Crohns / Colitis making it even harder to achieve good grades.....

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Anonymous #1
#1
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I have had ulcerative colitis for a over 4 years now and since being diagnosed it has developed into Crohns disease. Im finding it increasingly difficult to even find the motivation for going to lessons and studying, and sometimes even if I go to a lesson its like im not there as in my heads not in the right place. I want to do well in my exams however at the moment I just don't see it happening.

My question is, is there anyone else in such a position? if so then how are you coping with everything?
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trasitszy
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(Original post by Anonymous)
I have had ulcerative colitis for a over 4 years now and since being diagnosed it has developed into Crohns disease. Im finding it increasingly difficult to even find the motivation for going to lessons and studying, and sometimes even if I go to a lesson its like im not there as in my heads not in the right place. I want to do well in my exams however at the moment I just don't see it happening.

My question is, is there anyone else in such a position? if so then how are you coping with everything?
Hi I have Crohns, and yeah it makes me really fatigued and people think I am lazy but I really do get exhausted!
Basically, to cope, I make sure I get lots of rest, and study wise make a solid plan and stick to it. If you are having major symptoms that are getting in the way of everyday life, you need to try and get your doctor to do something for you to help that, though I know that is easier said than done

I am at uni studying Vet. Med at the moment and yeah I am finding it hard, but I have told my friends and they are really supportive and if I have to miss lectures they will help me catch up.

I am so sorry you are going through this, I know what a misery IBD can be :/ pm me if you want to chat!
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Anonymous #1
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aww thanks for the reply. most days i plan what im going to do in the morning but then most days it just falls to pieces withing hours. I also have a ileostomy because the crohns got so bad that i had to be hospitalized and even though the ileostomy has allowed me to improve in terms of my health, the fact that i have an ileostomy which i have to manage is really stressful. I have had it over a year but still havnt really come to terms with it, its ruined my body image and also the fact that im changing it every other day then having to cope with worrying about it suddenly leaking and embarrassing myself its just too much to have to manage on top of all the pressure of college.
im really worried about going to uni next year to be honest for the same reasons but even more in some ways as i will be traveling further each day to uni which means i will be a long way from home if anything was to go wrong with my ileostomy.
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saifexperts
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I would like to ask About the leniency of the offer in regard of the grade ,am an A student who really took all these subjects ( math , physics, chemistry and biology )now and the last 2 years as self study my school is teaching American system so am doing dual types of study A levels and Ap and getting an excellent marks during the last exams .
But unfortunately iam sick and under treatment for crohn's disease and am afraid this will alter my results , am hopefully not but am asking to know before to have an idea before i choose my first and insurance choice in ucas , and regarding my illness I can bring a medical record for that .
I contacted leeds asking as am newly diagnosed they told me they are not looking to these situations and i should contact the exam board so an idea how i can contact them?
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Anonymous #2
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(Original post by Anonymous)
aww thanks for the reply. most days i plan what im going to do in the morning but then most days it just falls to pieces withing hours. I also have a ileostomy because the crohns got so bad that i had to be hospitalized and even though the ileostomy has allowed me to improve in terms of my health, the fact that i have an ileostomy which i have to manage is really stressful. I have had it over a year but still havnt really come to terms with it, its ruined my body image and also the fact that im changing it every other day then having to cope with worrying about it suddenly leaking and embarrassing myself its just too much to have to manage on top of all the pressure of college.
im really worried about going to uni next year to be honest for the same reasons but even more in some ways as i will be traveling further each day to uni which means i will be a long way from home if anything was to go wrong with my ileostomy.
While I can not say I have experienced this myself, I have bowl problems and have grown up around people with crohns. I feel for you. Personally I have an ACE Stoma that needs irrigating every two days. And from experience (cause I been their and done that) it really is very common for young to have issues with body image due to a stoma of any kind. I would recommend at this point contacting your stoma nurse and asking if they offer or their is any counselling availible. I know it will not feel like it at the moment but the way you perceive your illeostomy will be you own worst enemy with regards to bogy image and related self confidence issues. I promise when you are totally secure with it so will everybody else.

One day after finishing my counselling me and my friends arrived at a campsite to find the toilet had literally sunk into the ground and I was desperate to irrigate my stoma. They were all eager to help so we dug a hole in the ground, made the saline from boiled water on a camping stove then one person held the two litres of saline above me while I squatted over the hole and gravity ran the water into my bowl. When movement came it was really runny. Despite this probably being most people nightmare my friends really enjoyed learning about me, how I do to the toilet and found the experience such a laugh it is cited as our favourite DofE experience.

