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I'm not recovering from my last flare

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Ulcerative Colitis
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Posted 5/19/2014 10:27 AM (GMT 0)
I'm in remission for a year now thanks to Uceris and Imuran. However, I still feel tired and weak every day. I still didn't gain the weight back I wanted to gain (I was 130 with pred and now I dropped to 123 lbs).

I have a B12 and Vitamin D deficiency and I'm taking supplements for that. But I'm still not getting stronger although I stopped bleeding and losing fluids.

I do fight with nausea once in a while but it has gotten a lot better since the beginning. I'm still a bad eater though. I have a hard time choosing which foods are good for me and which give me energy and I can't find anything.

I'm in bed all day, even on the weekends. I'm tired of being tired and I want to have energy. Sometimes I'm even too weak to get out of bed and to eat. It's a vicious cycle. What can I do?
Posted 5/19/2014 10:54 AM (GMT 0)
sorry A :-( sucks that you are in remission but still feel crappy !

I don't have any suggestions other than eat as much as you can of the foods that don't bother you - like Joanna said on another thread, your body needs fuel to thrive -

hope things get better soon !
Posted 5/19/2014 1:43 PM (GMT 0)
I'm so sorry!

Is there any chance that the tiredness is due to depression?
Posted 5/19/2014 2:39 PM (GMT 0)
Possible. I am quite depressed and Zoloft doesn't help.
Posted 5/19/2014 2:47 PM (GMT 0)
Did your GP Rx the Zoloft, or did a psych? Maybe it'd be worth seeing a psych and trying a different antidepressant.

A friend of mine mentioned she recently had some testing done that helped determine which antidepressants (or maybe it was anti-anxiety meds) would and would not work for her. Apparently, all of the ones she's been on in the past were found to not be effective for her. So now she's on one that showed it would be effective, based on the test results, and she said she's feeling much, much better.

Would you like me to ask for more details about it, and report back to you?
Posted 5/19/2014 3:03 PM (GMT 0)
Yes you can do that. I have made my email address visible in my profile. My other one got hacked.

I thought it was only because my body is weak. I have weak bones now due to osteoporosis and I feel as if I literally can't get up. I'm always on very low energy too. It's just so frustrating. I remember when I got in remission with Remicade it took me about a year to recover. But this time I'm not getting better.

Yes Zoloft was prescribed through my GP. I really don't want to take it anymore but I'm still being depressed and it really doesn't help to brighten my mood.
Posted 5/19/2014 6:27 PM (GMT 0)
andrea, how is your current flare? did you get it under control? maybe that is what's causing you problems.
Posted 5/19/2014 6:55 PM (GMT 0)
I see you are on 150 mg of azathioprine.

I was on 150 mg of Imuran for around a year and had similar developments. On a scale from 1 to 10, I'd say the fatigue level was at a 9 and I was barely functional. At some point, I decided it wasn't worth it and took myself off of it. Perhaps you should discuss with your GI about this matter.

Best.
Posted 5/19/2014 7:00 PM (GMT 0)
That's the problem with immunemodulators and biologics. There are trade offs. In the beginning you sign your soul over the devil to do anything to get better. Once better and these trade offs are presenting themselves you start wondering if it is really worth it. Side effects on these meds are much, much more than just a small increase in cancer risks.
Posted 5/19/2014 8:33 PM (GMT 0)
From my experience Zoloft was an energy killer for me. All I wanted to do is sleep sleep... I took it for anxiety but it got me tired and depressed. Once, it got if it I was so much better.

There are other anti-depressant out there that actually will help you and won't get you tired.

Definitely If I were you I'd talk to my Dr. about how I fell.
Posted 5/20/2014 8:47 AM (GMT 0)
Joanna, my mini flare is better. I have used some enemas.

I decided to drop Zoloft. I don't want to drop the Imuran because I hope that I can find something to boost my energy. It's just not worth having a bleeding and ulcerated colon.

Guardian, how do you maintain your flare? I have been through all these drugs available and Imuran is my last straw.
Posted 5/20/2014 2:13 PM (GMT 0)

Andrina said...
I'm in bed all day, even on the weekends. I'm tired of being tired and I want to have energy. Sometimes I'm even too weak to get out of bed and to eat. It's a vicious cycle. What can I do?

Guzzle stimulants all day like me ? 60 hours billed last week on the job. It was a slow week :)

Cardio Ignite gets me going.

Try eating organic pure Maca root, I started it tastes good and is loaded with Vitamins essential aminos and adaptogens - they say it restores energy.
Posted 5/20/2014 3:03 PM (GMT 0)

Andrina said...
Joanna, my mini flare is better. I have used some enemas.

I decided to drop Zoloft. I don't want to drop the Imuran because I hope that I can find something to boost my energy. It's just not worth having a bleeding and ulcerated colon.

Guardian, how do you maintain your flare? I have been through all these drugs available and Imuran is my last straw.

I was also concurrently taking pred and mesalamines during the period, and realized the pred initiated the remission and the mesalamine maintained it. In my particular case, it turned out I never needed the imuran and I was able to quit cold turkey without any problems. The doc just used it as in insurance policy because I had a pretty terrible pancolitis diagnosis so I don't blame him much anymore.

I don't know what else to say about your case. If you have given western medicine a fair shot, I think it's time to migrate to the other side and give alternative medicine a shot. That is what helped me.
Posted 5/20/2014 7:29 PM (GMT 0)
Have you tried Bupropion (Wellbutrin) instead of Zoloft? It is a more energizing antidepressant. Higher amounts of iron could help boost energy. High protein meal replacement shakes can help with weight gain.

Also while it may sound kind of radical have you considered medical marijuana for treating appetite suppression and nausea? It is prescribed for in 20 states and the District of Columbia in part to deal with those kinds of side effects from chronic illness or various medications.
Posted 5/20/2014 8:21 PM (GMT 0)
Michael -

I tried this going this route last year, but it is impossible to get a medical marijuana license in DC and many other places. She would have to check the guidelines for her state. The guidelines in DC approve it for 5 listed conditions. It's a joke to be quite honest and makes you wonder whose pockets the politicians are lining. The dying and suffering absolutely do not have a voice here, and I know some sick folks have traveled across the country to obtain it.

But I guess she is on azathioprine, which could technically qualify as chemotherapy (as that is chemo drug), but it would be a long sell.

From the PDF:

At this time, legislation and regulations allow for the recommendation of medical marijuana for the following:

Qualifying medical conditions:
Any of the following:
Human Immunodeficiency Virus (HIV)
Acquired Immune Deficiency Syndrome (AIDS)
Glaucoma
Conditions characterized by severe and persistent muscle spasms, such as multiple sclerosis
Cancer

Qualifying medical treatments:
Any of the following:
Chemotherapy
Use of azidothymidine or protease inhibitors
Radiotherapy
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