Colitis to Crohn’s… An Unconventional Journey

So… As many of you know, at 17 I was diagnosed with Ulcerative colitis. I suffered quite badly, the condition itself was very severe and my body was giving up. The only option I had was surgery so that was the route taken. I had a full proctocolectomy done in two stages, the second removed my rectum (fucking right it wrecked him, near killed him) several years after my first surgery as it was still severely infected and causing me problems. 

It was at this point that I breathed a wonderful sigh of relief. My big, stupid colon was gone, along with the disease that affected it and although life was a bit more complicated in the long term (having an ileostomy and all) all the bad stuff was over. Boy was I wrong.

I’ve always had issues, the worst of which so far has been the dermatitis. It doesn’t heal and I’ve shown you the lesions I get every now and again that are seemingly unexplainable and incurable. I’ve had problems with nausea, cramps and “inconsistent” bowel movement from the day I had my ileostomy put in but I was just told that was par for the course and I had to deal with it, pathology showed it was colitis, not crohn’s. My Consultant at the time said I confused him because I showed all the signs of Crohn’s disease but the pathology didn’t match up.

Fast forward to about 6 months ago and I had been getting really bad bouts of nausea (worse than normal), I was losing my appetite and I was suffering intermittently with bad abdominal pain. I had just started a new job and was maybe a little stressed through my want to impress but nothing I considered bad. I pushed on as it got worse and worse but I kept convincing myself it was fine and it would pass. When I first seem my current consultant he confirmed what I had been told by several doctors between the Royal A and E and an NHS consultant, I either had adhesions caused by scar tissue or crohn’s disease had developed. Adhesions were ruled out with MRI and CT scans so I had the OGD and ileoscopy. Now I’m looking at either a severe bacterial infection or, and most likely, crohn’s disease. Oh Joy.

Now for some statistics. It seems that, so long as my diagnosis goes on Friday the way I expect it to, I have went from a Ulcerative Colitis sufferer to a Crohn’s colitis sufferer. If so, I am a member of one of two parties. Party one is the 10%. The one where 90 people are dressed as mermaids for the under the sea dance and 10 of us show up wearing cowboy suits like a bunch of dicks. Basically, the two diseases can be so similar that the pathological testing of my colon post surgery could have given anomalous results, So basically, I could have been running around with crohn’s disease all these years none the wiser. Or I’m in party two. This party is filled with under 10% of us. This is the one where the dicks show up to the theme dance, don’t even make an effort then complain that the party is shit and they want to go home. If I’m heading to this party, it’ll mean I developed gastroduodenal crohn’s at some point in the last few years. Although possible, due to the vast numbers of people currently being diagnosed with IBD’s (irritable bowel diseases) statistically the chances of it happening are rare. My consultant seems to be leaning towards the later option, that I’ve been unfortunate enough to develop Crohn’s after suffering from Ulcerative Colitis. To be honest I think it’s because no one wants to second guess my old consultant because he was the fucking man. Oh, and apparently he is incredibly frightening. 

So yeah, that’s where I am right now. Statistically I’m in the key age bracket for IBD development (18-29) and considering my past with bowel troubles, diseases and surgery, I can’t say I’m shocked. As I explained before I’m being super negative to save my brain should the worst news come, so I apologize for seeming so certain over something that isn’t. I just look at this as another string to my already full bow of disease (that sounds like a nickname for someone’s penis, “the bow of disease”.) I mean, I’ve been through this before and the first time was much worse. I’m probably more uncomfortable on a regular basis than the time before but no ass means no diarrhoea which is blooming marvellous. The worst thing about first time round was the constant fear or shitting my pants, the pain and nausea I can deal with. Life is always better without danger farts in public.

Advertisements

De Ja Vú

image

As I said in my previous post, I’ve had a recent set back with regards to my health. A set back that feels like I brought Doc Brown’s Delorian back to 2003.

For the last while, I have felt pretty sub par. I was getting pretty bad bouts of nausea, my appetite was waining and I was experiencing cramps like I hadn’t felt in years. I’d started a new job with a world leading company so I was pushing through it, I didn’t want to risk this new opportunity I’d been given. I thought it was just another phase of this stuff that would pass given enough time.

