I have late stage cirrhosis and severe splenomegaly from psc that was dx 2009. 3 years ago I was diagnosed with crohns. My crohns dr says it is in remission based on cal protectant test and colonoscopy. It sure doesn’t feel that way. I take 4.8g Mesavant daily for Crohns and 1000mg urosdiol for psc. Over the last year especially the bloating and fluid retention I get from both is getting worse and more constant. Diuretics help sometimes but I’m never sure if it’s fluid or bloating or both. It’s gotten so bad I have diastasis rectus (split my abdominal ligament) and an umbilical hernia now. I avoid dairy and limit gluten. Nothing I do seems to truly help. Looking for help from anyone experiencing symptoms from both psc and crohns. Please any suggestions or recommendations…?
I’m sorry to hear that you’re struggling! I don’t unfortunatly have any recommendations, but to me (not a doctor though) this sounds like symptoms of your late stage cirrhosis and not from Crohns. If your fecal calprotectin and colonoscopy is normal, then you for sure in remission. Also, fluid retention isn’t a Crohn’s symptom (it’s more of a cirrhosis symptom).
Although I’m not sure I can give you advice thank you for posting as I have the same issues! I’m a 53 year old male, also Crohns (since the 1990’s) and PSC (2016). Splenamegaly with platelets in the 40’s and varices but the thing that bothers me most is the bloating/fluid, and not knowing exactly what it is. I told my liver doctor it fluctuates during the day and the week and she said its a GI issue. My GI doc says it’s fluid. I did have paracentesis recently in which 2.5L were drained but I still have the extreme discomfort daily. And when it ‘bloats’ it pushes on my lungs and breathing becomes more labored. Worse as the day progresses. I do work out daily (sometimes twice a day) and try to limit my quanitity of food and water. I eat ‘healthy’ but like you have tried many different ‘diets’ and symptoms always seem the same. I do feel it has to do with quantity for me more than anthing but anyone with any other tips it would be appreciated.
I’m a nurse practitioner and believe I can address this. The symptoms of bloating and abdominal swelling are coming from your liver. It’s called ascites. Are you under the care of a good liver transplant specialist? My daughter had UC and just had her colon removed—she also has PSC and has been under the care of a liver transplant specialist since the week after diagnosis. If you are not, please find one. Insist on it. Hopefully you live near a larger city. If not, worth it to travel there.
Thank you for you comment. I do have a good liver specialist at Brigham and Womens in Boston that I see every 3 months. We know some or much of it is ascites but with ascites we shouldnt’s see fluctuations the way I do during the day itself. This is what she says is GI related and not ascites. Im guessing it a mixture of the two but it makes it hard every day. Sorry to hear about your daughter.
Khogie, in dealing with PSC symptoms like ascites, make sure you see a hepotologist, preferably at a transplant hospital… They are liver specialists, where as GI docs are generalists.
Thanks for input. I have two specialists, a hepatologist I’ve been seeing since shortly after my diagnosis 12 years ago, and a gastroenterologist for 3 years who manages my Crohn’s. Almost scheduled for transplant 3 years ago but symptoms improved considerably and been manageable since. Just not as happy with Crohn’s Dr.