I feel like a science project...

So, this is probably not going to be the most optimistic post, but forgive me. To err is human. Then again, it may turn out to be more hopeful than I think as I am just starting to writing...

Yesterday, my home health nurse Tina came to check up on me. Things were good, the big news being that my heart rate was finally below 90 (!). She said she was pleased with how I was doing, and barring no complications between now and then, she is going to discharge me after next week's visit.

Before she left, we were discussing how I was handling things, including my colostomy, and she asked if I had had any breakdowns. I have, including one in the hospital the night before I was discharged; I actually had to take some Xanax to calm down and go to sleep. (It was the best sleep I had had in a long time.) A lot of that meltdown was actually from having not had any sleep the night before, but it did have to do with my emotional state as well. Then, I was mostly upset over the fact that I could have died rather than dealing with the colostomy. At that point, I still felt disconnected from it. I've had some emotional breakdowns here and there, but mostly I have been trying to be strong and positive and take-charge. Then again, I still don't think I have fully processed everything that has happened to me.

Tina said she thought I was also doing so well because my colostomy is only temporary. Then she told me the story of one of her patients who discovered she has advanced colon-rectal cancer and had to have emergency surgery to get an ostomy...all the while she was in her 40s, had just moved to be near her fiancé, quit her job to be a stay-at-home wife, and was planning her wedding. (I do believe it was her first wedding, too.) In her case, her ostomy was permanent, and she struggled to deal with this new "normal."

I admitted that one of my fears is that someday I will have to have a colostomy again...and that it will be permanent then. Now, I know having an ostomy is not the worst thing in the world and that they save lives (including mine) and that plenty of people have full, happy, active lives with ostomies. In many cases, they give people back their lives. But they are...gross. And awkward. And weird. I feel like a science project.

I don't feel pretty.
I know that is silly and shallow.
But I think it is important for women to feel beautiful, and these days I don't.
And it's not just the colostomy--so much has to do with my health and feeling trapped in and disconnected from my body in so many ways.
I know things could be so much worse. Much, much worse. But I still think my feelings are valid and understandable. And, no, I'm not doing this to fish for compliments. I'm usually fairly confident, but my self-esteem has taken a beating over the last few months, and I am just being honest.

When I was in the hospital and when I first came home, I couldn't even lift my legs onto the bed. I had to get someone to help me sit on the toilet and change my clothes and wash me off. I hadn't really noticed how skinny I was until I got home and stood in front of my full-length mirror. I've always had chicken legs, but now they are so much worse. My arms seemed to be the same width from wrist to shoulder--and I have very skinny wrists. (They often had a hard time drawing blood from me.) My chest reminded me of being in middle school again, and I think even my butt got smaller. I was skin and bones; I had lost, at most, more than thirty pounds. (The good news is that I've gained at least twelve back.) Many times when I was in the hospital, I didn't brush my teeth or wash my face because I just didn't have the energy to stand up and do it. I didn't wash my hair for weeks because I was too weak to take a shower...and I would have to have everything taped up anyway to get into water. My hair started coming out then. It's still coming out. I spent so long growing it out and keeping it trimmed every six to eight weeks (usually six), and now it's coming out. I didn't get to shave my legs for weeks, and though I don't shave every day, I do at least once a week. I kept apologizing to the nurses for my hairy legs and how chipped my toenail polish wash. My skin is dry in several places and flaking off; Tina says that is probably because I won't absorb as many nutrients or water as I did before. Because of the prednisone, I have a moonface, and my skin is breaking out, and I know it will take months to go back to normal because it did the last time this happened; Zach says he doesn't notice, and I believe him, but I do notice. Plus, my appetite has returned with a vengeance, and I'm afraid at some point, between all the eating and the Boost/Ensure-drinking, I will surpass my pre-sickness weight. (I know, I know, there is still a lot to gain before that, but I will be on the protein shakes for weeks.) I have this scar down the center of my abdomen that is still somewhat swollen and indented and red with healing, and I am sure I will always have it. My belly button is not the same belly button I had when I was born--BUT, at least, I still have one because a lot of people lose theirs. I've worried about being dehydrated and my heart rate and eating the right things so I don't upset my already fragile semicolon. (Thankfully, my tummy has only been grumpy twice--both times I tried a legume.) My clothes don't fit the same because of my weight loss and the ostomy, so even the clothes that typically would make me feel better don't. And then there is the ostomy and all the issues that come with pooping in a bag.

