An Old Crohn Speaks Update (My Experience of Chron's Disease)

Member Name: DavidJWest

Product:	My Experience of Chron's Disease
Date:	14/03/01 (2467 review reads)
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As of 9th Decemeber 2002 I have added my recent experiences at the end. I warn you there is one swear word as well.

Crohn's Disease is a misnomer. It isn't a disease so don't worry, you won't catch it from me just by reading this rant. It is a condition which affects the digestive tract and it has no cure at the moment, it is classed as a chronic illness.

I have written about the illness followed by my own experiences, it is not for the squeamish so be warned!

My motivation in writing this is to help others who either suffer or suspect they may suffer from the illness, there is hope and my story illustrates this.

The illness affects about 1 in a thousand people so it isn't all that rare. IBS (Irritible Bowel Syndrome) and Colitis are both similar conditions, although not as severe as they affect a smaller area of the digestive tract, Crohns can affect anywhere from the mouth to the anus. Usually first diagnosis occurs between the ages 20 and 35.

The illness is not fully understood at the moment as research is still underway, the number of people affected has risen rapidly over the past years but is now showing signs of stabilising.

The causes are not fully known, some think it is hereditary, others say caused by stress, poor diet and pollution. The MMR jab has been implicated as well, so has cow's milk!

It is thought that the white blood cells in the body attack various parts of the digestive tract as though it were a foreign body. This causes ulceration of the tissue which manifests itself as pain initially. More severe attacks will cause problems such as diarrhea, high temperature and a feeling of tiredness.
It does not usually result in death although complications can cause this to happen.

So where does my story begin in all this? Well I can remember at the age of about 7 having the most excruciating stomach pains after moving house from Wales to Scotlan
d. We used to move house a lot then as my father was a flying officer in the RAF and so got posted around a lot. The local GP prescribed me Milk of Magnesia and said the pains were probably caused due to the stress and trauma of moving! Hmmm.

Well I am not going to question the knowledge of doctors who have been a lot of help to me, but I wonder if it was Crohn's even at that tender age. Some GP's think that the inoculations given to children when they are babies (I THINK it's the measles jab, not sure) can in some cases trigger Crohns. I am not for one minute going to suggest people should not get their babies inoculated because of these alleged risks, I am hoping to start a family soon myself (still practising) and will have my offspring immunised as the tiny, theoretical risks are far outweighed by the benefits.

Since then (1977) I didn't have cause to go to hospital (other than for a broken nose!) until May 1997 when I had severe pains in my foot - please bear with me here!

It turned out to be gout, at the age of 27 I had gout. The doctors had never seen it before in one so young, but it does make sense as gout is a form of arthritis which is another one of the alleged symptoms of Crohns.

Around this time I was very worried as I was starting to bleed when I went to the toilet (told you it was gross) and went to my GP fearing bowel cancer or some other such horror. My GP was very blasé and thought I probably had piles and made me an appointment to go to the hospital for a 'digital examination'.

I am sure you would all howl with laughter as I thought in my naivety that a 'digital examination' involved computers of some kind. Well it doesn't - digit is another word for finger! Embarrassing for a young man I can tell you, and uncomfortable but at least after the ordeal I was told I had a very slight fissure which is in fact a tear in the sphincter. Gross again and painful! This is also
another of the symptoms of Crohn's, but two and two hadn't yet been put together by the doctors.

So I went back to my GP after the results and by now I had begun to develop mild stomach pains, around the navel area. It was like someone had their hand inside my stomach and was gently squeezing it, not a digital examination though.

My doctor decide I should go back to the hospital (Leeds General Infirmary) and have some more tests. I was referred to a specialist in Endocrinology (Digestive Doctor) who asked me to come back to have a Flexible Sygmoidoscopy. Well as you can imagine I wanted to read up about this procedure as it sounded pretty awesome and guess what? It involved having something inserted into me again. The comforting thing, if that can be said of this procedure, was that it said in the leaflet I could be sedated or it could be performed without any kind of anaesthetic at all. To me that meant it wasn't painful - more later!

The day before the operation I had to eat only toast and drink plenty of clear fluids so my bowels were clear. Also I had to drink an utterly disgusting concoction which was a very powerful laxative. I think it was called Phospho-Soda but I can vouch for it's incredible disgustingness. I remember as a young child having to drink a black currant flavoured drink called Pripsene (I think that's how you spell it) as I had worms - don't laugh! Pripsene tastes like Bollinger Champagne compared to Phospho-Soda, I have a great deal of sympathy for any poor mortals who have to drink it, I probably will have to in the future some time.

