Me and my poo…or a document about illness

Sorry this is quite a long document. There is also quite a lot of mention of poo and bowel movements. If you do not wish to read about poo this is not the document for you.

Meningitis and Ulcerous Colitis (UC) are two very big problems that have affected me in my life. I am cured of UC but it will affect me for the rest of my life to some degree as the cure involved surgery to remove my large intestine. To quote Manic Street Preachers’ ‘My Little Empire’ “I’m sick of being sick…I’m tired of being tired…I’m bored of being bored.” I became tiered of UC dictating my life and restricting me so completely. In the first two years I had it there was so much that I could have accomplished but I was unable to. I felt like I was a disappointment to people and not achieving anything. To make my sense of underachieving even worse I would see my friends and family moving on with their lives and taking some very positive steps forward.

Both illnesses have sent me into lonely and depressed episodes of my life. UC has been very difficult at times. While meningitis brought me incredibly close to death, in hindsight I found it much easier to deal with the meningitis than UC. I was very weak for some time due to meningitis but I was able to recover and get back to my life at university and return to the amazing friends I had made within a few months.

I contracted meningitis when I was nineteen but it is all a bit of a blur. It was very sudden and I was unconscious not long after I went into hospital after being very ill all night. I woke up about a week later after being in a coma. I don’t remember much very clearly after waking up in hospital. I remember I was very weak. I had lost so much muscle that I could not walk for a couple of days, if I tried to stand I would not be able to hold myself up and would fall back into bed. When I was able to walk my balance was terrible and walking a couple of steps was exhausting. The left side of my face had become paralysed, this was not permanent. I had also lost a lot of weight, I was quite skeletal at first. After getting out of hospital I started to get my strength back and did make it back to finish my first year of university a few months after having meningitis. It was very difficult but I was very lucky. I was not lucky in the sense of contracting meningitis. I was lucky because it seemed that I had come out of it largely unharmed. I did not really have any outward signs of the disease, the paralyses of my face took a while to go away and did sometimes come back if I had drunk a bit. I was young and at university I was going to drink. The only other physical sign of the disease was very minor scarring from the rash which is only noticeable if I point it out, I struggle to notice it. I was lucky to not lose a limb or die. It was close. Modern medicine saved my life and allowed me to continue with my life.

I think UC has been harder to deal with than meningitis because it has been affecting me for so much longer and meningitis did not seem to leave any permanent damage. I first noticed symptoms related to UC in September 2010. I did not know that it was UC, I just noticed blood with my stool and some irregularities with my bowel movements. I was told by my doctor that it was probably piles. It was not until I had a sigmoidoscopy (the first but not the last and not a very pleasant experience) that I was told I had UC. The UC was inactive at the time of the sigmoidoscopy. UC affected me badly for most of 2011 and all of 2012 until I had an operation to remove my large intestine at the end of October 2012.

For me I find one the hardest aspects of UC is that as it is an autoimmune disease it means that the body is attacking itself. It can be very hard at times to understand why your body would be doing this. As far as I understand the disease there is not a virus which your body is attacking, it is doing it too itself. There are suggestions that this is due to underlying psychological reasons, as well as environmental, genetic, diet and lifestyle all playing apart. Due to how healthy I was prior to first noticing symptoms I refuse to believe that my diet or lifestyle is what led to me developing the disease. However as there are professional sports players who develop the condition may be it has something to do with putting your body under stress. I do not like the notion that there is a deeply psychological reason to me having the disease. No matter how much someone may not like themselves the idea that they would bring upon themselves a disease which is so utterly humiliating I find hard to accept. I feel that I am unfortunately genetically weaker and inclined to developing the disease and that the meningitis made me more susceptible. After my immune system failed to prevent the bacterial meningitis it is now being incredibly sensitive and attacking all the bacteria in my gut thinking there is an infection.

UC can completely remove any sense of pride or dignity one has. Being in your mid-twenties and having no control over your bowel movements is utterly humiliating. At pretty much any age not being able to control your bowels is going to be embarrassing. It is difficult to feel you can achieve anything in life if it feels like your body is trying it best to empty itself of everything inside you what seems like continuously throughout the day.

