hello,
I have been a lurker for some time on this forum now and have finally decided to join.
I will start off by explaining my story,
it all started about this time last year, i was having unexplained stomach pains and cramping which gradually got worse and worse as the months went on, i just ignored it as i guess many teens would and just put it down to a bit of "stomache ache"... How wrong i was, i went to see my gp the beggining of this year who first of gave me the 3 letters im sure you have all been told at some point, IBS, so here i am thinking ok i have irratable bowels illl just have to live with these pains and find out what foods make them worse.
A month or so passed it was becoming unbearable at times i was missing work due to the pain and tiredness i was loosing contact with friends due to just what i think was a bit of depression and just not wanting to do anything whatsoever, probably combined with the fact of having zero energy.
I went back to my gp who this time she suggested acid reflux and prescribed something for that, looking back i struggle to understand how she came to that conclusion.
First admitted into hospital in febuary, a couple of weeks after my last visit to gp, the reason for this visit was i was in bed in absoloute agony using the toilet every hour or so for both being sick and the other one, i couldnt keep any water down and was seriously dehydrated, to the point i couldnt even walk to the car or stand up straight when my mum said that she was taking me to a n e.
Arrived at a n e and was placed on a drip and tests were done, i was feeling better than i had all year pumped with saline and anti biotics, colonoscopy booked and pain relief subscribed.
Gonna have to condense the next part as i had 5 further hospital stays up until now.
colonoscopy was in conclusive but did "Look" like crohns disease, on my third hospital stay i was told that i had a very narrow part of small bowel and there was quite a high chance of it blocking, i was due to go on holiday in a week and was put on 40mg of prednisone which was a wonder drug, i was eating so much and had a great symptom free holiday, until i started tapering off, i got to 20mg and symptoms began to show up again, gp suggested i go back up to 40 mg until my appt with my gastro which was in 6 days after then. Didnt make it to then i was admitted again and released about a week later after fluids and antibiotics and given pentasa to take 2g daily.
1-2 weeks later i had to go to my gp AGAIN, as the pain had once again intensified to the point of tears, but more worryingly i had a new symptom i had air/ bubbles coming out the end of my penis when i urinated and the urine was discoloured and a little odd smelling which obviuously freaked me out and obviously my gp aswell as she said i had to immediately get to hospital and she phone an ambulance.
I had xrays, mri's, blood tests, tummy feels the lot. one week after being in the hospital with all this going on and feeling the worst ive felt in my life both mentally and physically, i was passed over from the medical team to the surgical team with being told that treatment is no longer an option at this point and they would need to operate.
I was told i had a fistulae from my bowel to bladder causing the urinating symptoms and another fistulae from small to big bowel, and that my illeal i think its called (last bit of small bowel) was so inflamed and damaged it had to go out before it cause a total blockage.
So i now told after this about the dreaded ileostomy and that i will be having one of these, i am quite a strong person in my opinion and have had a lot of s**t to deal with prior to this and was trying to prepare myself for it mentally and thought i would be ok after all it was only temp.
I woke up after surgery felt my side and felt the bag and remeber thinking ok its happened. The moment it hit me was when a nurse came in to chage the bag, at this point i had a nose and throat tube thing in due to the bile i was throwing up and my bowels not working, common with this is op im told, a catheter and this bag and the pain and tightness of my incision site but the moment they changed the bag was awful i started to cry and was severely depressed bottling things up making out im fine to family and im dealing with it but in reality i really wasnt, i hadnt let any friend know about it apart from 2 and didnt let them come see me in hospital i guess i just didnt want anyone to see me in that state, but all my other friends i realise now i have pushed away in all this and they dont even know about my ordeal this year so i cant blame them.
I have still got the ileostomy and it really impacts my life and has given me depression and anxiety, i have a constant fear and nagging and worry that my is gonna or is leaking, which anyone with one of these im sure willl understand.
I dont really know why i have decided to join and write all this but i guess its good to let it outas i have never been good at expressing my feeling and end up bottling things up as i have this year. im due for reversal begginging of next year which i cannot wait for as i will be able to re start my life, with a new outlook and appreciation of things.
sorry for the long post, any replies welcome.
thanks for getting this far i know there are typos but im sure you will understand and its too long to go back through it all
I have been a lurker for some time on this forum now and have finally decided to join.