Boy was I wrong. Everything kept getting worse. I was sweating like Stuart Hall at a scouts meeting all the time and my whole body was in agony. Walking for the bus in the morning was like climbing a mountain and I constantly felt like I had done a few hundred squats. One day a few months ago, I almost collapsed in work and my manager sent me home. I spent most of that day in a and e, and the next two days in a hospital bed.

Let’s take a step back though. All those years ago, when I went through the nightmare of my second surgery, I was told that the worst of it was over, that the ulcerative colitis was all gone, that I could concentrate on getting strong and healthy and move on with my life. When my mental health degraded, I almost gave up but I got through that and made me into a much stronger person. I’d finally thought I could move on with my life.

Flash forward to that day in February, I lay in my hospital bed as the consultant I was under did his rounds. He told me straight, the abdominal pain, the lack of bowel movement, all the other things I mentioned could mean one of two things. Either I had adhesions caused by scar tissue or I had developed Crohn’s disease.

My heart sank. Crohn’s disease. I did not want to go through this again. I cried, I huffed and I denied. It was only a possibility but it was a possibility I had already experienced and I thought I never would again. Eventually I got my head around it but my body still wasn’t playing ball. I got referred to a new consultant as my old one had retired and I went along to my initial appointment. He reaffirmed what I had already been told and scheduled a small bowel series to start the search for the truth. I waited a month and with no appointment and with a bit of investigation discovered that the waiting list for a small bowel series on the NHS, a basic procedure that is crucial to the identification of bowel diseases, a procedure that had a waiting list of a few weeks in 2003, was now at 9 months. I was absolutely furious and completely distraught. There was no way I could live this way for that long.

Then I remembered something, I HAD TAKEN PRIVATE HEALTH COVER IN WORK! YYYYEEEEESSSS! Two weeks before I went out sick I took out BUPA cover but I hadn’t gotten any paper work and I wasn’t sure if they would cover me. I phoned them more I’m hope than expectation but was told, to my absolute delight, that I had a great package. I’ve never felt relief like that before, it was a weight off my shoulders.

It was at that point I started the journey I’m on now. In the space of two months, I’ve gone through 3 bouts of testing, including an MR entroscopy (a more detailed version of a small bowel series using an MRI scanner) and on Friday I had an OGD followed by an ileoscopy. I waited around anxiously afterwards while my consultant (who I shall call Mr. Ling) finished a surgical procedure he had when finished with me. When he walked in my heart jumped into my mouth. He told me they discovered quite severe inflammation in my oesophagus and my duodenum as well as a hiatus hernia. The two options are either a bacterial infection or, and more likely, Crohn’s disease.

It was at that point I felt the strangest emotion. Relief. I thought I would be devastated but I’m not. The first time round, I was a 17 year old kid, embarrassed at the fact I was shitting constantly and convinced I was dying. Now I’m 28, I’ve climbed over more hurdles and obstacles that I thought I’d ever encounter in a life time and I am a completely different person. I’m not that weak willed, frightened kid who went to hell and back.

I know it isn’t definitely Crohn’s but I think pessimism is my best weapon. If I get good news I’ll be delighted but if it’s bad then at least it was what I expected. I don’t want to experience the heart break and disappointment of 10 years ago because it would be the end of me. I’m going to get through this and I’ll live with it the way thousand of the rest of you do but it’s probably going to be a long, hard road to travel before I get there. Better days ahead.

NB

I’ll be dropping a post in the next day or so with a more detailed run through on my current state of health and about duodenal Crohn’s. And I’ll throw a few stats about colitis sufferers who develop it later in life or are misdiagnosed. For the morbidly curious. Sick fucks.