Losing blood and having diarrhoea all day long can be exhausting. It is physically and emotionally draining. When it is very bad getting a proper night’s sleep is impossible due to the need to get up several times to rush to the toilet. I would be afraid to leave the house because I would have no idea when I would need to empty my bowels and since first developing UC I had little to no control over my bowel movements. If I have any warning I would have about 30 seconds to get to the toilet or else I would soil myself. At times I think this is what people fail to fully understand about colitis and how bad it can be. When my symptoms have been very bad almost anything would cause my bowels to open and I would have absolutely no control. Putting food in my mouth (or even looking at it), any movement at all would cause my bowels to open and I would often soil myself. This is completely humiliating and demoralising. I would be scared to leave the house and associated food with soiling myself so I would often not eat. Not eating on top of diarrhoea, loss of blood and not sleeping did not help my physical or mental health.

For almost two years since my UC symptoms first surfaced I have had a couple of months when I felt healthy enough to live my life the way I would like. I was able to leave the house without being worried about whether I would need to rush to a toilet. I could play sport, do exercise and visit my friends without the fear of humiliating myself due to unhealthy and very unpleasant bowel movements. Apart from these few months I was largely house bound and very restricted in what I could do.

I kept thinking “when I am better I can start realizing my potential.” It is important to take action beforehand. There were things I could do while I was still ill but I did spend some time thinking there was not much else I could do other than watch films and play computer games. I did read books from time to time but I found that there were times when I couldn’t concentrate properly. I did have times when I was productive and gave myself of timetable of things that I could do that didn’t require me leaving the house. This largely involved going through old university notes and trying to do stuff for the masters course I had started. I was also able to play the drums, though practice was interrupted at times by trips to the toilet. If I was playing something strenuous there were more trips to the toilet. I also started to teach myself the guitar and the bodhran (a type of Irish drum).

The medical treatments seemed to keep the worst of my symptoms under control at the best of times but I was still uncomfortable about straying too far away from a toilet and fearful of soiling myself as I still had little bowel control. It reached a point where my body was not responding as well to medication as it would be hoped. The main side effects which I noticed from the steroid medication was my temper was even shorter than it normally is and I was told that I needed calcium supplements due to the steroids increasing the risk of osteoporosis. As the medical treatments did not seem to be working, any diets I had tried and therapy didn’t help (quite the opposite) there was only one option if I wanted to be able to carry on with a life where I am happy to leave the house and that was surgery.

As I already said I don’t think that diet is a contributor to my illness but I tried various diets to see if they improved my symptoms. I can safely say that for me diet is definitely not a factor. Some of the times when I was experiencing my worst symptoms were when I had been on a very strict diet which was designed for people suffering from UC and was meant to improve symptoms. I tried various supplements also and all but a couple of these appeared to have no effect either way. The only supplements which have helped have been iron supplements and fibre supplements. At times I could get very anaemic and the iron supplements helped reduce this. The fibre supplement helped to reduce diarrhoea and slightly improved bowel control due to having more formed stools. It is much easier to hold in solid waste than to prevent liquid leaving your body via the back passage.

I did go to see a therapist when I was feeling particularly depressed and lonely.  I did not find this helpful. By the time I got round to having my first appointment I had come to terms by and large with the fact that there was no quick fix to UC and I should stop wasting my time complaining about any injustice I felt and taking my frustration out on other people and how such negative thoughts were making things worse. I needed to find a way I could cope with the illness and if that meant surgery then so be it. The therapist did not seem to understand this or may be thought that I was just saying this because I didn’t want to talk to her. She seemed to be encouraging me to be angry at the world and I should be afraid of surgery. Or at least that is how it seemed to me. I should add that the therapist I saw was not one familiar with IBD. The National Crohn’s and Colitis charity do have therapists who are trained to deal with people suffering from IBD. I am sure I would have benefitted from seeing an IBD therapists at times when I was feeling very low.

