Wednesday, April 30, 2014

Surgery and two hospital stays

The day after Easter I had the surgery, the one I didn't want but really did need. I am now a person without a colon. Weird.

I did well after surgery. The surgeon went in through the old scar from January - although it goes further up this time. Surgery was on Monday and I was released on Friday. However, Friday night I started having some bad pains and by Saturday morning it was almost unbearable and my stomach was very bloated. My dad took me to the local hospital and after spending the whole day in the ER and a few staples taken out, they admitted me. Looked like I possibly had a slight infection but they were not sure. Luckily I was admitted because after a very miserable, painful Saturday night (I had a great nurse who came every 2 hours and gave me pain medicine and just took good care of me) the doctor came Sunday morning and took a few more staples out further down the scar. At this point nothing had come out of my ostomy bag in over 24 hours. I was now getting a fever, headache, nausea and horrible horrible pain. The second he took those staples out, that ostomy bag filled up FAST.

There had been so much fluid building up in my stomach that my intestine was so compressed it was blocked. So all night long I was backing up. It was lucky I was at the hospital because that could have gotten a lot worse very fast. I wish they had popped the lower staples sooner but it appeared that the fluid was higher up so they did what they thought was best. After a couple more days of monitoring, pain medication and antibiotics I was sent home on Tuesday. And I am doing better. I feel better than I did after surgery number one which is promising. The infection was unfortunate but with colorectal surgery it's actually fairly common (at least that is what I was told)

I had a follow up with my surgeon today. She did tell us that taking my colon out was the right move. Once she got it out and could see it - well… it was bad, real bad. There was so much active Crohn's Disease there - none of it was healthy. NONE. I was in pain because that organ was still in my body. She thinks my prognosis is great and she's excited to see how I do from here on out. She was almost giddy. Her excitement about it got me a bit excited too. How different will life be now? How much better am I going to feel now? I haven't been pain free in close to 30 years… I am so excited to see what that feels like. :)

For the foreseeable future, I have an ostomy bag so I am going to have to learn how to deal with it without being so self conscious about it. I am looking forward to the surgery pain easing off so I can see if I am really pain free now. I am looking at another 4-6 week recovery and no lifting the kiddos again but I know I'll have help.

I am going to continue to try going gluten free to see if it helps keep my inflammation at bay. The doctors don't think it'll do anything but I don't see any harm in trying. Keeping my inflammation at bay is a key component here. If I can keep it under control then in 6-12 months I could have another surgery…. one that could put me back together with NO external bag. That's a surgery I desperately want. I don't want this bag forever. I want to be "normal"

Monday, April 14, 2014

A change of scenery is always good

I'm on a little mini break as we speak. It's late so my friend is in bed already but me… being the crazy night owl even though my kids still get up at the crack of dawn… I'm still awake.

Just being somewhere new and not spending so much time thinking about what's going on with me has been a relief of sorts. I wish this trip was longer but I have to get back for my next dumb-ass doctor appointment on Wednesday morning so we have to leave tomorrow.

I know there is a very large part of me that's still depressed about everything but I think I am hiding that part quite well on a daily basis. While some may think hiding it is not a good idea it works for me right now. I can't be that person. That sad, mopey, depressed person because I, on the whole, am not that way. I don't like being that way or feeling that way.

The change of scenery has been good because, for the first time since my procedures I have not cried once. Quite possibly this is because I have spent very little time alone and I try not to cry in front of anyone if I can help it at all. But quite possibly because I just needed to get out of my house and out of my daily routine.

Now I just need a weekend away without my kids. I love them dearly but that would be quite a relaxing break indeed :)

Wednesday, April 9, 2014

Friends and Faith and Prayer

I got to see my friend Tasha this week. She is one of my best friends, like a sister to me, and is away for work in Paris for a few years. She came to town for a quick visit and it was so incredibly good to see her. I miss her already but we had some good quality time together and I am just overjoyed that I got to spend time with her. We talked, laughed, were goofy together - all the things you love about a best friend. Our time together was too short but it was better than no time at all! She'll be back in August for her next visit and I am already counting down the days until she returns :-)

Tuesday she saw my posting on Facebook about how I was feeling about my doctor appointment, surgery (or lack of) and got me out for some much needed time together. We ate, drank and sang karaoke. I talked to her a bit about how I was feeling about it all, about the options and a few other things. She had some good advice and she gave me some things to think about.

My other sister-type best friend Kacey has suggested a healing service at church more than once. I am a bit apprehensive about this for a few reasons.

