Third time lucky - would seem not...

[chrisinuk]

My story:

I wont bore you all right away unless im pressed for more information by someone needing it..

I'm now 29, I was diagnosed with Crohns when I was 19, this is also when i had my first operation to remove some bowel. After 7 weeks in hospital whilst various doctors did all manner of unspeakable things to me trying to come to a diagnosis.

2 years later i was in and out of hospital for months and no medication could get me back in control, i was on predniscelone for about 3 months but didnt work - so that ended up in operation number 2..

I then went 7 seven years then with no medication AT ALL as the Azathioprine made me feel really shitty so against Drs advice i binned it off..this time last year it caught up with me, id been in agony for months - literally screaming out loud rolling round the floor for weeks..finally i went to A&E and was admitted into the wards...a day later my appendix burst and i was rushed in for emergency surgery to remove more bowel and fix the stuff my appendix focked over -so that was number 3!


I've been severely depressed since the second operation, but remained in work untill my dad suddenly passed 4 years ago - this was the "final straw" and have been on anti depressants since then also..

(Since school, my weight has fluctuated lowest being 6st 10lb at flare ups and now 10st 7lb - heaviest ive ever been - i was around 9st heaviest before last sugery (im 5'11") )

Almost 12 months to the day of my last operation, Im writing this as my symptoms start to reappear..

I'm not sure i have the passion to go through it all again if im honest, I have an appointment for blood tests wednesday but I already know what the results are going to be

anyways thats me oo:

 

[afidz]

Have you tried any other medications?
I know this disease is unbearable at times, and its hard to see the light of day sometimes, but you have to try to find a way to keep your head up. Find something positive out of every negative situation. have you had any other tests done recently?

 

[chrisinuk]

Hi afidz,

ive been on pentasa, asacol, pred, azathioprine, probally others that i cant remember...two surgeons on two occasions told me "i dont need any medication as we have removed the crohns" although the medical doctor disagrees with their statements...The doctor says i should be on azathioprine everyday at 150mg iirc, but ive explained i cannot function whilst useing this drug, however the "lesser" drugs dont work

probally missed something out but ive had these over the years - colonoscopy, endoscopy, mri, ct, ultrasound, barium xray, ct guide biopsys

 

[highlandsrock]

Hi Chris

You read your post. I'm sorry to hear you are going through this bad time.

I was on Azathioprine for around 8 years (150mg/day). I don't remember much about when I started taking it other than having joint pains but my wife recalls that I felt so bad one time with flu like symptoms that we were thinking of calling an ambulance. I managed to persevere and it did keep surgery at bay for 8 years (stricture). I only stopped taking it as it looked like it was beginning to affect my platelets.

Since then I've had surgery and have been drug free (for Crohn's at least). Colonoscopies show no signs of inflammation so I guess they must have removed the affected area just like you've been told but it can come back somewhere else which is why it is important to have regular tests. I'm now having regular calprotectin tests instead of colonoscopies.

One comment my consultant made just before Christmas was that because of the surgery he would never expect me to have a normal digestive system. I still get a certain amount of pain and the rushes off to the bathroom. Is it possible this is what you are suffering with?

 

[chrisinuk]

Hi highland

I have been symptom free since my last op, on the three occasions of surgery they took sections of/around my illium...my last operation there was a high rish of a bag due to my appendix going unnoticed ... i take loperamide on "bad days" or before i go out drinking -which isn't that often (3 times a month) i know this does me no favours tho :/

my weight after the operation was 7st 4lb but this rocketed to 10st and then on to 10st 7lb - which ive never been even close to!

just before xmas i started sleeping longer, ive noticed i am getting ulcers on my tongue at least once a week and im getting hiccups and acid reflux most days - i remember these all happening prior to serious problems on the other two occasions..plus i have to "force" myself to eat as my appetite has vanished i could go days without eating if i let myself...my weight has dropped off to 10st again - im keeping a close eye on this..

i hate this disease

 

[highlandsrock]

Hi Chris

Interesting that you only need to take Loperamide on "bad" days. I find I need to take 2 capsules everyday and then maybe a third one if I'm going out for the day without access to "facilities". I've only had 15cm of terminal ileum removed which is why I was surprised at the consultant's comment about never having a normal digestive system again.

Are you seeing your consultant soon? It's sounds like it would be worth running through your symptoms with them and seeing if there are any tests, other than blood tests, that you should be having. I know that my one is always interested to know if I am losing weight.

Have you come across the IBD community on Twitter? If you're feeling really low there's always a number of crohnies ready to give you their support. I find it very worthwhile

 

[chrisinuk]

if im at home i tend not to bother with them as i'm close to the loo...i normally take 4 or 5 if i go out. Some days are better than others - depends if ive cooked a curry in the last few days I know i should be cutting out spicy food, but i just like it too much *sigh*

last time i saw the consultant at the hospital he wanted me to have another endoscope, but i didn't go ..

i think the doc will refer me to the hospital tomorrow once i explain the situation - my GPs always seem scared to give me anything without a trip there first..

I'm experiencing some blood, which I've never actually had before, I normally only get a lot of mucus ..only light cramps at the moment but the cold shiver is starting coming back with them, and of course much wind lol

I'll check out the twitter page, thanks

 

[Nero83]

if im at home i tend not to bother with them as i'm close to the loo...i normally take 4 or 5 if i go out. Some days are better than others - depends if ive cooked a curry in the last few days I know i should be cutting out spicy food, but i just like it too much *sigh*

I am currently dealing with my first ever flare up as a result of eating a very mild gluten free green curry on saturday. My advice would be to look into dietary controls a lot more! Think about trialling gluten/dairy free and doing low fodmaps

 

[chrisinuk]

i do my best to forget about it as much as possible, ie eating and drinking what i want, when i want - i dont cut anything out my diet at all..when i feel like eating that is

life is shitty enough...

i probally shouldn't smoke either

 

[Nero83]

i do my best to forget about it as much as possible, ie eating and drinking what i want, when i want - i dont cut anything out my diet at all..when i feel like eating that is

life is shitty enough...

i probally shouldn't smoke either

MY GOD! Smoking is a massive no-no and you really need to restrict you're diet - your going to keep having issues until you get these sorted! Go to a different gastroenterologist or a nutrionist that specialises in Crohns - if they havent already told you to stop smoking and avoid irritant foods

 

[chrisinuk]

nero, i did all this years ago and IME it doesnt make a scrap of difference - IT WILL COME BACK - live your life

 

[KayleighMeek]

I agree Chris sometimes you need to forget and enjoy life I have foods on occasion I know will cause problems but I don't want to give things up entirely. This disease already takes away so much, although when I am actively flaring I am more careful just because he pain is more intense.
As for smoking I used to smoke and quit soon after diagnosis and I found it has helped me with crohn's symptoms and overall health but if you are not ready or don't want to quit then I know no one will change your mind. My boyfriend continued smoking for a couple of years after I quit but then the day came when he just had enough and packed it in but it is a tough thing to do.
I hope you can find something that can make you feel better

 

[chrisinuk]

Kayleigh worded it much more eloquently than i did, it was early in the morning

I should say obviously if ive had a few rough days i will be carefull to avoid fibre and vegetables etc..

smoking is the most difficult habit to stop - ive smoked 15 years and only quit once for 6 weeks in that time, ive tried patches, chewing gum etc etc even been hypnotized a couple of times but to no avail...ive recently been using a vapourizer which im having a fair bit of success with - i do still smoke some days but a step in the right direction at least..