I was obviously worried about having surgery but I was much more prepared for it than when I was when first informed that it may be an option. Once you have spent over a year largely having little to no bowel control, soiling yourself often, not leaving the house and seeing your friends and loved ones accomplishing and achieving lots and you can’t be there to enjoy life with them thoughts of surgery are not so horrific. I thought “If having my large intestine removed can improve my quality of life then I will accept it.” There were various things I was worried about with surgery. The procedure I had meant that for a time I would have a stoma and require a bag attached to this to collect the waste coming from my small intestine. This is obviously quite an unpleasant thought and will not look very attractive either. Other than the outward appearance of this one of my main concerns was the extra hassle of emptying and changing the bag. I know it sounds a bit stupid but it was a concern that I had. Thinking “I can’t be bothered with that, it’ll be fiddly and annoying.” I was just as worried about faffing around with changing and disposing of stoma bags as I was with what it would look like and how it would feel.

Having a stoma obviously presents the issue of appearance. I have always been proud of my body and have sometimes been complemented about it as well. The stoma will be on my stomach, an area I was proud of. As much as you try to fight against outward appearance is unfortunately quite a large part of society and culture and you can’t help but be influenced by it in some way. Or at least I find that is the case at times. I knew that my stoma was only going to be temporary but I was still worried.

After having the stoma for a few months I was meant to have more surgery to form an internal pouch inside my body. This will function in a way similar to my bladder and intestine, or at least that is how I understand it. This will mean I will no longer have a stoma. The internal pouch may mean that I need to go to the toilet more often than normal but I will have control. This is obviously the most desirable option as far as surgery goes. However there may be complications with the internal pouch which means that it is required to return to a stoma and make it permanent. I would rather this didn’t happen but I should not pretend that it is not a possibility.

It sounds a little perverse after saying that I was worried and scarred about the surgery that I ended hoping it happened sooner rather than later. There were times when I was sat on the toilet in the middle of the night in a lot of pain that I was been thinking “cut it out, cut it out of me right now!” There are many examples of people achieving incredible feats and being successful with much worse afflictions and restrictions. The surgery would not be suggested if it did not help and in some way improve your quality of life. I thought “Once it is done I will move on with my life and try to realise my full potential.”

The Olympics and the Paralympics came at a very good time. I have found them both incredibly inspiring. They have also served as a figurative slap around the face about me feeling sorry for myself and doing nothing of any meaning with my time. Anyone who is not inspired or in awe of the achievements of all the athletes at the Olympics and the Paralympics should take a long hard look at themselves. Their achievements, whether they have won or not really puts life’s problems and challenges in perspective. To me the main thing about sport is not about the fame and the money it is about being the best that you can be. If you love what you do no matter what it is and put your heart and soul into it nothing should be able to stop you. The only person who can really stop you is yourself; if you do not have belief or faith in yourself you will not achieve your full potential. There are many examples of athletes in the Paralympics who have had meningitis at various stages of their life. They have mostly lost limbs or it has given them some form of disability. I was lucky enough to survive my meningococcal disease with no visible long term physical defects. Now that I am experiencing physical difficulties I should not give up and admit defeat.

I had two operations to deal with my colitis. I was expecting to have two operations but not as close together as they ended up being. It was not an easy decision to make in accepting I needed to have the operations. It took me almost two years to accept that I needed to have the operations. The operations involve removing my large intestine, providing me with a temporary stoma and forming an internal pouch inside my body using the bottom of my small intestine to replace the temporary stoma. The healing both physically and mentally after the operations and the colitis I was suffering with prior to the operations took some time and I probably am not fully healed. I have tried to be as active as possible after the operations without pushing myself too much.

It was not an easy decision to make as the operations are major procedures. Once you have your large intestine removed there is no going back. Even though I had been suffering quite badly nearly every day for about two years from ulcerous colitis I was still nervous about the operations. There are always horror stories of the operations making life worse for people, though I think in some cases these are apocryphal. In searching for stories of how people manage ulcerous colitis you encounter people who are very anti the surgery, form what I could tell they either have very mild IBD or they know someone who has it. Clearly if you have a mild form of IBD or are not experiencing it first-hand you will not like the idea of having an organ removed and think that it will only make life more difficult. However it may start seeming like more of a possibility if you spend days, weeks, months, even years having to rush to the toilet with no prior warning (and not always getting there in time), not eating properly, having stomach pains, never leaving the house and never seeing your friends. When your life consists of not wanting to do anything or not really being able to concentrate because you know you’ll need to rush to the toilet then surgery starts to look like a more realistic option for getting your life back on track. It will obviously not be the same as before I first had colitis but it starts to look more hopeful than the current situation.