  1. I am still out of my comfort zone with church in general. 
  2. I don't really like attention on me when I am in a situation where I am shy.
  3. I am not quite sure I really believe that people praying for me can actually heal me.
Tasha pointed out that it couldn't hurt and that she does believe in the power of prayer. She had a good story about this as well. Which reminded me about the time Kacey said a prayer for me to help my pain go away - and it did for a few days. At the time she did not tell me how she prayed I would feel. But I felt exactly the way she prayed I would. Probably not a coincidence. A skeptic would say I told her how I felt and she just said that's what she wanted me to feel. But… I know Kacey well enough to know that she doesn't lie. And especially not about something like this. She's got this crazy awesome faith that I just don't know that I'll ever have - not in the same way she does. It's something I am kind of in awe of and admire about her. Anyway, I suppose Tasha is right. It couldn't hurt to go to the service. However I am not sure it would work if I didn't believe that it could and I am only probably halfway there. I want to believe it would and only because of that one instance do I think there is something to it. But I feel like I would be uncomfortable with attention on me like that.

I guess one way to not be so shy and uncomfortable in a situation is to just do it. I haven't been scared off from church yet. I am taking everything in but it's taking me time. I am still a bit shy at church but can feel myself getting more comfortable the more I go. I do enjoy it and wouldn't go if I didn't want to be there. I mean, really, I am not getting out of my pajamas on a Sunday morning for something I don't want to do. I guess I am just waiting for that point where I just have this faith and believe everything I am hearing/reading/observing. It's coming but it's coming really slow.

I am just struggling a lot with the options I have as far as the Crohns is concerned. I'll know more after my appointment with the surgeon on Wednesday but the options presented to me thus far are:
  1. wait and see - keeping the stoma (and my daily pain) and going for repeat colonoscopies to see if I heal or,
  2. remove my colon and get a lovely permanent illeostomy.
Neither of these options seem good to me and I feel like no matter which I chose, I'll regret it in some way. It feels like a lose-lose situation to me. However, if I can gather up some faith then maybe, maybe, a healing service could help me. I guess you never know. I just don't know how to believe that it can happen - even with the little bit of proof I already have to back it up. I've got two important people in my life suggesting I give it a try - maybe I should listen.

Sunday, April 6, 2014

Some days are harder than others

Well, no surgery for me. I "failed" my tests yesterday and am not cleared for my reversal. Three months of complete colon rest and the damn thing still looks awful. I still have an lots of inflammation, scarring, polyps and an abscess. I've done everything I am supposed to do. I've even been giving the gluten free thing a try. Yes, I am still in pain but not as bad as before - although if I were to be reconnected and food was to pass through my colon again I suppose I'd still be in and out of the hospital.


I'm sad, angry, depressed… and a whole lot of other emotions I have yet to identify. If I think about it too long, talk about it for even a minute, I start to tear up or cry. I was not expecting this. I was expecting them to clear me for surgery. I want this ostomy bag off of my body. It's simply not fair. I've been through enough. I know I've said this before but really, REALLY, not sure how much more I can take and keep my sanity. More than ever I am incredibly grateful for the people I have to lean on.

Stephen was so good when we got the news (thank you so much hun, I love you). I tried so hard not to cry at the hospital. He didn't say anything, just held my hand and was there for me which was exactly what I needed. He really is a terrific husband. The nurse said a lot of things that I thought were nice but really, she didn't understand. Yes, I know I have a great husband and wonderful children - and yes I am happy to have them in my life but right now… right now… that's not what I need to hear to make me feel better. Let me be upset about this news because, no matter how minimal it may seem to you - it's devastating to me.

This issue sounds so trivial when I think about what other people have to go through but right now, it does seem like the end of the world to me. Right now, in this moment, that's how I feel. Those who know me well, know how much I was looking forward to this reversal. It may have only been a few months of the ostomy bag but if you ever have to live with one… you'll know that a few months seems like a lifetime. April 21 was my light at the end of the tunnel and now… who knows.

I have an idea what the surgeon is going to say at our appointment on the 16th. I'll put money on it if anyone wants to take that bet. She's going to tell me that this was an unconventional treatment and she was never sure it would work. She's going to suggest I remove my entire colon. I am not ready for that but… I am also not ready to live in limbo and have a colonoscopy every month to see if maybe, MAYBE, I've healed enough to get the reversal. If I haven't healed after three months so far… then why would another month be any different?

I don't want this. I wish so much that I didn't have this disease. How much more do I have to go through?

I don't usually use names when I am doing the whole blog thing but screw it….

Thank you Kacey. You have no idea how much I just needed those hugs today (I'll probably need a few more in the next couple weeks). I rarely cry, even a little, in front of anyone and that may not be the last time so hopefully that's ok. You've been there for me so much lately and you have been such an amazing friend. Thanks for letting me vent, cry, be mad, just sit at your house and say nothing… it means a lot. I really don't know what I'd do without you. Hope you and your clan aren't too sick of me being around :)

It's midnight so I guess I should try to sleep. Hopefully tomorrow will include less crying and being sad about this but I do think this one… this is gonna take some time.