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Almost Christmas!

Today is Friday 9th December, and it has officially been 3 whole months since I became a permanent ostomate. So for my blog, I thought, as it's all over (hopefully for good) I would do a huge blog about my whole experience from the start (back in '08) until now! So here it goes...

In August 2008 I went on holiday to Tenerife for 10 days. While I was away I contracted what I thought was heat stroke at the time and thought nothing of it. I then came home and in November of 2008 I was still going to the toilet about 5 times a day and feeling unwell. I went to the doctors about it but they just said because I was so young (I was 15) and probably had an unhealthy lifestyle it's very common for stuff like this to happen. So they sent me away having done nothing. In December 2008 I went to New York with my family, and can't remember having much trouble while I was out there, but when I got back, it got worse. I went back to the doctors (a different one this time) to get a second opinion. He suggested Coeliacs disease and for a few weeks made me cut out all wheat and gluten from my diet, when he realised that it had no effect, he referred me to a specialist, about 30 minutes drive from where I am.

In early 2009 my mum took me to see the specialist (luckily we didn't have to wait too long for an appointment) he mentioned something about a possible case of Crohn's or colitis, and he referred me again to a gastroenterologist in a children's hospital about 20 minutes drive away from me. The first appointment I had with him was also quite early, but until I saw him I was just told to take stuff like immodium and watch what I eat. My first meeting with the aptly named Dr. Butt was just like a consultation, until he had a look for himself at what I was complaining about. He then organised for me to have an endoscopy and colonoscopy while under anaesthetic, and he took biopsies of the specific areas, as he too also thought it may be Crohn's or colitis. When the results came back they showed that I had contracted Campylobacter while on holiday back in August 2008 and it had remained untreated since then and I was lucky not to have had a perforated bowel. He prescribed me with Metronidazol and Ciprofloxacin which seemed to do the trick for at least a month! I started feeling better and was going to the toilet much less often.

By May 2009, I was starting to feel worse again, and some symptoms of the campylobacter were returning. We made another appointment with Dr. Butt to see if there was anyway he could test my progress, because it was getting difficult to cope with. I was starting to take my GCSE's and couldn't miss any more school than I already was. Dr. Butt suggested that I had a Barium meal and X-Ray, just to make sure the campylobacter bacteria hadn't done any damage in my small intestine. So, I went, I drank the barium and I went on the x-ray bed, but all the results came back negative. This was told as good news, but it meant we were no closer to finding out what was going on! Dr. Butt decided that the best thing to do was to put me back on the Metronidazole and Cipro for the time being and to carefully monitor my health once the second course had finished. By the time I had finished the second course of antibiotics, I was feeling slightly better, but was still going to the toilet a large number of times a day.

On the 2nd July 2009 I was rushed into hospital (a week after prom!) and immediately put on fluids, IV antibiotics and painkillers. This was the routine for about 6 days, until the consultant gastroenterologist at my local hospital decided to take drastic measures and put me on immunosupressants to save my colon. Unfortunately 2 days later (10th July) I was told I would be having an emergency colectomy, by a surgeon I hadn't even met before. I don't remember much of that day, as I spent most of it crying in pain (and worry) on the toilet, and then in surgery. Before the operation, I had to have a central line put in because my Potassium was almost at 0, and in those 8 days in the hospital I lost about 20lbs. For the next 2 days after the surgery I was put into the High Dependency Unit and monitored constantly. I was also on a lot of painkillers like morphine and ketamine so I can't remember much of the 2 days. I just remember being moved onto the adolescent ward after the operation and after being on HDU and thinking "What the hell is that on my stomach?!" I didn't know what an ileostomy or a stoma was! And there I was, with one of my own. Needless to say it freaked me out a bit at first, but I was so relieved to be out of my crippling pain, and I had a huge scar to show off, so I didn't let the stoma bother me. At the time I had been with my boyfriend for a year and a half and wen he came and visited me I told him everything that had happened and he just accepted it, it had saved my life afterall. Later that day I met the consultant surgeon Mr. Baig, who had carried out the operation, and he explained to me what had happened, what my ilesotomy was, and that it was the only choice they had, and if he'd left it another 24 hours my bowel could have perforated.

When I was discharged from hospital, it was a hard going at first, but 6 weeks down the line I was almost back to seemed to be going great, and the doctors had already mentioned chances of a reversal.

On 23rd July 2010 I went into hospital for my J-Pouch to be made. I was so excited. My aim was to be fully recovered by my 18th birthday, which seemed reasonable as it was 9 months away. Just 5 days after the J-Pouch I was feeling so good and I got discharged from the hospital. Things were looking up already...until I got home. I ran a fever, I couldn't eat, I could barely drink cold water and I was going from too hot to too cold every minute. My mum took me back into hospital and I had a CT scan which showed that I had a tiny abscess around the anastomosis, so with a little keyhole surgery I was fixed up again and back on my feet. I had about 3 months of pain which I thought was normal following such a huge operation, but when I saw my surgeon in clinic he wasn't happy at all. I had another CT which showed nothing, so he assumed pouchitis. I was put on Metronidazole and Augmentin and when that didn't work they gave me steroids (as Colifoam). For a while I didn't feel things were getting better, and I had to drop out of college because I just couldn't make it in. By the time Christmas came, my face was the size of the moon from all the steroids, but I felt slightly stronger and better, what a difference a week makes...when it came to New Years Eve I had to cut my celebrations short and come home before midnight because I couldn't stand up or sit down from the amount of pain I was in. Up until this point I had been in hospital almost every 2 weeks to have a sigmoidoscopy and "wash out" as the j-pouch was filling up with pus from an unknown source and it wasn't coming out naturally which was making me really sick. In the end Mr. Baig fitted me with a rectal drain (it went straight up into the pouch) to keep the pouch draining.

