Jamie Folkard's Journey with Ulcerative Colitis and Ileostomy

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 have bloody diarrhea (excuse the spelling) and high anemia. This eventually took its 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 diarrhea. Can someone tell me the real spelling of this word? It's complicated. Anyway, back to my story. I was saying the GP kept saying it was just diarrhea (I'm getting worse). So I thought, "OK, these tablets/capsules will sort the problem out," but they didn't. The problem was getting worse and worse until eventually, my GP said it might be Crohn's Disease and high anemia. It wasn't until a week after he had said this that my health took a turn for the worse, and one morning, I can remember the date actually, August 24th, 2010, I woke up in severe pain from my abdomen that lasted about 30-45 minutes. So my cousin Stewart 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 think of was me. So I got carried to the ambulance and was rushed to the hospital quickly with my dad sitting in front of me the whole time. For the next week at this point, I was assessed in the hospital and given nothing to eat or drink until the doctors could find a diagnosis for my condition. I was intravenously fed and kept moisturized by a drip. On August 28th, 2010, the doctor had filed through a lot of drugs. They had found out the cause of 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 bad that they were perforating through the intestine wall, and this was what had been causing the pain. They tried a lot of drugs, mainly antibiotics, to try and give my immune system some help to fight the cause of high white blood cell multiplication. On September 2nd, 2010, they tried a relatively new drug at 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 too great for these new drugs to have any effect whatsoever. So the next day, an operation was filed through, 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 weeks 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 started 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 the hospital yet again. The doctor found out what was causing all the pain and stress on my back. It was a 3-liter pool of some sort of infectious liquid built up on the other side of 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 the 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 the hospital, including the second three-week stay.

But now, six, nearly seven months later, I am having (or going to have) more surgery to get rid of this bag I 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 can get any information on ileoanal pouches. Any information will be greatly received. You can either send information via this website or send it via email 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!!!

Hi there—I went through the exact same situation as you—I had my surgery this past Sep. 2010 where, like you, I had 50% of my bowel removed along with my anus and rectum, and now have a permanent colostomy. I am surprised that you can have yours reversed? They said that because I have no anus and rectum, it can't be reversed. I also had a massive infection after the surgery where my kidneys started shutting down—they said my creatinine 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. I'm 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

Thanks for the support, Barbara. I have received 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 operation to go through with 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 names because they are literally these shapes, the one I will (hopefully) have done is called the 'J' pouch. The particular shape of the IAP (Ileo-Anal Pouch) is the preference of the surgeon taking the 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 where 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.