Wednesday, May 28, 2014

You may have noticed...

That I changed the name of this blog. It started out as a place to vent and is turning into more about my life with Crohn's Disease so, here it is - Life with Crohn's Disease!

Good Days

Well, things are getting better. I have good days and bad days but the good seem to be outweighing the bad. Surgical scars are finally starting to close up, pain is starting to ease up and I am getting use to life with a stoma.

My stoma has changed since I posted a photo of it for everyone to see. The stitches have finally dissolved and are gone and it has returned to being an "outie" - now that it's healed I may take another photo at some point. I haven't had any more leaks with the ostomy bags which has been terrific. I am still self conscious about it but not as much as I was in the beginning.

Here is a photo of me with the bag on. Obviously it's usually tucked into my clothes :)
And please ignore the fact that I am clearly not wearing a bra… lol

As you can see, I still have to pack, cover and tape my holes from the complications with my surgery (you can't see the lower one in this photo). I still can't believe how skinny I am these days. I have stayed at a size 6 since January. I have never been a size 6 ever. My lowest in college was an 8. It also seems that no matter what I eat, I don't gain anything. My doctors are concerned about what I am not absorbing into my body these days. The iron pills I have been taking haven't done anything so it looks like I'll have to start infusions soon. I would like to stop being so tired all the time. That's my biggest complaint these days - fatigue. It seems I can't get through the day without a nap which is near impossible when you're a stay at home mom. I will also have to start injections of some other vitamins as my levels on everything are pretty poor. Malnutrition can be a huge problem in people with Crohn's Disease so that's something I'll have to keep an eye on.

I am getting better and I am very thankful for that. Still hopeful that someday I can rid myself of the ostomy bag (the current thought is February or March) and that is my little light at the end of this road for me. However, I am realizing that if it can't happen it wouldn't be as life shattering and awful as I thought in the beginning. Really no one knows I have it and not having the Crohn's pains like I had before - well, that's worth it. I still don't like having it and do really want to be "normal" again but if that doesn't happen, I'll live :)

And, I've been talking to more and more people about my disease. Spreading not only awareness but support - that's been a good thing I think.

Tuesday, May 20, 2014

Better day

Today was good. Really good in fact. For the first time in a LONG time, I felt like me again.

I had very little pain (although I did take pain meds but not the dilaudid - I took tramadol during the day and  it helped a lot), I wasn't tired at all and actually got things done around the house. The kids were super well behaved and I even had the energy to take them to the park - twice.

My home nurse came and treated my wounds. She actually thinks I should be able to stay out of the hospital. Provided things don't get worse. No fever and no redness around the infected area is a good thing and as long as it stays that way I am OK to stay home. We do need to stop the discharge from the wounds from being green but as long as the wounds stay open and continue to drain I should continue to heal. This was great news because I really do not want to go back to the hospital. I don't want to leave my family again.

I am trying to focus on the positives instead of the negatives. The low fiber diet stinks but it's not forever and I will be able to slowly introduce things back into my diet in another week. I'll never, ever be able to eat some things again but, really, it's no different than my life has been since I was a kid - the restricted foods may have changed but the reality is the same. I can try to do some things to eat some of those foods (like blanch and peel the skins off the tomatoes for example) so I really just need to focus on what I CAN do and not what I CAN'T do.

I want this to continue. I want to feel good and be in good spirits. Last week was horrible, a low for me. I know I am not better but having a good day like this was exactly what I needed. I don't want to be the kind of person I've been lately. I don't want to be sad, complain, be in a shitty mood and constantly have to rely on others. I've asked too much and I want life to get back to what it was - back before October when all this crap started. I may have a few more bad days (although I hope not) but today was encouraging.

I think I may have pushed some people away with everything that's been going on. I really hope not, I hope I am just worrying for no reason. I've asked a lot of people, dumped a lot of people and been a mess emotionally which I am sure has been hard to take. It's been hard for me as well. Who wants to be that way? I don't… honestly I don't. It can be so easy to get caught up in the bad stuff that's been going on and I've been dealing with a lot. It is so easy to get sucked into a bad feeling, a bad mood and just go into a hole. I did that last week. That is not something I want a repeat of.

