Rough first year

[javery]

Hi everyone, I will turn 27 in 2 days (saturday) and I was in the hospital and getting bounced back and forth from ulcerative colitis/Chron's but they finally settled and diagnosed me with Chron's in June of 2010. I have been healthy my whole life, only gone to the hospital for stitches, so this thing was a big shock to me. I still get depressed sometimes if I think about it for too long, but I am also proud of myself for being able to get through it and still stay physically active and do the same things I love, I am sometimes able to dig myself out of those times, but sometimes I still need help from other people or to talk about their experience.

I was on remicade from June-November and it seemed to be working, but then I went on a cruise to mexico and my symptoms returned, the hospital said i caught cryptosporidium, but some doctors didnt agree. They said the remicade was wearing off, and so now I had my first shots of Cimzia on Monday (3 days ago), and I am waiting to get on Imuran tomorrow or the next day. That is where I stand now. Does anyone have any advice or know what I can do for myself to prep for the Imuran? I hear alot of negative things about it, but there has to be something I can do for myself to actively strengthen my body to prepare for it. I dont like the idea of just being fed all the meds and hoping they work, or hoping to avoid side effects. Any vitamins or supplements that may help my body stay strong during this time of all these new meds? I am taking folic acid.

Thanks for any help and I hope to help someone else some day if they need it.

Jonathan

 

[CDDad]

Hi Jonathan,
Happy pre birthday. I remember when I got my diagnoses - on the way home I just pulled over and cried. It was quite a shock. but that was a long time ago and I've been through just about everything Crohn's wise since then.

It sounds like you are on an agressive med plan, so that's good. I understand how you feel about all these meds, but you don't want to end up with surgery, and more surgery, (like me), so you've got to get and keep it under control.

Your doc wants to combo Imuran with Cimzia, so they must think you have a bad case. I was on Imuran years ago and it did not agree with me. I think my doc at the time upped my dose too much. Started feeling lousy and had to go on pred.

Good luck with your treatment!

 

[javery]

Thanks for the reply, I had actually read about your story and some of your replies before I registered, because I also used to enjoy running alot, but now I am scared to try, because the path I ran was 2 miles each way, and I am not sure if I would be stuck half way with an intense attack. I go to the gym but I really want to get back to running.... How did you ease into it after your surgery? Do you think I should start with just the single mile and see how it goes? The thing is, it's never consistent, so I am scared I will do the mile and be confident, and attempt the 4 then have a problem. (Also let me know if I need to move this over to the diet/exercise section.)

Thanks

 

[ameslouise]

Hi Jonathan and welcome!

I understand that feeling of just pumping yourself full of meds, hoping they work and hoping you don't get any side effects! It's great you are taking Folic Acid as Crohnies are notoriously low in the B vitamins. You may want to add a B complex as well, and make sure your magnesium is good.

Hope the Cimzia and Imuran does the trick for you!

- Amy

 

[javery]

I had forgotten about b-complex with all the other pills I have to take! I will have to find a nice high quality b-comp this weekend. Thanks!

 

[CDDad]

The trick to running with Crohn's is having bathrooms along the path. Not always possible, so the best solution is to run at a park with bathroom facilities.

One nice thing about having a bag, is never having urgency and worrying about finding a bathroom. Plus, I've been in remisison since my surgery (1 year next month).

I started about 2.5 months after my surgery. I received a CCFA Team Challenge mailing for the Vegas Half Marathon. At first I had a lot of self doubt. I had not run in 8 years and had never run more than about 4 miles. I was also in a sorry state physically from surgery. I just took a chance and signed up and started the "Couch to 5k" program.

After 8 weeks of that, I moved into the beginner half marathon plan with the team and never stopped. The Vegas half marathon was great, and now I'm looking forward to my 2nd next month. I highly recomend Team Challenge - they start a new season about 3 times a year and are always looking for new members. They have teams accross the country and a national team for those in remote areas. My NJ team always trained at parks with bathoom facilities.

 

[javery]

Hey congrats on your remission, glad to hear it. There is a heart-trail with exercise stations near my house and it is only 1 mile long, and there are bathrooms at the beginning and half way point, I think I will do some training there for a while to get back up to speed. Thanks for the inspiration

 

[hawkeye]

An altternative to the couch to 5K may be a run 1 minute, walk 1 minute program. That is how I got into it last year. The running time is increased until you run for 10 minutes and walk for a minute. I run distances doing 10 min. running and 1 min walking (longest distance was a 5k since starting last spring). I had a couple of flares since November so am just getting back into training to do another 5K so I was out last weekend and am trying to run for 4 min and walk for 1 min.

Mark

 

[xJillx]

Hi Jonathan and welcome! It sounds like you have some great doctors that don't mess around. I hope your new plan of attack does the trick!

By the way, Happy Birthday! Enjoy!

:bdayparty:

 

[javery]

Thanks for the replies, I took my first dose of imuran last night, 75mg. It hit me really hard about an hour or two after, a lot of fatigue, no nausea though so I am thankful. Hopefully it will be the same each day I take it. I am scared because I am on cimzia, 50mg pred, and now imuran, I am afraid to get sick. Thanks again everyone for the greetings and advice. I also started a b complex and fish oil

 

[juicy24]

Happy birthday!
When you have crohn's you really have to try and not let it get you down. Ive had it for 4 years now and I still cry about it because I am mad that I am sick. I don't get to do what a normal 23 year old does. I get mad because I have to live a different life that I didn't really want. But then I remember that I am alive and I am better for now, that's better than not living at all! I have not tooken the meds your on, but I do take b-12 shots since that part of my intestine was removed. It makes me feel a little better, more energized. Anyway good luck and keep us updated!