Crohn’s and liver disease

[shoshchana]

Does anyone with CD have NASH/fibrosis ?

I have had Crohn’s for over 30 years and now last month diagnosed with NASH/fibrosis

[MrsEndeavourMorse]

Hi Shoshchana,

I don’t have diagnosed liver disease, but I do have a type of portal hypertension which has led to a build up of free fluid in my abdomen that has to be drained.

Pre-pandemic I had it drained twice a year, up to 3-4 litres at a time and it was always blood stained bile…the nastiest shade of green going 🤢

I’ve been fortunate to have had 3 MRI scans in the last year and it would seem the fluid has ‘disappeared’ 🤷🏻‍♀️ However, it doesn’t feel like it’s gone anywhere - I look like I’m in the early stages of pregnancy 🤦🏻‍♀️ All tests have shown that my liver isn’t leaking so really bizarre. So while not liver disease, living with liver disease symptoms.

Oh and I’ve had fistulalizing, cutaneous, metatastic Crohn’s Disease for almost 25 years, since I was 15.

[shoshchana in reply to MrsEndeavourMorse]

Wow that sounds miserable, Im sorry your going through this. Is there any reason that they are giving you for the bloating? Since there is no fluid. All of the things that come and are connected to Crohn's I would have never thought of having issues with liver disease, of course this I think has something to do with being overweight. As we are both seasoned Crohnies, maybe going through new attacks on our bodies in some ways make it easier to adjust. I hope your CD is somewhat under control at least not severe.

[MrsEndeavourMorse in reply to shoshchana]

Hi Shoshchana,

I’m so sorry that I didn’t see your reply sooner…swapped to a new phone and it’s not gone as swimmingly as the lady in the phone shop told me it would be 🙄😂

Since I last posted, the Gasto team have put me back on Humira (Well one of the new versions after the patent ran out on the original) alongside the methotrexate jabs. The Crohn’s has sadly returned in the large bowel, but because I’ve got the olde ileostomy, & add in the Pandemic, & it wasn’t spotted straight off. But, hey ho, these things happen & at least we (hospital and me) have a plan of attack!

Regarding the bloating & fluid, they’ve not come up with a definitive answer but think it’s because I had a Saddlebag Thrombosis along with clots (DVT and arterial) in both legs during one particularly frightening flare, & this has damaged the IVC and hepatic veins, leading to the portal hypertension theory (Fingers crossed I’ve got that the right way round…I should know it off by heart after all this time!).

It’s hard trying to explain to people that Crohn’s doesn’t just affect the digestive system, & it always seems like the complications get weirder and weirder 😕