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John_Thain

Living with a hidden illness.

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John_Thain
Posted

I wanted to write this post as it's something I've wanted to write for a while now but for various reasons, haven't. It concerns how an invisible illness (in my case Crohn's Disease) can make life extremely difficult at times. I've decided not to post pictures as I'm aware that there will be people who won't want to see what an ulcerated bowel looks like, so for anyone interested, doing a search of Crohn's Disease will help you.

Crohn's Disease is one of two conditions which come under the portmanteau (if that's the right word) of Inflammatory Bowel Disease (IBD), the other being Ulcerative Colitis (UC). What differentiates Crohn's from UC is that while UC only affects the large colon, Crohn's can affect any part of your digestive tract, from mouth to rectum. The exact cause of Crohn's is unknown, but thought to be made up of genetic, environmental, and dietary factors, and stress. You can imagine my intrigue when a top paediatrician who is an expert in childhood Gastro-intestinal disorders, gave the misleading impression that Crohn's is caused solely by a junk food diet.

The best place to start would be January 2006, after my first set of first year uni exams. I started getting abdominal cramps under my belly button and noticed a change in my bowel habits, where I was going to the toilet at least 10 times a day, and 3 of those toilet visits were before I'd left the house. The pain I was getting always came on last thing at night, and going to the toilet eased the pain. I noticed I'd lost weight but thought nothing of it as I put it down to having to running after buses and having to get from one side of the uni campus to the other in a short space of time. I went to the doctor and was diagnosed with Irritable Bowel Syndrome (IBS), which in all fairness it could have been. I was then given an anti-spasmodic to ease the discomfort. I mentioned to the GP that my mum has Crohn's and would it be worth finding out if that was what was causing my symptoms. I was told it was definitely IBS given that I'd been through a period of stress (uni exams) and I was in the right age group.

Cue August 2011. I had a flare that was completely different to any flare-up I'd had in the past in that my symptoms changed. The pain was moving around in that it would go up my right side, across the top of my belly button, and half way down my left side. This pain could be with me from the moment I woke up to the moment I finally fell asleep, come on in the afternoon and be gone by mid evening; there was one time I'd been fine all day and was just out the door on my way to work and the pain came on so strong, I had to phone in sick. I also noticed there was blood on the toilet paper when I was cleaning myself up (and on the rare occasion, in the stool itself), and the tablets I was given weren't as effective as they had been. I went back to the GP (incidentally the same one who diagnosed my IBS) and was told it was just a bad flare.

I wasn't convinced so made an appointment with another GP, who sent me off for blood tests and arranged a referral to the Gastro-Intestinal (GI) outpatients department for a colonoscopy. My blood tests came back saying I was so anaemic, that that level of iron deficiency would only be seen in girls my age as they're still having periods. The inflammatory markers in my blood also came back raised, both of which warranted further investigation. I then went to see the GI consultant at outpatients who agreed that it should be investigated, and he wanted to do an MRI scan in addition to the colonoscopy. Both procedures involve taking a laxitive (the one for the MRI is disgusting, no matter how much diluting orange juice the nurse adds to it).

The MRI came back showing areas of inflammation in my bowel, with the colonoscopy finding ulcers in my terminal ileum (connects small intestine to large intestine) and in the neck of my appendix. The biopsies taken during the colonoscopy came back saying Crohn's, and I was put on a course of steroids, vitamin D (to stop steroids eating my bones), and an anti-inflammatory. Being on a weak steroid wasn't really helping, so I was put on Prednisolone, which is a much stronger steroid. The steroids were only ever a short-term solution, given the side affects. As I was responding, I was weaned off the steroids, vitamin D and anti-inflammatory, and put on an immuno-suppressant.

Being on an immuno-suppressant means I have to avoid people with infectious diseases such as colds, flu, TB, chicken pox, etc; because immuno-suppresants weaken your immune system, hence I pick up infections really easily (if I have a cold, it now lasts at least 3 weeks, and another month to get it out of my system). I also have to get the flu jab every December, as well as have my blood monitored regularly (initially, it was every week, then down to every 2 weeks, then every month. I have to go back every 2 weeks if there's a problem [i.e. white blood count is iffy]). I'm still going to out-patients, but less regularly (every 9 months now after having to go every 6 weeks, then every 6 months) so you can imagine all the upheaval this disease causes.

I will have to take immuno-suppressants for the rest of my life as currently, there's no cure. I would like to see one for those who want it because Crohn's affects everyone differently; some are more ill than I am. Some have had numerous operations to remove parts of their bowel affected by ulcers, fistulas, and scar tissue. These three things cause the bowel to narrow, which means food can't be digested and absorbed properly, causing malnutrition and weight loss, which can be life threatening.

