Officially Permanent

[heameljon]

So things got too unbearable and my temporary colostomy is now permanent
But when it comes down to having quality of life and you have none you realize what needs to be done. Hopefully I will feAndy's to visiting great places like this to share ideas and experiences like I used to.

I want to thank everyone that gave me such great advice this past year. I love that I can come here and feel such a high level of respect from person to person.

Now for the tough part: recovery and mentally getting to that place that makes this all ok.

 

[Terriernut]

:ghug: I'm sorry you've been through so much. Getting our heads around these things can be very difficult. I can certainly relate.

I hope your health improves, and that you can go out and start living life and get joy in the pleasure of good health very soon.
:rosette2:

 

[CheerBear12]

Hi I will be doing the same as you keeping my ileostomy. It saved my life literally and my quality of life is way better with it and plus I got diagnosed with indeterminate colitis which means they don't know whether I have crohns or colitis. I've been fine since but I daren't take that risk. How painful is it? Good luck on the recovery and keep me posted hugs xx

 

[CheerBear12]

I was hoping it was going to be easier to get my head around it this time but doesn't sound like it will be xx

 

[heameljon]

CheerBear I think the choice was simple last week when I was in unbearable pain and then I had an OK day or two before surgery that made me question whether or not I could heal if I left it alone so there was some trepidation on my part. I think the one thing I have learned since I made this choice is that everyone that doesn't have an ostomy is going to tell you about someone that had the surgery and how better off they are now, honestly I understood the support and just let them talk but to me if you have not been through the process you don't really understand the place you have to get into mentally. That's the nice thing about coming here is when someone tell's you what they have been through it is on the same level, they know and they get what you are going through.

One of my friends who was a really great support system said to me, "Heather if most people had the choice of being in pain for 3 years straight, not eating, just working and sleeping, in and out of the hosptial like you have or living with a stoma they would pick the stoma." That kind of put it into perspective for me personally.

CheerBear the post surgical pain is not so bad. I was up sitting and walking around the day after. I am a little afraid of this drain that has to come out because the nurse said it was going to hurt and I don't really know about the vacuum thing they are going to put on the open wound in my bum, and trust me I have asked but they keep saying the ostomy nurse will explain.

Good luck to you CheerBear. Really this is a choice only you can make but it certainly helps to have a support system that backs you in whatever you decide. It's not their decsion to make but it helps if they can guide you. Please keep me posted as to how things go, I am curious if the process will be similar to my own.

 

[CheerBear12]

Hi I've already got my stoma I wouldn't have survived much longer without it. I lost a stone in weight and went down to 5 stone. My bowel could of burst any time which could of killed me. It saved my life I was in hospital for nearly 6 weeks and the treatment wasn't working for me. Steroids, infliximab, etc I didn't want it but the surgeons didn't tell me that the op was too save my life they only they only told my parents. I was in such a state as it was without being told that. I had only been suffering with it for 4 months before I ended up in hospital. The flare up wouldn't stop and I can't believe how bad it got in such a short time. I've got my life bk now and I've decided I'm going to keep it. Wish it was different but I've been diagnosed with indeterminate colitis and I can't take that risk. I'm fine now and I'll keep you posted. Need to go bk in November to speak to surgeon then get put on waiting list take care and take it easy still early days xxx

 

[Jaano711]

Hi
Just thinking of you all. I had to make the decision to go from no ostomy straight to permanent ostomy. It was a really big decision that I just kept avoiding. Each time I would see my surgeon he would ask me if I'd made the decision when I hadn't even mentioned it to my husband or family. I think I thought that oneday I would wake up and be totally healthy. The sad fact was that each day I woke up was just another hard painful slog that would get me to the next night and so on. All those who knew me were not let into my struggle with crohns and I always had a good excuse when I was to sick to do something.

It's only 6 weeks since my surgery and it has not been with out its setbacks both physically and emotionally. However things seem to be improving with the physical setbacks and the emotional anguish is being replaced with looking forward to a fuller life.
I am very lucky to have a very supportive husband and family that has helped. In fact my husband kind of suggested it would be selfish to not get it done as like you cheerbear, my surgeon said it was only a matter of time until my bowel would perferate and that there was a chance that it would kill me. he reminded me that we had our three kids together and that they needed me as much as he did.
I admit I still fell a little anxious when out in public but that is getting better. My stoma seems to know when I'm anxious and starts talking. I suppose the best way to get over the embarrassment is to face it.
I am still getting my appliance sorted and what with 'miss piggy' my stoma changing its a bit nerve racking but hopefully the shrinking will slow down and we will find the perfect products.

Wishing you a speedy and trouble free recovery.
Janette xx

 

[CheerBear12]

Omg Janette we were both in the same boat really apart from you've had yours done all in 1 op. Hope it gets better and better for you and keep us posted xx