Jesus, it’s been a while…

I’m back! I decided last year to take a little break from the blog, concentrate on getting my shit together. Well that little break turned into a looooong fucking time which probably has as much to do with my world class procrastination skills as anything else. So apologies. In the mean time, I got my shit together, I got myself a new job and then I most recently had a big enough set back with regards to my health (Bag based updates to follow). Still, I’m happy for the first time in a long time, a big reason for which is a wonderful girl who came into my life when I least expected it. Even with the same poor health bullshit, I’m doing pretty well. And now I’ve returned to the wonder of the blogosphere, you’re going to have to put up with my shit again. Sorry, not sorry. It’s good to be back.

Dealing With Death

There is something that I’ve been trying to deal with for a long time now and that I have been using the counselling for. I’ve made big strides in learning how to cope with it and I am coming to terms with it. Now just to clear it up, my Mum is not dead but each day I find myself trying to deal with her death. The sad fact, the one that is tearing me apart, is that my mummy is killing herself. Day by day, I watch her health deteriorate and know I can do nothing about it. There’s a fairly long history.

My mum has never been a particularly healthy woman. Back when she was fit and active, working and playing an active part in Camogie here, she was slim but her diet was terrible. In her 40s, she was diagnosed with osteo-arthritis and it all started. Instead of taking this as a warning to lose what little weight she had on her and look after herself, she took it as an excuse to do absolutely nothing, even so much as walking to the shop that was 30 seconds from our house. With any semblance of exercise she may have done previously now gone, her diet caught up with her. In fact, I would go as far to say she started eating worse out of laziness. She put on a lot of weight, so much so that her knees crumbled under it and she was heavier than me, despite being a foot smaller than me and also the fact I was overweight.

After years of abuse, the horrible diet and the 40 cigarettes a day, my mother had a heart attack. It wasn’t a huge one. She got that warning broadside and was given a second chance. They put an arterial stint in and set her up for rehab to lose weight. Then she got a phone call one day, saying they weren’t happy with something in the chest x-rays when she had a heart attack. It turned out she had lung cancer, thankfully it was caught early and seemed to be treatable. They had to operate, but because of her size and her history of smoking, they couldn’t do it lathroscopically and had to open her up right around her rib cage. She had a really hard recovery, so much so that she was too weak for chemo (we were told it would probably kill her) but she recovered. The surgery and everything around it meant she lost almost 2 stone. She made a commitment to us that she was going to get healthy now she had been given this second chance.

After a few months, my sisters and I realised this was an empty promise. We all caught her smoking again, had several people tell us she was smoking again and her diet was probably worse than ever. She kept saying she was exhausted and knackered and blamed it on her cancer recovery, despite the fact she was given the all clear months before hand. She was either oblivious to or ignoring the fact that it was her lifestyle that caused all her problems. The tension was unbearable. My sisters wouldn’t come to the house and to be honest I was so angry at her. I was frustrated. I was heart broken. We all said things, we all tried to give her advice, tried to get her to go to weight watchers, told our GP. After her last meeting with her oncologist she said she was giving up smoking. That was in November and I was stupid enough to believe her. I know now that she has been seen smoking by family friends and my brother in law several times in the last few weeks. She is fatter and weighs a lot more now than she did before her surgery, despite losing two stone during her recovery. Our GP called her down and had a word with her but the only effect that had was for her to get defensive and say we were talking about her behind her back.

My mother is an adult. I know this. She makes her own choice and however hard they are for me to deal with I have to learn to. She doesn’t have the willpower to change the habits of a life time and to be honest she isn’t willing to change, regardless of what help and advice me, my family or anyone else has for her. I love her, she did everything for me all the times I was sick and has been a great, caring mother for the most part. She is only 61 but if she keeps going as she is it won’t be long until her second heart attack. My sisters and I have been told that when (not if) she has another one, it’s highly likely that it will kill her. And that’s if the lung cancer doesn’t come back first (which, if she keeps smoking and eating like she does, it is guaranteed to). Every morning I wake up hoping she has too. She can’t change, we can’t change her and I’m trying to respect that and try and enjoy what time she has left with us. It’s just really hard with this hanging over our heads.

