Decided it's time to stop lurking

[Talaia]

Hello Everyone, I've been lurking on this forum and I decided it is time to actually get an account and participate! I am nineteen right now and doing a joint degree in math and physics at university. I was diagnosed with Crohn's when I was eight years old, but for a lot of my childhood it was pretty well controlled. In the last couple of years it has been more active, although I think it would still be considered fairly mild.

Managing my Crohn's has been a challenge recently, especially since I have recently moved out, changed doctor and taken complete control over my own healthcare decisions. I often feel like I'm flying blind because I don't remember certain details from when I was much younger. It is also difficult to balance my (large) workload when I am feeling fatigued/unwell. However, it's also the first time in my life that I've managed to be open with my friends about my disease and they have been amazing and supportive. <3

I am looking forward to getting to know this community and hopefully make some more friends.

dftba,
Talaia

 

[LisaL]

I just wanted to say hello and welcome to the forum. It sounds like your symptoms are pretty well controlled. As fr as your history, you should consider getting a copy of your pediatric records so that you will have more information for your adult doctor if/when you need it. The sooner you do this the better as medical records can be put into deep storage and are harder to access after a while. Also, sit with your parents and try to get their history of your illness as a young child. This may or mat not be very helpful. I had all sorts of GI symptoms as a young child, and had several tests, but to the best of my knowledge was never diagnosed until I was in my late 20's. I have spoken with both of my parents but their memories are not any better then mine!

Find a GI doctor that you like an trust and stay in contact with him/her. Ask for copies of any blood work you have done and results of any tests. Also, if your parents are a support for you don't leave them out. I am 46, but when I was recently hospitalized after emergency bowel resection surgery my parents were great. There in the hospital with me and my husband, and helping with our three kids.

I hope you continue to feel well. Try not to stress too much about your school work (ha ha) and take good care of yourself.
-Lisa

 

[Angrybird]

Hello and welcome to the forum

Just to confirm your tum is settled without any problems at the moment? Do you follow any type of diet? With regards to vitamins it can never hurt to get your GP to do a check on these as it is common with crohn's to have deficiencies in this area so it's good to know exact levels so adequate supplementation can be given.

Wishing you all the best.

AB
xx

 

[KWalker]

Hello and welcome! First, if Talaia is your name and pronounced the way I imagine it would be, that is a very nice name and I really like it.

I can empathize with you taking control of your health by yourself now after moving out because I did the same thing a few years ago. I was diagnosed with crohns when I was just two years old so as I was growing up, it was my mom that took care of everything, made all the decisions with the doctors, etc. It didn't even really matter my opinion anyways because I was young so my mom could call the shots.

When I was 19 I moved out and moved 4 hours away from home and am now taking care of my health as well. I had a little bit of experience because I've been on so many different medications but it was a big adjustment when the doctor was asking ME about my symptoms, experiences, etc and I had to somehow come up with educated answers so the doctor would take me seriously and not try and take advantage of me.

At first it might feel overwhelming but as time goes by you will feel more comfortable with it. Nothing worth doing is ever easy, and taking control of your crohns is definitely worth doing lol.

I'm happy you found us and I hope to see you around the forum! Please don't hesitate to ask me, or anybody else questions. We're like a little family here so we're all here to help

 

[Talaia]

Thanks for the words of welcome everyone!

LisaL, I have submitted a request for a copy of my chart to the Children's hospital (where I was previously treated) about a month ago, and they have not gotten back to me. :/ I am worried that it has been lost since the hospitals in Montreal are in a bit of a mess at the moment because several of them are moving to a new "superhospital" building. I'll definitely try talking to my parents, but I'd still love to have the actual documents. Also, I'll definitely try to follow your advice about keeping my parents in the loop. They are only an hour away so I still get them to drive me to the hospital when I need a cscope or something.

Angrybird, I guess I should have been a little more precise. I'm still kinda having slight abdominal pain and a bit of blood in my stool, but it is definitely not bad at all. My crp has dropped to normal (which I don't remember ever happening before!) so hopefully this is just some kind of residual thing. At least, it is not stopping me from doing anything at the moment. What's more annoying is that I feel extremely tired and I'm not sure why. I had B12 and thyroid checked and nothing's wrong on that front. I'm slightly anemic, but not more than usual lol. I am convinced that it is a side effect of the Azathioprine, which I started taking three months ago. (I take 125 mg a day.) We did not get along well at the beginning; it made me very nauseated and dizzy (like the floor was wiggling up and down) and shaky (like my muscles couldn't contract). All that has gone away but the tiredness is sticking around. I don't follow an "official" diet, but I do think about what I'm eating. I just avoid certain things if I felt bad the last time I ate it. I have also been eating a lot less meat recently. Any suggestions on which vitamin levels I should have checked? I can just ask my nurse practitioner next time I go for bloods, I'm sure she won't mind.

KWalker, I totally know what you mean about the doctor speaking to you instead of a parent. When I was younger I remember staring obstinately at the wall as my doctor explained things and that definitely does not work anymore! It was really scary making the decision to switch to Aza. I felt completely unqualified. I guess it's the kind of thing you get used to, and yes I think taking control of one's Crohn's is definitely worth doing.

Thanks again everyone for the replies! It feels great to have all these people around ready to answer questions and share their experiences.

