I’ve been remembering a few things over the last few days of memories when I had colitis, things like when Danny had been in the bathroom at home and within 15 seconds I would need to go to the toilet but because I couldn’t wait for him to come out, I would have to go the toilet in the bin or in a bucket in the bedroom quite often. You definitely loose your dignity.
Or eat that slice of pizza that I knew I would suffer with. Or like last year for my Dad’s birthday we went out to a restaurant and I didn’t even finish my main meal before we had to leave, or the terrible mood swings I would have because of how I was feeling, things that however close you are to your partner/ family you can not fully explain to them for them to understand.
Some of the worst things that I remember is right at the start, when I hadn't been diagnosed with UC, We had gone to Danny's Dad's house for a curry and I suddenly came over all hot and sweaty and desperately needing some fresh air. The pain was unbearable I didn't have a clue what was going on.
We got home and I was just violently sick and retching, even though there was nothing in my stomach and it really ached. I just thought it was the curry been too hot for me or something not that that would be the start of things to come.
Or been out in the car usually on the way to work or back home from work and I would have to try and coax myself in to that it was all in my head and I didnt really need to go the toilet or the pain in my stomach wasnt so bad, and then the accident would happen, I just couldnt hold it in any longer and we are talking seconds before it happened, not like a normal person can hold it.
We recently went to Harrogate for a wedding, and we had gone out the night before and I was really careful what I ate in case of having a flare up, we were walking back to our hotel room after having a lovely night and instantly I needed to go, we were only 200 yards from our hotel but I had to rush in to a pub and go to the toilet but I didnt get there on time and had yet another accident. I ended up having to throw my leggings and underwear in the bin and walk out of the pub as if everything was normal.
It was bloody awful I tried to keep it together but as soon as I got back to the hotel I couldn't stop crying. Danny was brilliant once again, but that was hard knowing that the wedding was the next day and the same thing could easily happen again.
Luckily it didnt and I did try and have a good time, but it was always on my mind that it might just happen when I least expected it and might not be able to get to the toilet on time. As much as I had a good time I was pleased to be going home so that it was easier to deal with if it did happen.
I can't tell you what a hugh relief it is to not feel like that anymore, to not worry about going out even to the corner shop in case of it happening, that we can go out and thoroughly enjoy ourselves knowing that that is part of our history not our future.
We have a friends wedding coming up in July and I was so nervous about going in case the food didnt agree with me or that the toilets were too far away to get too. That I am pleased to say has all gone, now I can't wait to go and get dressed up feel nice and relaxed and just enjoy our time there.
It is an amazing feeling and I feel a very lucky lady.
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I just feel you are an incredibly brave and strong young woman and you have all my admiration and lots and lots of love.
ReplyDeleteAC xxxxxx
I really am in awe of your bravery Natalie. Your an inspiration not only to people coping with colitis, but people coping with any form of adversity. I feel so proud to be related to you! The fact that you are writing this blog proves what an incredible person you are.
ReplyDeleteLove,
Gavin.
I have some of those same stories and man they can be depressing. I use to think I was the only colitis sufferer that carried toilet paper in my car and extra clothes in my purse. I have had so many accidents that I thought I should own stock in toilet paper. One of the things I remember from active colitis days is needing to know exactly where restrooms where the minute I got any where or how temperature shifts would send me running to find a bathroom...meaning if I walked in from the outside during the summer time (AZ) at the time into a cold store with in two seconds I would need to rush to go. The car. oh that is a dozy. It was better if I drove...distraction. But there were times...more when alone that an attack would happen and then I was left with that complete lack of self worth feeling. back to reading before the baby wakes.
ReplyDeleteHi Natalie,
ReplyDeleteJust read your blog it was fantastic, i'm sure it will help others.
Made me shed a few tears so close to home. You soon forget and it's great you have taken the time to do it.
Glad everything is going well for you. Take care xx
Hi Natalie,
ReplyDeleteThank so much for your honest postings! This made my laugh and cry at the same time because it's so familiar. I'm 33 and have had colitis for 15 years but the last 3 have been a nightmare. I was wearing diapers most of the time and had many of the same experiences you describe -- chasing my partner out of the bathroom every morning, crapping in garbage cans, losing bowel control in public etc. I finally decided to have the surgery and had my first operation a few weeks ago. I'm still struggling a bit with the ileostomy and the aches/pains of surgery and prednisone reduction, but it certainly is a relief not to be running to the bathroom anymore! Your blog has been a great window into the future...
Wishing you all the best with your recovery!
Hi,
ReplyDeleteThank you for taking the time to write me a comment, and a really nice one at that.
It's not at all unusual to find it hard to deal with in the first few weeks, as you have probably read earlier in my blog I found the stoma bag hard, but obviously necessary for a quick recovery. I think the advice I can give you, is don't be too hard on yourself by thinking you should be at a certain stage by now, or you should be able to put the stoma bag on by now. Try and not put any pressure on yourself, it sounds like you have a very helpful partner like I had when I was going through it, and that is what you need. Try and keep positive and walking really helped me, so it may be the same for you.
I'm nearly 7 months since my 1st operation now, and the change in my life style is immense, you will find that quite quickly after your 2nd operation when you are walking and starting to feel stronger, the change in your everyday life is evident, and i'm sure like me you will be a lot happier as a result of it.
So when the pain and misery is getting to you in this early stage, remember that it is only temporary and in a few months time, you will look back on it like it was a bad dream.
I wish you all the luck in your recovery.I would love to hear from you again to see how you are getting on.
Take care, Natalie.