Advice here is to (I am gipping as I type this) dilute it with lemonade and hold your nose as you drink it down as quickly as possible. Be near to a bucket or sink or toilet just in case you decide to recycle some of it as I did.

So the day of the flexi-sygi (as the nurses playfully called it) dawned bright and I walked the two miles or so to th
e LGI. I decided to walk as it was a lovely sunny summer day, mistake!

After waiting slightly nervously for about half an hour in the waiting room, I was asked to strip and sat again in my pants and a rather tatty NHS dressing gown, I forgot my own.

Next I was given an enema, which you really don't want to know about. Kind of like a digital examination performed with a robot's digit, this had the desired effect of me visiting the toilet to perform another large download. Of what I am not quite sure.

So on to the 'operating theatre' and I was ordered to lie on my side and draw my legs up. Worry factor ten. I say operating room because that was how it felt. There was a doctor with a nurse to help.

Next something akin to the nozzle used to refuel a car was inserted with a large tub of KY jelly and the doctor asked 'would you like to watch on the monitor?'. Of course he was putting a camera up my backside, and he said it so matter of factly. Did I want to watch on TV as he twisted this thing (oh yes flexi!) Further up and into my body. No, I wanted to die, the pain was just about unbearable as I tried not to cry out in pain in front of the nurse, who under normal circumstances would have been rather more a focus of my attention. Advice time, ask for sedation if you have this, a frying pan over the head, morphine, whatever. I can safely say this was the most painful experience of my life, don't try to be macho like I was get pain relief! Those porn stars sure do earn their money!

After that trauma which seemed to take a couple of weeks but was more likely about 5-10 minutes I dressed and began to walk home.

Surprisingly I felt OK, not sore really but the worry was ermm flatulence. You see when they put the camera into you they pump air in as well to reduce the friction, to open your bowels up more. Now I daren't allow any of this air to be expelled as I had taking the laxative, had an
enema and about a gallon of KY Jelly and didn't want to 'mess my pants' for want of a better expression.,

That was the longest walk of my life, I contemplated the days events as I sat on the throne when I got home and prayed that the photos or whatever came out OK.

Luckily for me they did and the specialist summoned me to say that it was good news, I was all clear. That was nice to know, but I still had the nagging pains which were becoming slightly more than just nagging and more frequent. So the doctor said please come back for a Colonoscopy.

Oscopy, to me this word means having something stuck up my bottom. I don't want it not again! Reading the leaflet at home I was rather concerned to see that you HAD to be sedated this time as it was more intrusive than the lovely flowery flexi-sygi as it went further into the bowel. Yikes!

After consuming more of the lovely nectar of Satan that is Phospho-Soda I went to the dreaded LGI. This time I had my new girlfriend Melanie to come with me. We since have become man and wife, married on 7th July 2001 and we sure have been through some traumatic times regards out health, I may post her story on here if she let's me! Anyway I just want to add here many thanks for the support Mel has given me over the years, I am sure most girls would have given up on this wreck of a 27 year old as I was then.

Mel waited patiently as I went through the same procedure (this time with my nice fluffy dressing gown) and the enema before being sedated.

I awoke with no pain at all and asked "is it over?" In a suspicious tone, not believing anything had happened. To my relief it was all over again and I hadn't felt a thing, if only I had known that with the flexi-sygi!

Result time came again and the specialist said once again I had nothing wrong with me. By now the pains were getting less and less frequent so I put it down to 'stress' and decide
d to try getting on with my life again.

Until October 1997 when I woke up in the middle of the night with excruciating pains in my stomach again. This time whoever it was who was squeezing my intestines (aka bowels) was not messing about. I went in to work as the pains were not constant, only about 10 seconds every five minutes or so.

I couldn't stand the pain at work so after a couple of hours asked to go home sick, feeling a bit of a fraud for asking as it was only a stomach ache. I drove all the way back to my mums in Scunthorpe (about 50 miles) as I was so worried and scared to be by myself. At that time Melanie and I were not living together and she would have been working.

My mother was very supportive and suggested I eat something to see if that helped. I wasn't up to much so just had a bowl (not bowel) of corn flakes. DO NOT eat corn flakes if you have Crohns, there is a strong suggestion that any form of corn will exacerbate the situation as it is hard to digest. Another lesson learned!

My pains were fairly well consistent until the following morning when I could take no more and my Mum took me into casualty.

I was admitted as an emergency case with suspected appendicitis and after much prodding, x-rays and scratching of heads the doctor said he wanted to operate to see what was going on inside me. The thought of being opened up just for a look-see seemed rather scary to me, but I wanted the pain to go so much I agreed and two hours later I awoke from the operation.