Because that's what I do right now: I poop in the bag. I guess it's not much different than a baby's pooping in a diaper (something I have told myself), but it isn't the most pleasant situation when you are used to going the normal way. (I am so thankful to God to have normal stool now and no pain or passing of blood, but it's still weird and I am glad I won't always have this.) I mean, part of my intestines is on the outside of my body (my stoma a.k.a. Mr. T. Brixby, Attorney-at-Law, the silly name we gave it because I read this is part of the coping process). And it passes when it wants to pass. See why I feel like a science project? At least it is not as noisy as it once was, but I do worry about that when I go back to work and am around other people; I don't want other people to know I'm passing gas or pooping right then. I also have to worry about emptying it and its leaking and people's noticing it under my clothes. I've only had one leak and that was my first night home, and it happened because I didn't get the clasp fully closed. It was horrible and embarrassing, and I ruined a pair of pants I've had since ninth grade. Thankfully, I've since learned how to empty it directly in to the toilet and to get the bag cleaned up more quickly and fully sealed. I won't even get into dealing with intimacy. I also have been walking a bit more hunched over because the appliance (that is, the wafer and bag that cover my stoma) makes me feel heavier at my abdomen, so my back has been having spasms since I usually stand up very straight. (The spasms are also likely from having been on bed rest in a hospital bed for so long.) The wound nurse at the hospital showed me how to change my appliance, which was a nerve-wracking experience in itself, and she ordered me a trial pack of supplies that arrived shortly after I got home. At first, I really liked them until I got to my third changing and noticed that I had a odor coming from the bag. So then I was concerned about being smelling and leaking, so I changed everything to be on the safe side. Then the fourth bag was smelly. Turns out, it was a defect with the lining/thickness of the bags and their interaction with something in my poo--nothing to do with a leak/hole though it was still somewhat stinky. (My mama and Zach said they didn't notice any odor, but, once again, I did.) Tina provided me some supplies until mine came in from Liberty Medical (which ended up not being in my network, so I had to cancel), but I realized that after she left that they didn't fit my stoma. Thankfully, I got in some samples from another company, so I switched brands since they worked much better. It also hasn't helped that I had to go through the ringer to get supplies because no one explained the process of ordering them, and now I am worrying that our insurance isn't going to cover everything I got because I requested a prescription for enough to last me until my reversal surgery rather than a month.

I just feel weird a lot of the time and not like myself.
I feel more like myself now that I can do things on my own and shower and wear normal clothes and cook and drive.
But I still feel like a science project.

And I am still not well.
And I worry that I won't stay well and will have to go through all of this again.
I'm afraid it will be worse next time if there is a next time.
I'm afraid I will still have a reaction to the Remicade or that it will stop working or that something will go wrong with my next surgery.
I'm afraid of my reconstruction surgery. (I didn't have time to think about this one. A thing I am really dreading? Having a tube down my throat again when I wake up. I don't even know if I will.)
I'm afraid all of these drugs on which I have been/will be will cause me worse trouble down the line.
I'm afraid I will have to have a permanent ostomy someday. Most people who have had one colon surgery end up having another. I guess I am afraid that I won't have as many options as I had just one year ago.

I know I have to keep holding onto the belief that God will heal me and heal me for good even though the world says Crohn's Disease is incurable. Nothing is impossible with God. He is able to do immeasurably more than we can ask or imagine according to His power that is at work within us. (Ephesians 3:20). What does this mean to me? I don't even have to ask or imagine what He will do though I have and others have on my behalf (THANK YOU!); it's all been decided; He has planned out my days and promised me hope and a future; I just have to surrender and trust and believe and let God go to work in me. He didn't save me a month and five days ago for funnies. If anything, my fears will stand in the way of my health and thus accomplishing my purposes in life. It's something I am still working on: to not worry or stress or fear. I need to find my confidence in Him. I just need to believe.

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  1. Oh my gosh, this was a great post. Glad you wrote about your situation. I am so sorry for what you are going through!


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