I am so discouraged! I thought I had been doing pretty well, but now I have gastroparesis or stomach emptying too slowly. The meds my GI dr gave me caused diarrhea worse than I have ever had before or after the jpouch. It seems like a catch 22. Has anyone ever had this along with the pouch? The nausea and vomiting are about to get the best of me. Any advice? thanks- Hoping
Replies sorted oldest to newest
Did u have the gastric emptying test To confirm?
Oh I'm sorry they thought I might have had a problem And gave me Reglan. The worse Diareah. Maybe you can lower the dose. But then my study came back ok. It was my pouch.
They gave me Linzess and that was HORRIBLE diarrhea also. Stopped taking after 2 doses. Today I was informed from blood work that my vitamin D is extremely low and I have negative estrogen. Dr thinks estrogen will help anxiety and general overall feeling, but I am terrified of side effects..blood clots etc. Any one out here taken estrogen with a jpouch? Searching for answers!
Thanks - hoping.
Hoping posted:I am so discouraged! I thought I had been doing pretty well, but now I have gastroparesis or stomach emptying too slowly. The meds my GI dr gave me caused diarrhea worse than I have ever had before or after the jpouch. It seems like a catch 22. Has anyone ever had this along with the pouch? The nausea and vomiting are about to get the best of me. Any advice? thanks- Hoping
I just saw your post... I’ve had j pouch since 2000 as I just found out I have Gastroparesis as well.... I’m unsure and scared.... Your post is from 2015 as I’d like to ask your status on this and how your doing with both at same time...
Thanks, Tracy
I saw your post from 2015 and I’m going through same thing right now... I’ve had a pouch since 2000 and now Gastroparesis. I’m unsure and scared to have both....Please tell me how your doing and how you deal with both...what they done for you...
Thank you,
Tracy
Sorry Tracy, my study came back normal. It was my j pouch that caused all the digestive issues. I hope you feel better.
Hi, I'm hoping to find someone in a similar situation, and this conversation popped up in my search.
I've had my J-pouch since 2003, and started having recurring pouchitis around 2017-18. I started Stelara in July 2022, and stopped Aoril 2024 due to the outrageous expenses even with insurance and Jansen financial aid.
About a year ago, although the pouch was doing well, I started having recurring middle to upper abdominal pain. (I've been on Omeprazole for over two years). My GI believed it was GERD pain, regardless of Omeprazole use. Early Feb 2024 I was finally given a GES, which showed moderate gastroparesis. I had to wait 2 months for an upper endoscopy with EUS . That was do e today, and luckily nothing big and scary. No stomach ulcers, esophagus looks normal, as do neighboring organs. Good news, but unfortunately I'm no closer to source of my gut pain. I'm not diabetic, don't do drugs, and drink only occasionally. Anyone else in a similar boat?
Yes and it’s very disturbing
Hello
I have a j pouch for 21 years and last year diagnosed with gastroparisis ( while I was dealing with long covid )
I had the empty test , showed severe delayed emptying. I suffered for 6 months , vomiting , pain , gerd, loss of weight . Then symptoms disappeared.
I started living a normal life again .
recently I contacted a bad respiratory illness, may have been covid , ( test neg) but it was 3 weeks , coughing , runny nose ….
then the gastroparesis reappeared.
vomiting , pain , went to E R
they put me on reglan , lost a lot of weight , can eat small amounts of food to not experience pain . They said this gastroparisis is a flare up from having the respiratory virus , ( again )
very frustrated… now have to let this run it’s course and once you have this you never get rid of it . Just flare ups when your body gets triggered