Getting Back On The Wagon

Last week was an odd one for me, tough. Emotionally I was fine but I (once again) got sick. My clubs first hurling session of the year was last Sunday and I’ve decided to make a big commitment to it this year, and was there bright and early and busting to go. The problem was, it snowed heavily for days beforehand and it was absolutely freezing. My immune system, if you haven’t picked up on this yet, is pretty shitty. It is made worse by the medication I am taking at the minute so I don’t think a snow laden park in Belfast in negative temperatures was the best place for me to be. By the time I was done, despite being head to toe in under armour and layered to the teeth, I got sick. I can’t begin to describe how cold my feet were, they felt like one of those cartoon scenes where the protagonist’s feet are ice cubes. I couldn’t breath properly because I’m asthmatic and cold air is thin and it is hard to take a deep breath.

It started as a head cold the next day, I had to pull out of a planned kettle bell session (which I wasn’t really looking forward to if I’m honest) and got drugged up and hit my bed for two days. This did a grand total of fuck all, because I ended up with a chest infection. My old nemesis, the illness I am most familiar with and which normally leads to much worse situations, had returned to fuck with me. Antibiotics, pain killers, lemsips, the whole shebang. I have been absolutely fucked, just in agony all over. It was really bad timing. I had gotten back into the swing of exercising, was finding my feet again and I came crashing down again. The second medium term illness I had gotten within a month, one that would fuck with my appetite again. So for a few days I took to eating what I craved when I craved it. I didn’t eat a lot, I was mostly staying within my calorie goals but I was eating absolute shit. Takeaway, chippies and waaaay too much sugar. I haven’t been consuming sugar at all but I ate sweets, crisps and fizzy drinks. Physically, I didn’t put on any weight but by Saturday I was starting to feel that other old friend of mine self loathing. Self loathing and guilt for eating like a dickhead.

Thankfully the cravings for the sugar and shitty fat I was consuming last week haven’t stuck around. I’m still sick, but I’ve got back on the wagon today and mentally I feel ok. I feel ready to throw myself full titty into the routines I had set myself, in fact I’m ready to take them a lot more seriously. I retreated back into my old self for a few days and I didn’t enjoy being there again, it has made me realise that I really have turned a corner in my life and I’m really making these life style changes I’ve planned permanent. I’m really proud because it is the first time I’ve fallen off the wagon and been able to get straight back on. I’m proud because I’m able to see that, through this, my mental health is improving and the counselling seems to be working. Only a stone and a half to try and lose in the next two months. WEE BUNS!

My Wee Fuckin Regime (My Guide to Weight Loss)

So, most of my posts have so far been about how shit everything in, so for once I am writing with an air of positivity (I’m sorry if I fail, but pessimism is pretty much my religion). I’ve said before about how I’ve focused a lot on losing weight. There are a huge amount of reason for me to do this. Get healthier, stop being fat, gain a semblance of self-confidence, hope that someone somewhere might find me attractive. I basically got sick of being this fat fucker who was dependent on all the wrong foods for all the wrong reasons. I’ve tried loads of times before to bring these kind of lifestyle changes (I don’t diet, this is a long term solution) but I have always failed. I’ve tried loads of different things but they were always so strict and inflexible that I would end up falling off the wagon. I’m odd because at my heaviest I was 19 stone and 8 pound, but I didn’t look anywhere near it. I’m a big fella, tall, big legs, big chest and arms, so I carried my weight quite well. Everyone told me I wasn’t fat I was just a bit overweight and I could fix it. I was fat though, I know I was so no matter what anyone else ever tried to tell me I knew what I thought was the most important. I had made a decision to change my lifestyle a while ago and when me and the girlfriend broke up, I found this real motivaiton to better myself. I think I got so into it because it gave me a focus and acted as a distraction.