Take care
Talaia

 

[Angrybird]

I would try and get the specific level that your B12 came back at as some docs will say you are within normal limits but the range ia huge and a low normal can still mean will suffer from effects of this, also perhaps to have you iron levels looked at and if you are anaemic to be treated for it. I would also speak to the GI doc/nurse about the bleeding, continued discomfort and mention the fatigue as this should be looked into, a low CRP in my experience does not indicate the tum is completely settled.

 

[Talaia]

I usually have B12 done every time I have bloods so I'll ask for the actual number next time (yay quantitative data). The problem with my iron is that it isn't *that* low (actually it is pretty normal for me) and when I tried to start taking an oral supplement I had much worse pain and I think it is really irritating my intestines. I'm going to try starting again on a lower dose and see if that's any better. Actually if anyone has had this problem and has some suggestions that would be awesome. I'm taking eurofer, which is supposedly the best tolerated (according to my pharmacist).

 

[CeeCeeGo]

Hello Talaia (what a beautiful name) and welcome
I have been taking an iron tablet for the last two years and have tolerated it well. I am taking Ferrous Sulphate 200mg every other day. I always take it after a meal and the only effect really is black poos (tmi - sorry).
I am in awe of what you are studying - maths & physics - WOW.
Good luck and take care.

 

[Talaia]

Thanks! I feel like I am spending SO much of my time working on math and physics, it's nice to be complemented on it. Wow, I was taking 300 mg every day, so maybe decreasing to every other day will help. That's what my nurse suggested.
Cheers, Talaia

 

[rygon]

Hi and welcome to the forum. Im also doing a joint maths and physics degree, although mine is distance learning. Luckily I have found it really interesting still (5th year out of 8) to keep me going at it, but as you said it can be very hard.

I use the following sites for info which may be of some help to you.
http://www.wolframalpha.com/
https://www.khanacademy.org/
http://www.richannel.org/ (their xmas lectures are amazing)

Getting back on the IBD track, it may be vitamin D deficiency tht could be causing tiredness as people with IBD find it hard to absorb it (check the diet section for more details)

 

[Talaia]

Yay, I found another math/phys person. Haha, wolfram alpha is my life! It's actually my homepage. I also love going on http://pirsa.org/. What area of physics/math are you particularly interested in? I'm only in my second year, but I managed to land a spot working with a group that does quantum stat mech for the summer, so it looks like I might be getting involved in that area.

I'll see what I can do about getting vitamin D levels tested. I don't think they normally check that for me. My friend in physiology was just explaining the idea of vitamin D winter to me. I didn't realize that your body cannot make vitamin D from sunlight at all during a certain part of the year.

 

[David]

Hey there Talaia, thanks for unlurking It's nice to meet you.

That you're on azathioprine and still have the symptoms you do is concerning to me. Unless you've been on it for less than six months, that tells me it's not working quite as well as we had hoped. A couple questions:

1. What is your dose?
2. Did they ever do any TPMT testing to help determine what optimal dosing for you might be?
3. Have they tested your thiopurine metabolite levels? That's basically a fancy way of saying, have they run the test to make sure the azathioprine is operating at a therapeutic level.

All my best to you

 

[CeeCeeGo]

Hello Talaia
I totally endorse what David has said above and also the post about Vit D. I recently have had both Vit D and Vit B12 checked and they are both very low and I am now being treated for that. There has been a quick win in that I have loads more energy in the last week - maybe I could do a maths/ physics degree? I think not - I'm not that brainy LOL!
Take care

 

[rygon]

Im not sure yet. I have spent most of my time on my maths courses. I do enjoy maths but I do find physics more exciting. I work at a power station so want to learn more about thermodynamics and especially magnetism, but I think quantum physics is really interesting.

Ive got a module on quantum stat mechs this year so t would be great to read what you will be doing this summer. Hope you enjoy it

 

[Karen]

I am sure that you will HAVE a GREAT time here with us and you will ALSO get lots of GOOD HELPS & MAKE LOTS of GOOD FRIENDS !!!

 

[Talaia]

Hi David, in response to your questions: 1) I'm on 125 mg/day, 2) no, my doctor just calculated it by weight, 3) I had my thioprine metabolite levels tested three weeks ago but it will take a further three weeks for the lab to process the results. Also I only started taking aza about four months ago. I was actually doing pretty well until a couple of weeks ago when I started having mild symptoms again. (Which just so happened to coincide with my midterms.)

Rygon, I won't have taken a real electromagnetism class until next term but from what I've seen it looks like a beautiful theory! I actually wish my program had more math near the beginning because sometimes I end up trying to do the physics without the necessary tools. Anyway, I'd love to talk math/phys anytime.

Thanks for the welcome Karen!

 

[David]

Good, I'm really glad they ran that test. Too bad it takes so long to come back though. Please be sure to update us as to what the result of it is.

 

[Talaia]

Hello all, I just wanted to update you on the 6mp metabolism test that I had done a while ago. It looks like my 6TGN levels are a little too low to be doing anything (130 Iforgettheunits, but it's supposed to be at least over 200) while 6MMPN is a little high, and apparently this is bad for your liver. I'm not sure what we are going to do about it yet, but I'll probably find out in the next few days.

 

[Talaia]

Look at that, there's a handy link that says 6TGN concentration should be between 235-450 pmol/8 × 108 erythrocytes. Thanks wiki!

 

[Karen]