Gastroparesis and Cystic Fibrosis - Looking for Answers

[TerriC]

I'm looking for anyone who might be suffering from Gastroparesis along with CF. My daughter was diagnosed at birth with CF (Meconium Ileus). She has always had mild stomach issues until her late teen years when she would become partially blocked from time to time. She would have golytely for a few days and then would be fine for a while. In her late teens and early 20's she started experiencing extreme pain and bloating - we would take her to emerg where they would get her pain under control with morphine. They would do xrays and cat scans that would show nothing....this went on for a few years off and on until she started experiencing pain more often (weekly then daily). She started taking Oxycodone and tylenol 3's just to get through the day and we would still occasionally have to go to the ER for morphine. 8 months ago she was admitted to the hospital because she had been vomiting daily for a few months and started to lose a lot of weight. Once admitted she was put on dilaudid for pain and has not been off of it since. She was in hospital for 6 weeks which is where we were finally told that she had gastroparesis as well. I'm just wondering if anyone else has had similar issues and what they are doing about it. My daughter was fitted with a feeding tube while in hospital but is only using it now for her pain meds. WE have taken her completely off of domperidone and omeprezol (we have found out that these drugs may be contributing to the problem) We also took her off of Miralax ( she had been on it for 8 years - 3 - 4 times a day) We are now using more natural methods and guess what - she can now go to the bathroom without laxatives for the first time in years. Our main issue now is the pain and nausea. Her diet is really limited and is more liquid although she can tolerate a few solids. Anyone else have anything to share that might help??? By the way she is 26 years old and is a really beautiful soul!

 

[TwistedTanya]

I've had a lot of problems with gastroparesis since I had 2 stomach surgeries. Lots of pain and trips to the ER too. I take Omeprazole and Domperidone....which have actually helped some. I also realized I became lactose intollerant so that was causing a lot of bloating and pain. I try to stay away from dairy but I love it so when I have something with it, I take 1-2 lactaids. I no loner use regular milk and use Almond milk instead. After my last EGD, the doc told me that I could try a procedure that is still experimental but has been helping some. They give Botox injections in the spincter to loosen them up so food can move out of the stomach easier. My lung tx doctor said they are also trying TENS pads on their mid back every day that have helped some people too. Also, the pain meds she is getting will also sedate the stomach and slow down it's function. When I had severe pains in my stomach from gastro, they NEVER gave me pain meds b/c they said it would cause my stomach to work even worse. I'm surprised they are giving her such strong pain meds and not finding other ways to fix it.

 

[windex125]

I was diagnosed with that a few tears ago as had the bloating, vomiting the gastro doctor put me on Reglan which I stayed on for over a year then weaned myself off, it has some nasty side effects, so I for once in my life paid attention to the side effects. I also hv to use Miralax daily, and I hv to say it's the only thing that keeps me regular. I've had many back ups and they are so painful. I have to agree with TT he wld not give me any pain meds either, he said within a week this drug wld get the food moving and keeping the BM's going worked for me. I wish yr. daughter all the best. Pat/60