getting by... life with an ileostomy

So I'm blogging for the first time in... almost a month? Goodness.

I've thought about blogging but I just can't seem to put forth the energy. I think I might be suffering a little depression since the ileostomy surgery...

Of course that's normal, at least that's what the doc and every one else tells me. It sucks though. I put on a good front but it's getting to me. It's harder and harder to hide it. I know I'll be better once my pain is gone and I'm back to a busier schedule. This sitting around recovering business is not good for my head or my soul. 

In my head, I've had several blog posts but just haven't gotten them out. This is frustrating.

Here is the latest update on my progress with the ileostomy: READ AT YOUR OWN RISK-I am very open and frank about what's going on. I had no idea how some of this would go down after surgery because no one really talks about some of  it. When I started experiencing some of these symptoms I thought something was wrong. With all of my pre surgery research, I hadn't come across some of this which happens to be very normal. 
  • I have finally figured out the whole bag system! Got my own rhythm to emptying and changing out the appliance. (That's what they call the contraption in the medical world, an appliance.) I now know how to order all my supplies online and my insurance is covering them 100%. Which is totally awesome since a box of 20 bags is approx $170, not including the flange part that holds the bag on my body! I also found an amazing deodorizer and other necessities online. There is only one pharmacy in Amarillo that carries ostomy supplies. ONLY ONE! Anyway, the pharmacist is very knowledgeable and helpful. 
  • The stoma part of my operation has healed with out any issues. I usually only have pain here when I'm very active which causes my insides to shift around filling the void that the colon and large intestine left. Plus, being active stretches and moves the suturing and scarring from surgery. All of the incisions on the outside have healed completely and are a soft pink color. No longer sore to the touch either. 
  • Here is where the details may be too much, so be prepared. The doc had to remove the majority of my rectum along with the diseased organs. No- I do not have a Cone Head butt... :)  I have about 2 inches, if that, left of the rectum. It is sewn shut at the top of the rectum so, yes- to put in layman's terms--I still have a butt hole. I know, gross, but like I said- I'm being very honest here. What I was not prepared for was that the glands in this area will continue to produce a mucus type substance that needs to be... evacuated. In other words, it feels like you have to poop which was shocking since I thought I was done with that. The past 10 days, the pain associated with this has been really rough. It was alarming and I was eating hydro-codone like candy. After a visit to the doc and a very personal rectal exam, it was decided that my glands were in overdrive. Not exactly good news. So, treatment for this is steroid suppositories for a month. BONUS *said sarcastically* The doc isn't sure if this is just my body trying to readjust to the surgery or if it could be some left over Ulcerative Colitis flaring. Uhg. Surgery is supposed to CURE me! This mucus discharge and feeling of fullness should go away, for most people- within a couple of months of surgery, for me- who knows?! This condition is not helping with the depression. If this does not clear up with the treatment of the steroids, another surgery will be needed. This will be a humdinger to recover from too, removal of the remaining rectum which would result in a Cone Head butt minus the knobs. Check out the movie with Dan Akroid if you don't know what I'm talking about. It's a great laugh. 
  • I've finally gotten over the whole grossness of changing the bag and emptying it's contents. The deodorizer helps a ton! This is something no one talks about either. It is gross, plain and simple. In the beginning I nearly threw up every single time I had to deal with it. I'd wear gloves and a mask sprayed with perfume. The deodorizer actually kills the stink completely. Thank God for the inventor of this little wonder. Once the smell was gone it made things much easier. I can now go with out the mask but I do use the gloves when changing the whole appliance. Just makes me feel more sterile. Besides, I'd die if I got it under my nails or something. BTW- I do wash my hands after every time, I'm just grossed out easily. 
  • I am still having to take it easy. No lifting or overdoing it. It's driving me freakin' bonkers! Another factor contributing to the depression. I still don't have a lot of energy or stamina which stinks. I'm tired of needing a nap after simple tasks. I have about a thousand thank you notes to write but I can't seem to do them. Not sure why either. It just seems so overwhelming. Everything right now feels this way. I think because I'm not allowed to do much I have shut down. Sometimes it would be so much easier to be a robot.
  • I've also mastered how to wear this thing under my clothes. I am so glad I had this done during cooler weather. Layering clothes makes me feel more secure right now. I'm always teasing my boys that I'm hanging a little to the right... they just roll their eyes and groan. I live to embarrass them, such joy. But seriously, I've figured out how to wear my pants and when to empty the bag before it shows a bulge. My bikini days are gone, not that I wore one before, but they are really gone now. The bag sits to the right of my bellybutton about 2 inches so definitely need a full piece to hide that baby. I'm glad I have about 8 months to figure out how to wear a bathing suit with it. 
  • I've lost 27 pounds the last time I checked. Hardly any of my pants fit from pre ileostomy. This is a really nice bonus. I hope to keep it off and enjoy this unexpected side effect. I've had to do a little shopping which has helped get me out and about. It's also helped me increase my stamina some. I love to shop-- I'm a shopper, I consider it a sport. I happen to be very good at it too. Shannon doesn't seem to mind because I'm thrifty and always looking for a good deal. So shopping really is a therapy for me, retail therapy--it's no joke. It's made me feel better to buy clothes smaller than pre surgery. If you're honest, you'll admit this is something you enjoy too. 
Several people have actually asked me to post pics. Next time I change the whole appliance, I will. Like I said--I'm being very open about this so as to help others who may need to know they are not alone. Sometimes I feel like a circus side show. No one has made me feel this way-- let me make that clear. When you have to alter your body from the norm to deal with an injury or disease, it can be very hard to accept the change. It can be devastating. I made the choice to have an ileostomy so that my quality of life would improve but it hasn't made it any easier to adjust to. It's hard when you look at your body and see the alteration you will have to live with forever. Even though I'm in a secure relationship with my husband of 19 years, I am still struggling with my new self image. He says it doesn't bother him, that he doesn't see it as disturbing. He loves me no matter what and I believe him, if only I could convince myself... with time, I guess. Is this how mastectomy patients feel? 