So now on to how this disease affects my day to day life. There are some days I can't get out of bed because I'm so tired; sometimes my limbs feel like lead. I could be tired because I've spent most of the night on the toilet due to diarrhoea (it's common to get bouts of diarrhoea with bouts of constipation) or huffing and puffing away for nothing more than a blob 1/4 the size of a pea to come out. I could be up half the night because of the abdominal cramps or it could be because I'm anaemic again. I get inflamed gums, slime after I've had diarrhoea (plus or minus the presence of blood), constipation, nausea, sore ankles, unexplained bruising because of the medication, and a sore backside because toilet paper feels like a razor blade or it feels like I'm passing glass. Then there's the abdominal cramps, sore eyes, no energy, feeling as though you've not completely finished, and thinking you need to go only to discover you don't and then have to run back to the toilet 5 minutes later.

Eating can be a problem for various reasons. It could be I'm not hungry (side affect of the medication I'm on) or it could be that it's something that could trigger a flare (nuts, eggs, raw vegetables). I have noticed that something that I was once fine with, has now turned against me (e.g. eggs) and vice versa (I'm now alright with nuts). Salads and raw vegetables will always be a bug bear, especially raw onions and peppers, so I have to be careful when I'm out that I don't eat too much of it and cause a flare.

Relationships can be difficult, especially dating and sexual relationships, and work as well. When I tell guys I have Crohn's, some have accepted it, whilst others treat me like a leper. Responses I've had include "Is it contagious; did you catch it from someone you had sex with?" to "sex is important to me; I don't want to hurt you." Although the latter hurt because I thought I was finally getting somewhere with someone, I realised it's their problem, not mine. Sex is always going to be difficult during a flare, so I avoid it (bit hypocritical as I haven't had my first time yet). I will say this disease makes me feel really unattractive and you can see why. I would love nothing more than to have a boyfriend and do all the stuff that being in a relationship involves. But, they would have to accept that there's always going to be a third wheel in the relationship.

I am fortunate that I can still work, and manage to organise my out-patient appointments and routine blood tests around my shifts. There have been times I've had a flare and gone in to work up to my eyes on paracetamol. There have been times I've started flaring at work. I remember one shift where I was on myself as they couldn't get cover for the person I'm usually on with. It was busy, raining, and both cubicles in the male toilets were out of order so had to use the disabled one. I spent 45 minutes on the toilet because it was a stop, start, think you've finished but you haven't diarrhoea day. I know because I had my watch with me, and was then accused of skiving.

I hope to provide an insight into what it can be like having an illness you can't see. People are more sympathetic when it's something visible like eczema, or a well known hidden illness like epilepsy. IBD isn't as common as you think, but more and more people are being diagnosed every year. I can only talk about how it affects me personally, because as I said earlier, Crohn's affects everyone differently.

Of course, it's all to easy to fall into the "why me" mindset. I have turned the negative into a positive by taking up volunteering with student doctors, nurses and allied health professionals. I did this moreso for the expert patient side of it as I think it's helpful for the students to meet someone who has to live with a chronic illness, as they can only learn so much from a book or medical journal.


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John_Thain
Posted

A lot of people with Crohn's find it difficult to talk about the illness, with the subject of having a shit seems to be a bit taboo. I don't see why it should as it's something everyone does. I once posted the following on facebook in response to a comment someone saying they find it embarrassing. "I don't see the point in getting embarrassed about having Crohn's as let's face it, we all need to have a shite; I just have a problem with that process." The only time I think I've been embarrassed was the first time I was on holiday with mountains of medication. I remember thinking security was going to stop me and confiscate my medication (too many border security programmes on tv) and if they didn't do it on the way there, I'd be stopped in Spain and it never occurred to me to learn the Spanish for "this medication stops me being ill." But the worst was at breakfast when I was taking the steroids. There was this woman who kept staring at me as though she'd never seen anyone take a tablet before in her life. I had half a mind to go up to her and ask if she'd like some prednisolone with her grapefruit. The other half wanted her to stop staring and let me take my tablets in peace.

I know someone somewhere will be wondering if I've ever shit myself in public. Yes I have; twice. The first time was when I was waiting at a bus stop (and was fortunate enough to be able to go home to change) and the second was when I was trying to get to a public toilet that wasn't in use at a department store in town. I've had this long enough and know enough to know that it can and does happen.

There are many other advantages of having Crohn's. 1. I know where all the good public toilets in town are and which ones to avoid. 2. Toilet paper tester can always be a back up career. At least I'd be getting paid for toilet breaks. 3. As I said in my last post; volunteering with medical students and student nurses as to them, meeting someone with a condition helps make it more than just something they've read about in a book. 4. Getting rid of all the ones who are just after sex.

