Having had some previous experience and training in NLP (Neuro Linguistic Programming) I already had a great deal of knowledge about various ways to help myself recover from Colitis using my thoughts and mind. One of my first realizations was that I just needed to let go of everything – all my worries and fears, I needed to put myself in a state of not really caring about anything at all, that’s not to say I stopped caring about my kids, wife or family, what I mean is that I had to stop being concerned with things that in the greater scheme of things don’t really matter at all – like whether you have the latest car, tv, biggest house, or what other people think of you, etc…  These things can become unduly important in day to day life. I actually remember lying in bed in Hospital and laughing out loud to myself – when I realized how much time I had been spending wasting my thoughts and emotions on what suddenly seemed like complete trivia, I suddenly just got the fact that I had to concentrate on things, thoughts and emotions which create positive emotional states within like joy, happiness, love, peace and healing.

So I started doing several things on my journey to heal myself of Ulcerative Colitis, I would lie in bed and visualize myself being completely healthy in the future, how I looked and felt, I would then imagine myself stepping in to that visualization and feeling how it was to be healthy again now. I also created an imaginary image of a control panel in my mind with various sliders and knobs and switches, I had one for poo consistency, one for blood loss, one for pain, and many, many others, depending on what I needed to work on at the time. I would simply picture the control panel and turn all the controls down, then I would check back a few hours later and if any of them had gone up I would turn them down again ! I kept on doing this over and over again. Another technique I used was to imagine myself floating up to a place of healing where I was surrounded by white fluffy clouds of energy which would direct energy lines to me where I needed healing. I found these things incredibly beneficial and they coincided with me beginning to recover from colits. I you want to find out more about this kind of thing I would recommend reading How your Mind can Heal your Body

Lying on my bed in Hospital suffering from Ulcerative Colitis, I realized that I was becoming increasingly paranoid and a bit nuts. I think all the steroids were catching up with me or it could have been the ciclosporin or any number of other drugs I was being pumped full of ! I had a picture of my children in my Hospital room and every time I looked at it I would have no choice but to burst in to tears, and I never normally cry about anything. I was hiding my possessions in different places because I thought they might get stolen, and then when I couldn’t find them I thought they had nicked, which of course they hadn’t I’d just forgotten where I put them ! Luckily I didn’t start accusing people of theft, really just because I was too paranoid to trust anyone. I also thought that the drugs I was on were making my joints bigger, when in fact all that had happened was that I had lost so much weight they looked bigger ! I was also quite seriously thinking of suicide – things had got so bad I wondered if it was worth carrying on, of course I didn’t tell anyone this but at one point If I could have jumped out the window I would have, fortunately I was so weak I couldn’t really get there to do it and anyway the window wouldn’t open enough! Then I had what I would describe as a dark night of the soul, where I lay in absolute agony on my bed in the dark and things became very blank, I had been thinking about death and pain and I seemed to go inside myself or possibly outside myself and there was nowhere for me to go other than where I was, all my thoughts disappeared and I realized that I had to recover, and that I could, that I had more control over my situation that I realized. This was a turning point for me as I realized that I wanted to live, no matter how bad it was, and I very much wanted to be completely recovered from my Ulcerative Colitis without having to lose any organs along the way. This was a very positive shift in my awareness, attitude and intention. I realized that I had to make myself get better regardless of any other treatments that were going on.

So I was hooked up to a machine with a very large syringe on it attached to a pole with wheels on so I could get about. (nicknamed the ogg-pog by my children!) It injected the ciclosporin in to my arm down a tube through a canula at a very slow pace all the time. The upside of this was that I got a room to myself again as the ciclosporin reduces your immunity and there is a risk of infection with other bugs. Because of this I was also on some powerful antibiotics all the time as well as the steroids & pentasa ! They also had me taking paracetamol all the time for the pain, apparently if you keep taking it, it stops the pain getting started too badly, and it did help although not as much as I would have liked, there was also an injection of other painkillers that I could ask for if I needed. At this point one of the nurses suggested that I should ask to see the dietician and get some elemental drinks. Elemental drinks are special cartons of a flavoured drink which provides you with pretty much all you need to survive and they don’t even get as far as the colon so they can’t aggravate any symptoms. Eventually the dietician turned up and I discussed the situation with her, she initially wanted me to eat cheese & cakes to build myself up!, but the doctors had told me to avoid all dairy products! So I wasn’t going to do that, so she prescribed me the elemental drinks, 8 a day which would provide me with about 2000 calories a day, which I needed. The elementals were great – I could tolerate them well, they didn’t cause me pain and it was nutrition which I badly needed. I can’t understand why I wasn’t given them straight away but I suspect that it was a case of the doctors just focusing on drug treatment and not considering other options, as well as possibly a cost issue. Elemental feeding I have since discovered can be used as a treatment instead of steroids to get things under control, although living just on drinks for several weeks might be difficult to do from the point of view of not just wanting some real food ! You can find out more about Elemental drinks here or here . If you’re having a flare up I would strongly recommend asking your doctor for elemental drinks or just buying them yourself, they really help to give you a boost whilst also giving your colon a rest. There is also a good book about Elemental Diets here