It took me two years and trying pretty much every medication and alternative treatment for colitis that I could find out about before deciding that surgery was necessary for me to be able to have a more complete life. There were some more extreme alternative treatments which I did not consider, again these may have been apocryphal stories.

I was supposed to have an initial operation to remove my large intestine, form the temporary stoma and the internal pouch. Once I had healed after this operation and got my strength back I would have the second operation a couple of months after the first to reverse the stoma so I would start to use the internal pouch.

pre-op

pre-op. A picture of me before the first operation. There were points when I was thinner and I had lost even more weight but I forgot about taking a picture.

The first operation went well and I didn’t have any immediate complications. Obviously I felt pretty rough. I was exhausted, felt like I’d been punched in the tummy a few thousand times and felt nauseous most of the time. The nausea was difficult as I was being encouraged to eat to get my strength back and to help the stoma work properly. From what I understand the small intestine produces digestive fluids during the day which are normally reabsorbed in the large intestine or included into stools. Lacking a large intestine these fluids produced by the small intestine can be problematic. If you don’t eat much or at all then they simply start to come out of the stoma and cause problems such as dehydration and stoma bag leakages. I was being encouraged to eat to get the stoma working better and producing a more healthy and manageable output. You are supposed to eat a little and often, and there are some foods which are better than others. However when you feel nauseous most of the time and eating makes you feel even more nauseous it can be quite stressful to have people trying to force feed you. I did vomit a few times after the operation. Vomiting is never a pleasant experience and when any stress or tension put on your abdominal muscles causes agony, vomiting is an even less pleasant experience.

About a week after the first operation I left hospital. I felt quite weak and my abdominal muscles were still quite painful. This was only to be expected. I had been told before the first operation that afterwards I would feel like I’d been hit by a bus. I had not taken this as seriously as I should have or at least thought I would be getting my strength back much quicker than I was. I had been trying to keep as active as possible in hospital but trying to go for little walks was both physically and emotionally draining. When I left hospital after the first operation walking to the car from the ward was quite an effort, I refused to use a wheel chair to get to the car.

Once at home I was coping quite well with the temporary stoma. The thing I was most surprised with was that I was fairly comfortable looking at the stoma and changing the bag. That was one of the things I was most worried about prior to the operation. I have always been comfortable with my body and quite liked my tummy. I was worried that having part of my small intestine pocking out of my tummy would revolt me. I was able to look at it (touching it was a bit weird, so I tried to avoid that) and changing the stoma bags was ok once having some instruction. I felt as long as the stoma worked properly I could handle it and that was the main thing. As long as I didn’t have a problem with the stoma either in how it looked or looking after it then that was the important factor. If other people had a problem with it and didn’t like it then that was their concern not mine.

Unfortunately about a week after I left hospital (about two weeks after the operation) I started to have problems with the stoma. I had a day when I felt very nauseous so I stopped eating, started to get bad stomach pains and the stoma wasn’t working. I did vomit as well. I didn’t eat for about 24 hours and the problem resolved itself. I thought it was just a one off and things would get better after that. However a few days later I had the same problem but it was worse. I was vomiting more and the pains were more intense and more frequent. I had to go in to hospital because I was in so much pain and could not eat. I spent two days in hospital and then went home. Unfortunately within a couple of days I had the same problem and needed to go back into hospital.

The first time I had gone into hospital the doctors were not sure what the cause of the problem was. It could have been a build-up of scar tissue causing a blockage in my intestine. There might have been a twist in my bowel not allowing food/stool to pass through my intestine properly. There was also a suggestion that I was constipated from taking imodium. The only pills I was taking by this point were pain killers and imodium to slow down the passage of food. From scans and X-rays of my intestine it seemed there was a blockage close to the stoma so stool was getting stuck and my intestine was trying to force it out but mainly causing pain instead. The second time I went into hospital I was told that the problem was probably resulting from my abdominal muscles by the stoma constricting too much therefore causing the blockage. I had a scan and test carried out of the internal pouch to see if it was functioning as it was supposed to. This was to see whether or not I might be able to have the second operation to reverse the temporary stoma earlier. Fortunately the scans showed the pouch was functioning in a way that it would be possible to carry out the second operation and I should be ok with the pouch function. I am not sure what I would have needed if the pouch was not ready to function on its own. I think it might have involved surgery to ease the muscle pressure on the stoma, I don’t know. Fortunately the second operation went well and the pouch seems to be working pretty well. I am taking things slow but hope to be back to being active and getting on with my life when I am not taking any more pain killers. At first I was taking a lot of pain killers after a little over two months I was taking two paracetamol in the morning.

post-op

post-op. This is after the second operation. You can’t really see the key hole scares but you can see where the stoma was. 

