IBD affects everything.
Lowell had a Hickman central line through which he received TPN for nutrition, fluids when he needed them for dehydration, meds when he is nauseous, and used it at appointments for any other infusions. He has had several different lines, Picc lines, Central lines, ports. They get infected. He gets blood clots. When he doesn’t have a line, he gets dehydrated and then the nurses can’t find a vein and they poke him too many times. He can’t go that long without having some kind of line. It is almost Thanksgiving. We have been going to NY for the last few Thanksgivings, minus last year due to COVID. We were to go again this year. We were supposed to leave yesterday. Last weekend Lowell started having low fevers. He thought maybe he had Cdiff again. We tested that (BTW to do that you have to 1. Get the lab order from the doctor, 2. get stool sample collection stuff from lab. 3. Fill the collection cups. 4. Bring back to lab. 5. Wait a few days.) That was negative. Doctor ordered a blood culture because when you have a line, you can get a dangerous blood infection. Yesterday the blood culture came back and it was growing bacteria which meant he definitely had a blood infection and he definitely needed to have the line taken out. Sometimes he has had to be sedated to take lines out because It is painful and uncomfortable. This one is easier to get out and all the doctors we consulted with (GI, Infectious Disease, Surgeon) agreed it needed to come out ASAP. We went to the surgeon at 5pm. He was given a shot of a local anesthetic in the area. The line was pulled out. PTSD is very real, I will just say that, and it is a topic for another time. So, while the procedure took about 10 minutes, the real damage of the whole thing was anxiety, triggering of PTSD and that is far worse for both of us than the actual procedure. New York, right? Well, that has been postponed or canceled. Sam and Jonah are going soon in the hopes that Lowell and I might be able to go for a few days. If not, Sam will come home before Thanksgiving. I had several plans in NY as I have not been there in 2 years. I know people with #IBD understand what it is like to have to cancel plans so much. It sucks, it feels terrible, it is disappointing, embarrassing, sad, and makes me feel like never making plans again.
This is IBD. This is #crohns. This is a family living with a #chronicillness. This is just what 2 days of our lives can be like. We have had so many days like these. Too many to count. Too much disappointment, anxiety, getting the right doctor, making sure we are on top of everything, trying to just live life and walk the dog and drink coffee and go to the market and maybe see friends, while all of this other stuff looms and can happen at any time. While all of this is happening. Lowell and I struggle, joke around, fight over listening to the Beatles channel vs the Bruce Springsteen channel, cook food together, get angry, complain about waiting too long at doctor’s appointments, and try to have fun when we have the energy. I am thankful for the open connectedness of our relationship. But we suffer too much, and I hope others don’t have to suffer as much. Please support Connecting to Cure’s efforts to provide hope and reduce suffering for patient and families with IBD so they don’t have to #cancelplans all the time.