Hey and if you want any advice about how better to deal with stoma leaks just ask (you may have heard it all before) my ACE stoma leaks like everyday and I cared for children in South Africa with pouches. But I will put one tip here if you ever struggle to get a seal on your pouch try using bottled water. Tap water can (particularly when your travelling outside the UK) have a high calcium content that prevents it sealing properly. This may actually give a better seal but given it was expensive and mine pouch (before my ACE) always used to seal ok at home I only did the bottle abroad.
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Anonymous #1
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wow! if only we all had friends like yours. honestly it must be great knowing that you have a bunch of people who not only understand whats going on but are willing to help you out. from reading your comment am I right in assuming you have had your ACE stoma for some time now? i have had mine just over a year now and i am truly frightened of going away from home for even one day but hopefully some time soon my doctor might decide to reverse it as my crohns is a pretty unusual case as in it developed in my j-pouch which was created to "cure" me from ulcerative colitis which i had before. the j-pouch developed inflammation and it was diagnosed as crohns. however recently following a endoscopy my doctor has said that he doubts it is crohns, saying that the inflammation has gone down considerably and that if it shows more improvement they may consider reversing my stoma.

regarding your ACE stoma i had a question purely as i dont know much about it. from what i understand, it is a stoma purely to help stool pass by using water to make it less dense? i was wondering if that is how it works is it still possible for some stool to also come out of the stoma as well as the rectum? i apologies if this is a bit too personal and i understand if you would rather not say.

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Anonymous #2
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(Original post by Anonymous)
wow! if only we all had friends like yours. honestly it must be great knowing that you have a bunch of people who not only understand whats going on but are willing to help you out. from reading your comment am I right in assuming you have had your ACE stoma for some time now? i have had mine just over a year now and i am truly frightened of going away from home for even one day but hopefully some time soon my doctor might decide to reverse it as my crohns is a pretty unusual case as in it developed in my j-pouch which was created to "cure" me from ulcerative colitis which i had before. the j-pouch developed inflammation and it was diagnosed as crohns. however recently following a endoscopy my doctor has said that he doubts it is crohns, saying that the inflammation has gone down considerably and that if it shows more improvement they may consider reversing my stoma.

regarding your ACE stoma i had a question purely as i dont know much about it. from what i understand, it is a stoma purely to help stool pass by using water to make it less dense? i was wondering if that is how it works is it still possible for some stool to also come out of the stoma as well as the rectum? i apologies if this is a bit too personal and i understand if you would rather not say.

It's fine I do not mind. And you understanding of an ACE is not bad at all. In fact in my case I was born with out the muscles to go to the toilet so the water replaces their function by increasing the pressure in the large intestine. However an ACE is anything but sealed. Therfore whilst it is too small to pass a complete stool it will pass some of the small unformed stool that comes out your small intestine and any contaminated water from irrigating your large intestine. It is literally like poo contaminated water and it stinks. It can permenantly stain clothes.

Yes your right I have had my ACE over 10 years now. I got it when I was 4/5 and am 18 and a half. To be honest it is rare for children with my condition to have a colostomy longer than 6 months but when the surgeon tried to rectify my anal artresia I went into cardiac arrest due to a congenital heart defect. So he had to stop and I had to wait till after my open heart surgery to have that finished and the colostomy removed that meant my colostomy stayed 3 years just about into my living memory. In the year between this surgery and my ACE it became really clear that I was going to be one who could not pass stool unaided.

A word of advice if they decided to close your Stoma, it is located just over a joint. This will create something called stretch scarring meaning the scar will stretch away from the original surgical line as the joint moves. In my case this has created a scar about one and a half times the width of my thumb. The horizontal lenth of the scar will not change from the original incision because their is no pull in that direction. There is not much you can do to stop this but you can try for maybe three months after limiting your use of that hip joint as far as is reasonable. So find another exercise to running and temporarily reduce your stride length. And use a technique called scar massage to increase elasticity of a scar. These are just adapted suggestions what I used when I a cardiac device put in my breast which is also a mobile section of the body and I can say compared with other girls who had the device wearing a sports bra while I slept limited the force on the scar did reduce stretching of it so it is now narrower than theirs.
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Anonymous #1
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Awwww im so sorry to hear about everything you have been through.
Thanks for the advice regarding the scarring, however my stoma is located just by my belly button so its well away from my hip. Also I already have some scars which to be honest dont really bother me, as they say every scar tells it own story...

