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youngj328
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/16/2009 1:58 PM (GMT -7)   
So, I like to consider myself a fairly active guy. I hike, backpack, workout, exercise. I actually just mentored the CCFA Team Challenge for the Vegas Half Marathon. Now I've been in and out of the hospital for the past month or so with severe pain, nausea, fever and weight loss.
 
For me, the worst part of having Crohn's Disease is my inability to stay active, I just feel weak all the time and need a bathroom nearby. Even my career (Fire Department) requires me to be active, I am on extended sick leave and about to go off payroll because of it.
 
I ran the half marathon despite being sick (i was having a much better week that week) but ended up in the hospital about a week later (this week). I'm losing my mind being to weak to workout, work, run, socialize, basically anything that keeps me out of the house, I temporarily moved in with my parents just so i can try and rest and let the new medications work. Especially because my goal is to complete my first triathlon this summer.
 
I know I need to rest up and get better. But i was hoping someone might be able to give me some tips on how to deal with being stuck near the house/bathroom, and not keeping active?
 
Thank you for the support
 
Justin

Justin - NYC
 
Chron's diagnosed 2004, estimated 1993 via prior med records
Resection may 2008
Meds?? theres a nice long list in my wallet......just started cimzia though


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 12/16/2009 2:24 PM (GMT -7)   
Could you do any sort of low-impact stuff inside? Weights or aerobics or something? At least you'd be a little active then and could be near the bathroom if necessary. Although, if you're feeling that weak, you might want to just recuperate for a little bit, I don't know. :( I'm sorry you're feeling so bad.
30/f
chronic active colitis/possible Crohn's - unspecified IBD
Lialda 2x/day
Entocort 9mg 1x/day
Darvocet or Tramadol as needed


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 12/16/2009 3:28 PM (GMT -7)   
Hi Justin,

Sorry you're having such a rough time right now. I can relate to you. Before my diagnosis I was an swimmer from the time I was 7 all through college, and then after college I ran marathons. Just last year, I had to take off running for a while due to sever SI joint pain, which at the time, I had no idea it was Crohn's getting ready to rear it's ugly head.

During this summer when I got really sick, I had to take off of all exercise for about a month and a half. That was the longest time I haven't exercised since I can remember. Part of it was due to the fact I was in the hospital trying to figure out what was wrong, and then after I was released, I had severe arthritis in my ankles, no energy, and had to be close to a bathroom. I was put on Remicade, and thankfully that has at least temporarily given me my life back.

As far as coping, I agree with leysa, I think right now you just need to focus on recuperating. Remind yourself that you won't lose that much fitness, and since you were active before, you'll get it back very quickly. Your body will let you know when it is ready to exercise again. If you push your body into exercising too much when you're sick, I think it will just take you longer to get better.

If you were running half marathons just recently, it won't take you long to get back to running again. It's only winter, and if you have a triathlon planned for the summer, you have time. From what I have learned from Crohn's so far in terms of exercise is to learn to listen to my body and push when I know I can handle it, but back off when it needs it. I think taking off exercise is harder mentally than anything, so just let yourself know that you are doing the best for it by resting, and you'll be that much more motivated when you are able to get back to it. Hope you are feeling better very soon.

youngj328
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/16/2009 3:42 PM (GMT -7)   
I know you are both right, Its just really difficult at times. I know the mental point of it and the fact that I need time to just relax and recuperate. Its just really hard to do it, October, you are 100% right, its just hard mentally to not exercise. Running and biking were my stress relievers for day to day living. I'm not new to Crohn's, but I guess having just been so active and pushing myself so much harder the past year with attaining goals that I'm having a much harder time with it. Plain and simple it just sucks cancelling on everything in my life lately. I'm just trying to see what has helped others get through similar types of situations. So far I'm just hoping the Cimzia works, and works quick, i just had my second dose of it yesterday, maybe i'm of the lucky few who feels better after the second or third doses...I'm trying to keep a positive outlook as best as i can
Justin M/24 - NYC
 
Chron's diagnosed 2004, estimated 1993 via prior med records
Resection may 2008
Meds?? theres a nice long list in my wallet......just started cimzia though


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/16/2009 6:18 PM (GMT -7)   
I feel you. I left two law enforcement careers and didn 't even try fire dept because of my ibd. Originally from NYC myself I don't know how I used to get by on the subway except that my disease didn't get really bad until I moved out west.

I noticed a month or so ago that I had a sudden severe flare after a strenous hike. I pushed hard and felt great but the next day was crash and burn. Your marathon may have been a similar event for you.

As far as managing being tied to the toilet? When I was at my worst I learned to recognize the warning signs and the patterns of my disease. It isn't a 100% answer in that the Crohn's does hit the fan sometimes. lol Most of us are worst in the mornings. Even in remission. You may be able to workout in the afternoons if this applies to you. If you got to go every ten minutes then your workout will have to be in a gym where there is a toilet. I know every toilet along my route of travel. I know in the city it is not as easy. Being stuck on the belt pkwy in rush hour OMG!!!!! Make a plan and don't be there during rush hour.

