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Missing the outdoors, walking

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Ulcerative Colitis
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Posted 9/20/2009 7:14 PM (GMT 0)
I'm a nature-loving person and I am trying so hard to stay positive on beautiful fall days like today. I just tried to take a real walk with my dog (ie, not just around the corner) and couldn't get more than 10 minutes out before I had to sit on the ground to avoid an accident, then rush home in a panic that I wouldn't make it. It's going to get better, right? Any other outdoorsy people out there who are better and can go for real walks now? Hikes? In 2007 and 2008, I did two 60-mile fundraising walks with my UC flaring. I just kept focusing as hard as I could between porta-potties and Starbucks bathrooms. I could actually make it about a half-hour to an hour between bloody diarrhea stops, even though I felt like death warmed over. A year later, I can't even walk 10 minutes. I think I am starting to get really depressed.
Posted 9/21/2009 12:34 AM (GMT 0)
retnomrev,

I understand where you are coming from - I have been there myself.

After reading your story, I want you to know I saw that you have been able to go out and deal with UC Flaring before. I believe in your past and what you were able to do before (60-mile walks) - and that is why I believe in your future and what you can do.

The one thing I have noticed with this disease is that it has a strong correlation with your attitude. Just as when you eat a piece of chocolate or have a big jolt of caffeine - which results in a sudden rush to go to the restroom - similarly, when something happens to you that sets off a negative reaction (worry, fear, doubt, anger), you may react to your nerves by running to the bathroom to relieve yourself.

I would advise that you practice being really positive. Sure you have a difficult disease, but that does not mean it should prevent YOU from being YOU. Imagine yourself being really really healthy, being really really wealthy, having a really really good social life. Close your eyes and try to imagine these things and when you open your eyes you will have seen a glimpse of what happiness and joy can really feel like.

You are not too far from being healthy and feeling better - and if you practice having a positive outlook even when little things happen you may notice that you are handle different situations in life easier or more appropriately.

Good luck to you !
Posted 9/21/2009 12:55 AM (GMT 0)
I love the outdoors and because I am having trouble with flaring, miss my walks/nature/etc. My way of not missing outdoors is to go to a little park that takes me 10-15 minutes to walk around. I do that once in the morning and once at night or I ride my bike around the neighborhood a bit.
Posted 9/21/2009 12:56 AM (GMT 0)
Retno -
I would suggest starting with little walks, little outdoor activities, and working up. I've been there, too, but have been able to take up horseback riding, singing in recitals, and lots of fun, "normal" (for me) activities since my diagnosis.
This is indeed a frustrating disease and because we all seem to respond to different approaches, there is no cookie-cutter template for us to follow to achieve remission. I hope your new Dr. is helpful.
Have you tried non-prescription things, probiotics, omega 3 oils, bee propolis, slippery elm, etc....? I have found that even making the decision to try something on my own makes me feel "in control" and seems to help with my frequency/urgency (probably the IBS aspect of it.)
Posted 9/21/2009 2:21 AM (GMT 0)

Oh, I can feel your frustration!  I had the same problem, an avid hiker who had hiking taken away by UC.  I opted for surgery after 2 years of not feeling as if I had a quality of life.  Since my jpouch surgery I have done 5 hikes between 100-200 miles each, both in the California Sierra Nevadas and in Europe.  I have had my life back these past 8 years since surgery and no longer have to worry about when and where I can hike, life is predictable.

Sue

Posted 9/21/2009 2:39 PM (GMT 0)

BobbyC - I would love to manage my UC without medications.  Looks like you are doing ok.  Do you follow a special diet, etc.?

My fear that without any medication my proctitis becomes pancolitis, etc. and I will have to have surgery.  One could get seriously ill without medication to at least control the UC.  What about cancer - makes the risk higher!

Attitude does help for sure!!

ElaineNY

Posted 9/21/2009 4:03 PM (GMT 0)

Hi BobbyC and all, thanks so much for your posts. This forum is a Godsend:)

Posted 9/21/2009 5:48 PM (GMT 0)
I just joined this forum too and any for potential activity outside the house I end up going through a mind process of "can I ?" leave the house?

Mornings are the hardest since that is when I have the most BM activity. I used to walk the dog every morning - now I barely do....2 months ago, it was not an issue. I am blessed to have a job that is based out of my home.

It is so frustrating to constantly have to think about this stuff.
Posted 9/22/2009 7:11 AM (GMT 0)
I understand your frustration. I was in the same place years ago (I used to love running, but became so anemic I couldn't even walk up the stairs ... even if I could run I would have needed to take TP for anything over 10 minutes). Prednisone basically did nothing, asacol pills/enemas was useless, and some other drug did nothing either (I was so delirious from blood loss at the time that I don't even know what they gave me).