At first, I got really into my exercise, as well as the diet change. I was addicted to cycling, so much so that I was doing two sessions a day of one hour and still being restless. I would just look at my exercise bike and think “if I don’t get on that and cycle my legs off right now I am going to have a fucking panic attack”. I knew the key to weight loss was creating a large enough calorie deficit and eating the right foods but the exercise gave me leeway and allowed me to eat more which at first was helpful. After A few weeks, I really started to lose my appetite. I had started new medication and depression and anxiety can also have that effect on you apparently. I hardly ate because I was never hungry, I wasn’t hungry because I was so anxious and worried about everything. I ended up having to schedule meals and force myself to eat them. I knew that not eating is detrimental to weight loss and can lead to you storing even more fat from what you eat so I had to work hard to not succumb. After A month, I’d lost about a stone and was feeling so much better, healthier physically and my energy levels were up. I was really enjoying exercising but then I got that skin ulcer on my stomach. With it being where it was, right under my stoma and where my bag attaches to my skin, gravity was my enemy. My bag constantly pulls a small amount that I don’t feel, but with the ulcer I felt it constantly and it was agonising. I had to stop exercising, which didn’t help me with all the excess energy. I lost the cathartic benefit of the exercise and it made me mental health take a bit of a down turn.

Now though, the ulcer is healing and I’ve been exercising hard for the last two weeks. I kept up the diet when I wasn’t exercising and still lost a lot more weight. Diet is 90% of the battle and I have overcome all the obstacles I met in the past. I have a horrible sweet tooth but I’ve went cold turkey on sugar and I don’t get the craving for it anymore. I’ve combined elements from a few different things I’ve tried over the years. I read a book called the Four Hour Work Week recently which was a great help and I got a lot from it, but the diet in it was so rigid that I couldn’t stick to it. I’ve tailor made that and added a few other things to suit my needs.

One of my biggest issue, as someone with an ileostomy, is my 5 a day. I can’t eat fruit or vegetables in even moderate quantities, otherwise the shit flies out of me like nobodies business, I get dehydrated and eventually get sick. I’ve pretty much had to cut them out of my diet completely, which is tough. I also can’t eat nuts which are a key element for getting good fats into your diet, so I’ve had to work around that too. I therefore get most of my major nutrition (i.e. vitamins and minerals) from supplements. I take a multi vitamin and I also take sea kelp and Acai Berry everyday. They’re both great, they help boost your metabolism and curb your appetite which was a big thing for me. I also drink a lot of tea, green and standard, and coffee because caffeine is amazing for fat burning. I can’t take actual fat burners because of my anti-depressants (apparently you turn into a crazy if you combine them) so I make it up with those. I also drink about 5 litres of water a day which is probably the most important thing for me, I get dehydrated so easily so this helps a lot (obviously). I don’t eat fast food anymore (I’ll have something healthy from the chinese) and I avoid as much processed food as possible. Thing is, I don’t punish myself needlessly. I’ve spoken to dieticians and professional coaches who have told me eating things like back bacon, sausages and many other things are ok. I eat bacon and eggs almost every day. There are ways of getting replacements for fast food that still taste good, for instance I make home made oven chips with olive oil, garlic and chilli and they are amazing.

It hasn’t been easy, especially with my recent emotional turmoil and downturn in physical health but I kept at it, I pushed through and I am actually really proud of myself. I am now 17 stone 1 pound, a 2 and a 1/2 stone drop, though I still have 1 and a 1/2 to go to my next goal. I’ve lost 8 inches of my hips and 7 1/2 off my waist. I’m down a jean size and a shirt size, in fact the smaller jean size are a little bit too big on me now. My waist is a healthy 35 1/2 inches. My body looks the best it has in years, although I still have a bit of a belly and love handles, although they are substantially smaller than they used to be. It turned out I never had the motivation or dedication to stick to anything like this before but now I do. I’m doing this for me, the first thing I’ve done for me in years and it feels good. I feel good. I feel better about myself and although I’m not walking around like some kind of dickhead peacock thinking I’m the bees knees, I feel a bit more confident and positive about myself. I still have alot of mental and emotional issues to get through but I know if I keep at this and reach my goals that it is only going to help me with all the other negative facets in my life. I’m changing myself because I want to and need to and I feel good about it.

(if anyone wants more details on what I’m doing, because it is manageable and not too strict, then let me know and I can send you more details on exercise regimes, my diet and where to get supplements for a decent price)