Waiting

Physically I have felt like garbage the past couple of days. Last weekend in particular was harsh and I found myself experiencing a different kind of pain than usual. This time it was more like a steady, sharp pain. It was far from excruciating but the level of pain changed as I adjusted how I was laying. These are often the pains I worry about because I have had similar pain experiences with all of my bowel obstructions. Whenever you twist and turn and your pain changes, you immediately think your bowel might be caught in a twist as well. At least that's how it's been for me in the past. Luckily I felt better after two days of laying in bed.

But then I have other pains usually in the early morning hours. From about 4 am on I am subject to a lot of cramping and my insides don't seem to settle down until anywhere from 10 am to 2 pm. During that time it is frustrating because I am in and out of sleep and I often cannot get more than a half hour of uninterrupted shut eye. Lately, however, I've been able to get on with my day as early as 9 a.m. which is much better than sitting around all afternoon waiting for things to quiet.

So here I am, waiting on Tysabri to take effect. This third infusion was supposed to be the magic number and I suppose in a couple weeks when I see my GI they will conclude that it isn't offering me any therapeutic benefit. Considering I am still on 40MG of steroids and unable to taper, I would have to agree at this point. We still do have a few weeks before we totally give up on it and I am trying to remain optimistic, but right now that is certainly hard to do. I imagine I should feel a significant improvement in my life like I did on Remicade and I am so far from it that there is no question in my mind this drug isn't cutting it at the moment.

The good news, if any, is that I haven't experienced any of the horrible headaches I got after all my other Tysabri infusions. That's quite a relief. But yes, that's the only good piece of news I can muster from this.

Anyway, on Thursday I went to support group again. I really haven't gone back since the first time, mainly because I wasn't feeling well and I was kind of discouraged with being the only person in their 20's at the meeting. But I figure if I have nothing else to do, I might as well socialize with people who are the closest to understanding what I am going through, even if they are in their 50s, 60s, and 70s. And, well, they are old people. And you know what? Sometimes old people say some funny shit.

I feel like often I offer more advice to others dealing with this then I get in return in the support group. Maybe this is because I am hung up on the fact that I have yet to meet another person in their 20's who is dealing with this. With this support group in particular, everyone but me had their surgery because of cancer. I try to relate to everyone but it can be hard. The reality is that most people don't die from Crohn's. I often wonder if the decision to have one's colon removed and opt for an ostomy is any easier when you know the alternative could be death. Either way, removal of the colon isn't always the ONLY option, but for cancer patients, it's often a better one when considering how it will aid doctors in administering chemo and/or radiation.

Sometimes I feel like a hypocrite when I offer my thoughts on having an ostomy to these people. I mean, how can I tell someone who is clearly distraught about it that it's not the end of the world and it will get better, all while my colon and rectum are still with me? Damaged they may be, but I have not had to endure their loss yet and that is a huge step that many of these people have had to come to terms with. Of course it's easy for me to say you can get through it because I have the hope of reconnection. For them, the decision has been made and there's no going back.

I don't know, as much as I tell myself I don't want to go to those meetings, I enjoy it. There's always a few married couples and one of them is supporting the other in their adjustment. The guy that started the group did it five years ago for his wife who had cancer. Then you have two friends who may come together just because it's their first meeting and they need the support. There's people contemplating this route surgery-wise or have it planned already who have no idea what to expect and desperately hang on every word spoken as to get any clue about what life might be like afterward. And then there's just individual people, like me, who live their lives because their life with an ostomy is a hell of a lot better than it was before. And after the initial shock of the surgery wears off, I think that's something everyone can agree on.

Another thing I realize at these meetings is that you just never know what people are going through in their lives. I think we sometimes assume that someone's misery in their life is going to be written across their face and the second they are in a crisis it will be evident. Sometimes I worry that people forget how sick I still am because the physical reminders are not so marked anymore. I guess my point is just to give people the benefit of the doubt. If you looked at me, you would never know I have an ostomy, never know about the past year of my life and the struggles I still go through every day. And while I try to never let my illness affect how I treat others, there are certainly times I have probably come off rude or curt to someone I've interacted with throughout my day simply because I did not feel well. Maybe I'm trying to say that I'd like to think most people in life have good intentions and you just never know what anyone is going through on a particular day.

I could easily throw up my arms right now and be sad about Tysabri not working. I won't lie, every day I get upset at least once about it. But the second my episodes are over or I know that I'll be okay to leave the house, I forget all about the pain, even if it was just a few hours before. It's pretty amazing to think how quickly you learn to adapt. The bottom line is, it's much easier to live your life when you can than to spend it being upset about the several hours a day that don't go right. Right now, I have about eight hours a day where I feel okay. And I'll take them happily cause it could be a lot worse.

Well, this was a bit all over the place but a lot happened this week that I am still digesting. Get it?