Friday, May 16, 2014

Very hard week

I've had a very hard week. It's been bad physically and emotionally. I had three leaks with the ostomy equipment, been in pain because my wound is starting to get infected again and come to a food realization that I wasn't totally ready to hear.

My emotional state this week has been bad. I've been feeling more down than I have in a long time. I've been saying for a while now that I wasn't sure how much longer I could keep things together. I am trying but it's hard. Everything I've been through since October, it's just too much. The leaks have not helped my mood at all and on Thursday I spent the majority of the day crying. I am really not OK with all of this. Rationally I know things will get better and this surgery probably helped more than I think and I will learn to deal with life with an ostomy but I am just not OK with it all this week. Today was a little better than yesterday and hopefully tomorrow will be even better than today but realistically it all depends on what happens. If my ostomy stuff leaks again tonight and I wake up tomorrow to a mess then I am not going to do well. There is only so much I can take - only so much any person can take - until you hit your breaking point. I feel like crying right now just thinking about it all.

I spent some time with Kacey this morning and that was good. I didn't say much but just sitting with a friend, not at my house, helped. Weird how that works. I also got some good laughs in when her puppy was playing with my daughter. Laughing is something I hadn't done really any of all week so that was good.

I also went to home group tonight. Kacey and her husband Todd host it. This is something I am getting used to. Church in and of itself is still something I am getting used to, something that still isn't 100% in my comfort zone so this is still outside my comfort zone. I've gone twice now and I wouldn't go if I didn't want to but I am very quiet during most of it - taking everything in and trying to figure out what I think of it all. I haven't been too good about reading the bible or any of the devotionals Kacey has given me lately. I need to get back into that for sure - no, I don't need to, I want to. I've had a hard time caring about much of anything right now. She gave me a gift today, my own bible (it's very pretty and pink! Does she know me or what?) and it even has my name on it which is really nice. It was so incredibly thoughtful of her and it makes me feel guilty that I haven't been good on my reading. And feeling even more bad that I haven't talked to her about my struggle right now because I confide almost everything to her. Aside from my husband, she's my person (if you watch Grey's Anatomy you know that's where I got that term from). But… I am 99% sure she reads this so… now you know my friend. I need some help getting back on track because right now, as you know, I am not doing well. I very much want to believe that there is a reason for everything and a plan for everything but I am having a hard time believing that at the moment.

I think just this week has been bad, I've gone to a dark place and am questioning everything. And my struggle isn't even that bad on the grand scheme of things which makes me feel guilty for making a mountain out of a molehill so to speak. People are dealing with far worse things than I am so I should just be happy that I am alive, have a wonderful husband, kids family and friends. Stop bitching and get over it already. I do NOT want to be a drama queen and I am soooooo being one right now. UGH. That really makes me annoyed with myself. Gotta stop with the pity party. I really hope things improve over the next few days, weeks, whatever. I want to feel like myself again. I want to be back to the happy, silly, goofy me. Not sad, depressed, want to sleep all the time me.

I am really gonna try to work on that this week.

Wednesday, May 14, 2014

Staples were removed today

I had my staples removed today and let me tell you - it hurt getting them out. It hurt BAD. At one point the nurse went to see if she could get me some pain meds because I was crying. Those that know me know I am NOT a pain wimp. I am far from it. So… you can only imagine how bad this was. The staples had been in for a little over three weeks and the way my stomach was healing it was almost enveloping the staples. So they literally had to be DUG out in places. Never again. Next surgery I am telling then NO staples. Sew me up instead please.

Because I had staples removed in two sections early, I still have two open sections of my wound so I still have to pack my wound once a day and be careful still about lifting. I have however, been given the OK to drive again. Not being a nurse or a medical professional of any kind, I find packing the wound daunting and kind of gross. It can hurt a bit but I have to do it for 2-4 more weeks! UGH. For those who don't know, packing the wound means I have to take a very long q-tip and stuff gauze into the open sections of my wound. When I change it I pull out the gauze (which looks nasty let me tell you - kind of mucousy) and repack. This pulls out all the gross stuff and letting my insides close up without getting infected. If I don't do this I could get an infection and fluid buildup and all sorts of new issues that sound painful so… the packing I will do.


