Eight months have past rather quickly since the day of my life-saving operation to remove my diseased intestine. I couldn't be better! I've had my ups and my downs which could be expected but I'm now living life to the full. Previously I suffered from Crohn's disease but now the 'suffering' part has vanished. I'm perfectly normal, aside my ileostomy pouch.
I'm currently on placement with a large company that manages the trunk roads in Scotland, Bear Scotland. I'm doing Administration and I'm very happy there. They have been kind enough to facilitate my needs and place me on a training course (SVQ Administration) which will boost my C.V to a great extent. It's only a couple of months until I start temporary-employment, messy weekends expected!
Here's me and a close friend, I'm the one in the blue shirt.
First meeting with my ostomy nurse after the surgery, the 16th of March. I’ve made a list with questions for her. I’m curious with the Irrigation procedure, when can I start?
I’m preparing to move back home again. I’ve lived with my parents since the surgery, but it’s not an ideal situation, I miss living closer to the city. So I hope I’ll be home during this week. But it stills hurts when I’m walking; it feels like I have open wounds in my stomach.
Mentally I’m down at the moment. I have mixed feeling about my new colostomy. I’m glad that this has given me a new freedom in many ways, but I just hate having a bag with poo on me. I think it’s disgusting. Sometimes I could just wish this was not my own choice, so I could just be angry with the surgeons and nurses when I felt like it.
Well it was 12 months on the 20th April since I had my little spouting friend installed. It has been quite a roller coaster ride. My current health status is 1. ileostomy is fine with little bag troubles (I am lucky with that). 2. Crohns active causing pain and possible cause of the partial blockages i currently have, mouth ulcers come and go depending on the Crohns activity. 3.Staph infection in the anal area which has not heals since original op, under treatment which seems to be working but slowly. I have returned to work again with a VAC pump on, luckily my work is good with my medical issues. My family are happy to have me home again after this last 8 week stint in hospital. I am really happy my wound is healing as the 1 and 1/2 hrs it takes to change it is a real pain in the butt LOL.
Yes, finally I received samples from Coloplast. Two piece system, Yay, I have been looking forward to checking out this sample because it has the snap on locking plastic rings.
The samples are three pouches and three flanges'. They are clear, but that's okay, I'm on vacation and don't have to concern myself if anyone would see.They are cut to fit as requested, with roll up velcro closure at the bottom that you open to empty from. There is also a nicely kinda thick flap that will be good support when in use. They also have an added velcro dot to use to tuck the complete velcro closure up into which should keep it from sliding out when you move about. As well as poke or rub against the upper thigh.
Day one, putting on the flange was a breeze, but I also asked for the cut to fit ones and they were slightly difficult to cut b/c my scissors seemed a bit to long. It was an easy fix but, little extra work in cutting them close enough to meet my size. The flange is a full plastic/adhesive mount to your skin, but it is also shaped differently then my usual Hollister one piece which is round and these seem smaller and somewhat oval. They hide nicely behind the pouch itself.
Snapping on the pouch was easy and felt quite secure with the locking ring on the pouch. I tried removing it to see how it worked and it was no problem to push against the locking system and unsnapping it from the flange. Emptying was quite easy with the thicker flap, b/c it was an easy aim and nothing collapsed or stuck together where I had to use my fingers before to reopen the flap with other pouches.
Day two, not feeling so well but all is great with the output and no leaks or feeling like the pouch would come off.
Husband and I have been doing some painting and I have been kneeling and bending alot and my stoma sits right above my pants line so I am thinking if this doesn't make it come lose then I'm going to put in an order for these.
Day three, I think I have a blockage within me b/c I am most uncomfortable and feeling pressure and bloating but the pouch system is working well.
Day four, definitely have a blockage, so I called out of work but will continue to test the system.
Day five, well the blockage has caused my stoma to swell so I removed the pouch and flange and will have to continue when things pass.
Day seven, feeling much relief and the swelling has gone down. Things are still passing ever so slowly but I can put on a new flange and pouch and see how things progress.
Day eight, I think the blockage has clear up so it's off to work to see how the two piece system does after all the stress the job will apply. Well today was a very busy day. Still feeling sore inside but no issues with the two piece system. Took the pouch off of the flange and managed a good rinse out and used a q-tip (suggested from a post from Clare, thank you) to take care of the details needed close to the stoma, and yup, I am sold....calling and ordering a 90 day supply of these today.
Woo hoo, finally got a two piece I like.
I can not believe I have not blogged since 2011. Let's just say life got busy and lots of fun! I do believe that since my last blog I met the man of my dreams and got married on April 28, 2012. We had a beautiful church wedding and went on a Carnival cruise to the Caribbean for our honeymoon. Luck for us that was before the drama of the ship getting stranded in the ocean. We do love to cruise!! I also have a great niece on the way in September. I am so excited since it will be the closest to us having a child of our own.
My wonderful husband had never really seen me at my sickest point yet, but I do know he will handle it in stride when my Crohn's does decide to rear its ugly head again. He has had to carry me to the ER on a few occasions and he did great (thank goodness if not I'd have to send him to the curb). I have been having some wonderful signs that maybe my wonderful remission just might be over for the time being. I have noticed the sed rate climbing and I really do not know what the next step would be. I am already on the MAX dose of Cimzia. I will deal with that when the time comes.
Just always have the wonderful irritation around the stoma and ugly marks from the perstomal pyroderma. Oh well it is the battle wounds that make us who we are!
Glad to be back!