My story - and whats next :)

[Shaanaleem92]

Hey,

First off , when was this forum established?... i use forums a lot in general for hobbies etc.. and when i became ill and diagnosed... i was looking for online help such as forums to find nothing. if this forum is new - that's great news . if it was around and i couldn't find it...(well not great, i wanted advice and encouragements... other peoples experiences and views you know it all helps to make you feel better) anyways back to my story.

hi, im Shaan , im now 20 years of age, will be 21 in October. i was diagnosed with Crohn's disease back in September of 2012, after suffering since February 2012. i started getting stomach cramps/pains. (i was like meh, its a one off ill be fine next week etc, im a strong individual on the inside when it comes to general colds or injuries don't really take medications or go doctors unless its an emergency, so the next year of my life was a shock). i think it started from food poisoning, as my friend and i ordered from out...(it was bad, but we ate anyways,took 2 hours to arrive aswell) my friend was ill for a bit , you know dont feel well when you eat something bad.:stinks: i dont think this was what caused it though because thinking back i did have small symptoms of weird stomach cramps a couple of times back in 2011, nothing serious , probably side affects of all the junk food i munch on etc. so perhaps this food poisoning triggered it all. (or maybe it was destiny and was gonna happen anyways)

i started off with constipation, which is strange as most Crohn's sufferers have diarrhea apparently. had it for 2 weeks. didn't bother or worry about it. carried on with life as normal, you know final year of 6th form, part time work etc. it was once i started throwing up and puking all night long with no sleep, and keeping the family awake, especially a worried mum, that i went to the doctors...first time i went i told the doctor, yeah errm i eat a lot of junk food, thats what teenagers do, ive had constipation for awhile...and ive started throwing up and ive got some pains in my stomach area. (i was so chilled and joking about it with the doctor thinking ill be fine in a short few days) she gave me some sort of medicine (prescription) to ease pain.. but they weren't painkillers ( i cant remember what they were called) needless to say they didn't work.

I got worse as a week went by...and my mum dragged me to the doctors once again. (different GP) everything was explained to the him by my mum... and he gave me medication for constipation. such as senna tablets, and some lactose syrup or something? :/ that worked kinda, as it helped me relieve myself a lot easier, it became softer
we(mum and me) kept going back to that doctor as my symptoms never really improved.. still had pains in my abdominal area and was getting worse.
resulting in more constipation relief stuff. oh and when the doctor says your having symptoms of stress due to exams and stuff, i laughed it off and my mum couldn't stop laughing at him,:rof: basically im the kinda of person that doesn't understand stress, i don't get it so im never stressed. (im so chilled as a person) i usually revise...(read a few pages) the day before going into the exam, and come out with decent results.. easy peasy :dance: my family don't quite understand how i do it with so little work... i guess i have my own style/way of doing things, they work so why change it they all ask 'are you nervous' have you revised' if i was you i would be so worried' etc etc.
im more like whats to worry about nothing gonna happen, i just have to answer the questions within time limit and that's that.

anyways life had to go on whatever happened.. so i continued knowing i'd be fine and its temporary illness perhaps from that food poisoning. work, 6th form and social life resumed as normal. albiet keeping pain hidden

pain got worse and worse... (still had symptoms of constipation but not as bad as before).... so being in my final year of 6th from studying my A-levels... got good grades for my first year exam time comes up around june/july time. i was at my grandmother's birthday... so the whole family was around... i also hate when everyone asks ' how are you? are you feeling better?' etc... thanks for asking... but when your in pain and trying to keep your mind off things its not nice when you get reminded of it every minute or so. (my family is big so when everyone ask it becomes very often)
that day i was in agony and had been quite worse for some weeks. long story short, we called an ambulance. they arrived i was drugged up, which by the way is a nice feeling , being relaxed and not tensed trying to disguise the pain i was hospitalised for a week.... did all sorts of test to find nothing :/ Had a CT scan... x-ray... ultrasound etc etc. i was gonna have an endoscopy (camera down the throat next) problem being i had my exam the next day.... and i demanded to doctors to let me go this exam is important. so after a week at the hospital i was allowed to go ( they were persistent and said they had many tests to do and cant let me go till they diagnose me etc )

