About Me

Health

Summery

This area of the site is devoted to my bowel condition; Ulcerative Colitis which is a member of the IBD (Inflammatory Bowel Disease) family and not to be confused with Irritable bowel syndrome, This also includes Crohn's Disease. This may turn you off straight away, but please just have a little read, you may learn something that could potentially save your life if you develop the first symptoms of IBD and perhaps understand those with this disease.

Id just like to say here how desperate I am to get IBD as well known as asthma, for unselfish reasons and personal ones. I feel quite ostracized by this disease because I have to explain my self every time I'm in a social situation where I have a dietary requirement or toilet locations, its a real drag as I have to live with this everyday of every minute of every hour, please remember this about diseases in general. For me there is no escape. You have one when you click the next button on this web page or browser.


Introduction

I was diagnosed very late with Ulcerative Colitis in Jan of 2002, after 5 months of Diarrhea, passing blood and in the last 2 months extreme abdominal pain.
I had never heard of this disease, so I didn't know what was happening to me and so I ignored it hoping it would go away until it was almost too late.
Say for example I had started to have trouble breathing when stressed out I would wonder if it was Asthma , the reason for this is that Asthma is a disease well known by many because of media coverage etc. Ulcerative Colitis and IBD (which UC is a member of like Crohnes Disease) isn't. I visited my Doctor for a month on a weekly basis before I was rushed into hospital with a suspected bowel perforation after a colonoscopy my Mum had paid for me to have privately, she could see I was seriously, My doctor on the other hand at no point mentioned IBD, I am still really puzzled as to why this was, did she not know about IBD?

Anyway my point being; There needs to be much more awareness about this disease to save lives and to prevent people who are in the early stages of this disease getting seriously ill like I was. Also and just as importantly awareness can help those who have friends, relatives or acquaintances with IBD to understand their needs.

There is a preconceived idea that this is all about pooh NO! this is a by product of a whole group of symptoms that range from embarrassing to excruciating. Many sufferers who may not prefer to be called that experience a full and 'normal' life compared to everyone else and only occasionally experience flare-ups that can be successfully be treated with drugs. But some like me have experienced few but very serious flare-ups that have meant surgery was necessary to save my life. This has meant living with an Ileostomy, which is effectively a 'bag' adhesively stuck to my abdomen that collects fecal matter


My Story

This is a story you won’t want to read while eating a chocolate pudding.

Its basically all about my bowel. I have written this with the intent on getting awareness for IBD (Inflammatory Bowel Disease). This is a name for a group of diseases; Ulcerative Colitis, Crohnes Disease and Proctitis. I have Ulcerative Colitis. Don't confuse IBD with IBS (Irritable Bowl Syndrome) which is also a chronic condition but not life threatening, like IBD is if left untreated, but usually is a treatable with drugs and surgery.

I had, had Irritable bowel syndrome since I can remember. This came in the form of unpredictable toilet sessions, sometimes constipated but mostly diarrhea, much gas, some painful spasms. This improved when I was put on mild antidepressants (75mg Dothiepin Hydrochloride).

In September 2001 I started passing blood and diarrhea but didn't think anything of because I was so used to the unpredictability of IBS and I was in no pain. I did see the doctor in the November who examined me rectally and told me there were firm stools in there and no sign of blood, I really hated having a doctors finger up my bottom, it was really in dignifying, he mentioned IBD but told me nothing of what it was and I realize now I should have asked. He said to come back in a month if it didn't’t get better or got any worse.
By Christmas I started to experience much pain, I had already experienced painful spasms with IBS so I thought it must be that but hid it from my boy friend (now x) as I didn't’t want to worry him. At this time I was going to the loo about 6 times a day, normally I would go once or less and I had started to loose weight.

