I feel like I need to stop writing and saying out loud what I want to happen or what I hope happens, because every time I do, the opposite happens! Case in point; my last post. I was talking about how the bag I had on seemed pretty solid and I was hoping to leave it on a few extra days to allow for some extra healing time yada yada.....
Well, don't you know last night the bag freakin erupted. It had been such a nice night. I went to dinner with my dad and Hubs. It took all the energy I had to get ready and go out into the world. I feel so terrible about myself so I have lost the energy to get dolled up. So we went out. I actually had an appetite despite the ridiculous pain I had going on around my stoma. I had some salmon and some mashed potatoes but didn't over do it by any means. I'm seriously eating like a bird. I get full so fast. The meal was great. Daugther #2 ate salmon, crab, asparagus, avocado and a tiny piece of steak. She doesn't flinch at ANYTHING she tries. It is so wonderful!!!
So we get home. I pop some pain pills and change. I'm minding my own business laying on the recliner, and BAM! I'm wet. Ugh... Of course... because didn't I cancel my appointment with my home nurse telling her the bag survived the shower and it was on solid! Yeah- perfect.
So I run(not run) upstairs to deal with the crap(literally) that has become my life. This was around 830p. The thing about putting a new bag on is that the area has to be clean and dry and the stoma not leaking in order to prep the skin and get a new bag on. Well, my stupidface stoma would not stop. FOR HOURS. It was horrible. My skin hurt. I was on my bathroom floor crying. It was emptying like a Play Doh Fun Factory. I was miserable. Here's a visual. Everything is a wreck. ----->
What blows my mind is how swollen everything is. I only weigh about 110 pounds. Looking at this gut, no one would think that's possible. Ugh....
Anyway, I've got a rash from the adhesive, I've got raw skin from stomach acid eating it, and I've got the staple wounds that keep getting reopened every time I take a stupid bag off. You can see the 3 staple holes at about 2, 3, and 4 o'clock to the stoma that are not filling in and healing. The rest are closed and fine but those three are not pretty. =( The horizontal indentation is from who knows what because it wasn't there before surgery. I'm hoping my insides settle down and that fills in because it is just weird looking.
Finally at almost 11p the thing stopped. I showered, and used my blowdryer to dry the area because towels aren't an option. I used a variety of products to prep the skin and got a new bag on.
I have to keep trying to think ahead to August and the takedown surgery. If I focus too much on this I won't make it. Last night was just an out of control ending to the last few days. Exactly what I was trying to avoid happened.
I can't describe the frustration and stress I feel. At the same time, in the corner of my mind, I see myself in a year and know I'll be ok. This is temporary. I'm moving forward. I know that but for some reason that knowledge doesn't take away from the overwhelming feelings that have been cropping up.
I have my summer class starting the second week of July, so I am looking forward to that. It's a professor I had in the spring who I told about my surgery so I know I won't have any issues if they arise. The class will make things fly by to get me to August. I see my surgeon again the 19th and maybe we can come up with a game plan for surgery #2.
All in all, I wouldn't wish this on my worst enemy, but at the same time I need people to understand. Ulcerative Colitis and Crohn's is no joke. It can be humiliating, and isolating. It comes with extreme pain that I can not describe, along with other autoimmune issues such as joint pain, chronic fatigue, frequent fevers etc....The meds have horrible side effects and in turn, cause other issues while combatting the disease symptoms. Most people I meet either have never heard of UC or Crohn's, or think it is simply in line with eating some bad mexican one night or getting food poisoning. It affects every single day. Every plan someone makes. I will be missing my sister's baby shower because I will not be able to fly in the next few weeks. I've missed plenty with my daughter Daughter #1. I've been unable to work. I've been hospitalized and driven my husband nuts with my daily aches and pains and exhaustion.
Ok- public service announcement done. Have a great night people. Thanks for listening to me whine and moan the last two posts. More positive days to follow. =) Plus, True Blood starts tomorrow night! Hell yeah!
I feel like I need to stop writing and saying out loud what I want to happen or what I hope happens, because every time I do, the opposite happens! Case in point; my last post. I was talking about how the bag I had on seemed pretty solid and I was hoping to leave it on a few extra days to allow for some extra healing time yada yada.....