i went home that night... read a few pages... and went to sleep... i hadn't done any revision at all, as i was just too ill and in pain all the time... so i was not prepared... but i was adamant ill be alright and was mentally prepared. the problem was i was not physically prepared... i came down the stairs... and collapsed on my way down the stairs, i was so weak physically i couldn't actually stand up on my own. i burst into tears once my mum helped me to the sofa in the living room. she rang the 6th form and explained my conditioned and they said don't worry...( you will probably be given your predicted grades) i still wanted to go and take the exam... but never manged to get off the sofa.

to explain this... i was about 9 stones (60kg) as a healthy individual who was active and went to gym regularly. despite my illness i stayed that weight until the weeks before where i stopped eating as much i just would vomit everything i ate. i didn't loose much weight just lost all the hard work at the gym. It was the week in hospital where i had lost 2-3 stones.... i lost 2 stones in one week :eek2: i was wieghing in and barely 40kg.. it was a shock to my body hence i collapsed on the day of my exam. i was soo skinny i felt like i was going to snap my legs just by standing up.. my arms were so small my made to fit watch would just slide off past my hands. my clothes no longer fit me... i was already small at 28-30 waist...so i probs ended up being 24-26 waist... it was annoying .... i looked ****....

the head of 6th form insisted i rested and not take any of my exams as i would definitely be given my predicted grades. i didn't believe this and went to all my other exams that same week.. and the next... good thing i did as i got decent grades...( again a shock to everyone when i dont revise, but this time because i was either asleep or just lying in bed in agony rather then what i used to do) well i say decent i could have done better... but the exam i had missed... i got a U, it was ungraded... the teachers lied... anyways this brought my grade down dramatically as the final exams over the years is worth a high percentage of the overall grade. Despite this i managed to get into university chuffed :dance: was going Staffordshire university, doing computer games design

i actually bunked/missed a lot of my lessons at 6th form since march and April time, only turning up as of when i could. and for exams or coursework details etc. so came august results day found out i got into uni and waited till September to start

during the summer break , i was given the endoscopy... to find nothing everything was fine... i had an ultrasound which showed i had a lot of feacal matter still around ... the doctor who did the scan said there was nothing there but was like its full why don't you go toilet. i was like are you f**** r****, do you think i would deliberately hold my sh*t in?...

anyways at this point i was pretty down... thinking there's no point in living etc... i never bothered about my appearance anymore, as i just couldn't be bothered and didnt't care what other people thought , i got really moody at everyone and stuff. always vomited everything i ate... and lost weight, felt weak... you know whats the point in living.... and the doctors can even tell me whats going on...

i forgot to mention after my time at the hospital, i changed the doctor i saw at the GP. (an amazing doctor btw) she put my straight in conatact with a specialist. a Gastroenterologist i think they are called. anyways ... he made me have an colonscopy.... i couldn't drink that stuff they make you drink i had to drink 4 liters of this crap. now i dont know if it was cuz i was ill... but i felt sick taking a sip...:stinks: even thinking about it now eurgh.. i managed about half a glass let alone 4 litres. it took my 4 attempts, after just walking out every-time , now i may seem stubborn, but remember i became moody at everything and everyone, my whole life turned upside down.
in the end months later... i managed it with using 8 tubs of Nesquilk. banana flavour, and strawberry flavour. oh and i only actually drank 2 and a half litres, the rest i threw down the sink when mum wasn't looking. :tongue: i feel bad, but honestly i had to use 4 tubs of this milkshake stuff per litre of this drink ( i was giving this advice by a colleague at work, who has IBS and has the same procedure... i love how everyone at work was soooo nice and encouraging and helping me through the hard time , it definately helped me get through anyways i had the colonoscopy and they discovered a blockage at the entrance of my small intestine, my terminal ileum.
went to my specialist doctor a week later and diagnosed me with Crohn's disease. (this was in september..i started on steriods... back when i first saw him around jly time... was taking buedonside (i cant spell) and predsinole. which didnt work btw... although blood test showed slight improvements.
i was also anemic and was given lots of iron infusions. which didnt really help.