I gave up and swore off docs. My solution was diet. Cut out almost all carbs (no fruit, sauces, grains, etc ... rarely even nuts). Basically hardcore Atkins - LOTS of salad, olive oil, and lean meats. It worked REALLY well, went from bedridden to feeling myself in ~1 month, then had no issues for 5 years.

After 5 years I decided to get a follow-up Colonoscopy and the doctor requested I start eating normally before the scope. Big mistake. Within a few days symptoms started, and got progressively worse. The Colonoscopy was far better than 5 years ago, but still showed some new inflammation/ulceration throughout my entire colon. I told him I'd try drugs again for 6 months, which was ~5 months ago. They seem to be doing very little, so next month I go back to my tried-and-true diet.

My doc thinks I'm crazy and that the diet has no relationship to my symptoms, but I'm not going to stick with what works.
Posted 9/22/2009 4:08 PM (GMT 0)

I too watch my diet....but I also take meds to make sure I stay in remission. I always think it's best to do what's right for you, but I'm not sure that giving up the meds and swearing off docs is the best way to go. I'm also into exercising and keeping fit, watching what I eat (especially anything with high fructose corn syrup added) and just in general trying to feel well. But a gentle reminder, I've done this with years of tweaking my diet to fit my needs and also working hand in hand with my GI to find the right med that works for me.

LuckyLindy, let us know how your colonoscopy goes; good luck with that!

Posted 9/22/2009 5:32 PM (GMT 0)
I started running 6 years ago (freshman in high school) and had been up till March of 2009, which is when I was diagnosed with UC. I was running for my colleges track team and my coach told me I couldn't run anymore once he heard I was "sick" my Dr. pretty much agreed with that until I was "better". So I can completely agree with wanted to be out doors. It has been a long time since I have been 'out of shape' and it is so hard for me to deal with it. I am on lialda now and was on steroids for two months till a month ago. Ever since taking those have been much better. I also do canasda once a week, when I did it everyday it made a HUGE difference on my urgency. I have finally started working out again with weights and trying to get in a walk every now and then. I tried running a few weeks ago and was so wiped out the next day i'm too afraid to try again. Being a college student I cant afford to be more exhausted then I already am. (good thing my major is demanding so i don't try to party, which would pretty much kill my tummy even if i tried!!) It took a while to slowly get back into my old habits and i'm still not totally there yet. But you will soon be able to walk two times around the block without having to think about the closes place to go potty. Keeping a stash of depends isn't a bad thing either, just encase you do have a problem on a walk you aren't as prone to more embarrassment then you probably already feel, and this is a tip from a 20 year old who is at the age were looking good is important and pride is everything.

20 year old female, slowly going into remission.
Posted 9/23/2009 3:02 PM (GMT 0)
BobbyC has the right idea, get your mind into a good place and you'll feel it physically, it will just take a little time to rebuild your confidence and feel more in control of yourself - maybe start with a diary to figure out when your "best" time of day is. Like me, I can't go anywhere in the morning, forget it, just NOT happening. But by the midafternoon I'm not so bad and a short walk is doable provided I prepare a little. Like, if I want my walks to be on Mondays and Wednesdays, then those are the days where I should eat a little more cautiously etc. and then you just go from there.

The goal is to eventually begin feeling more comfortable with a new routine and more importantly, since you've been gauging your good time of day vs. bad time of day, you begin to notice that you're regaining control over yourself and your health you know? That helps you feel more confident and not so downtrodden, which means less wonky nerve action!

I'm currently trying to reacquaint myself with my personal happy place after a year of being stubbornly depressed about EVERYTHING and my main goal is to get myself outside and in the sunshine so here's hoping we can both do it, for the love of fun in the sun darn it!
Posted 9/23/2009 3:33 PM (GMT 0)
I learned to give myself peace about the things I could not comfortably do while flaring, and be grateful that this "disability" still allows me to do a lot. I still have many good adventures, just different ones that accommodate my needs and don't put me in any more situations that make me uncomfortable more than absolutely necessary.
Posted 9/23/2009 10:48 PM (GMT 0)

It is true that we have to adjust our lives at times according to what we are able/capable of doing.  I have been on both sides of that coin.  A couple years ago my husband was doing treatments for lung cancer.  When he had the radiation and chemotherapy we had to have our "fun" (as little as going for a short walk) around how he felt from the therapy and when it was.  It is also very hard on the person who has to accommodate the other.  If you don't have anyone depending on you, etc. it must be easier.

Now it is me who can't do anything in the morning.  I ask my husband (who is a "morning" person to not make appointments in the morning whenever possible.  He goes to the VA and sometimes does not have a choice.  He can go alone to most of them but he likes to go along - it is 30 miles.  Then the plumber called to fix a toilet and of course he said come about 9 a.m.  I try not to get mad, etc. but know he just does not understand!!  Do the best you can - learn when is good time to do things and when you just can't.  Those around you may never understand but truly your happiness is the most important!!

ElaineNY

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