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So tired all the time! Sick of feeling sick.

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Ulcerative Colitis
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Posted 10/9/2007 5:04 PM (GMT -6)

I have been wiped out for the past month or so. My GI thinks it has to do mostly with am extremely stressful family situation. I AM going through some extreme stresses, but I always thought I handled stress fairly well. I know if I felt better I'd be dealing with it better. I can barely make it through my work day and I have had to cut back on my work somewhat. Since I am self-employed, and a good part of my stress is caused by a rather enourmous expense for my daughter's care that I am fighting my insurance company -- well, I think if I had more energy and could work back at the level I had been, well, that would help a great deal with the $$ and the stress.

I am just really sick of feeling unwell all the time. I feel like I've aged quite a lot in the year and half since my diganosis. I know working out would make me feel better but I just can't make it through a work out. I haven't been to the gym in months although I am still keeping my membership (it's not terribly expensive). I really want to get back into the routine.

In the past few weeks I've lost more than 10 pounds. Mostly of that was weight I gained on the Prednisone, but now I am below what I weighed when I was diagnosed. Still a healthful weight, but I have no appetite and since eating makes me feel more unwell, I tend to eat very little each day, and not what you'd call balanced. I try to have at least an Ensure, but the taste is so disgusting it's hard. I have always been a person with a big appetite and more of a "live to eat" than an "eat to live" type, l so this is unusual for me as well.

I am on Lialda now, although I felt this way while I was on Colazal. Not sure if that's what's doing it. My last Remicade infusion only lasted four weeks before symptoms started to recur, but my GI wants me to wait til the eighth week, that will be this Saturday. I hope it does the trick, and I sure hope it lasts longer this time.

My husband is picking up the slack around the house, walking all our (or rather "my" dogs) and feeding them and being very helpful. Basically all I have to do is my job, but a few times a week I need to drive out to where my daughter is for visiting and therapy ... it's a 100 miles round trip (but at least a pleasant drive).

I guess I was wondering how others are dealing with this long-term fatigue, what is causing it and can I expect it to lift at some point? Will I feel good again?

Meesh

Posted 10/10/2007 8:01 AM (GMT -6)
Hang in there... it does get better. It took me over a year from my original diagnosis to really get on the upswing. I used the time I was sick and housebound to educate myself, reading anything I could get my hands on about digestive health and various approaches to managing UC. Through trial and error, you'll find the combination of meds, natural supplements and dietary changes that work best for you.

In the meantime, have you had your blood levels checked to see if you're anemic? That can really contribute to fatigue. If there's a problem, you can receive iron infusions via I.V. I also got B12 shots, which helped with energy levels. You may also want to check out Absorb Plus enteral shakes as a way to get the nutrients you need, while still allowing your bowel to rest. They're formulated specifically for IBDers and are a healthier alternative to Ensure. http://www.holistichealthshoppe.com/#6

Getting plenty of rest is important, but as you mentioned, gentle exercise is equally important - particularly if you're on pred to combat the bone-thinning effects. Just a short walk in the fresh air is better than nothing. Even when I was very ill, I walked the neighborhood and did some light weight training with a set of dumbbells and DVDs in my home. Yoga or meditation can go a long way toward helping you destress and feel better able to handle whatever's going on in your life.
Posted 10/10/2007 9:11 AM (GMT -6)
I'm sorry Meesh that you've been feeling so poorly. Your story is similiar to mine in the aspect of sick and tired of being sick and tired! In my last flare, I was ready to throw in the towel and demand surgery. Luckily 6mp put me in remission or I might be without a colon now (which would not be a bad thing really). I hope the Remi will put you in remission and you can get your energy back. A few other things to try and raise your energy, I know it's hard to do much right now, but when you are sitting - put some weighted belts on your legs and just do simple leg raises. The same for you arms. It's not much but any sort of excersize will increase stamina.

I agree that maybe you should have your B levels checked. I sometimes take B12 supplements in those run down times and it truly does help.
Posted 10/10/2007 9:23 AM (GMT -6)

I was feeling this way as well.  You know physical therapy really changed my life and is giving me more energy.  I had my doctor refer me and I got approved through Medicare for 6 months of therapy.  You might want to try that as well.  I am sorry you have a lot on your plate right now.  Try to take some time for you.

All the best to you and love to all here

bob 

Posted 10/10/2007 3:42 PM (GMT -6)
I'm sorry, Meesh... I wish I could be of help, I truly know how you are feeling. I am basically just trying to keep it together, physically, until my surgery in November. I decided I will not take it anymore, just feeling so horrible. And part of what makes it so bad is that you don't know if it's the meds causing it or the UC. My "diet" lately, if you can even call it that, is just like yours- a bunch of Ensures & maybe some crackers & such. I've lost tons of weight in the past 2 years, about 30 pounds & cannot wait to start EATING without fear again... my doctor assures me after surgery I'll be able to put on weight, he tells me I'll feel like a new, entirely different person. I believe him! I don't know what to tell you- just that I know how you feel, it sucks terribly, & I'm hoping it passes one way or another. :-)
Posted 10/10/2007 5:43 PM (GMT -6)
Thanks for the sympathy, it helps, believe it or not. I am seeing my GI Monday and was thinking about asking about B12 shots, so I guess I will definitely ask about that. I have had blood work done and while I am low in potassium all else is okay.

For awhile there, even though I wasn't able to work out, I was walking my dogs. Now I can't because of getting too far from a bathroom. Mostly I have lots of urges, but when I get there, except for the morning it's mostly just a "bloody fart" (yeah, something I can only mention here!).

This past weekend I had to stay at home while my husband and Dad went on a steam train ride to see foliage -- I couldn't bear the thought of the three hour drive to the train. "Luckily" my Mom was having an arthritic flare up so she couldn't bear the idea of the ride either and we stayed home. But I seldom see my folks so it kind of bit that we couldn't all be together that day.

Tonight my husband is off to a Nar-Anon meeting without me as I am just feeling to ill to sit there for an hour. On the good side, for some reason I didn't feel as bad as I usually do in the morning and work went better for me today. I guess if I have to feel crappy later in the day is better.

Meesh
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