after i was diagnosed... i was given Azaithroprine, taking 100mg to this day. didn't help.. although blood test suggested otherwise. i stopped steroids in November as the specialist doctor said it was ineffective. i was then put on Humira injections in December. first few at the hospital... ( these things are the most painful thing in the worlds, especially when your just sticks and bones with no flesh. (it was the one time when mum heard me swear all sorts and didn't saw anything about it haha) although very painfull, this actually did have an affect on me and was helping although very minimal and slow.
i started getting better at controlling the pain, and just dealing with it... but this was by januray 2013 and after taking humira. at this point i left university.... i just couldnt handle it all with the pains.. i was just in bed or at hospital , and just came running home all the time... i managed one semester.

with very little improvement since being diagnosed, i was put forward for surgery... the surgeon contacted me, for an appointed. i went with my parents. and he gave me the appointment for the next week..... My operation was on the 11th of February, i would be having a ileostomy surgery. i didnt want a stoma with a bag... and said to my parents im not going to do surgery if the surgeon tells me he going to give me a stoma. (my uncle as a GP, said i would most likely have a stoma, so i kinda came to terms with the possibility of having one.) the surgeon broke the news, it was weird, and i understand why he took an hour to come to the bit 'you will wear a bag with a stoma' as most people would be freaked out etc. but i had done my research beforehand, searching online looking and videos on YouTube etc. so wasn't that shocked especially when my uncle who a GP said i would definitely have one ( obviously i was upset and angry at myself, but as chilled as i am, i just wanted the pain to go away).

i had gained 5kg (due to humira) a week before my operation. and my blood pressure was normal for once... normally low since ive been ill. this is the post-op thingy test they do.

11th of feb, surgery in the morning. i was there all prepared. and was scared, as i said bye to my parents, i was taken away on the bed... was given all sorts of needles... next thig i knew i was surrounded by the family... as i slowly awoke. first thing i heard was mum saying, the doctor said it was successful operation, i asked how long it took... barely could speak... was told it was 3 hours. the i fell back to sleep. that night once i awoke a bit more, i had a look at my stomach, scared it would be ruined by the operation... it was actually not bad at all, ( i had keyhole surgery. the bag was there, but i was too drugged up to bother thinking about anything)
i had 20 cm of my small intestine removed :O ,
unfortunately after a week, i went home, i was hospitalised again and had an emergency operation just 10 days after the first operation. i had developed an infection, becuase i was just too weak, the infection was painful, i couldn't sit stand or doing anything was sooooo painful agony, back pain etc. the second operation was open surgery and they sucked out all the pust and stuff from infection... now my abs were ruined :'(
had tubes coming out from my abdominal area in all sorts of places, to prevent infection happening again.....

so where am i now?..... After many weeks of recovery and crying at my appearance whilst looking in the mirror....yes i cried.

i must say i look back and dont regret taking the surgery , i has now allowed me to be back to normal...
after surgery i put on my weight in 2 weeks... although im not quite 60 kg just yet. but i will get there

i have applied to go Leicester university starting in September... and life getting back on track .... only thing im not looking forward to is having my reversal surgery of my stoma... as it was only temporary to help me become healthier. i am having this reversal surgery in December 2013. eeekkk, im just scared that things go back to being painful after having the stoma reversed etc.

so thats my story almost a year after being ill i was finally being treated , and now i feeel wonderful, like a normal person.... albiet with scars and a stoma bag , but honestly wouldn't have done it any other way apart from not being ill ofcourse....

ive had a tough year.... but it has taught me about life itself, it makes you realise things you would have taken for granted beforehand. i must admit i did start to act a bit cocky as i was getting older... etc...

thats me and my story

 

[Shaanaleem92]

wow , my post is too long to read isnt it?

