Telling uni I have colitis

natythingycolbery · Post by **natythingycolbery** » Fri Oct 15, 2010 6:13 pm

Hi all,

Basically, as I was diagnosed with LC over the summer holidays the university I have attended since 08 didn't know about this condition.

I already recieve DSA (Disabled students allowence) for my other medical conditions, and am now I have a meeting to discuss this with my DART advisor (AKA Disability advisor).

I have only just managed to sort out a meeting with my advisor for this coming monday because I have had to come back to my home city a lot for hospital appointments (Something that I will mention in the meeting) and all the times they had available where at times I was in lectures.

The whole point of telling them is so that they are aware of the condition, however there has already been an issue with this, being when I first rang my DART advisor to tell her that I had this condition and what do I need to do about it? She actually admitted that I was, to the best of her knowledge the first student the uni has EVER had with any type of IBD (I find this a bit odd) so she didn't know what the could do in terms of support.

So any advice on what to do to educate them and get any support I may need at the uni? I mean I know I need to tell them what it is like on bad days, but other than that, I am not sure.

Post by **tex** » Fri Oct 15, 2010 9:09 pm

Naty wrote:She actually admitted that I was, to the best of her knowledge the first student the uni has EVER had with any type of IBD (I find this a bit odd) so she didn't know what the could do in terms of support.

I find that very hard to believe, also. As many cases of Crohn's disease and ulcerative colitis as there are in Great Britain, and the other developed nations, how could they possibly have not had any students with these issues, previously? The only way that would be possible, would be if this were their first year of operation, which I gather is not the case, so I'm guessing that prior students with IBDs simply kept it a secret from the University administration.

Maybe they just assumed that it wouldn't do any good to report it to their advisors.

If they are totally unfamiliar with the IBDs, they may need to read up on them, to get an idea of what is involved. The most important issue that you might want to discuss, is the fact that on bad days, you might need immediate access to a bathroom, and on some days, you might not be able to attend your classes. Hopefully, that won't be very often, but they should probably be aware of the possibility.

Tex

natythingycolbery · Post by **natythingycolbery** » Sat Oct 16, 2010 11:52 am

So I should maybe take in some information about this condition too then?

Post by **tex** » Sat Oct 16, 2010 12:36 pm

That might be a good idea, since they apparently know virtually nothing about it.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Sat Oct 16, 2010 4:18 pm

Naty
taking information is a good start not just for them, but for yourself as well, if they ask questions then you will have some answers

as it is a personal slightly emotional issue you are discussing, write down some bullet points of the key things you want to ensure that you get to discuss, in case you get distracted, and write down any questions that come to mind as you are prearping for it

one thing i have found useful to help you with the discussion and for them to absorb the information, is a typed up summary of key events, a list of dates and what test or procedure or event occurred. given the events of the last couple of years that you have had this will also give them a summary of what you have been dealing with.

in the last 10 years i have had to give my medical history (from childhood to now) to at least 12 doctors. I now carry the summary as a word doc on a usb stick, print out a copy if i am going to a new doctor.

good luck for the meeting,

natythingycolbery · Post by **natythingycolbery** » Sat Oct 16, 2010 6:39 pm

Okies, do we have any links to helpful articles I can print off to take in with me? or should i just create my own list thingy?

Gabes-Apg · Post by **Gabes-Apg** » Sat Oct 16, 2010 8:10 pm

check out the folders

Freq asked questions
LInks to good information
Current REsearch ......

use the "search the archives of this discusssion board" function to look up key words within that folder
(you can narrow down the search function to look in particular folders)

in my case when i was discussing MC with my employer i did up a 3 paragraph summary based on various information within these areas
like planning a major essay think about the key points you want to get across

for majority of the population to hear about a condition that they have never heard about before, that has symptoms like chronic D due to ingestion of small amount of an ingredient, and there is no cure is pretty full on (as it was for us! ) be patient with them and like many of the medical profession dont have too high an expectation for the meeting.
in the wise words of Ant, slowly slowly catchy monkey....... dont expect instant results,

natythingycolbery · Post by **natythingycolbery** » Sun Oct 17, 2010 1:15 pm

Ok, all sorted and ready now, thanks for the help

natythingycolbery · Post by **natythingycolbery** » Mon Oct 18, 2010 5:17 pm

So that meeting was... um interesting. Firstly, my DA (Disability Advisor) has had 2 months to look up a little bit on this condition and she hasn't (I know that she may have been busy with assessments etc, but 5 mins research wouldn't have been to hard would it?).

Anyway I walked in and she said she didn't know how they could support me, I presented her with a handout I found on another website http://www.nacc.org.uk/downloads/factsh ... anHelp.pdf Yeah that is aimed more at UC and Chrons, but I told her, it also applies to any type of IBD.

So after we sorted this out, she is arranging for the faculty/school to be aware I may suddenly need to leave rooms or leave all together if i get a sudden flare up. Also they are looking into me getting some support for the en-suite accommodation I currently live in, and are already requesting I stay in on campus accommodation again next year, as well as some software I need

Post by **tex** » Mon Oct 18, 2010 7:53 pm

Well, that sounds encouraging, but it's a good thing that you were prepared, because she sure wasn't.

They criticize students for not doing their homework, but I suppose they think it's OK if their faculty and administration personnel don't bother to do it.

Good for you, for looking out for yourself.

Tex

natythingycolbery · Post by **natythingycolbery** » Tue Oct 19, 2010 9:55 am

Unfortunatley, they have now sent out information to the faculty office saying i have IBS!!! I don't know whether to laugh or cry!

Post by **tex** » Tue Oct 19, 2010 10:44 am

I'm beginning to wonder if there is any hope for them.

Tex

natythingycolbery · Post by **natythingycolbery** » Tue Oct 19, 2010 11:02 am

I've taken this route

I've emailed telling them it's an IBD not IBS, just waiting to hear back now.

Also, another mistake, the new software and extra funding for accomodation that they have requested, they have to say how many years I have left at the uni, the forms they have sent off say I only have a year left, which would have been true if i wasn't repeating the year!

Never mind!

ant · Post by **ant** » Wed Oct 20, 2010 1:54 am

Dear Naty

Perhaps you Uni Admin people need to be tested for gluten intolerance - they seem to have a bad case of "brain fog"!!

Best, Ant

natythingycolbery · Post by **natythingycolbery** » Wed Oct 20, 2010 3:11 am

That has made my morning!