I will start off by explaining my story,
it all started about this time last year, i was having unexplained stomach pains and cramping which gradually got worse and worse as the months went on, i just ignored it as i guess many teens would and just put it down to a bit of "stomache ache"... How wrong i was, i went to see my gp the beggining of this year who first of gave me the 3 letters im sure you have all been told at some point, IBS, so here i am thinking ok i have irratable bowels illl just have to live with these pains and find out what foods make them worse.
A month or so passed it was becoming unbearable at times i was missing work due to the pain and tiredness i was loosing contact with friends due to just what i think was a bit of depression and just not wanting to do anything whatsoever, probably combined with the fact of having zero energy.
I went back to my gp who this time she suggested acid reflux and prescribed something for that, looking back i struggle to understand how she came to that conclusion.
First admitted into hospital in febuary, a couple of weeks after my last visit to gp, the reason for this visit was i was in bed in absoloute agony using the toilet every hour or so for both being sick and the other one, i couldnt keep any water down and was seriously dehydrated, to the point i couldnt even walk to the car or stand up straight when my mum said that she was taking me to a n e.
Arrived at a n e and was placed on a drip and tests were done, i was feeling better than i had all year pumped with saline and anti biotics, colonoscopy booked and pain relief subscribed.
Gonna have to condense the next part as i had 5 further hospital stays up until now.
colonoscopy was in conclusive but did "Look" like crohns disease, on my third hospital stay i was told that i had a very narrow part of small bowel and there was quite a high chance of it blocking, i was due to go on holiday in a week and was put on 40mg of prednisone which was a wonder drug, i was eating so much and had a great symptom free holiday, until i started tapering off, i got to 20mg and symptoms began to show up again, gp suggested i go back up to 40 mg until my appt with my gastro which was in 6 days after then. Didnt make it to then i was admitted again and released about a week later after fluids and antibiotics and given pentasa to take 2g daily.
1-2 weeks later i had to go to my gp AGAIN, as the pain had once again intensified to the point of tears, but more worryingly i had a new symptom i had air/ bubbles coming out the end of my penis when i urinated and the urine was discoloured and a little odd smelling which obviuously freaked me out and obviously my gp aswell as she said i had to immediately get to hospital and she phone an ambulance.
I had xrays, mri's, blood tests, tummy feels the lot. one week after being in the hospital with all this going on and feeling the worst ive felt in my life both mentally and physically, i was passed over from the medical team to the surgical team with being told that treatment is no longer an option at this point and they would need to operate.
I was told i had a fistulae from my bowel to bladder causing the urinating symptoms and another fistulae from small to big bowel, and that my illeal i think its called (last bit of small bowel) was so inflamed and damaged it had to go out before it cause a total blockage.
So i now told after this about the dreaded ileostomy and that i will be having one of these, i am quite a strong person in my opinion and have had a lot of s**t to deal with prior to this and was trying to prepare myself for it mentally and thought i would be ok after all it was only temp.
I woke up after surgery felt my side and felt the bag and remeber thinking ok its happened. The moment it hit me was when a nurse came in to chage the bag, at this point i had a nose and throat tube thing in due to the bile i was throwing up and my bowels not working, common with this is op im told, a catheter and this bag and the pain and tightness of my incision site but the moment they changed the bag was awful i started to cry and was severely depressed bottling things up making out im fine to family and im dealing with it but in reality i really wasnt, i hadnt let any friend know about it apart from 2 and didnt let them come see me in hospital i guess i just didnt want anyone to see me in that state, but all my other friends i realise now i have pushed away in all this and they dont even know about my ordeal this year so i cant blame them.
I have still got the ileostomy and it really impacts my life and has given me depression and anxiety, i have a constant fear and nagging and worry that my is gonna or is leaking, which anyone with one of these im sure willl understand.
I dont really know why i have decided to join and write all this but i guess its good to let it outas i have never been good at expressing my feeling and end up bottling things up as i have this year. im due for reversal begginging of next year which i cannot wait for as i will be able to re start my life, with a new outlook and appreciation of things.
sorry for the long post, any replies welcome.
thanks for getting this far i know there are typos but im sure you will understand and its too long to go back through it all
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