seeing everything you have been through, honestly your such an inspiration in my opinion to everyone whose having a hard time with bowel diseases.
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Tiger Rag
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(Original post by saifexperts)
I would like to ask About the leniency of the offer in regard of the grade ,am an A student who really took all these subjects ( math , physics, chemistry and biology )now and the last 2 years as self study my school is teaching American system so am doing dual types of study A levels and Ap and getting an excellent marks during the last exams .
But unfortunately iam sick and under treatment for crohn's disease and am afraid this will alter my results , am hopefully not but am asking to know before to have an idea before i choose my first and insurance choice in ucas , and regarding my illness I can bring a medical record for that .
I contacted leeds asking as am newly diagnosed they told me they are not looking to these situations and i should contact the exam board so an idea how i can contact them?
You need to speak to the person who deals with exams at your college.
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Anonymous #2
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(Original post by saifexperts)
I would like to ask About the leniency of the offer in regard of the grade ,am an A student who really took all these subjects ( math , physics, chemistry and biology )now and the last 2 years as self study my school is teaching American system so am doing dual types of study A levels and Ap and getting an excellent marks during the last exams .
But unfortunately iam sick and under treatment for crohn's disease and am afraid this will alter my results , am hopefully not but am asking to know before to have an idea before i choose my first and insurance choice in ucas , and regarding my illness I can bring a medical record for that .
I contacted leeds asking as am newly diagnosed they told me they are not looking to these situations and i should contact the exam board so an idea how i can contact them?
The previous answer was basically spot on. You say you are self studying A - Levels I think by your post so the first thing is to find out who the examination officer at your centre is. If you are huts sitting your exams at your own school you may already know who that is. The next thing to do is ask to meet up with them and have a chat. She should advise you along the following lines: Ultimately UK A-Level Examination boards are not that sympathetic to problems like this that can cause major disruption to lead up to exams. In the special consideration guidlines it explicitly says there can be no adjustments for problems that effecting exam prepartion. Therefore can not and will not make any allowances for the disruption to your school work. However Crohns is an inflammatory disease, so on the proviso you can have your doctor write a letter explaining that on the day of your exam you were suffering from the effects of a Crohns inflammation ie: fatigue, discomfort and the other symptoms of inflammation they may award a small special consideration that can equate to increasing you raw mark by upto three percent. Thie difference being this is during the exam not in the prepartion. In which case nearer the exams you need to get this documentation. The exams officer should ask you if you want this and if so explain what documentation you need. Assuming they advise along these lines (which should be the case) I would advise at this point perhaps getting a letter confirming your Crohns from your consultant and asking your GP to draft the letter about the effects of Crohns on you for a receptionist to print out nearer exams.

I know leeds have shown little interest in your issues but it would be worth getting your head teacher to send a letter with a letter from your doctor attached to undergraduate admissions secetary at your universities explaining the treatment and disruption to school work. As the exam boards can not account for this but universities can and often will take it in to consideration in either making an attainable offer or being a little more lenient should you just miss your offers. It is important this does not come from you otherwise no one will take it seriously. And trust me here I got offers one would not dream on my AS grades cause my teachers did it well.And by well I mean they explained the problem clearly and made it clear it was not something the exam boards could account for as to do so would undermine authenticity the exam.
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Anonymous #2
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(Original post by Anonymous)
Awwww im so sorry to hear about everything you have been through.
Thanks for the advice regarding the scarring, however my stoma is located just by my belly button so its well away from my hip. Also I already have some scars which to be honest dont really bother me, as they say every scar tells it own story...

seeing everything you have been through, honestly your such an inspiration in my opinion to everyone whose having a hard time with bowel diseases.
Thanks for the compliment. But the same has to be said about I have ever met with Crohns. Crohns is one nasty disease and much rather have what i have. Crohns is made worse by the fact that it is so misunderstood and people are so unaware of it and how badly ill it can make people. I know perhaps it seems like a long time I have had a stoma to you when I have had bowl problems and a stoma my whole life but at the end of the day the ACE Stoma transformed my life. It gave me complete continence where I was previously completely incontinent (and bullied for soiling my pants twenty times a day) it allowed me yo grow properly as before I was so constipated I could not feed properly and stopped developing properly. And it has given me a very close to normal life. Something that someone with severe Crohns will never quite get. Sorry if that sounds all doom and gloom. Crohns is manageable in many cases but some cases can cause flare ups with a vengeance and if it does not settle with in a reasonable time the consequence firly bad as well. I think your right aswell that every scar tells a story. I certainly think my seven surgical ones do. And I love their presence (once the redness has gone )
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Anonymous #1
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Yeah crohns is one nasty disease, would not wish it upon the worst of enemies.
I also really hate how these bowel conditions inhibit the development of younger sufferers in terms of getting taller etc. It really gets on my nerves how all of my mates are taller than me but then I always end up telling myself "brains are better than height" LOL

Its a shame to see how little awareness there is for such diseases compared to others. Like most people haven't even heard of them and once when i told someone i have crohns the reply i got was "but you look fairly healthy" which is a common misconception that a lot of people i believe have about these diseases as there is no awareness of what they are and just how people are affected by them....
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