New to Crohns

[crohnsisuncool]

Hi,

My name is Maia, I'm from the UK, I'm 20 and I got IBD in January of this year. Originally my doctor thought it was an infection, but after a few more visits they thought it might be IBD. My doctors are mostly sure that it's Crohn's as I had a colonoscopy a few weeks ago. I've been given mesalazine (also called mezavant xl) to take everyday, and this has really helped as I was in a lot of pain, was going to the toilet 10 times a day (painfully i might add!), had little or no energy and was throwing up as well. All of these made a pretty sucky mixture and made it really difficult to leave my house.

So far I've had a lot of ups and downs, especially as I got ill in the second week of January so I haven't been able to do anything this year. I really hate when people ask me what I've been up to and the only thing I can tell them is that I've been ill!

I've also been really scared for my future, about what jobs I can do and what I'll be able to do. Basically just worrying about what my limitations are now. I know people say you can live with it, and I know this is true. But at that the same time I know that I'm not gonna be able to have a normal life ( well, like I used to have anyway I know there's no such thing as normal).

What I'd really like to get from this forum, is just to hear people's experiences and find out what its actually like to live with Crohn's as opposed to all the medical stuff. In particular work and travel as these are two things that are on my mind at the moment. (I have a holiday planned in September and I'm kind of worried about it).

Thanks for reading!

Maia

:luigi: Here is Luigi because I like his little dance!

 

[purdueCrohns]

Don't cancel your trip. You have no limitations. My advice to you is don't let it beat you. Don't let it stop you from doing anything. I'm not sure if you have How I Met Your Mother on the airwaves in the UK, but one character from there, Barney Stenson has a motivational poster in his office that really rings true. "If I ever get sad, I stop being sad and be awesome instead."

 

[purdueCrohns]

Make sure you eat well and take your meds regularly. I'm not sure if this is sold in the UK, but Boost is something that is easily absorbed when sick. My doctor did studies and found that to have the quickest absorption. I'd recommend it to keep you going. http://www.boost.com/nutritional-drinks

I'd also recommend using a probiotic when traveling. This can be in pill form or done by eating yogurt. That will minimize the effects of things like differences in drinking water when traveling.

I use this:
http://culturelle.com/

That was recommended by my doctor

 

[crohnsisuncool]

Wow thank you both so much! Yes we do have How I Met Your Mother in the UK, I'll keep that in mind! I don't think we have boost in the uk, but thanks for the advice!

Can I ask (if you don't mind) how you find it juggling work and Crohn's?

 

[purdueCrohns]

I have no problem at all. I would recommend being open to your boss about it. You'll find them to be more understanding that you would think.

 

[Mr D.]

Even though I was only properly diagnosed a few days ago, I've been living with the symptoms for 2 years. You can imagine that living with the symptoms of a disease and not actually knowing what it is makes it quite difficult to manage.

But guess what?

Since I've been sick, I've travelled through Latin America, The Caribbean, China, Fiji, Thailand, The U.S, Qatar and last year spent a month in India (of all places). It was a challenge, but you have to take it as it comes and not let it win the mental battle over you. When travelling, I managed myself by eating smaller amounts, I timed my meals in accordance with rest periods in my travel (ie: I ate more daringly if I knew the following day would be spent relaxing at the hotel). Before going to any non-English speaking country I learnt how to ask where the toilet was in the local language. Chiso hai Bindou'a!? - I have a very amusing story from that (not so amusing at the time).

I also have to travel a lot for work to weird places like in the middle of the desert, etc, but as I've come out about it to a few key people at work (on my condition that they keep it to themselves - which they have) they've helped me out by allowed me a more relaxed schedule with work travel. A few times I've briefly run out of boardroom meetings halfway through, and they understand why. It can have it's awkward moments at times, but in the workplace, people are going to judge you on your ability to do work, and the effort you put in, and with good management you can accomplish as much as anyone else in the workforce.

I know it's stupid to make comparisons, but I always like to think of Stephen Hawking, the famous astrophysicist. He has one of the most terrible illnesses you could possibly have and yet he has accomplished more than most people could ever dream of.

It's definitely tough, and an added challenge, but life is always going to throw challenges at you when you're not ready. I think if I had let it limit me a lot more, I would regret not having the amazing memories that I do. There are times when it has severely limited me, but I try and just see those times as downtime to relax and in doing that I spent a lot of time at home on my own and actually found a new passion (writing stories), so I guess good things can come from bad situations if you're open to it.

