My Ileostomy Diary/Journal

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536
Jamie93
Apr 27, 2011 12:59 pm
My Name is Jamie Folkard and Last year was the year from hell. Things were going fine until March, when my mum decided to leave the family for good without any regrets for any of my 4 sisters, 1 Brother and about 7 grandchildren (5 nephews and 2 nieces) and me (of course). Then the hell continued for months after she left I started to heve bloody diarraeah (excuse the spelling) and high aneamia. This eventually took it's toll on me as the months went on. Although I went to see my local GP about the problems they just gave me loperamide for a couple of weeks at a time saying it was just diarraeah, can someone tell me the real spelling of this word?, its complicated, anyway back to my story. I was saying the GP kept saying it was just diarraheah (I'm getting worse). So i thoughtOK, these tablets/capsules will sort the problem out, but they didn't. The problem was getting worse and worse, until eventually my GP saidit maybe Crohn's Disease andHigh Anaemia. It wasn't until a week after he had said thismy health took a turn for the worse and one morning. I can rememberthe date actually, August24th 2010 I woke up and severe pain from my abdomen started and kept going for about 30-45 minutes, so my cousin Stawart and my brother Richard said "phone an ambulance now". They had planned to go fishing for the day, which they did but, for obvious reasons, all they could thinkof was me . So I got carried to the ambulance and was rushed to hospital quickly/rapidly with my dad sitting in front of me the whole time. For the next week at this point I was assessed in hospital and given nothing to eat or drink until the doctors could find a diagnosis for my condition. I was Intraveinously fed and kept moisturised by a drip. On August 28th 2010 the doctor had filed through a lot of drugs through. They had found out the cause for my pain and suffering, Ulcerative Colitis, where the white blood cells attack the Large Intestine and cause it to become ulcerated, these ulcers had gotten so worse that they were puferating through the intestine wall and this was what had been causing the pain. They tried a lot of drugs, mainly anti-biotics to try and give my immune system some help to fight the cause for high white blood cell multiplication. On September 2nd 2010, they tried a relatively new drug to the time, a drug so powerful, it actually shut down my immune system (so as you can imagine, I felt like crap), but by this time the damage that had been done to my large intestine had been to great for these new drugs to have any effect what so ever. So the next day and operation was filed though, a long one, about 4 hours long to get rid of nearly all of the large intestine apart from about 6 inches including the anus and bumhole. After I woke up to this very big and long operation I was greeted by my dad who had been home while I had the operation. He stayed every night (apart from 3 nights and 1 day) there with me right from the beginning until three week later when I was eventually discharged. He's the best dad anyone who has experienced what I have to have the luck to have as a father and a soulmate. I love him. Back to the story, two weeks after I was discharged I waterted to get heavy amounts of back pain, no one knew where it was coming from and what was causing it, until my GP referred me to hospital yet again. The doctor found out what was causing all the pain and stress on my back, it was a 3-litre pool of some sort of infectous liquid built up on the other side to my stoma where my large intestine would have been, so I had a drain put in to get rid of this liquid, I had another 3 week stay in hospital of which my dad wasn't there with me every night but he did visit every day and night/evening time along with my cousins, sisters and nephews (apart from a couple of times,but mainly visited)Oh, yeah, my mum didn't even care to write a postcard or anything for the whole time I was in hospital, including the second three-week stay.



But now, six, nearly seven months later I am having (or gonna have) more surgery to get rid of this bagI am wearing every day (If they say yes). This operation is very long, even longer than the original operation was, I was wondering if I an get any information on Ileo anal Pouches, any information will be greatly recieved. You can either send informationvia thiswebsite or send it via e-mail to me (which you'll find on my profile).



Thank You to everyone who has read my profile and I hope that any other person in my position reads this. To all other viewers who have not seen/read this blog: Please read this blog and tell me about your experiences. Also tell me what you think of my story so I know what you know. Thanks again, bye for now!!!?

Past Member
Apr 21, 2011 5:33 pm
HI there-I went through the exact same situation as you-I had my surgery this past Sep.2010 where, as you, I have 50% bowel removed and anus and rectum and have a permanent colostomy-I am surprised that you can have yours reversed???? They said that because I have no anus and rectum that it can't be reversed?? I also had a massive infection after the surgery where my kidneys started shutting down-they said my Kreatine level was at 330(they put you in dialysis at 500!!) so I was very close-I have escaped death twice now-and actually did have a near death experience twice-so I am so thankful to be here-not sure what my life purpose is yet but I know I am supposed to be here. Keep your chin up and remember-the people on this site are FANTASTIC for support!!xo
Barbara
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Jamie93
Apr 26, 2011 5:12 pm
Thanks for the support Barbara. I have recieved loads of information from other members of this site about something called an Ileo-Anal Pouch. I want to have more surgery that's very risky because one slip-up during this surgery could be fatal and most probably will be. But I have the confidence and knowledge of the pperation to go through wit it. I just can't wait until they say that I can have it done. The actual operation is more commonly known as a'J', 'W' or 'S' pouch. They are called these name because they are literally these shapes, the one I will (hopefully) have done is called the 'J' pouch. The particualr shape of the IAP (Ileo-Anal Pouch) is the preference of the surgeon taking lead in it. My Surgeon is called Dr. Chris Speakman who is the director for General Surgery at the Norfolk and Norwich University Hospital. This is very near to wear I live. ANyway, thanks for the support, I'll just 'keep buggering' on in the famous words of Winston Churchill. I hope that things will plan out the way I want/need.