What a mood I'm in

April 29, 2009

I just got an e-mail from an ostomy supply company, soliciting my business. I am trying so hard to live my life without fear, but sometimes I just fail. My mind gets tired of trying to process everything. I am terrified of having to live with an ostomy again. Terrified. I start thinking about it and I well up with tears.

I have had this box of ostomy supplies that I haven't known what to do with. I won't throw them out to the landfill. I put some feelers out there to see if anyone wanted them for free, but I didn't get any takers and I just haven't put much energy into calling other places to see if they want them. And so this damn box of supplies has sat in our hallway for a long time. And I hate it. I hate the box. This weekend we were taking some things to the Goodwill (that were also in the hallway), and my attention was drawn once again to that damn box.

Just writing about the box, I can feel myself getting angry and frustrated and scared. Right now I want to pick up the stupid box and stuff it in the garbage and then kick the garbage can a few times and curse at the top of my voice. Life was hell when I had my ostomy. I would not wish living with an ostomy on my worst enemy. It's not right and it's not fair that anyone would have to live like that.

And yet it hangs out there over me. My own little dark cloud. Dr. T's words, telling me that she will have to do surgery again and I will probably end up with a temporary ileostomy again, possibly a permanent one. And do you know where my thoughts go when I think about? I think about having a baby and holding him/her on my hip and having to worry that his/her little legs are going to mess up my ostomy bag. I don't even think about how happy I would be to have a baby; I think about how I don't know if I could find the will to live if I had to have one again.

Isn't that terrible? Today . . . Ugh, today I was wearing a long linen skirt that I bought when I had my ostomy. I bought the skirt 1) to hide the stretch marks that were on my legs; and 2) because it hid my ostomy bag well. But today as I looked down at my skirt, all I could think about was feeling the bag against me. I've gotten rid of a lot of the clothes I got to hide my bag because I couldn't stand to wear them again. But I kept some of them, because of the fear that I'll have to live life like that again. (Oh geez, we're out of kleenex and now I'm crying and have to use TP for my nose. Lovely.)

I don't know how to make peace with this. I feel like for some reason I need to be okay with living life with an ostomy right now. I also think that I'm a weak person because I would have a hard time living life with an ostomy. And am I valuing others who live full and meaningful lives but just so happen to have ostomies if I have these thoughts/feelings? Am I really being a colon-free bigot? Laugh if you want, but I really am beating myself up over these things. I really do feel like a failure as a human being because of this.

[Okay. I think I need to just take a step back here for a moment. Abby, get over yourself. You are taking yourself WAY too seriously here. You don't want to live life with an ostomy. NO ONE DOES and that's okay. (I think I just need to keep re-reading this paragraph over and over.) I think I've maybe been alone too much lately.]

I know this is going to be a really long blog today, but I'm not done yet. I'm also feeling anxious about my OB/GYN appointment tomorrow. I'm scared that being in the stirrups is going to bring back a flood of memories. (Sorry if that's an inappropriate visual to refer to, but that's what I'm imagining and it's freaking me out.) But as Christie reminded me, if I breakdown at the OB's office, so be it. I've earned the right to breakdown. (Thanks again Christie.)

I feel like there's a lot riding on this appointment tomorrow. This doctor, who I haven't even met yet, holds the answers to my future. Boy, am I being really melodramatic tonight or what? Just writing all this out is helping me see the error in my thoughts. But really, the doctor does have some important information for me. So here are some of the questions I want answered:

1) My surgeon is recommending a c-section if I get pregnant. Have you or other doctors here done c-sections on women with j-pouches (or other shaped pouches - same basic principle)? If not, would you be working in conjunction with my surgeon when it came time to deliver?
2) Would I be considered "high risk" because of my past experience? What does that mean for me as far as the pregnancy goes?
3) Studies I've read say 25% of women who have had a total colectomy because of ulcerative colitis end up being infertile. My understanding is that's because of scar tissue around the ovaries. Is that right? Does that mean that my eggs would still be there and we could possibly do IVF?
4) I'm having pelvic pain. Can you tell me if that's related at all to my reproductive organs? (And please don't dismiss this - the pain is pretty strong.)
5) We didn't have an autopsy done on our baby (big regret for me). Does that make a difference at all in how you would view a pregnancy of mine? [I don't know why I can't let it go that I don't have definitive answers as to what caused Harper's death. I feel like I need definitive answers. But would they make a difference for me at all? No.]
6) In your opinion, is it okay for me to have drugs such as Versed, Fentinal, Cipro, Flagyl, Mesalamine and Celexa during pregnancy? [Boy, for a woman who was eating as much organic as possible, not doing any caffeine and trying to avoid taking even Tylenol during my first pregnancy, this is quite a jump isn't it?]
7) I know that because I don't have a colon, my body is not able to absorb certain vitamins as well as before (or some possibly at all?). Are there supplements I would need to take even more of if I were to get pregnant again (obviously already taking prenatals into account).
8) My UC developed as soon as I got pregnant. Do I have higher chances of another autoimmune disease developing with the change in my immune system caused by pregnancy? (Don't forget to mention the joint pain that started with the UC - Are my chance of full blown arthritis developing greater? Chron's? Vitiligo?)

Okay. I think that's all I can come up with right now. If you've read this entire blog, I'm impressed. Even I'm bored with myself right now. (Do you hear the different tone in my "voice" tonight? What's up with that? What a mood I'm in.)