At the beginning I found it very hard to talk to people about it, even people close to me, but gradually I've been coming out about it to people I trust, and it's been good. It has made my life easier in many ways by being open about it. Now, when my friends want to socialise and go out, if I am not up for it, a lot of the time they understand and we just spend a saturday night partying at my house instead where they know I'm comfortable. (I purposely moved into a house that had more than one toilet)

I know I seem very positive about it, and I really am trying to be, but there have been times where I've been very depressed about it too, and that's normal. We're only human. I hope you can try and work some positives into a bad situation also. It's not easy, but nothing that's worth it ever is.

 

[crohnsisuncool]

Wow! That was great! Thanks to both of you, this has made me feel a lot better! I am going to apply for a job that will be 35 hours a week, and I might have to do late nights and weekends. And I was really worried about how the workload would affect me, as I know stress plays a big part in Crohn's, but your story made me feel really good, so I'd like to give you my biggest thanks. Sometimes it can be incredibly hard but I think fighting it, and not letting it get to me, always makes me feel better at the end of the day! Is it the same for you guys?

 

[bumdeal87]

Hi Maia,
I am new to this site but not new to crohn's. I've had C for 26 years! I've had major ups and major downs...the trick I've learned is a day at a time. I have had 8 surgeries countless hospital stays and I don't want to know how many hours of my life I've spent in the bathroom.
Don't cancel things unless you are absolutely sick and I agree with the above...be open with your employer. It can be embarrassing to talk about at first but soon it will become second nature. Most people are very understanding and as long as you are productive they're willing to work with you. I've had some awesome coworkers who have been understanding and have stood up for me when I come across those who can be snarky.
A positive attitude can go a long way!!
I have worked most of the time a full time job and taken care of three kids. I do have an amazing hubby who pitches in when I don't feel well but I try really hard to not let it take over my life. You can let it control you or you can (somewhat) control it. You can at least control your attitude.
I travel a lot and haven't had any major catastrophes. I will say I have learned to listen to my body so even if I'm on a trip and I start to feel stressed and am running to the John...I take some time to relax and meditate. (nothing crazy) It helps me...and I can usually resume normal activities quickly.
I'm in a little slump now as I'm in the midst of a full blown flare. It's all good and a part of the journey. One day at a time...hope I didn't bore ya...keep your chin up!!

 

[Crohn's gal since 1989]

Wow! That was great! Thanks to both of you, this has made me feel a lot better! I am going to apply for a job that will be 35 hours a week, and I might have to do late nights and weekends. And I was really worried about how the workload would affect me, as I know stress plays a big part in Crohn's, but your story made me feel really good, so I'd like to give you my biggest thanks. Sometimes it can be incredibly hard but I think fighting it, and not letting it get to me, always makes me feel better at the end of the day! Is it the same for you guys?

I got my Crohn's diagnosis in university. While I had some difficulty as an early 20 something managing university life with my illness, Crohn's hasn't ruled my life. I am forthright with employers (who have all been understanding). Stress, and the way you handle stress will play a huge role in your disease. Once I realized that the opinions of strangers and those not close to me didn't matter, I started enjoying life and my symptoms eased off. I've 3 really nice long remissions, 2 children and have travelled to England, France, Cuba, Mexico and USA. I've been on flights up to 12 hours with no ill effects.

Live your life...don't let Crohn's live it for you!:beerchug:

 

[crohnsisuncool]

Wow! Thanks so much to both of you! Reading your stories makes me feel so much better! Bumdeal87 I'm sorry to hear you're having a flare up, I hope you feel better soon, but it sounds like you have an amazing support system Thanks Crohns gal since 1989, I totally agree with you, I think I'm still getting used to it but I hope that along the road I will be able to not think about it so much! Can I just ask what the deal you have with your employers is? For example, do they give you time off or lighten your work load if you are ill? I'd just like to be prepared for when I start work again. Thanks so much you guys rock! I love the atmosphere here, everyone's so great!

 

[Crohn's gal since 1989]

I'm very fortunate to have a very good health plan. My direct supervisor has a family member with Crohn's, so she is very understanding. Anytime I've felt ill, I have just left work, or taken a sick day. My company lets you bank sick time to a max of 130 days, and I've been lucky that until this year my Crohn's was never so severe that I needed them.