I will say overall I am feeling a bit less pain because the staples are out but because of how they came out, today has been rough pain wise. Luckily my hubs was home today so I didn't have to do much. I did lift the little one a bit today though so my wound leaked a bit more than normal. I know I am not supposed to but if you have little ones you know it is near impossible not to lift them at all ever in a day. I just try to do it carefully and not use my abdominal muscles. Careful lifting :)

I will be happy when all this is behind me, at least until next year.

Here is MY stoma (photo included - not for the squeamish)

In my last post I explained what a stoma is and told you I would share mine. Mine is still healing from surgery and you can still see the stitches around the edge. It's also a bit raw around the edges right now - as it's still healing.

But right now… here is what it looks like. This is probably not for the squeamish. Overall I have been told it looks good and healthy. I still think it;s gross but I am getting used to it. Still.. I'll be happier when it's back inside my body where intestines belong.

Monday, May 12, 2014

So… what IS a stoma anyway?

Someone asked so… again… I'll create a post which you can read or not depending on your curiosity level.

Ok! So let's get to the 'nitty gritty' of what everything is! First an ileostomy is formed when the whole  colon is taken away and a 'stoma' is formed from the end of the 'ileum'  which is the end of the small intestine. A colostomy is formed when only part of the large colon (large intestine) is taken away and the 'stoma' can be formed from the end of the remaining colon. A stoma is the part of intestine that is taken out of your body through a small incision on your stomach, typically on the left hand side for a colostomy and the right hand side for an ileostomy.  The dictionary definition for stoma is 'a mouth like opening'. A stoma has absolutely no feeling in it, I touch mine for cleaning purposes and feel nothing. a stoma looks very pink, because it has good blood supply to it.

My first surgery left me with an ileostomy. The stoma for that had two holes in the end as it was a loop of sorts (still not totally clear on why that was - I think because the idea was to reconnect my small intestine to what was left of my colon). The stoma was (and still is) on my right side. A colostomy would have been if I was still using the part of my colon I kept but we were bypassing it to try to get it to heal up - which it did not.

The second surgery removed the rest of my colon. My surgeon did not change my stoma site but did change how it ends. It is now an end port (the end of my small intestine) instead of a loop so only has one hole.

Now, since you can not control what comes out of the stoma like you can through your rectum, you need to wear a bag all the time. The bags I use are two piece. So, there is a part that sticks to your skin called a flange. It looks like this:

Then you attach a bag to the ring, the bags look like this:

The bags have a velcro part at the bottom. You fold it a few times and seal it. The bags can be emptied as often as needed. You can also change the bag without having to change the flange if needed. I like to try to leave the flange on as long as I can as you do not get as many of those in a box as you do of the bags. The bags are on the large side and can be hard to hide when they get full so it's best to empty them often. The output from the stoma with an ileostomy is different than a normal bowel movement. Because I no longer have a colon, things to not digest the same way - some things not very well at all - and I have to be careful about some foods as I do not want to block the stoma hole. I hear that is very painful. The output varies from watery to mushy - never anything formed. 

I am still learning all the ins and outs of this stoma thing. I will have this for at least a year. I am trying not to think about this as temporary because we never know - it could be permanent. I've already had one letdown and it is currently taking it's toll on me. I think if I don't think of this as a temporary issue I won't be heartbroken yet again if I can't get surgery #3 next year. I still have my rectum which means I can possibly, get my small intestine hooked to my rectum and no longer have the stoma. I do wonder though what that will mean for me. Will I have chronic diarrhea for the rest of my life? Something to talk to the surgeon about and take into consideration. However, I do want my insides all back inside my body someday.

For the foreseeable future though, I have this: 

I have to learn to be comfortable with it and deal with it because it is now a part of my life. I do hope it helps with my pain and I do hope my Crohn's can go into remission. As we've removed the largest problem I was having with this disease, the hopes are high that my quality of life will be much improved.

A couple people have asked what the stoma looks like. You can google it if you want but you'll see some pretty nasty things. Next time I change my flange and clean my stoma I will take a photo of it and share it here - don't worry, I'll make sure there's a warning for anyone who is squeamish or doesn't want to see it.