The transition from before surgery to now has been difficult but I think it has improved my life. It has obviously been a big change and but I am healthier than I was when I was suffering from colitis. There were points when I did think that the surgery had been a mistake. These were points when I was having problems with the stoma. When you are (not for the first time) curled up on the bathroom floor in the early hours of the morning in agony and have just thrown up the easiest thing to blame is the operation you had a couple of weeks ago.

I not only think that it was a good idea to have had the operation now that I am more active and feel I am getting my strength back and once I start to be more productive and less lazy I can get my life back on track. Also having been told by one of the doctors that when my large intestine was removed they were able to see how badly effected it was by the disease. The medicines I had been taking to keep the disease under control had been working even less effectively than I and the doctors had thought. When the colitis is very severe it can cause a perforation of the intestine and that can be very serious, possibly fatal and I was told that it was looking like it was going that way with my intestine.

I may still be in an unproductive and lazy state of mind but I no longer feel like my life is being controlled by a disease and ruled by a need to be very close proximity to a toilet. I may still be good at making myself feel alone and down but I have a lot to aim for and the only person stopping me is me.

I will not become the sort of person who only complains about what has happened to them in life. Life has presented me with challenges but compared to what some people have overcome in their lives I have had a very easy life I am will not let adversity stand in my way!

2 thoughts on “Me and my poo…or a document about illness

  1. Hi Jon
    I’m not sure if we’ve met. My name is Simon Prager. I go to the patient panel, agm meetings and the ADC dinners usually. I am older than you (68) and I have colitis. Well done for your description of your ops. I’ve had UC for about 8 years and after exhausting all the immunosuppressants, I finally had an Ileostomy about 6 weeks ago. I’m not really intending to get reconnected (at present) so for the moment, I’m getting used to the bag. I don’t find that much of a problem but my abdomen is still quite sore around the stoma. Hopefully, that will gradually improve. I also still have my rectum which is still inflamed… Apparently, I will need an op to remove that if I don’t go for the reconnection.. I had my op done at St Georges and the Surgeon was Mr Hagger. I thought they were brilliant. Anyway, I am cetainly feeling better than before the op so at the moment, I am full of hope…

    If you haven’t been to one, you should come to an ADC (alphabetical Dining Club) dinner. It’s usually between 10 and 16 people. We book a table in a restaurant (with an alphabetical theme) every couple of months. It’s purely social but there are some interesting people there and you can sometimes get advice from people who’ve been through it.. The next one is on 6th June. Hope to see you.

    • Hi Simon

      I should get involved with Crohn’s and Colitis UK. I am taking part in their London walk on 22nd June. One of the last dinner events I was aware of was when I was very ill and it was not long before my first operation so I was not really in a sociable mood or in the best state of health to go out for a meal. Thank you for mentioning the dinner on 6th June, I was not aware of that. I should be able to come along to that.

      I have also just noticed that there is the Annual General Meeting on 4th May at St George’s Hospital. Hopefully I can come to that as well. I think there had been a meeting at St George’s Hospital towards the end of last year that I had meant to go to but I completely forgot about it till the meeting would have been starting.

      I hope your recovery continues to go well. Are you still taking many pain killers for your abdomen? I am sure the soreness will reduce. It is still not that long since you had the surgery, I am sure you will notice it subside. I don’t really get any pain from the wound anymore but it can still be sore but that is normally when I do some silly stomach exercises that might be pushing myself a little too much. I used to do a lot of yoga and hope to get back to it, I should wait a bit longer as it often involves a lot of stomach stuff.

      My operation was at West Middlesex University Hospital with Mt Smith. The surgical team there is very good as well.

      Good to hear that you are feeling better since the operation and that you are recovering well. I look forward to being able to come along to more events in the future.

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