Hello All… I’m looking for support/advice on how to better support my boyfriend of 5 years; he is amazing man with Primary sclerosing cholangitis, Ulcerative colitis, venous stasis, anemia, and now we think Cirrhosis.
He was treated for PSC and Ulcerative colitis in his teens, he’s now 29.
We’ve been through hospital stays for back ups and flair ups, we’ve had procedures to clean out his ducts (including having stints put in and taken out), he’s on a handful of medications (including prednisone) and vitamins, he works out daily, we keep a healthy lifestyle of clean eating, I’ve cut dairy and wheat (for the most part), low salt and sugar diet… he feels good 99% of the time, but we cannot change his blood test results.
I understand his condition is stuck with us until a liver transplant someday (which is looking to be sooner rather than later as we’re being seeing more often for ERCPs and his doc is now bringing up topics like bile cancer, colon cancer and transplant programs more frequently) However, I want to know what else I should do to help us.
Our diet on a typical day is as followed: His breakfast of Cheerios and lactate free milk and a cup of juice with his meds. I prepare his lunch for work- fresh fruits, something along the lines of, 3 strawberries, half of a nectarine,1 tangerine, handful of blueberries, and a small piece of melon. A sandwich of spinach, turkey breast, gluten free bread, cheese and dijon. A bag of Sun Chips (her refuses healthier chips) String cheese or soy yogurt sometimes in exchange for celery and peanut butter. Clif bar or gluten free power bar, and a cookie or sugar free vitamin C lollipop. He’ll drink water all day and a electrolyte sports drink (natural). Do 30 minutes of weights and cardio work out, have a protein shake and come home for dinner. Dinner- salmon with a glaze of kale, bell pepper, ginger, onion and olive oil. A salad of tomatoes, mushrooms, cauliflower, spinach and olive oil. Rarely red meats. Maybe a Tazo tea if he is tired of water, otherwise we’ll have water. He loves dessert so he’ll sneak a cookie or sugar free fruit bar. An hour before bed he argues for a PB&J (I prefer he didn’t eat late but I torture the poor guy enough with all the veggies). I think we eat well. What can I change in his diet? He won’t eat it if it’s nasty. I force feed him the “healthy junk” enough as it is but I can do more if it helps.
He sleeps from 11:30 pm - about 6:30 am. Weekends we have his daughter and try to have fun at the park, swimming, bike riding, etc.
He is a very stressful prone person, he has a 6 year daughter and a stressful situation with the mother. His work is intense and he often works from home at night. We’ve agreed that now it not the best time to plan a wedding (although our families give us a hard time as we own a home together, have endured his hospital visits and the bills that follow and raising his daughter) or try for children (last night he brought up the question of all his meds interfering with a child’s development, it broke my heart to think he has to have those thoughts in his head).
Now, that you know more about us… please give your advise, I try to be supportive and positive as much as possible. He tells me a lot of how he feels but he also tells me ‘I just don’t understand how he feels’ and he thinks ‘why me’ at which point I just tell him ‘we’ll be OK and we need to be thankful we can afford the pricey meds, and feel blessed our lives are good outside of his condition’… I just try to stay positive although I am scarred of what is to come. Lately though as his condition progresses he has begun to be a bit more closed off to me in discussing his thoughts and how he feels. I flood myself with information on his conditions, I feel the more I know, the less fear of the unknown. Again, lately he feels the exact opposite and prefers to not acknowledge it if possible, dealing with it as it comes along. How can I better support him without stressing him out more? He’s absolutely correct, I don’t know how he feels. However, I’m willing and wanting to know how he feels, so any advice is useful!
Thank you for reading…