File this entry under: Coping/Support
You guys know I’ve been dealing with diversion pouchitis (DP). I have to say, I thought I was prepared for DP. After I heard it was a possible complication after diversion surgery, based on my unlimited history of Murphy’s Law type luck, I just assumed it might happen. And it did. I also assumed that DP couldn’t be nearly as bad as normal pouchitis. Turns out, it’s worse. When I woke up a few weeks ago to a significant amount of blood through my disconnected J-pouch, had my PTSD freak out, then sought treatment in the form of compounded Short Chain Fatty Acid and Rowasa enemas, I thought I’d be fine and respond in the same way regular pouchitis responded to antibiotics. Not so. Although the enemas provided some relief, I was still passing chunks of mucus and blood, getting increasingly nauseous, incredibly fatigued, and had bad pelvic pain. I also noticed I’d lost some weight since the June surgery and when I weighed myself realized I’d lost 16 lbs. without trying. So, I informed my doctor. I had a scope to confirm the pouchitis and dilate a stricture so I could actually insert the medicine into my arse. I kept waiting to feel better. I had blood work and a stool test done locally. All looked good. I was in contact with my doctors, so I felt like I was doing everything right, except getting better. After an intervention by two of my chronically ill BFFs, my husband, and my mother, I decided it was time to bring in the big guns and make a trip to Cleveland Clinic. When some of the sickest people you know who also happen to love you dearly sit you down, tell you that you need to realize how sick you are and take better care of yourself, you take notice. When all your supporters threaten to come physically take you to the ER if you don’t do something, you decide to get off your sick ass and make a decision. But the thing is, I felt like I was doing something. I was calling my doctors. I was getting scopes and ass-stretches. I was getting blood work. I was taking my meds. I was just too damn tired to do much else, and what else was there to do? Go to someone who knew how to treat my bionic ass.
When I got to Cleveland this week and had a scope in every digestive orifice, I found out the pouchitis, though getting better, was still active. My ostomy was too active and I was losing fluids and nutrients, so I’m taking Immodium and am on a diet plan to help me retain potassium. I was also not eating enough or retaining enough protein. I prefer to eat mainly veggies, so when I passed the recovery stage and could start eating veggies again, I guess I OD’d. The thing is, I was making a conscious effort to eat protein. Evidently, all the fiber was making my output too frequent and hindering absorption. My anti-inflammatory kale smoothies were a big fat fail. What got hammered into my head this week was this: What’s healthy for most people is not healthy for me. Because I have no colon. Because I have a possessed J-pouch that though disconnected, is still trying to kill me. Because I have a loop ileostomy and do not absorb nutrients the way I used to, or the way other people do.
I think what I struggle with most is accepting that I am sick and that as much as I want to fight against it and not let it affect my life, that’s not a very realistic plan. People are always telling me to slow down or “don’t overdo,” but I feel like the majority of my life is spent at a doctor’s office or on my couch with my wiener dog. I have big plans, shit to do and life to live and I don’t want to spend any more time than I have to watching re-runs of “Frasier” and “Seinfeld” no matter how hilarious they may be. I want to get out in the world and make a difference and have adventures. I want to work so that my amazing husband doesn’t have to support both of us. Even through doing that stuff may not be in my best interest physically, I simply can’t go on mentally if my life consists only of couch and channel surfing. I need my experiences and my worth to be more than that. I do try to take care of myself, but I’m not good at realizing how sick I am sometimes. I’ve spent half of my life with a chronic illness with little respite-My perception of what it means to feel well is off, my pain receptors are off. Everything is just dulled because I’m used to it. That, I don’t know how to fix. One of my biggest fears is being a complainer or being weak, so I just try to tough it out and deal with it until it becomes very obvious that I’m not doing well. I’ve tried to change my lifestyle to accommodate my illness. I haven’t had a full-time job in 3 years. I haven’t gone back to grad school yet, despite wanting to so badly. I haven’t ridden a horse in 3 years because it hurts my pouch too much. There are plenty of things I do not do, and I don’t want to add more to that list. I want to put things back on my can-do list. Chronic illness gives me more of a zest for life than I probably had previously because I know how precious those moments are, so you can be sure I’m going to take advantage of them. I’m not going to be sorry for trying my damnedest to have a full life, even though it’s a struggle.
How do you guys deal with balancing chronic illness and life? Do you struggle with relationships with healthy people who expect you to do more and feel guilty when you can’t? Do you push yourself too hard to try to enjoy life despite your illness then end up paying for your day of fun? How do you get others to understand that going to a yoga class and a low-key game night is a big day for you and that even though you slept all day the following day to recover, you’re still wiped out?
While you’re mulling over that, let me tell you what I learned at my appointment:
Loop ileostomates need meat and little fiber. Even if you are a vegetarian and get protein from things like beans, beans may increase your output and hinder your absorption, so keep an eye on your output and slow your roll on the kale. Sorry, kale.
Loop ileostomates need lots of electrolytes and very little sugar. Some patients are instructed to drink low-calorie G2 gatorade, but for some, it’s not terribly helpful, and you need a more potent solution like Pedalyte.
Loop ileostomates need lots of potassium because we lose it when we get dehydrated. Eat bananas, potatoes, try tomato juice if it agrees with you, and drink your Pedalyte!
Don’t be afraid of Immodium. I never took it because I was too afraid of a blockage. (If you’ve had a blockage you are familiar with my paranoia.) Pro tip: Being dehydrated sucks. It makes you weak, and messes with your memory and mental function. Take the damn Immodium.
I’ll try to be better about forcing protein drinks down my throat and gagging down some meat even when I’d prefer a big salad or a kale smoothie. I’ll also try to spend less time traveling, going to concerts, and trying to change the world, but no promises there