I saw the emergency doctor one Saturday because I became really worried about it. I was asked when I rang 'could I get there my self' rather than having him come out to me as I was hoping, I stupidly said 'yes' and got a taxi there.
I was already quite week but when you know how bad the NHS is I try not to be a burden. I took some ibuprofen to help me get there and now I wish I hadn't’t. The emergency doctor did the same examinations as the last one I saw, and told me he couldn't see any blood. He told me to see my GP on the following Monday. Although the doctor was extremely nice I realized that it had been a complete waste of time and taxi fare, perhaps the ibuprofen had helped ease some of my symptoms, I swear I had a fever before I went.
I don’t know whether he didn't’t believe me or that he didn't’t think it was anything serious but now when I look back on it I feel very angry. I have been told by people in the medical profession that I should have been in hospital by this time, when I told them about this.

My symptoms at this time where passing blood and diarrhea and I had begun to get a high temperature. That Monday I saw the doctor a different this time. She weighed and examined me and found there was blood in my rectum, she signed me off work for two weeks and sent me home and told me to rest and told me not to take ibuprofen. She contacted the hospital to set up an appointment for me to have a colonoscopy. I also had to do a stool sample and blood test at the hospital which was real hard journey to make as I was getting weaker by the day.
In the meantime my symptoms got worse and I began to get nausea so bad that I couldn't’t keep anything down even water. My mum came round one day and saw how ill I was and took me to see the doctor again. This time she took my temperature, examined my belly, weighed me and took my blood pressure. The blood tests and stool samples were for an infection of the bowel and at no point did she mention IBD. She gave me something for the nausea and signed me off work for another 2 weeks. I had found that by avoiding anything with milk, cheese butter and whey that my symptoms where a little better. By the middle of January I received my appointment for my colonoscopy (a procedure where a camera is inserted into the rectum and the bowel is then examined) the date was for the 15th February. The letter itself was very clinical and told me nothing of what to expect and I found this extremely upsetting so I rang my mum she was more upset at how long I would have to wait and rang the hospital and the best solution was to book me in privately.
When I saw the consultant he told me all about IBD and thought I might Ulcerative Colitis (click here to find out more about UC), I thought that I would get this colonoscopy at this appointment but no, he just took samples of my bowel and a blood sample. This was all very traumatic and I had some trouble walking and talking. I was going to the loo about 15-20 times a day. The colonoscopy was for Tuesday and this was Friday. I was prescribed asacole and some enemas which id never taken before and laxatives for the day before the procedure. I had started to feel a bit better over the weekend but on Monday I had to take this laxative called ‘Fleet’. This stuff was the worst thing I had ever tasted and it effects were dramatic and the last thing I needed in my condition, physically and emotionally. It was supposed to be honey and lemon flavor and I had to mix it with water the only thing I can compare it to is earwax flavor, it was vile and I brought the first lot up immediately but it still had the desired effect and I spent the next few hours on the loo. I had to take the next lot in the early evening and I managed to keep that down for 55 minutes by shear will power alone.
The next day I had the colonoscopy I was terrified I didn't know what to expect I'd been given no leaflets or told what to expect which made it really frightening. I felt alright afterwards but got worse and worse and eventually they had to rush me to the NHS hospital. They were afraid that they had ruptured my bowel. There I stayed for four weeks. I was so ill that they were considering removing my colon; an operation called an Ileostomy and Total Colectomy. Most of the nurses were insensitive and didn't’t understand my situation. The night I was admitted I told a nurse I needed the loo and she got me a bed pan I Had trouble getting on to it and was left for ages before she came back to collect it, later on I used a commode but was not given anything to wash my hands with afterwards. In the first few days I tried to sleep as much as possible to escape the pain and diarrhea but in fact it was more like being unconscious I felt as though I was hanging on to life by a thread. I over heard a nurse talking to a patient saying something like ‘your sleeping all the time like Abbie’ before I was admitted I thought it would be good to be somewhere where they know about what I had and could take care of me. I found to my great misfortune that there was a great amount of ignorance about IBD among the nurses and they were even less understanding about my dietary needs of which I was quite ignorant to, I told them I was allergic to diary products but in fact the proper term is lactose intolerant. I was treated as if I was just being fussy about my food and there was no consideration as to what effect something like cheese might have on me, I suspect that I wouldn't have survived a large amount of it. It was also very difficult for them to get me food I could eat and I had a hard time coming terms with my new limited diet. If it wasn't for the dietician I dread to think what would have happened, she greatly improved me and my families understanding of what food would do if I ate the wrong thing and suggested what I should be eating.