 

[Aphrodite_x]

Hi Shaan

Yeah its long, but so what! That's your story, dont shorten it for anyone

I must admit, the thing I thought when reading your post was 'wow, he has such a positive attitude'. Well done u! Its inspirational how you are getting your life back together after such a hard time. I hope all goes well with your reversal surgery in December.

What are you going to do at Leicester Uni? The same course as before? There are people at uni that can help you as well, should you ever have a bad flare again, I'd maybe speak to their student services department just so you are prepared!

People like you are my inspiration. I'm at that stage of a flare up now where I think I'm getting better, but still depressed about my appearance, i.e. pred moon face, acne, swelling etc. Only one week left of steroids so hopefully be better soon still I hide from everyone, and havent seen my friends in months.

Anyway, good luck to you for your future. Hope you stick around!

K x

 

[Shaanaleem92]

Hi Shaan

Yeah its long, but so what! That's your story, dont shorten it for anyone

I must admit, the thing I thought when reading your post was 'wow, he has such a positive attitude'. Well done u! Its inspirational how you are getting your life back together after such a hard time. I hope all goes well with your reversal surgery in December.

What are you going to do at Leicester Uni? The same course as before? There are people at uni that can help you as well, should you ever have a bad flare again, I'd maybe speak to their student services department just so you are prepared!

People like you are my inspiration. I'm at that stage of a flare up now where I think I'm getting better, but still depressed about my appearance, i.e. pred moon face, acne, swelling etc. Only one week left of steroids so hopefully be better soon still I hide from everyone, and havent seen my friends in months.

Anyway, good luck to you for your future. Hope you stick around!

K x

Yayyy a reply I thought no one liked me
Yea I was going to shorten actually maybe then people will read lol

Ahhh thanks I do think having a positive attitude towards things can only be helpful than harmful but I wont lie there were times where I was like I give up on my life, but woth support all around me and encouraging words I hung in there
Thanks im scared about my reversal surgery but the longer I wait the more ill think about it, so best just to get it over and done with

I will being doing computing at Leicester uni (its actually de montfort uni) which is slightly different but its a bit more open and I can go specialise in games industry in my second year
Yes I will have to look at this and research about support I can get just incase I need it

Ahh I know exactly how you feel, its the worst ever, do the medication help you? As for me it didnt :'( I kinda wish I could prevebt surgery some way or another but im glad I had it as I can enjoy life once again
I never went out or saw my friends in over a year, but they did come see me at my worst, shows you who your real friends are

Good luck for your treatment and thanks for the best wishes

 

[Ginger is her name]

Hi! I completely understand your fear with reversal. I've had my stoma, ginger, for 6 months now. These have been the best 6 months in about 4 years! It's scary to think that when ginger goes home...will I get sick again? Will I have to change my eating habits? I finally like to eat again! Lol anyway, I just trust that when it's time, I'll be ready. I have faith in my medical doctors that they will not put me through surgery unless it will be for the best...I have an awesome medical team and they do not want to see me in pain again.

Good luck to you and welcome to the forum!

