September 2005 came around, September 13th or 14th to be exact, and I decided to see a doctor and get his opinion. As I thought he would say, he said it was Irritable Bowel Syndrome, but I asked him…
“Is there a possiblity it could be something else, because I’ve read books and there’s a lot of stuff it could be? (I’d read about UC but didn’t think it was that, even though I had some of the symptoms)“
He said… “Well, there’s a possibility it could be Ulcerative Colitis or some other Inflammatory Bowel Disease. But that’s unlikely as you’d have severe abdominal pain, blood and more than 6 stools a day. Do you have any of that?“.
Docotor: “Well there’s nothing to worry about, we’ll just have to keep an eye on you in case it is anything like that“.
After that he wrote me a prescription for some IBS medication I can’t remember the name of, and with that I was off home. On my way home I started to feel the need to empty my bowels, it came and went, so when I got home I told my mam and dad what the Doctor said and then went to the toilet. And would you believe what happend, after going to the doctor and telling him I had no blood… there was blood literally 15 minutes after I’d seen him! I told my dad, he said “Did you have that before?” Me: “No” Dad: “You better make another appointment and tell him!”. I said I would and still assumed it was Irritable Bowel, because bloody stools aren’t uncommon with IBS.
September 16th rolled around! Between the 13th/14th and the 16th the Colitis was slowly getting worse but I still put it down to Irritable Bowel, but it was manageable. Later in the day on September 16th I found my father dead. As you can imagine the shock of finding my father dead had a singnificant effect on the Colitis. Between the 16th of September when he died and the 23rd of September when he was buried I had started going to the toilet six times a day and having only two bloody diarrhea bowel movments, the other four were painful straining movments cosisting of mucus, clotted and clear blood. After the funeral was all done and over with I felt an obligation to take my fathers place and be the person in the family who deals with all the bills and looks after the family. Bad idea considering I was already stressed up with my own anxiety problems and my fathers sudden death. My youngest sister didn’t take well to me being ‘the man of the house’ and fought against everything I said and did. Taking care of the bills was even harder, I’d never had to deal wit the UK benefits system before and it was so complicated. Maybe if the goverment had left my mother with what she had before it would have been a little easier to understand, but they changed everything! She got an extra five pounds and because of that our rent and council tax went up! Well after a month or so of this it wasn’t helping the Colitis so I let my mother handle everything, except my yougest sister which I still had to look out for whether she liked it or not.
All through October 2005 the UC got worse and I was going to the toilet seven or eight times a day, feeling tired and losing my appetite. I’d seen the doctor again in September and he refered me to a specialist in Inflammatory Bowel Diease, but while I was waiting for the appointment I still didn’t have much idea what it was and I still didn’t have any medication for it. Then in early November 2005 I saw the specialist and he took a biopsy from my colon, and he said it looks like Ulcerative Colitis, but he couldn’t tell till the biopsy results came back. But till then he gave me a perscription for Mesalazine tablets and suppositories. The results came back and it was Ulcerative Colitis, the next step was a colonsocpy to see the extent of the disease. That was to come in 2006.
All through November 2005 I had a bad, painful time, the worse I’ve ever had with the UC! Towards the end of November I was having ten or twelve bowel movments a day on average. Some times it was fourteen or more on the bad days! I was asked by the specialist if any foods I ate made it worse, and I said pretty much anything I ate it didn’t matter, the UC was always there. He told me about some foods that make it worse, one was milk. I had pan of custard one Sunday night, made with whole milk, and that was the worse night I spent with UC ever! I had a fever, I’d been to the toilet sixteen times, couldn’t sleep even though I was tired, vomiting and abdominal cramping like I was being punched or someone was twisting my colon. I used to sit on the toilet for so long my legs would fall to sleep and my back would ache because my bowels were straining so much. After this little episode I decided to drink soya milk instead of our normal for about a three weeks… Didn’t make a bit of difference to me. The UC was still bad, so bad in fact I went to the hospital A&E two times, both times they turned me away and said “The amount of blood you lost is not as worse as it looks.” Funny that, it was running down my legs every day all through October and November, and they never saw it, if they had they would have agreed I needed to be there! I ended up developing anemia. One Friday night I had the blood again and a pain in my chest as well is in my abdomin, I didn’t want to go because I just thought they’d turn me away again like the previous two times. But my mother had other ideas and called an ambulance.
