion and food restrictions and pain so I have to take a full rest day between workout days. Since Christmas I have had no appetite on top of everything so my Dr cut my cardio out.

singingflutelady

I can't eat most fruits and vegetables, non white cards, red meat, seeds, nuts, legumes, spices, UN lots of stuff. People sure look at me odd ordering my chicken sub on white with no veggies at subway.

godlikepoetyes

I'm still trying to accept my diagnosis. I thought it would go away. So I really messed myself up the holidays. I Was better. Now I'm worse than ever. I had a piece of Gf toast this morning and I'm not sick. That was an accomplishment. I've been afraid to eat.

godlikepoetyes

happymom221 wrote: »

So sorry that you have to deal with that. I have Crohn's disease. I had my whole large intestine removed and 12 inches of small. I have had a colostomy bag since 2007 It was a party to not worry about the bathroom After surgery so I slowly gained weight.
I am working on healthy habits now and am progressing thru STRONGLIFTS 5x5

That sounds so hard. Are you able to eat?.

godlikepoetyes

And what is Strong Lifts?

singingflutelady

It's a beginner heavy lifting program

singingflutelady

@Happymom83 are you on a biologic and do you have fistulas? I'm on Remicade but it hasn't helped my fistulas.

andrewbadera

I've experienced GERD since I was 13 or so. I munched TUMS like candy through 22 or 23, when I discovered PPIs. I had by then started experiencing IBS or Crohn's symptoms. I've never been officially diagnosed, but my younger brother was, late last year, and we've both had similar issues for years.

I ended up having fistulae. I went through years of agony. The last couple years have been much better thanks to fish oil, probiotics, psyllium and pectin. The fish oil in particular allows me to not take a PPI everyday. The rest I think has largely helped with lower GI.

On the surgical addressing front, I had one bad general surgeon that turned me off from going to see another doc for a long time, back in NY. Then out here outside Chicago, I found a great surgeon who specializes in the field last year, had two surgeries - life is worlds better. The surgeries themselves, and recovery, were almost painless.

roxymuller

Hi. I know what it's like to not want to eat because you are afraid it will make you sick. I have either Crohns or Colitis but I have never been officially diagnosed. There are 7 cousins in my family with either of those diseases and one of them has a colostomy bag. I have basically been doing a hit and miss as to what I eat and see if it makes me sick. Just recently I couldn't figure out why my stomach was hurting so much. All kinds of things were running thru my mind as to what it was. When I started MFP, I stopped eating rye bread and noticed my stomach wasn't hurting. So I switched to white bread and I am fine. Also, because I had my gallbladder removed I have a hard time eating some foods too. Feel free to add me as a friend.

singingflutelady

Those of you without diagnosis, have you had a colonoscopy?

hyIianprincess

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

ydyms

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

andrewbadera

singingflutelady wrote: »

Those of you without diagnosis, have you had a colonoscopy?

At the age of 28 or so, yep. Clear then. The doc doing it managed to miss a pilonidal issue however; she wasn't a specialist.

Day_knee

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.

happymom221

To answer some questions about my surgery. I went through a few doctors in my metro area before seeing a doctor and surgeon at Cleveland clinic. Multiple Fistulas and abscesses and my colon was shot. I had diarrhea 20-30 times a day and many many "accidents" I was also had a bad liver diagnosis which made the surgery necessary. The bowel surgery corrected the liver problems which were probably due to the remicaide and chronic inflammation

I love my colostomy bag. It was the best decision. I have freedom from the bathroom and can eat whatever I want. (Why I gained TOO much weight). I am medicine free except vitamin D. I lost 75 pounds in 2015 and ran a 10k last August. It changed my life

godlikepoetyes

roxymuller wrote: »

Hi. I know what it's like to not want to eat because you are afraid it will make you sick. I have either Crohns or Colitis but I have never been officially diagnosed. There are 7 cousins in my family with either of those diseases and one of them has a colostomy bag. I have basically been doing a hit and miss as to what I eat and see if it makes me sick. Just recently I couldn't figure out why my stomach was hurting so much. All kinds of things were running thru my mind as to what it was. When I started MFP, I stopped eating rye bread and noticed my stomach wasn't hurting. So I switched to white bread and I am fine. Also, because I had my gallbladder removed I have a hard time eating some foods too. Feel free to add me as a friend.

I am afraid. But I want to eat. But even just having a potato yesterday, I ended up very sick last night. So, was it the potato? Too much activity and excitement? Am I being punished? The only good thing is I am losing weight.

size102b

I've had ibs d 21 years it gave me anxiety when travelling so has effected my life a lot

godlikepoetyes

happymom221 wrote: »

To answer some questions about my surgery. I went through a few doctors in my metro area before seeing a doctor and surgeon at Cleveland clinic. Multiple Fistulas and abscesses and my colon was shot. I had diarrhea 20-30 times a day and many many "accidents" I was also had a bad liver diagnosis which made the surgery necessary. The bowel surgery corrected the liver problems which were probably due to the remicaide and chronic inflammation

I love my colostomy bag. It was the best decision. I have freedom from the bathroom and can eat whatever I want. (Why I gained TOO much weight). I am medicine free except vitamin D. I lost 75 pounds in 2015 and ran a 10k last August. It changed my life

I'm so glad to know that a bag can be a sort of freedom. I never would have thought of it that way. I'm in danger of the other extreme. A feeding tube. But there's this part of me that thinks maybe this is all in my head somehow. I just have too many things going on at once. I have acne inversa (this has a huge long name , this is the lay term). I may have RA. I am being treated for it. I have this motility disorder and GERD. And LP Reflux. And fibromyalgia. And bipolar. But the thing is, they don't seem to forward up at the same time until now. My doctor has mentioned Lupus.

I do smoke some, but I've never smoked heavily. Obviously I'm going to have to cut that out. I can't drink alcohol. I can't sit for too long or my hips and back go haywire. I am trying not to feel sorry for myself but it's getting mighty hard.

godlikepoetyes

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.

godlikepoetyes

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?

godlikepoetyes

Day_knee wrote: »

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.

godlikepoetyes

ydyms wrote: »

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.

jmgj27

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.

godlikepoetyes

jmgj27 wrote: »

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.

singingflutelady

@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!

hyIianprincess

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

singingflutelady

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 humira

happymom221

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.

singingflutelady

@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.