Newly Diagnosed and Need Some Opinions!

[Lorencait]

Good morning everyone!
My name is Caitlin and I just got diagnosed with Crohn's yesterday:ybatty:, after basically two years of wondering what has been going on (I also had an infected urachal cyst removed a year ago). It appears that I also have an internal fistula between my ileum and some other part...I think it starts with a "s" or "c". My doctor wants to start me on a biological treatment medication, though I'm not quite sure which one--I'm currently taking tests this next week to make sure I have no underlying infections like TB and stuff. I'm perfectly fine with the treatment, except I have two worries. I'm going to be a camp counselor this summer for three months, and I absolutely REFUSE to miss this opportunity. Can I ask what types of medications have worked best for you? Also, I'm worried about being on this treatment because I know that it slows down your immune system...will I be okay around the kids? Should I take wipes with me and just make sure to wipe my hands often? I'll be a Crafts Counselor and a Cabin Counselor, so I'm not going to really going to be SUPER dirty all of the time. One more thing, I'm also going to be flying out to the camp (Pennsylvania to California). Will that make me sick? Are there any ways I can prevent this? I leave on June 7th, so I want to figure everything out ASAP. I've been looking forward to this all year and I don't want to be scared to do it. I see my doctor May 6th, but I just want to get an idea of what to talk to her about. Thank you everyone!

 

[DJW]

Hi and welcome. I think you've go a great opportunity this summer. I spent a summer when I was 16 working in a Provincal Park about 6 hours north of Toronto...loved it.

Have you discussed your summer plans with your GI? Humira is a self injected biologic so it may work. I'm sure someone on Humira (a forum member) can give better info. Imuran is an Immunosupresant drug in pill form. I'm on it and around a lot of kids at the hockey rink. I've had no major problems. Take the usual precautions. Will you have access to medical help if needed.
Hope it work out well.

 

[Mondowicked]

Ooh, I'm so jealous, as I love camp!!! Camp sons, crafts, the kids/friends you make, and camp names- one of mine is Mondo like my screen name. Way to go for refusing to let this disease get in huge way of the epic fun you will be having.
I have been on both Cimzia and Humira while being a special education teacher. Yes, I did get sick, but if I follow simple hygiene procedures and take vitamins as needed, I don't think I got sick more than the average teacher.
My advice:
For the plane ride...take airborne before and after for a day or two. Ask for early seating so you can wipe down your seat area and those next to you with antibacterial wipes. Wipe any area you might touch. Think seat belts, arm rests, inside and out of trays, the flap of the seat pocket (also don't touch those magazines...ewww), etc. basically you want to get any area you might touch during the flight or the persons next to you might touch before say passing you your in flight drink. I used to get colds when flying, but this has done the trick the last couple of trips I've been on.
In general don't touch your face without washing your hands first. Soap and water is best, but hand wipes or sanitizer will do out in the camp setting.
Make sure you are getting enough sleep. If you are feeling tired, give in and nap on your breaks. I remember this one being hard when I was at camp before I got sick.
At mealtimes ask for your own plate of food, dish up first, or something so that you don't have to touch the communal utensils or scoop from bins where food might have touched kid hands.
Be open and talk to the camp about what you are going through. You will need to keep your medicine in a fridge, likely in the nurse's area.
I'm so excited for you. Feel free to message me if you have more questions or just want to talk camp.

 

[Lorencait]

Thank you!
I have informed my doctor about my plans pre-diagnosis, and after my diagnosis, she aid she's going to try and get everything prepared before I leave, and so far everything is getting done very quickly, which I am very thankful for! I'm currently doing a Colonoscopy prep for Friday, and then I see her on Tuesday to talk about treatment options.
I'm not sure if she wants to put me on Remicade or Humira, but I think I'd rather go on Humira since I can take it with me and inject it myself or have the camp nurse administer it to me. I'm a little scared, because I've read the health effects it can create, but for the most part I've been a fairly healthy person. I'm so excited and I really hope that the medication will help! Thank you again for the advice! I'll just have to be a little more alert than usual I suppose!

 

[Nancye50]

I second the airborne or Emergen-C recommendation as long as you try it before actually going to make sure it don't affect your stomach right before the trip!

 

[theOcean]

I've been on Humira since last November and it's done wonders for me. Hopefully it will be good to you too! I know the side-effects list can be scary, but even my GI told me that it's more likely that it'll either work for you or it won't without the side-effects, so he didn't seem to think it was dangerous. Just keep an eye out if anything seems off. Otherwise: I guess I'll see you around the Humira section in the future.

 

[Lorencait]

I honestly cried the first day I was diagnosed and told I need to go on a biologic! Haha I felt very scared after hearing all of the warnings/side effects. However, I've calmed myself down and I'm not too worried...I'm starting to feel VERY excited, to be honest! I have to get a Barium X-ray on Thursday (quite honestly my least favorite test because of the "milkshake"), so hopefully everything turns out okay and I can get the medicine ordered next week! I am so ready to start feeling better. Also, I'll definitely invest in some Airborne and wipes! Thank you so much, everyone!

 

[ti!mbh56]

Hi Caitlin,
If your doctor has expressed no urgency for your treatment options or risk in attending your camp plans, then I see no reason why you should worry.

While Crohn's can be unpredictable, most of us find a path to levels of 'normal' as we try the various prescribed treatments.

I was diagnosed in Dec 2010 and have been through a few medication regimens. For me its Humira (I had an adverse reaction to Regicide, but most people don't), Entocort (Budesimide??), and Pentasa. But none of the journey dictated putting my life on hold.

I only can pass on what my mentor passed to me: Research and advocate for yourself! This means that you need to listen to doctors, dieticians, or whatever resources you seek, but always trust your instincts when things don't seem right.

Stay in touch with this forum and any resource you can find when you are in distress.

I wish you the best, and I hope you enjoy camp!

 

[Amaze]

Welcome to the forums

Its good to see you and your gi hash things out. If you go the humira route make sure you take proper precaution for storage. Don't expose it to the sun. Don't use it if its brown. And always have it stored in the fridge

 

[Amaze]

If you're going to travel with it make sure its in a cool carrier with an ice pack

 

[Lottie93]

Hello,
I Hope you are coping with the new diagnosis, it can be quite a shock initially but at least now you can get some treatment . PM me if you just want to chat/advice.

As many above have said Humuria is the best as these are injectable so you don't have to go into hospital for infusions and you can bring it with you as long as you have adequate storage facilities (fridge, packaging).

I can give some personal advice with the kids/immune system. Not only do i work with kids every weekend but i am a medical student so i spend a lot my time surrounded by sick people.
You just have to be clever and sensible about it, avoid anyone with infectious conditions e.g. a kid with chicken pox and just practice good hygiene, carry some alcohol gel with you.

I have to admit that i do get ill a lot! Even when I'm not on placement if my friends get anything i get it worse but I've still been able to carry on with life so please don't get too worried about it.

I actually have just started on a biologic (remicade) and i feel amazing! So i really hope it has the same effect for you.
For the barium meal bring chewy mints to chew while you drink, can help.

Make sure you have a little personal medical pack when i go away i always carry diaralyte, laxido (contra indicatory i know haha), buscopan, antiemetic, painkillers etc etc
Good luck my dear
Xx