In January 2011 I was referred to St. Marks- a hospital in London that specialises in ileostomies and j-pouch problems, and had a couple of consultations with a few of the surgeons there. I was put under the care of Ms. Clark, who performed a sigmoidoscopy (in February) and found that the anastomosis had never actually healed from the first surgery, and had left me 2 small abscesses on one side, and one abscess almost the same size as the pouch on the other side (I still had the rectal drain in at this point). She said to review the situation in 6 months time and decide from there whether I would keep trying with the pouch.

Come my 18th birthday I was on the operating table having one of my many "wash outs" and when the time came to review my situation in London with Ms Clark, I had already accepted that the chances of the pouch working were little, if any. She confirmed this and advised me to have the whole pouch taken out and a permanent ileostomy constructed. This happened on 9th Spetember 2011, and to be honest, since I've had the pouch taken out life has never been better.

I'm out of pain, I'm no longer losing weight and I'm off all my painkillers and meds.

I know it's probably the longest blog I'll ever write, and I hope it's not too boring but I just wanted to get everything out, I am disappointed that the pouch didn't work and I had to go through 14 months of literally not being able to stand up, but at least I tried it, and at least I know the pouch would never work for me.

I never thought I'd say it, but I'm happy I'm a permanent ostomate, and I'm happy that this happened to me...just makes me realise how lucky I've been.

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Too bad you had to go through so many trials and errors before you finally resolved your situation. The good news is that your experiences should contribute to overall medical knowledge and lead to improved practices. My GI doctor's office employs several research associates who constantly assemble patient data which are then aggregated into a national database. This information will lead to better diagnoses and correct interventions. In reading your blog it seems as if the doctors who installed your J-pouch did not thoroughly examine your internal landscape before proceding. I am glad you have adjusted so positively to your situation, and I hope others will benefit from your experiences. Good luck! PB

Having read your blogs ive always found them so interesting. Its good that you have let others know how things started, your trials and your final outcome.What a courageous person you are having dealt with life through rough and smooth. Wishing you more good health, happiness and a merry ambies..
Thank you for your comments! :) x

Thanks for sharing sweetheart. I hate you've had to grow up so fast.....but you've certainly done it with grace and determination. One can only imagine what the future holds for you....With such heart and shear fortitude...the sky is the limit......We'll be proud to say, We knew her when........LOL *****With pride and admiration, your buddy.......BEG

Another great post Franicaa!! I think that many of our consultants / surgeons / experts could do with reading this as an insight into what the whole experience is like from a patient's perspective. Thankfully I've not experienced anything like yourself but have learned so much by reading the likes of these blogs. Once again thanks for sharing!! Best wishes for Christmas and may 2012 hold better days! Take care, Colm
Thanks you guys! It's great to know that I'm interesting and not boring and that I'm not alone on this site x

thanks franicaa ive just read your blog and i hope you keep going and do well . im at my wits end with my illostomy and reading your blog has given me some insite as to what i can expect if i have the reversal take care love and have a good christmas xx
Hoping you have a lovely Christmas too! But please, what happened in my case, I was told happens in less than 1% of people who get the J-Pouch, so it's very unlikely, but obviously, there's always that risk!

thanks franicaa im at my wits end and really scared im regretting telling the surgeon to go ahead and do the surgury . he told me i needed it as my large colon was damaged beyond . i now wish i had asked for a second opinion but i was only going to the loo about twice a month and it hurt to go . now im just not accepting the bag at all. maybe im ok for the reversal im not sure . ill ask him re the j-pouch or some way off doing it as the output at the moment is just watery all the time its never solid but im told thats due to the large colon being removed . any way many thanks for your reply good luck love
Oh Franicaa,your story will help so many people who are going through a lot of pain and suffering.I had 2yrs of it,woke up with a tempory colostomy put still had a lot of pain so six months later had to have a permanant one,since that op I have been pain free.Is was hard to deal with for a while as I couldnt exept it ,now I forget I have it some days.Good luck with your future ,have a lovely pain free christmas and ahappy new 2012 xxxxxxxxxxx
I think you are a very wise young girl and I pray that God takes your dreams as far as you can go. I just started this site and I am enjoying reading and I have a lot to learn too. This is very encouraging for me. Thank you all.... Merry Christmas to all....Love Sherie
hi im new to this my sister has a stoma for life its only been 4 weeks and she is finding it very hard the bag seems to leak because off her weight lose and cant seem to eat anything without being in pain is this normal? she can eat scotch finger bisc but cant eat them forever lol
You, are, awesome Mutley :) I know uv had a really rough time these last couple of years but uv dealt with it so well. So glad ur pain free and happy and getting back on schedule with life now babe. Ive got some good news and banter for ya so il txt ya 2moro :) Xx
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