One of the weirdest things that happened when I first had Ulcerative Colitis/Colitus was that a food that I had previously loved eating became about the most painful thing I have ever consumed. It was Potatoes, in my first ever flare up just the tiniest piece of roast potato would have me in absolute agony! Which was quite upsetting because as I said I used to love Potatoes, especially roast potatoes.

So why is it that potatoes caused me so much pain? and in fact still do cause me Colitis problems to this day. well according to Paleo diet principles you shouldn’t eat them anyway and this is because they apparently have some chemicals in them which can increase intestinal permeability, or Leaky Gut Syndrome as it is more commonly known.

If you have colitis you basically have a leaky gut in to the bargain, so thats why potatoes may not be one of the best foods if you have Colitus.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

Finally I was getting better, I was down to 3-4 poos a day, feeling better in myself, and boy was I ready to go home! The hospital staff had been great, very attentive and kind, but hospitals are weird places to be in for too long, after nearly four weeks I was glad to be escaping, back to my family. The doctors agreed to let me go but of course you can’t just walk out there and then, it was the next day before I got to go and even then leaving took all day, by the time they had done all the paperwork and organized me a huge bag of drugs to take home. I was leaving with instructions to take over 20 pills a day, which is a lot, but at least I no longer needed IV drugs. Eventually at about 5 in the afternoon I left the ward, but then had to go to the discharge ward which took another hour. Before I left the hospital the Registrar came to see me and very briefly told me about another drug that they wanted me to take when I left called Azathioprine, he was quite brief in his description of what it was but left me some notes about it and said I would probably be on it for at least 4 years. Anyway I when I read the information about the drug I was somewhat concerned as the side effects were quite bad, possible lymphoma being one of rarer side effects as well as bone marrow problems and low white blood cells, basically it just squashes your immune system so it doesn’t do much, thereby reducing any inflammation in a similar way to ciclosporin, in fact it is used in organ transplants to prevent organ rejection. Well I didn’t much like the sound of all that – the risks seemed to outweigh the benefits to me, and I don’t think that long term drug use is a good idea for anyone. So I didn’t start taking it and the next time I saw the consultant I somewhat nervously told him that I didn’t want to take Azathioprine. To my relief he was very understanding, he explained that it was their standard treatment plan for Ulcerative Colitis to prescribe Azathioprine & Pentasa, but that he had other patients that were managing on just Pentasa alone. We agreed that I would just take Pentasa and see how things went. This was a big relief to me as I really didn’t want to take Azathioprine, and if i had have started to take it I think that stopping it would have been very difficult.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

I’ve been here how long ? Was my reply to my wife when she pointed out that I had been in Hospital for 3 weeks, I thought it was only about a week and a half! They say time fly’s when you’re having fun, although I don’t think that exactly fits in this case. I had completely lost track of time and reality whilst in Hospital for Severe Ulcerative Colitis. I must have been in a bad way, but I was on the mend, after 9 weeks of illness I was beginning to improve. I only weighed 7st 11lbs but my symptoms were improving and I was able to eat more – lots of home made vegetable soup with steamed chicken and white rice seemed to be best. Little did I know at the time it would be over 2 months more before I was well enough to return to work. So my first flare up of Colitis took about five months to recover from.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

When I was in Hospital with my first big Ulcerative Colitis Flare up. One Sunday I was lying in the hospital bed when one of the junior doctors came in to see me with some sheets of paper. She seemed a bit excited and asked how I was, and then she told me that she was checking my blood test results and that there had been a big & sudden  drop in my C-Reactive Protein Levels, more so than they would have expected so quickly. She explained that this was a very good sign, as they measure levels of CRP to evaluate the amount of inflammation in the body, but seemed at a loss to explain why the sudden drop ! Colitis is inflammation of the colon and so a drop in a marker for inflammation is very good news. I had been starting to feel better and so I was pleased to hear that the blood tests backed up how I felt. I got the impression from the doctor that they would have expected a more gradual decline in the CRP levels as I recovered from Ulcerative Colitis and this got me thinking as to what may have caused them to fall faster than expected. Was it the cyclosporine that I had been having intravenously for a while now or was it something   else ? Well the drop in the CRP levels was preceded by a couple of other treatments I had been trying apart from the medical drugs, the first was the use of creative visualisation for self healing and binaural beats music, and the other was the commencement of Homeopathic treatment. So what was it that was working – the drugs the self healing or the homeopathy ? Well there’s no way I can really prove what it was but my own personal feeling is that the Homeopathy and the Binaural Beats Music    were what triggered the sudden improvement, as well as my newfound determination to recover.

Colitis Breakthrough

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

I discovered the Chapel in the Hospital whilst I was there and found myself visiting it and praying for recovery from Ulcerative Colitis on a regular basis. I have always been brought up as a Christian but never before had I really done much praying, but the way things were I found that going to the chapel and praying for help from God made me feel better. I didn’t really expect much to come of it but all I can say is that I am now better and maybe it was that my prayers were indeed answered.

Whilst lying about in hospital I realized that even though I wasn’t doing anything I still wasn’t particularly relaxed, and that being relaxed would be helpful to me in my recovery. I already had  an audio recording of the sounds of gentle waves, which combines these relaxing sounds with something called binaural beats, this is basically where the sound you here in one ear is at a slightly different frequency to the sound you hear in the other, you brain realizes this and the result is that it can put you in to a very very deep state of relaxation, which is good for helping your  body’s natural healing process to work more efficiently. I found this incredibly useful in hospital as I could use it to make myself rest at any time of day or night – not always easy when nurses keep disturbing you every 2 hours ! You can find out more about this amazingly relaxing product here. It comes on a CD but I managed to put it onto a little mp3 three player like this and it still worked fine as I used the highest quality audio setting.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

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.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

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

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

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.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

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.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis

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.

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C o l i t i s _ R e c o v e r y - You Too Can Recover From Ulcerative Colitis