Colitis Breakthrough

Ok, things really weren’t improving much after over a week on IV steroids, and not only was I worried but my family and the doctors seemed to be as well. So, I had a visit from my Doctor and his junior doctors and they explained that things weren’t improving as well as they had hoped, and started to explain possible other treatments. The gastroenterologist explained that there were two more drugs that may help my situation but that had some possibly quite serious side effects. Alternatively I could have my colon surgically removed (colectomy) which would effectively cure the Colitis because I wouldn’t have colon anymore, I would have a colostomy bag instead. They explained that the next drug to try called Ciclosporin (cyclosporine) could cause seizures and other complications which I can’t even remember now but that it would probably be OK for me. I was left to think it over as to what I would prefer to do, and I must admit that to begin with I was almost ready to have them chop me open and take my colon away, it was causing me so much pain and distress that it seemed like a good option, I talked it over with my wife who said she would support me whatever I decided. Complete removal of my colon would mean I would never have to go through a colitis relapse ever again as well. It seemed like the most effective way to get better. But when I started to read about what was involved, I very soon realised that if at all possible it was something to be avoided and wasn’t really the easy solution I was imagining it to be. Since recovering I have met 2 people who have had the colectomy for colitis, 1 had the full thing out about 20 years ago, and still to this day claims to have stomach problems, and another who has had the more modern partial removal and putting back together without the need for a colostomy bag, and still has problems with colitis, so it seems to me that in fact it isn’t the complete cure that I thought it was. I’m just glad I didn’t go down the surgical route because there would have been no going back.

Next up was a meeting with the doctors – GI, Registrar, Junior Doctor, and me, my wife and parents all around my hospital bed which had just been moved out of my own room and on to the main ward in a room with 5 other people. So they pulled the curtains and the GI doctor explained the situation, the junior doctor at the end of the bed looked like she was trying not to cry, which surprised me. Anyway I decided to go the drugs route and take ciclosporin and if that didn’t work out then reconsider the surgical option, which the doctor assured me was the right way to go, but that the surgical team would still come and see me to check me over in case anything needed to be done in a hurry.

By the time I got to hospital it was actually a relief to be there, I could just let go and concentrate on getting well again. I was taken in to A&E and fitted with a canula in my arm which they use to put Intravenous Steroids and other drugs and fluids in to you. Then I was given my first dose of IV steroids, it felt weird – like a cold sensation going up the veins in your arm. Next they hooked me up to an IV bag of saline solution to re-hydrate me. So there I was lying on a trolley with a pipe going in my arm and I couldn’t really go anywhere apart from to the loo! In fact I didn’t really want to go anywhere or do anything by then, so I just lay there all day waiting to go to the ward. In the early evening they took me up to the ward, which was a GI ward so everyone there had stomach and bowel problems, boy did it smell of poo! But then I guess that’s what you’d expect. I was lucky to be in a brand new hospital and because I was so ill they put me in my own room, which had an en-suite toilet and shower, naturally I made good use of the toilet. There was also a TV but to be honest I felt so awful I couldn’t even be bothered to watch it. Hospitals are weird places you always have people coming in and checking you and giving you more drugs, even at night when you think you can have a nice sleep they wake you up for stuff. I learnt all about the Bristol scale of Stools (poos) and had to keep a diary documenting each poo I had what consistency it was on the Bristol scale and the time it happened, so they could tell how I was progressing. There was a constant round of blood tests every day. I also had to provide regular stool samples, had several xrays and another colonoscopy. They were keeping a constant check on me, and one of the concerns was that I may develop a Toxic Megacolon, which is where your colon becomes enlarged and is a life threatening condition requiring immediate surgery to remove the colon, something I was understandably very, very keen to avoid. I was also not really eating much except soft fruit, because anything left me in real agony and that was the least painful thing to eat, so my weight was still falling as you can’t really gain weight eating just fruit and with a lot of pooing going on. After nearly a week on IV steroids things still weren’t really improving and I was frightened.