 

[Aphrodite_x]

Yayyy a reply I thought no one liked me
Yea I was going to shorten actually maybe then people will read lol

Ahhh thanks I do think having a positive attitude towards things can only be helpful than harmful but I wont lie there were times where I was like I give up on my life, but woth support all around me and encouraging words I hung in there
Thanks im scared about my reversal surgery but the longer I wait the more ill think about it, so best just to get it over and done with

I will being doing computing at Leicester uni (its actually de montfort uni) which is slightly different but its a bit more open and I can go specialise in games industry in my second year
Yes I will have to look at this and research about support I can get just incase I need it

Ahh I know exactly how you feel, its the worst ever, do the medication help you? As for me it didnt :'( I kinda wish I could prevebt surgery some way or another but im glad I had it as I can enjoy life once again
I never went out or saw my friends in over a year, but they did come see me at my worst, shows you who your real friends are

Good luck for your treatment and thanks for the best wishes

Your course sounds fun! Sounds like you'll be covering a bit more than the games industry too, which means you'll be able to keep your options open a bit when it comes to finding a job later!

Meds have helped a bit. I'm on azathioprine 100mg, down to 5mg pred so the last week on them. This past week has been hard though, feeling sick constantly, headaches, loss of appetite, sleeping all the time. Work is taking it out of me big time so think I'll need signed off for a few weeks to have a break.

Ha lucky you! One of my friends has come to see me, and thats it. The rest of them havent bothered their a*ses, think they think I'm exaggerating it all tbh. You're lucky to have good friends!!

 

[Shaanaleem92]

Hi! I completely understand your fear with reversal. I've had my stoma, ginger, for 6 months now. These have been the best 6 months in about 4 years! It's scary to think that when ginger goes home...will I get sick again? Will I have to change my eating habits? I finally like to eat again! Lol anyway, I just trust that when it's time, I'll be ready. I have faith in my medical doctors that they will not put me through surgery unless it will be for the best...I have an awesome medical team and they do not want to see me in pain again.

Good luck to you and welcome to the forum!

Yea its been 6 months for me aswell wouldn't have any other way, my Stoma has given me a new life, I just hope with the Stoma gone I still have this life

Thanks and good luck to you aswell

 

[Shaanaleem92]

Your course sounds fun! Sounds like you'll be covering a bit more than the games industry too, which means you'll be able to keep your options open a bit when it comes to finding a job later!

Meds have helped a bit. I'm on azathioprine 100mg, down to 5mg pred so the last week on them. This past week has been hard though, feeling sick constantly, headaches, loss of appetite, sleeping all the time. Work is taking it out of me big time so think I'll need signed off for a few weeks to have a break.

Ha lucky you! One of my friends has come to see me, and thats it. The rest of them havent bothered their a*ses, think they think I'm exaggerating it all tbh. You're lucky to have good friends!!

It is fun with good job prospects so looking forward to it, I cant wait to start

Ahhh, it was same for me, helped a little but not enough to be noticed. I also take azathioprine 100mg, but thats it some days I miss it (I forget or just lazy) and its ok however the first time I did that I had a flare
This is a long term medicine and only starts working after 6-8 weeks of taking them, so hang in there you will start to feel better. If not go back, they will give you something else that will work, for me humira injections were the only thing effective enough to be noticed, I still had pains but it was reduced, vomiting was reduced and I gained a couple of kg

Yea ive been told its lucky to have good friends I dont have many but the ones I do have are good, and your right people do think your overeacting, like my teachers lol oh well

 

[Aphrodite_x]

It is fun with good job prospects so looking forward to it, I cant wait to start

Ahhh, it was same for me, helped a little but not enough to be noticed. I also take azathioprine 100mg, but thats it some days I miss it (I forget or just lazy) and its ok however the first time I did that I had a flare
This is a long term medicine and only starts working after 6-8 weeks of taking them, so hang in there you will start to feel better. If not go back, they will give you something else that will work, for me humira injections were the only thing effective enough to be noticed, I still had pains but it was reduced, vomiting was reduced and I gained a couple of kg

Yea ive been told its lucky to have good friends I dont have many but the ones I do have are good, and your right people do think your overeacting, like my teachers lol oh well

I did think the aza was helping, and I've been on it about 5/6 weeks now, but the way I'm feeling now is different to a Crohns flare, its hard to explain. I have an appointment with my GP tomorrow at 9am and I'm going to see if I can get signed off work for a few weeks just to have a break. (I have quite a stressful job, and spending my lunch hour sleeping in the car is a sign something is up!)