After waiting for over an hour or so in the waiting room I was seen and some X-rays were taken. I then waited another couple of hours for that and some blood tests to come back. The result was that I was anemic, which I already knew, and had fecal loading (constipation) even though I was still having dirrahea. The constipation was caused by the iron tablets I had to take for my anemia, the pain killers I had to take and the Immodium to stop me having diarrhea. The Immodium was a complete waste of time for me, all it did was make my insides hurt, I told the doctors this when they gave them to me and they wouldn’t listen. Time after time they said “Take an Immodium, it’ll ease the pain and stop diarrhea”. Well, let me tell you… it didn’t! It just bound me up inside and made it hurt even more! Because the Immodium was just combining with the iron tabs and pain killers and causing constipation. It didn’t even stop the Diarrhea or blood. And this was the reason why I ended up in hospital for three and a half days. I hated it, I was so depressed… I was stuck in a side ward on my own (I was actually glad of that because the main ward was full of sick alcoholics). Every time I needed the toilet I had to pull the drip in to a small toilet with me that was part of the room, I was glad for that to because I couldn’t have draged that to the main ward toilets! I was bored, lonely, sick and in pain… even though I had pain killers they wern’t working on me, because they were pain killers for arthritis. I couldn’t have normal pain killers because they contributed to the constipation. After three and half days of small food portions, a drip and a day of laxitives I was on my way home, still sick and with pain.
December 2005 – 2006
December 2005 and the majority of 2006 were pretty much the same, I was expirencing the severe disease most of the time with a little let up in symptoms now and again. It was also in early 2006 I had the colonsocpy (camera up the back passage) and they found that I had Pan colitis, which means my whole large intestine (colon) was inflamed with Ulcerative Colitis. I also started taking predfoam enemas in mind 2006, but they didn’t work so I gave up on them. Which in retrospect was somewhat of a foolish thing to do. But the doctors gave me a medication to treat left sided colitis when I had pan colitis, it just didn’t work! All through 2006 I started wondering if I’d ever get better, it seemed I’d had the UC for years. Some people never got fully better at all, I started to think that I was one of them.
2006 – 2007 Slow Recovery
In late 2006 early 2007 I decided to give the enemas another chance, because I was sick to death of diarrhea and pain. Nothing happend at first just as I thought, then it started getting better gradually, I’d say it took three or four months in all, it wasn’t perfect, I still got ocassional pain, blood and diarrhea.. but it was better than the alternative. While things were getting better I had to address the problems the medicine was causing, the Mesalazine and Predfoam enemas had caused really bad acne on my face, chest and back. It pretty much had scard my face badly, so I started taking a strong ance treatment that guranteed to get rid of the ance and would mean I would never get them again as bad. I still asked the Dermatologist “What happens when I finish taking the course and I my UC medicine brings them back?” She basicaly said that wouldn’t happen, or at least it wouldn’t happen as bad. Anyway, I took the ance medication in to 2008 with good results!
Below is chart of my UC flare ups and mile stones:
The Present And Recent Flare Up
Early 2008 Was a good year so far! My UC had practically gone 100%! I had stopped taking my predfoam because I didn’t need it any more, the Doctor said if I feel fine I could leave it and just use the Mesalazine. But the dermatologist had discovered a new problem, I had a Dermoid Cyst in my mouth, and it was growing down the right side of my neck. So I needed an operation to remove it! As you can guess the op was painful and stressful, they used a lot of antibiotics on me to keep off infection in my mouth and neck. I came out of the hospital feeling like crap and not long after the Colitis flared up! I started taking predfoam straight away and it was no good again, the UC steadily increased, it stopped me from exercise again because all the physical activity made it worse. This time it’s not the same as it used to be though. It’s very intermitant, I can go from stage one of the illness to stage two in half an hour! I only have three or four attacks of diarrhea and blood three times a week now, usualy when I go to the toilet. I only stay in each zone for a couple of hours each time, then after that it’s usualy just some mild abdominal pain. Even though I’m using the enemas the UC just isn’t shifting like it did last time, the UC is going then coming back but not to that level that it was when I first developed it.
The Future And Problems
But still, it’s painful and very inconvenient! I still dont know how a full time realtionship or job would effect me. I’ve thought about relationships alot and how the UC woud effect it, I always think why would a woman want somone like me, not only with UC but bad anxiety some times. I can’t go out or do much of anything, I can’t even exercise at home. There’s also the flare up of bad acne I get with using the medication (I have some now). The same goes for work, I’m not really obliged to tell a potential employer I suffer with UC unless they ask, but if I can’t even exercise at home how am I going to work a physical job? There are non physical jobs, but I don’t have to be doing anything physical to get stressed out and wind-up with a flare up.
I’m not going to lie and say I’m optimistic about the future, because like everyone with Ulcerative Colitis I face a future of flare ups, pain, possible cancer, realtionship problems, lack of a social life, fewer job prospects and good quality of life. However! I am aware of one thing that triggers my UC… My anxiety, and anxiety means stress and that means a flare up! I think if I can control my anxiety and stress levels I can hault the UC in its tracks. But that’s easier said than done, but I will be trying!