After a week on the steroids and pentasa there was no improvement, in fact if anything things were worse, and I was getting seriously worried about myself. I had a lot of bleeding and I was in agony. So I phoned the Doctor, spoke to his secretary and he phoned me back to discuss the situation, he was very matter of fact and said not to worry it will get better and he increased my dosage of prednisolone. So reassured I went back to bed and waited to recover from my Ulcerative Colitis. But nothing happened over the next week there was still no improvement and I had by now lost a lot of weight, I was just over 8 stone by now and I’m 5ft 9. I was also quite badly dehydrated. So I put in another call to the Doctor, I was actually in tears when I spoke to him and he told me to get straight to Hospital where they would put me on Intravenous Steroids, which would work faster. He said they didn’t have any spare beds but that if I went to Accident and Emergency, he would advise them of my arrival and they would look after me there until a bed became available. Now I thought what! Go to hospital ?! The thought of it absolutely terrified me, I was going to be separated from my wife and two small children, I had no idea how they would cope without me to help at home, and I’m self employed and wouldn’t be able to work and earn money, even though in reality I wasn’t fit to do either. So with fear and trepidation I got my Mum to drive me to hospital, with the realisation that things must be bad. Ever hopeful of a speedy recovery.

I was seen within a few days by a Gastroenterologist, in a hospital clinic, and after a brief chat he initially performed a sigmoidoscopy – where they have a look up your bum at the last bit of you colon – Surprisingly it’s not as painful as you would think, and was over very quickly, although it was a somewhat awkward experience.  Then I was sent for an abdominal X-Ray.

Anyway with all that out of the way he confirmed the diagnosis of Ulcerative Colitis, and I said – Well what on earths that?! He explained that my colon was partly inflamed and ulcerated, the ulceration was causing the blood loss and he showed me the X-ray which showed my colon to be half empty, the explanation being that the inflammation was causing my body to hold my poo back from part of my colon, and then when it had to expel it, things were being pushed through a high velocity, and there was no chance for a stool to be formed – hence the diarrhea and pain.

So my next question was obviously – What has caused it ?, and that answer was – err, well were not really sure, it could be genetic, and  its thought to be an autoimmune disease, but no one really knows for sure ! But it’s not life threateninng except in extreme cases and we have a treatment plan that should get it under control. Oh and they wanted me to go back for a full colonoscopy as well.

I mentioned that I had some food intolerances, which had been previously identified by an igg antibody test, and that I wondered If diet may have an effect on the condition. The doctor advised that food wasn’t though to have an effect on colitis, but that dairy products could sometimes aggravate things in some people, so to avoid milk.

The doctor then prescribed steroids (prednisolone) and pentasa, he said I should be feeling better in about a week, which was to be honest a great relief to hear, although I was rather shocked when I asked how long I had to take the drugs –steroids for 9 weeks- that’s not too bad- but Pentasa for LIFE !

I was shocked, I’d always been a healthy person, the thought of being on medication for life was almost inconceivable to me, and quite undesirable. But at the time I didn’t have any other options, so I went Home hopeful of a speedy recovery.

To begin with I thought I had a tummy bug, it was a bad one with awful diarrhea and stomach cramps, but I assumed it would pass. Only it didn’t…. and I was bleeding when I had what I would loosely describe as a poo.

Now I’d had piles for a few years and they bled occasionally so I wasn’t unduly worried.  But I thought it best to go to the Doctor after a couple of weeks. In fact I was in such a state when I did finally get around to calling the doctor that initially he asked me to just provide a stool sample and that he would see what the results were first.

The stool sample took over a week to arrive and in the meantime the Doctor prescribed some anti biotics, which was probably a mistake with hindsight but at the time I was desperate for anything that might help. By now I was up to about 15-20 poo’s a day (night time as well) and in agony for a large part of the day, literally doubled over in pain. I was also losing weight fast. The only thing that gave any relief was not eating, which isn’t a great long term plan!

When I finally went to see the doctor in person he said he suspected colitis and duly referred me to a Gastroenterologist urgently. Relived to know what was wrong with me and hopeful of a speedy recovery from whatever colitis was I waited to see the next doctor.