Since writing my last post, I have now started working full time; which is something that some Crohn's sufferers can only dream of. It is challenging changing a routine your bowel has been used to for 7 years and it is challenging trying to get an appointment early in the morning for my bloods without being late or having to leave either during work or early. I'm fortunate to be going every 2 months to have my blood taken, with the goal being having it done every 3 months. Then there's going to outpatients, which for me is now yearly rather than every 6 months or 6 weeks. I can imagine how annoying it must be for work colleagues if I had to go every 6 weeks. But then again, this disease is pretty disruptive.

The medication I'm on means that I have to get the flu jag every year and avoid people with an infectious disease. I'm determined the latter isn't going to stop me as I'd really like a job in the Infection Unit at my local hospital. You just get yourself back into a routine after having a flare, only to be hit by another one. It really is a horrendous disease to have to live with, which is why I've taken to writing about it here as I've found people vary in their understanding of the disease. I'd love for everyone to experience a Crohn's flare so they know what I and other Crohn's sufferers have to put up with.

I know some people will be quick to say I'm bitter and resent having Crohn's, but consider this. People come and people go; I'll always have Crohn's until the day I die or a cure is found (whichever comes first).


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JohnAllan
Posted

Hi John,

Thank you for your explanation of such an Illness.

You are right, Not a Illness that is widely spoken about.

How we " FEAR" what we do not understand.

Best,


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Posted

I definitely can understand how difficult it is to live with an invisible illness. At least a good number of people have heard of Crohn's disease at some point in their life. My condition is so rare, I've had to explain it to doctors, because even they had never heard of it.

I have phenylketonuria (PKU, for short).The simple explanation I give most people is my body can't process protein correctly, but for the purpose of this thread, I'll go into more detail here. In a normal body, when food with a lot of protein is consumed, phenylalanine (an amino acid found in all protein. Phe, for short) would be broken down by the PAH enzyme into tyrosine, which would break down into melanin and dopamine. In my body, my enzyme is mutated, therefore the phe breaks down much more slowly. That causes everything to get backed up, and phe builds up in the bloodstream, causing a number of problems. Mental retardation and seizures are two big problems that can come from the condition not being treated.
Treatment is a lifelong, low-protein diet. This can vary for different people depending on how severe their case is. I'm lucky in that my case is one of the less severe ones, so I can actually eat a few high-protein things. Even so, I don't get much protein. I can have 16 grams of protein a day, which isn't a whole lot. A block of ramen is 10 grams, to put that into perspective. Someone with a more severe case may only eat 3 or 4 grams a day. Those with a case that severe usually can't eat much normal food at all. There are special PKU foods created especially for those people, so they can have enough to eat in a day. Treatment also includes a medical formula, which I have to drink every day. It provides me with the nutrients my body is unable to get otherwise. It tastes pretty nasty, but I'm not bothered by it anymore. I'm used to it. I love making other people try it though. It's hilarious to see their reactions.
There's no cure, but there are a few additional treatments one can use with the diet and formula. There are pills called Kuvan, which help to raise protein tolerance. The downsides are you typically have to take a large amount of pills, and they don't work on everyone. Another, much more effective treatment is currently in development called PegPAL. It's an injection, and it replaces the mutated enzyme, therefore allowing our bodies to function normally. We can live as if we don't have PKU, even though we still do, and we'd need to continue taking those injections to continue like that. Unfortunately, this treatment is still going through clinical trials and won't be available for everyone for a few more years.
It can be difficult to live with. There's the constant feeling of being different when you can never eat what everyone else is eating. I used to have an obsession with feeling normal when I was young, because I never really did feel normal. I didn't like talking about my condition either then. I'd try to avoid questions as much as possible. I'm a lot more open about it now. Travel is difficult, because I need to know what food is available where I'm going ahead of time, and I have to have access to a kitchen wherever I'm staying. I've had to ask special permission to use different facilities' kitchens before. On top of that, just transporting my formula is difficult, as there's a lot that has to go with it.

I wouldn't say it's all bad though. I have an excuse to get out of participating in gross food contests, for one thing. Also, since I get my blood tested so often, I'm not afraid of needles. It would be nice if this condition was more well known though, so I wouldn't have to explain it so often.


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ispyall
Posted
Hey, man, I suffer from neuropathy in my feet causing to throb, swell and constantly hurt like the burn of an iron. I feel your concerns about pain. I tries everything, some medications which almost killed me to some that would work for maybe three weeks then nothing. Finally after some research on my part, I asked my doctor for a prescription for medical marijuana. I have been on it for about three months and have experimented until I find a combination of THC and CBD I am now almost pain free. Please consider doing some research as I have met a number of people recently, some with Crohn's, who are now leaving almost pain free lives. There is no chance of overdosing and some of the side benefits are slower aging and a clearer brighter brain function. Take Care. I hope you find a good combination for you. Please try and see the 6 part documentary on medical marijuana called "The Sacred Plant"

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