The doctor came to see me and seemed quite pleased with himself as he told me I had Crohns Disease and he had removed 18 inches of affected intestines. I expected him to hold this part of me aloft as a trophy he seemed so elated, I wanted to ask a dozen questions at once, what on earth is Crohn's was uppermost in my mind.

Looking down at my stomach I was alarmed to say the least as I had a gash all the way from my navel
to my 'bikini line' you know what I mean. I think back with amusement as I was given a razor and asked to shave myself before the operation, I took a few moments to twig what they were on about I can tell you! Seventeen stitches adorned my six pack (joke) but they don't use stitches now, they were metal staples! The thought of the doctor in the operation asking the nurse to pass him scalpel and then a stapler somehow amuses me! Cello tape nurse! Blue Tac?

Anyway I was pleased after coming to terms with the operation as I now knew what was wrong and that pain had gone! I felt elated that this veil of pain had been lifted from my consciousness. I was sore from the operation and had a drip sticking out of my arm which was a pain in more ways than one. Much of my time in hospital was spent watching the drip as I was terrified that a bubble of air may go into my vein which could have killed me - is this true, please post a comment at the end brave reader if you know about this.

The day after my operation I had a bath unaided and I scrubbed the green stuff out of my wound. It was still a bit sore but so what? I remember watching the England-Italy game which was a 0-0 draw and also trying not to laugh at some comedy or other on TV as it hurt when I laughed.

The worst thing for me was that I couldn't eat! Hospital food ain't great but when you haven't eaten for four days then it smells good when the other people in your ward are feeding. Of course as I had part of my stomach removed they had to let it heal so the drip was all the nourishment I needed. If you haven't been on a drip then you are lucky, it makes your lips very salty and dry and you get coldsores, which incidentally are another of the Crohn's symptoms.

So I was discharged about a week after the operation, prescribed Asacol (anti- inflammatory) and I lived happily ever after, well not quite.

You see the problem with Crohns is that it i
s a chronic illness which has no cure. Now it is rare that you die from this but I do have a funny little tale to tell regarding this matter. I work in a bank and a friend of mine came rushing over with a death certificate for one of our customers (ex) pointing excitedly at the cause of death and saying "is this what you've got?". Yes it was Crohn's, he died of Crohn's. Luckily I have a good sense of humour so it didn't really bother me as the man in question was in his eighties and the Crohn's was what broke the camels back so to speak.

But I wasn't cured, it could come back at any time I was told. My colleagues and friends at work told me not to worry and that I would be fine, but one person there told me his sister had Crohn's and it kept coming back.

So about a year later the pains began again. I recognised them immediately and did nothing at first, suffering in silence until once more the pain was unbearable. This time (I was now living in sin with my girlfriend Mel) we called the emergency doctor at about two in the morning and he quickly arrived to say there was nothing he could do. He called an ambulance and I was admitted to LGI. On the way to hospital I was violently sick and my vomit was a lovely shade of red with the blood it contained. I passed out as I was sick but the pain went almost straight after this technicolour yawn.

Next morning I was fine. Feeling a little sheepish for wasting valuable NHS resources I asked the nurse (who has exactly the same birthday as me - spooky!) What would they do with me. Three days of being kept under observation I was discharged, the advise was if it happened again to abstain from food for a day until the pain eased.

My GP advised that I should be careful what I ate, bland food would be my best option. Strangely I had been given advise to eat plenty of fresh fruit and vegetables which I now know is not good at all.

So I began the Chic
ken Soup diet, eating nothing but this gloopy concoction for weeks. I used to like CS but now, forget it! I was able to gradually become more adventurous with my eating as the days passed, adding such delights as Mashed Potatoes and even Complan!

By now I was off sick from work and seeing another specialist under BUPA, luckily my employers covered most of the costs. The doctor I was referred to apparently is one of the leading experts on Crohns in the world and seems to know what he is on about.

After a few more tests (with sedation) blood tests, colonoscopy and even ultrasound he suggested that I tried a course of Prednisone (steroids) which often helped people in my condition. Another operation was a possibility but more of a last resort, as it could mean removing a large piece of intestine which could mean a colostomy bag, e-mail me if you want to know more about this.

Unfortunately due to a mix up with my GP I was prescribed 5mg of Prednisone instead of the 30mg I should have had. The effects of such a small dose was negligible and a month later the mistake was noticed (by me) and rectified.

