I thought I’d describe a day in the life, while I was home from the hospital but before I really started to improve. I realized that if I had a friend going through a colitis flare and I knew nothing about the disease, I would have a hard time grasping what it’s like, just as it’s hard to grasp stories from the news that I know are real, but take place on the other side of the earth. Just saying that there’s discomfort and I use the bathroom a lot doesn’t quite explain the severity of this flare. So here goes:
Coming out of the hospital, I weighed 104 pounds, and my healthy weight is about 120. I had also been pretty much in bed or sitting all day long for those two and a half weeks. So upon arriving home, I was in a very weakened state, and I still am. In fact, I weigh about 98 pounds right now, and climbing stairs is slow and difficult. I continued to do a lot of sitting, napping, and lying down once I was home, partially because I was weak and tired, and partially because walking around stirred things up (in the colon), making me need to use the bathroom. (This is still the case, but not nearly to the extent that it was.) So the best thing to do was to not move….which is difficult, when I need to meet basic human needs like prepare food. This was really frustrating. (Sure Roxanne, just try and cook some eggs.)
As I said in another post, mornings are the worst time of day during a flare, which my doctor said he finds is very common in his colitis patients but doesn’t know why. (Note: “doctor” refers to my gastroenterologist, while “chiropractor” will refer to my holistic chiropractor). In the mornings, I used the bathroom more frequently and just felt downright miserable with pain and discomfort, both on and off the toilet. The rest of the day was better, but there was really no time that I didn’t feel some sort of pain or crampiness or unsettledness. There was no relief from this, although warmth from a heating pad or hot water bottle sometimes helped a little.
My pajamas and day-clothes were one in the same, and I wasn’t depressed, per say, but I was really down and was worried. On Facebook, I asked people to send recommendations for feel-good movies, because I couldn’t handle anything else, and I needed to fill the day. (Now I have this sweet blog to keep me busy!) Thank god for Netflix, wifi, and my laptop.
I usually had to go to sleep feeling like crap, too, and I always got up a few times during the night needing to use the bathroom. This was not only annoying, but healing occurs while one is sleeping (my chiropractor told me this, and I can believe that easily, but here’s an article on it too), and my sleep was being interrupted.
Fortunately, my day is much different now. For one thing, I started to sleep through the night, which gives me more energy during the day. I actually feel alright in the morning, and the rest of the day just gets better. There is now a lot of time in the day when I feel pretty much normal, and I’m using the bathroom less, and when I do go, I feel no pain and a lot less discomfort. I eat three meals a day and drink two smoothies a day, so my appetite is picking up, and hopefully I’ll start to gain weight soon.
For awhile, I was scared that the holistic treatment wouldn’t work out and I would need to get surgery. It’s not just the removal of an organ that I don’t want; it’s the fact that after the surgery, I would still be using the bathroom probably four times a day! (although at least without the discomfort.) The surgery is a two or three step procedure, with three to six months between each step. At first, they would remove my colon and for the next few months I would need to wear a bag on my side, which would fill with poop while my insides heal a bit. (I would have to empty this as the day went on…groooosssss) The next step would be to bring my small intestine down and surgically make it into a pouch shape – this would be my new “colon,” although smaller, which is why I would still have to use the bathroom more often than the average person. That would not improve at all, whereas I could also continue to wait out the holistic treatment and try to heal my colon. Unfortunately, I was only improving slightly, and at a snail’s pace, with so many ups and downs.
As a dear family-friend always says, I’m glad I’m me. I could do without this flare, but if I was someone else with it, I might have given into surgery! This flare has been difficult to live with, but it’s been a learning experience too. I hope that this blog will be seen by other people with colitis feeling trapped by the conventional treatments, because there’s another approach, and with patience, it will work.