I was on aza before, and it worked so well I forgot to take it altogether, didnt even think about crohns and had no symptoms at all. Which is why I'm here now, worst flare up ever! So try and remember to take it, its essential for long term control of this horrible disease.

That's terrible your teachers are like that! My work are like that too though. Its just that we can look ok on the outside, when on the inside we've never felt worse. I have that one friend who is totally supportive, asks loads of questions so she understands etc, but yeah as I said, the rest are a complete waste of time.

 

[Shaanaleem92]

I did think the aza was helping, and I've been on it about 5/6 weeks now, but the way I'm feeling now is different to a Crohns flare, its hard to explain. I have an appointment with my GP tomorrow at 9am and I'm going to see if I can get signed off work for a few weeks just to have a break. (I have quite a stressful job, and spending my lunch hour sleeping in the car is a sign something is up!)

I was on aza before, and it worked so well I forgot to take it altogether, didnt even think about crohns and had no symptoms at all. Which is why I'm here now, worst flare up ever! So try and remember to take it, its essential for long term control of this horrible disease.

That's terrible your teachers are like that! My work are like that too though. Its just that we can look ok on the outside, when on the inside we've never felt worse. I have that one friend who is totally supportive, asks loads of questions so she understands etc, but yeah as I said, the rest are a complete waste of time.

Yea I feel for you, I would rather take mediaction to prevent any sort of signs of my crohns coming back than to not take anything and find im in pain again.

Yea, but after I was hospitalised I think they get the idea, my workplace was good about it and supportive, as they saw me healthy and how I lost wieght and looked pale soo quickly, they would let me take break whenever I needed them, even though you werent allowed, I was allowed to go home early if I was having a particulary bad day and vomiting at work etc.. It was so hard hiding the pain whilst dealing with customers, once they're gone you turn around and bend over in agony, even whilst serving on tills I was able to take a minute just crouched to the floor between serving, I did my best untill I decided I couldntdo this any longer, so I handed in my notice, and left last September as I was supposed to start uni aswell, sold my car because of no job, so it has affected me

 

[AuntieEm]

You are a go getter! Hope the reversal in December goes smoothly and you continue without problems. Your post was just fine. I'm glad you found us.

 

[megnvc]

I've searched around the forum and I finally found someone with a similar experience. Thank you so much for posting your story. Xoxo, megn

 

[Shaanaleem92]

No problem glad to know other people share the same feeling

 

[fozheart]

Hi! What an inspiration you are! I feel so terrible when I read about you young people going through this, but you sure have a lot of inner strength and determination! I wish you the best of luck when you have the reversal in December. :dusty:

 

[Shaanaleem92]

Hi guys... not been on this forum awhile... but here's a quick update... i shall be having my stoma reversed on the 23rd of December 2013 .. providing nobody comes in for an emergency.

my feelings... well im scared, especially after complications back in February... obviously i am healthy now... and blood test and symptoms show no signs of crohns anymore which is a good sign i suppose.. hopefully it never comes back

well that's it ... i hope people who are suffering keep looking forward as there is always hope for a better future, just hang in there..i know i did

thank you for all who was supportive ... couldn't have done it otherwise.

 

[Shaanaleem92]

hello... not sure if people still use this forum...so a fair few years have passed...

im now 24...turning 25 in october... im still in remission...on azaithroprine 150mg a day...life is great tbh...currently studying my final year at university... though times ngl.

i had my stoma reversed as planned...discharged after 2 days...

life has gone back to normal... so for anyone looking for hope ... it does get better eventually.

not sure what to say tbh ... feel free to ask any questions.

 

[ronroush7]

Hi. Glad to hear things are so well.