I was given steroids and fluids intravenously and horrible large pills and I did start to get better and I managed to escape the operation, but two weeks later I started to pass blood again and my specialist decided to put me on cyclosporine which is a strong immunosuppressant via a drip. The reason this worked is that in ulcerative colitis the immune system attacks the colon to the point where it can cause ulcers that can bleed, urgent diarrhea and in some cases, especially mine abdominal pain and the worse case scenario is a perforated bowel which can kill.
This was in my specialists words a 'blanket approach' but it worked, but it wasn't a cure and I was to live with UC for another two years and be lactose intolerant, but managed to remain a veggie.

The Ileostomy
I then had a flare up a few months after coming out of hospital but was successfully treated with asathiaprine.
Then a year and a half of really great health until November 2003 I started to experience a slight pain in my lower left of my abdomen which I passed off as wind. A few days later I began to pass large quantities of blood and was admitted to hospital where a week later I had to have the Ileostomy because my bowel was endanger of perforating. After the operation they told me it had already perforated the inside layer of my bowel. It was another narrow escape. I thought after the first time i was in hospital that I had already experienced the most pain possible but i found out i was totally wrong. The pain had for the two days before they decided to operate was unbelievable, even morphine didn't kill the agony. The nurses decided to give me pethadine which really worked well even if i was as high as a kite. The pain after the operation, after they took me off the epidural the pain was different, muscular but terrible all the same.

As I got better and stronger I found I could tolerate cheese and best of all chocolate, which was fantastic and eventually i was eating pizza and ice cream like it was going out of fashion. The downside is that I'm completely dependant on a bag that is stuck to my body 24/7. This is because to get rid of my pooh, my small intestine (the part that would have been joint to my large intestine or colon) has been surgically brought through to the out side , turned inside out at the end like a cuff on a sleeve and sown to my belly, this is where i loose my pooh which is more runny then it would be if it had been through my colon. As a result I don't absorb as much water and nourishment out of my food so I have to be careful to drink enough and have enough salt. The bag itself I change ever 1-3 days and empty about 4 times a day, this is something I was desperate to know early on because before it settles down I had to empty about once every 2 hours or so and that really worried me.

Reversible
The operation is not permanent, they left the last section of bowel in so that none months after the op they can tuck every thing back in and join my ileum to that section of colon and I will be able to relieve myself normally but it will be the same consistency as when I had the bag and as frequent but I wont need to rely on bags, wipes special lotions and I will have back more freedom of clothes, not that there’s much I don't where now but some things are tricky.

Its really strange at the mo with a pouch (I think that sounds better than bag) and I have had problems with the adhesive not sticking and the odd small leak but I seem to be sorted now. I also have to ware a tine pouch, more a cap over what is called a mucus fistula. The thing about leaving that part of the colon in is that it will cary on producing mucus to lubricate pooh that isn't there and this mucus has to go somewhere, so the surgeon has made an exit for it at the front of my body where I ware these caps. My life is so much easier now I don't have to worry about what I can and cant eat it was worth the surgery .I would also like to say that here in East Anglia in the UK the support both during hospital and out of has been excellent. There has been a lot of negative press aimed at the NHS but the only negative thing that I experienced in hospital was sometimes there was a lack of staff, this is obviously due to a lack of money. As an ileostomist I get free prescriptions of bags and other equipment that I need and I can contact the stoma nurse when I need if I have any probs at all. I was in the Ipswich Hospital and I was very well looked after by the nurses who cared for me not just medically but also emotionally even sitting holding my hand when I was either upset or in a lot of pain.