Meanwhile be realistic. You may have to take it down a notch with your exertions. You may have to go to a new career. You may consider moving west like I did. One warning. There are fewer trees to hide behind here when hiking and you gotta go. Check the blue dye in my signature below. Maybe that will help you in conjunction with your meds. Your doctor will not know about the dye thing for Crohn's but should be able to tell you if it is safe. If blue gatorade is safe so should the blue dye water.
Good luck.


I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you. 


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 12/16/2009 6:35 PM (GMT -7)   
I have a hard time dealing with being inactive too :( I played competitive soccer my whole life and ran until I got sick at 18 almost two years ago. It was a huge adjustment, and now I feel pretty accomplished if I get a good walk in in a day. I'm going to try doing yoga too, I really think getting a bit of movement in my day improves how I feel and keeps me from getting sicker. I hope you find the right program for you! I'm sorry you're feeling so badly. I agree with the others... it might be worth trying some low impact exercise that you can do and be sure you're near a bathroom in case!
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone & imuran, probiotics, calcium w/d, digestive enzymes & prenatal multivitamin


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/16/2009 7:26 PM (GMT -7)   
Hi Justin,
I consider myself fairly active (i run everyday, do yoga & pilates & strength, etc) and am pretty social girl but when I have a Crohn's flare my life comes to a screeching halt.  I few times I have had to take medical leave and stay with my parents so my mom could take care of me (since I was in bed or the bath pretty much all day and night and weighed about 98 lbs).  I am on Remicade but am having a bit of a flare now, which hopefully will get sorted this week after my dr appt.
 
I am sorry you are going through this!  I actually had 2 ques for you:
 
Are your friends/family supportive of you when you get sick even though you have been very active up until then?  I guess I am asking, do you ever feel like they think you somehow bring it on or can control the symptoms? (I feel this way sometimes, hence the Q)
 
and also
 
Have you though about a less stressful career?  (I am in sales and find it very stressful and not conducive to staying relaxed but have not until recently thought about changing).
 
I have no tips to stay active; I am usually down for the count when I get sick. Once I start to feel a little better I try to sit in the sunshine and get some Vitamin D and take little walks to build up the muscles back in my legs, which are usually gone at that point.
 
 
Hope you are feeling better today!!!  :)
 

32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


youngj328
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/16/2009 9:03 PM (GMT -7)   
Hey Wednesday,

I actually have a really amazing support group. My normal friends aren't that understanding of what I deal with, but I became REALLY close with people from CCFA from the first time I was involved in Team Challenge (its a fundraising program to help find a cure for crohn's and colitis) and a lot of those people have become my family. I went to the hospital near unconscious and when I woke up I had my two closest friends with me, which was amazing. Now I am staying by my parents so I don't have to worry about the day to day hubbub of living alone. On any given day lately I've had about 10-15 calls, emails or msgs from my friends (at this point kind of more like family) at CCFA.

I am working very hard to change the stresses from work. For 4 years now I have been working the graveyard shift, which for a normal healthy person is rough. My doctors (and FDNY Health Service doctors) all told me I will never get better and it will be a slow progression towards getting even sicker on the overnights. So I am fighting with the ADA (yes, chron's is considered a disibility) against the department to get a day shift and to pay back all of my used time because the department is refusing to give me a day time shift. I am also considering taking my savings and going back to college to finish my education (it has been tough between trying to hold a full time job and being sick so often) and try a new career. I'll have to see what happens, play the cards that are dealt to me.

I am making sure i move a little bit and keep walking around (as much as i can tolerate) The last thing I want is to have any more muscle loss than absolutely neccessary...

I've got a fight a head of me on many battle grounds, I've just got to help get myself in the mind that I can do it. Which I know I can. I'm just a bit down about it all and I was looking for some extra help.

THANK YOU ALL FOR THE FEEDBACK
it really means sooo much to me
Justin M/24 - NYC
 
Chron's diagnosed 2004, estimated 1993 via prior med records
Resection may 2008
Meds?? theres a nice long list in my wallet......just started cimzia though


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/16/2009 9:27 PM (GMT -7)   
By golly you have guts (no pun intended). You just might get through this and stay ahead of the game. Give em hell. Graves is hard on the mind and body. It is good that you understand that this disease is what makes you so tired. Took me a looong time to figure that out. Blamed myself for a lot. Luck to you Justin
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you. 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/16/2009 11:34 PM (GMT -7)   
One thing that occurs to me is that your exercise might not be entirely the problem. If I recall, endurance sports advise a large carb loading before the event and after to keep the muscles fed. This could be causing a worsening of your symptoms via two or three possible scenarios. First, the carbs could be causing growth of mesenteric fat which is a characteristic of Crohn's. This kind of fat wraps around your intestines and seems to make any inflammation much worse. It uses high levels of glucose - about twice the consumption of regular subcutaneous fat, so it proliferates when there is an excess of blood sugar. For a background in mesenteric fat, see: http://www.practicalgastro.com/pdf/June06/ArsenescuArticle.pdf


Second, carb loading will result in more carbs entering your small intestine and feeding bacteria there. This is only a problem if you have reduced SI motility due to inflammation, strictures, dietary fat overload (your SI can only process about 6 - 7 grams of fat per hour) or a few other problems that affect digestion. Feeding bacteria in the small intestine results in inflammation and pain and either diarrhea or constipation as well as fatigue and "brain fog".

You might want to try a low glycemic index diet for a while to see if this is a factor for you.
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