My Story Part 2

[Clubber]

Well it will be 2 years ago in May that I was diagnosed with Crohn's and had my 'corrective' surgery to remove the affected section of my bowels.

2 years on and I have just had my 2nd op. I went into hospital with a flare up and after a CT scan and several Xrays they found that the previous op site was starting to narrow causing a stricture and causing my bowels to narrow, obstructing anything from passing. The descision was to go in and try and tidy up so things would not get to bad!!!

Once they were in there they found that things were a lot worst than they originally thought. Once in there they found that not only was the old site causing problems but a completly new section of the bowels was hit badly by Crohn's.

So once again they set about to remove the section and clean me up, this time with the added bonus of a stoma bag waiting for me when I came to in recovery!!!

Being 26 years old this was a bit of a shock to the system. I have now been home for approx 32hrs and 1 wk after the op. Things are looking brighter each day with the effects of having a stoma bag becoming a lighter weight every day.

I am not one to usually talk heavily on forums and wanted to put something out here to say lifes shit but it could be worst you have to pick yourself up and get on with it.

 

[Nyx]

I can sympathize with waking up with a bag! I did too! It's not as bad as I thought it would be...turned out to be the best thing that's ever happened to me. I've only had mine for 2 months, but I'm currently not on any meds and feel better than I have in a long time. I don't have much experience, but if you have any questions or want to talk, feel free to message me

Good luck!

 

[Clubber]

Thanx Nyx,

How are you finding day to day life 2 months in?

I am a week in today but only day 2 in home life. i am getting on with the general things cleaning/changing/emptying etc but have yet to venture out in the outside world as i am still very tender and tired from the Op.

How quick did it take you to recover from the op?

 

[imisspopcorn]

Clubber, I posted on your other thread too! This is a great forum. It is the first one I have joined. There are tons of friendly supportive people here. I hope to see you around more.

 

[farm]

Welcome Clubber. Your attitude seems to be just about right for this disease.

 

[Nyx]

Day to day life is pretty much normal for me now. Now that I'm using an appliance that I'm comfortable with, it's much better. I was let out of the hospital with a one piece drainable bag, and I hated that! My ET nurse got me some free samples of 2 piece bags, and I've been using them ever since. I also called some of the manufacturers of these things and got more free samples! I'm all about free stuff!! Since my bag is permanent, I needed to get something that I'll be comfortable with for a long time. The only thing I hate right now is that I can't go in the hot tub for as long as I'd like (nothing worse than having your bag fall off in the tub!!). But I have a latex cover on order that should fix that so that I can use it in the bath, shower, swimming, and in the hot tub and it'll keep everything dry. I'll have to post how that works out when it gets here.

I was in the hospital for 24 days (I had other complications after surgery so they kept me in) so I was pretty much recovered by the time I got out. I'd say it took about 2 weeks for me to be fairly stable on my feet. I didn't really have any pain so that wasn't an issue. I just felt a bit woozy...and I had to have my incision packed and changed daily for about a month after getting out. I feel great now, 2 months out I'm not on any Crohn's meds and feel almost normal. It's wonderful!

 

[Clubber]

Thanx for the words of encouragement. I am glad to hear that you have adjusted to having your appliance well. I am still very tight aeround the edges from the surgery and can not be on my feet for too long as it knackers my back at the moment, its still early days yet!

The only thing that is difficult for me at the moment is changing the bag or atleast cutting the adhesives pad as my stoma is of two parts and still slightly swollen i can not seem to get a good measure and end up itchy from the exposed skin. I know this is something that once the swealing as subsided the shape and size i imagine will become more exact and then it be easier.

again thank you for sharing, I appriciate it.

 

[Nyx]

Did your flanges come with a sizer? It's a cardboard paper with holes in it...I use mine alot since my stoma is shrinking (they said it would take about 3 months for it get down to the size that it'll permanently be). Also, are you using paste on the flange? If you cut the whole a bit big, the paste will fill in the area of exposed skin...and if it comes off you can apply more with a q-tip till the next time you need to change the flange.

Hope this has been helpful

 

[Pirate]

Welcome Clubber. Its good to hear your positive attitude towards your bag and all you've been through. Attitude is the most important prt of dealing with CD. And it helps to have someone like Nyx to bounce differant thoughts and ideas off of.

Good luck with everything and hope to here more from you on the forum.

 

[Clubber]

Cheers Pirate I have always had a care free attitude to life, you dont deal the cards you only play them!!

Nyx,
I am using both the size guides and a no sting barrier wipe. its not so bad now. How do the seperate flange/bag work. I have only been given all in one bags. How do the seperate flange/bag work, do they last long etc???

 

[Nyx]

The two piece bags are great! There's a piece with a ring that attatches to the skin. This can stay on for up to a week (mine usually last between 5 and 7 days). Then there's the bag which just clips on to the ring (or flange). They come in different sizes, either drainable or non drainable (which is great for going out for an evening, you just toss it in the garbage). The drainable ones are reusable, you just dump the poop in the toilet and wash the bag out. I haven't had to buy new ones yet, so they last a long time. The drainable ones also come with a clip, or have velcro closures. Personally, I like the coloplast brand 2 piece with velcro closures.

Where are you from? I have 800 numbers for the various companies, but not sure if you can use them if you're not in North America. I'd go to the place where you buy your supplies and get the numbers from your rep there. Give them a call and get them to send you some free samples of the various types of bags and flanges.

In the meantime, here's a link to the bags that I like:
http://www.coloplast.ca/ECompany/CA...ocument&unid=DE9D285230E6DC2DC125736F0032B9DA

Hope this has been helpful

 

[Nancy Lee]

Welcome to the Crohn's Forum Clubber!!
You will find a lot of support and information here.

Sending positive thoughts your way~Nancy