Well, don't you know last night the bag freakin erupted. It had been such a nice night. I went to dinner with my dad and Hubs. It took all the energy I had to get ready and go out into the world. I feel so terrible about myself so I have lost the energy to get dolled up. So we went out. I actually had an appetite despite the ridiculous pain I had going on around my stoma. I had some salmon and some mashed potatoes but didn't over do it by any means. I'm seriously eating like a bird. I get full so fast. The meal was great. Daugther #2 ate salmon, crab, asparagus, avocado and a tiny piece of steak. She doesn't flinch at ANYTHING she tries. It is so wonderful!!!
So we get home. I pop some pain pills and change. I'm minding my own business laying on the recliner, and BAM! I'm wet. Ugh... Of course... because didn't I cancel my appointment with my home nurse telling her the bag survived the shower and it was on solid! Yeah- perfect.
So I run(not run) upstairs to deal with the crap(literally) that has become my life. This was around 830p. The thing about putting a new bag on is that the area has to be clean and dry and the stoma not leaking in order to prep the skin and get a new bag on. Well, my stupidface stoma would not stop. FOR HOURS. It was horrible. My skin hurt. I was on my bathroom floor crying. It was emptying like a Play Doh Fun Factory. I was miserable. Here's a visual. Everything is a wreck. ----->
What blows my mind is how swollen everything is. I only weigh about 110 pounds. Looking at this gut, no one would think that's possible. Ugh....
Anyway, I've got a rash from the adhesive, I've got raw skin from stomach acid eating it, and I've got the staple wounds that keep getting reopened every time I take a stupid bag off. You can see the 3 staple holes at about 2, 3, and 4 o'clock to the stoma that are not filling in and healing. The rest are closed and fine but those three are not pretty. =( The horizontal indentation is from who knows what because it wasn't there before surgery. I'm hoping my insides settle down and that fills in because it is just weird looking.
Finally at almost 11p the thing stopped. I showered, and used my blowdryer to dry the area because towels aren't an option. I used a variety of products to prep the skin and got a new bag on.
I have to keep trying to think ahead to August and the takedown surgery. If I focus too much on this I won't make it. Last night was just an out of control ending to the last few days. Exactly what I was trying to avoid happened.
I can't describe the frustration and stress I feel. At the same time, in the corner of my mind, I see myself in a year and know I'll be ok. This is temporary. I'm moving forward. I know that but for some reason that knowledge doesn't take away from the overwhelming feelings that have been cropping up.
I have my summer class starting the second week of July, so I am looking forward to that. It's a professor I had in the spring who I told about my surgery so I know I won't have any issues if they arise. The class will make things fly by to get me to August. I see my surgeon again the 19th and maybe we can come up with a game plan for surgery #2.
All in all, I wouldn't wish this on my worst enemy, but at the same time I need people to understand. Ulcerative Colitis and Crohn's is no joke. It can be humiliating, and isolating. It comes with extreme pain that I can not describe, along with other autoimmune issues such as joint pain, chronic fatigue, frequent fevers etc....The meds have horrible side effects and in turn, cause other issues while combatting the disease symptoms. Most people I meet either have never heard of UC or Crohn's, or think it is simply in line with eating some bad mexican one night or getting food poisoning. It affects every single day. Every plan someone makes. I will be missing my sister's baby shower because I will not be able to fly in the next few weeks. I've missed plenty with my daughter Daughter #1. I've been unable to work. I've been hospitalized and driven my husband nuts with my daily aches and pains and exhaustion.
Ok- public service announcement done. Have a great night people. Thanks for listening to me whine and moan the last two posts. More positive days to follow. =) Plus, True Blood starts tomorrow night! Hell yeah!
Awwww - I remember those days. Trying to find the correct adhesive for your skin (mine is super sensitive:/) and finding the right appliance for your stoma. I remember my mom getting a crash course in the Childrens Hospital in Calgary right before they sent me home 1990. No one came to the house to help....it was funny sometimes. We had found that cutting the backing to size to fit the stoma in a "custom fit" really helped. We also purchased an oversized syringe from medical supply to help with rinsing out the pouch when emptying it. Yes, I had to bring to school, in grades 3 and 4 a backpack full of extra pouches, clips, syringe, adhesive etc.
ReplyDeleteSeriously, if you need to talk, go ahead and shout at me. I've been through it all including some lovely parting gifts left over from autoimmune central LOL - arthritis, sinus trouble, as well as adhesions from the scar tissue in my abdomen creating fun for my small intestine and j pouch :)
With the high output between wafer changes, try getting on all fours go that your belly is parallel to the floor. Your output should fall straight down to the floor. You can prop your front half up on the toilet (with a towel for cushioning) to free your hands for changing.
ReplyDelete