I am fortunate because my condition is not life threatening. Sometimes, people who have to have these types of operations are fighting for their lives. My heart goes out to them and their families. Life is so not fair. It is also so full of twists and turns. My first hospital stay with UC was a big eye opener. One of my nurses had UC too and had an ileostomy 2 years before. I remember him telling me that at some point I would be willing to go there. I thought he was nuts. Now, I think he was preparing me for what my future would hold. He had nothing but positive things to say about his quality of life post ileostomy. I wish I remembered his name so I could contact him. I would love to pick his brain. I never imagined I would suffer from a disease like UC or that I would eventually opt for a bag on my hip in exchange for a better daily life. One thing I know for sure though is that God has been with me every step of the way. He has given me strength when I had none and He has surrounded me by people with amazing strength when I thought I couldn't go on. Life was not promised to be easy and I don't think I would appreciate it if it was. What is promised is a life full of joy, hope and abundant living, but it's up to me to choose these. So, I choose to move forward regardless of my current situation. I refuse to be beaten down by this world. I will live abundantly. 


Comments

  1. Monnie, wow. What a story. It parallels mine in so many ways--chronic illness, surgery, adapting to an ileostomy, energy depletion after simple tasks, depression, using the mind to return to life. You are the embodiment of inspiration, and one can't have too much of that, so I signed up to follow your blog. Plus, I really like the layout. Well done.

    We have other things in common: I'm from Amarillo and spent summers at WTSU's tennis camps and AHS years playing varsity tennis tourneys there. Have explored Palo Duro Canyon and saw "Texas" a few times at the amphitheater. I recall the 50+ mph winds and the brown outs from Hereford. Ostomy related, after my sx June 2010, I had urgent mucus too for several weeks a few times daily. Then it slowed to an episode/week for about a year. Then Dec 2011, when I started jogging again, it increased to 3x/day. The urgency is much less, but the "fullness" remains. Just one of the benefits of an ostomy body!

    Anyway, curious--how did you found my blog? It's been up only a week! I'm very happy you did and tweeted me about it. Lots of questions for you and I'm excited about following your progress and return to abundant living.

    May you be plagued with good health,
    Cary

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    Replies
    1. Holy Cow! You're from Amarillo?!? Small world! Did you graduate from high school there? Both Shannon--the hubby--and I graduated from AHS in 90 and 91. Shannon also played tennis!

      I found your blog thru Charis. Facebook posting I think... Anyway, I am always interested in other people's journey with bowel disease.

      I am enjoying meeting (via teitter and blogs) other ostomates and hearing how they cope. Makes me feel like I'm not alone.

      Thank you for your kind words, I look forward to getting to know you better thru your blog!

      Keep it up and enjoy!
      monnie

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