Almost immediately the steroids worked and I regained my appetite (which had gone due to Chicken Soup overdose) putting on weight so I regained my normal 12 stone (I am 6'1" and was down to less than 10stone) the steroids seemed to have worked. During this time I was also given another drug (as they thought the original steroids weren't working, wrong dose!) Azathioprin which was supposed to help the steroids. Unfortunately I am allergic to this drug, as not being able to get out of bed due to joint pains will testify. It also coincided with a liver infection at the same time, not nice.

So the steroids worked and I was back at work after being off for about 4 months. Unfortunately, steroids are no miracle cure. You can't take them forever as they cause Osteoporosis over time so I had to stop taking them and BANG,
the pain came back.

Back to the specialist for more tests and the results show no Crohns? It may be caused by an obstruction, the specialist speculated. After the operation you see, scar tissue had formed inside me which was causing a partial blockage so when I ate certain foods they couldn't get passed.

This seems plausible and is where I am today. If I do eat the wrong food (still experimenting with that one!) then I get pains and swell up alarmingly. I usually feel very sick and even collapse due to the pain, but am OK next day. So I am at the eating bland food stage again , but it isn't just bland food I can eat.

You see my Nemesis here appears to be fibre! I ate a Jacket Potato including skin (good for you that bit allegedly) around October last year and was in terrible pains at work. I soldiered on under about 10pm when I collapsed which entertained my colleagues for the night.

So to wrap up, eventually, my advice to anyone with any pains at all is to see your doctor ASAP as early treatment is very beneficial. If I hadn't gone into casualty when I had I could have got peritonitis (infection) which can be fatal.

If you do get diagnosed Crohns then don't panic! Although most of what I have typed seems nightmarish, I feel almost 100% now almost 100% of the time, you really can learn to live with it.

Diet is vital in my case at least. Avoid high fibre foods at all costs, when I am feeling OK then I am able to eat most things, Chicken Korma (mild), Chili Con Carne, spice doesn't seem an issue just watch the fruit and veggies. I do have to watch my chocolate intake though, can't have too much.

I should point out that I realise there are far worse things to have than Crohns, this is trivial in comparison to other illnesses etc out there but my main point here is to help other people with similar condition to myself - please e-mail me if you want to talk or ask me any questions. <br
>
Finally there is a support group, the National Association for Crohn's and Colitis (NACC) and the URL for the Yahoo group is - http://clubs.yahoo.com/clubs/cdsicrohnssupportclub

Congratulations! Many thanks if you managed to get this far, I will be asking questions later! I hope you didn't just scroll down the page! Sorry if uploading this mass of digital bytes onto Ciao's servers caused them to crash!

Oh yes, I just realised as I cut and pasted this epic in here that I have to put down the advantages and disadvantages - I will use the title of this category to judge that against as I can't think of any advantages to Crohns really, except if you sell Chicken Soup. I will be updating this as the stroy unfolds, depending on feedback. Maybe I should post this under "cures for insomnia?"

UPDATE - 9th Decemeber 2002

The pains got worse last year, to the extent that I was eating a very limited diet.

My wedding went OK, I was pain free for the day and could enjoy it, but on honeymoon I had serious problems. This meant I was taking painkillers most days so i was in a zombie like state for a lot of the time.

I still enjoyed the honeymoon though, luckily the pain was not a problem until after I had eaten and so I ate my way around the problem so to speak. It was hard to sleep with the pain but then again, it is hard to sleep on honeymoon isn't it? Well, maybe hard isn't exactly the word!

So after coming back from the holiday I saw the specialist who booked me in for another Barium Meal! Yuk once again and this time the result showed several strictures at various places along my bowel. The only solution would be surgery and I was booked in for an operation in October.

The surgeon was very well qualified and a nice guy to boot. He explained in detail the procedure he would use, called a strureplasty. The good news was this new treatment did not involve remov
ing any bowel, he would simply cut along the length which was narrowed due to the strictures (each one about 3 inches) and sew them up in such a way as to widen them again, no side effects and only a small loss of length.

He thought I had about 3 strictures and would also have a good look around in there to see if I had any adtive Crohns. Strictures aren't active disease as such, they are old ulcers which have healed and caused narrowing in the process.

So back to hospital but this time a nice private ward as I was covered through work by BUPA.

Private wards are good in that you get personal care and a TV but I did get lonely by myself during the day when I had no visitors. Also the TV was a bit dodgey with poor reception, but the en suite bathroom was handy. People with Crohns need to be near a toilet most of the time.

I took a laxative the day I was due to be operated on, but it wasn't a nasty experience like I had previously. One thing I remember is I don't think this laxative worked entirely, yes I was going to the loo but I don't think I was "running clear" as they put it before the op.

My operation was scheduled for 5pm and I was bored after sitting watching daytime TV all day.

As I was wheeled down to theatre I became nervous and remember being put under. Usually it's a nice feeling of slowly falling asleep but this time it was a bit painful as a feeling of pain spread all over my body from were they injected the anaesthetic before I finally went under. Not sure why that was, forgot to ask about it.

I woke up very late at night after missing my wife who had visited me and had to go home as visiting time had finished around 10pm. She had left me a note but the nurses forgot to give it to me I found out later. Apparantly she had been very worried as she expected me out of theatre at around 6:30pm as the operation was not too long winded.

In the even I c
ame out around 10pm as I went down late and it was more complex than anticipated. The doctor later told me he found 4 strictures which proved tougher than usual to sew.

He would usually insert a ball bearing into my bowel and squeeze it along the tube with his fingers until he met resistance, showing a stricture. In my case he didn't need the ball bearing as there was enough "liquid" inside already which he could squeeze instead. He said liquid but you can imagine what it was, told you the laxative hadn't worked!

I now think doctors deserve every penny of their massive wages!

I felt very sorry for myself as I came round, must have been about 3am with all manner of things sticking into me. I had the drip in my arm and a tube down my nose which was there to stop me being sick by removing bile, an awful green gooey mess!

Then I had a catheter for good measure to take the piss quite literally.

The nurse soon came in as I came round and she explained there was morphine attached to my drip and to press a button to administer a dose if I needed it. Yes I did need it so I pressed it and felt very strange, but the pain went away. Unfortunately morphine is not so good if you use it a few times as you seem to get used to it. Still the pain wasn't that bad.

The rest of my stay was uneventful apart from the first time I went to the toilet which was incredibly painful. I don't remember it being like that last time. Once again I put it down to the laxative not working which meant I had to go to the look sooner than otherwise which meant I hadn't healed up as well as I should.

I was dischaged after 7 days in hospital and told to stay at home for 6 weeks.

The only hitch was when it came to remove my stitches (staples) and the district nurse came round. My wound had healed well but unfortunately one of the 23 staples would not come out, no matter how hard she tugged! My wo
und was quite impressive now, from four inches above my navel to my bikini line.

So she came back an hour later with her boss, one nurse to hold me down and the other to pull! Ouch! Eventually they got it out (the staple) but it was such a tug that part of my wound had opened. The nurse said to keep and eye on it and to go to hospital if it got infected, nice.

So I was fine for another year but recently the symptoms have come back.

I have started to get some pain in the tummy, not the same as stricture pain so I think it's active Crohns. Another Colonoscopy shows very slight Crohns and the Doctor prescribed steroids again. You could see some little white ulcers in my bowel on the photo the doctor showed me.

The steriods worked but the side effects were worrying me as I was taking them for a few weeks. I was then prescribed a different type of steroid which has fewer side effects and I am going back for a consultation in February 2003.

Recently I have been diagnosed with Arthritis in my knees and will be seeing a specialist for that soon. I had X Rays to make sure the Arthritis has not spread into my spine which it can with Crohns. Yes it is related to Crohns.

Finally I have been told I am anaemic and take iron tablets and I also have just started with eczema, this is caused by stress. Me, stressed?

Eczema is more prevailant amongst Crohns sufferers.

Oh and I forgot about the mouth ulcers, it's too early to say for sure but it could be the Crohns in my mouth, the ulcers look similar to the ones in the bowel. I have special mouthwas for that which is specially made at the hospital, needs to be kept in the fridge and has a shelf life of 7 days.

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Update 20th September 2007

Things have been pretty good for the past couple of years since my most recent surgery in February 2004, I’ve been taking steroids regularaly and have been suffering only occasional flare ups.

I have tried two different types of steroid, prednisolone and budesonide, I find the latter has less pronounced side-effects.

However, last week I had a bone densitometry test after my GP told me he was concerned that I had been taking the steroids for such a length of time.

The results aren’t good, I am beginning to develop osteoporosis, which is “brittle bone disease”, this means I am more likely to get broken bones as my bones are weaker than normal. At this stage it isn’t severe so it’s not too worrying, but this is probably a side-effect of taking steroids for a length of time, around 2 years or so.

I was told by one of the many doctors I’ve seen that a low dose of steroid is not likely to cause problems, I was only taking 6mg a day which is a low dose, obviously not low enough then!

I’ve now stopped taking the steroids and have started having problems when I eat certain foods so will have to start being careful again with what I eat, am now waiting to see my specialist to work out the best way forward.

If you read that then well done, I hope you have free internet access!

Summary: Crohn's disease