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New Meds, new side effects...my story because I can't sleep and a bit depressed

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Ulcerative Colitis
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Posted 4/17/2013 7:42 AM (GMT 0)
Hi,

I am new here, but only semi new to forums on Colitis. I recently had a colonoscopy (about a week ago) which found that my Proctitis diagnosis in 2010, was being upgraded to Left Side Colitis (was 4-6 cm of the colon now at 40-50...) all of which seemed like a lot to me. I had a crappy GI doc the first go around, was on Canasa 1000mg when I was first diagnosed. Did horribly on them, had flu like symptoms on a weekly basis and couldn't stay on them, my doc said it wasn't them causing it. I stopped all drug therapy and stopped seeing my doc too. Somehow I hit remission a year later and stayed that way till Jan of this year. Started having severe pain in left side of abdomen and major blood in bowel movements. I now take iron 3 times daily, hydrocortisone enemas 100mg once at night and Delzicol (mesamelimine) 800mg three times daily.

I read that insomnia can be a side effect of the hydrocortisone, but seemed rare. What I've noticed is I used to sleep just fine (go to bed around 10pm and get up for work at 6am) is a marked start of when I first took the med I can't sleep till about 4am (still get in bed at 10pm, just not sleepy) and wake at 6am for work and too tired to go, so I call in. Been this way daily for 1.5 weeks now. Feel shaky too like I'm dehydrated and in the morning I feel hung over (nauseous and dizzy, real dizzy). I've had no problems with retention which is good. I am now applying for FMLA b/c I can't seem to get enough sleep and feel so stressed out and a bit moody. Just think its best I guess. Probably best for me to get well, though I felt like my symptoms weren't too bad, lack of sleep is making it horrible. And jsut the stress of taking all my meds at the right time, (iron on empty stomach, rest with food)... Its just a lot. Somestimes I forget that its okay to feel sad b/c we do have a serious illness and with that comes issues in life and breaks (I feel bad for calling in all the time especially when I feel okay, just b/c I couldn't sleep). Anyone have any thoughts or experiences they can share to make me feel not so alone in my thoughts?
Posted 4/17/2013 8:39 AM (GMT 0)
All I have done is call in lately. I have left sided UC as well. I recently developed a new symptom of searing pain on my left side about waist high. It makes me exhausted. Other people at work are like I had x problem and I came to work and didn't go to the hospital for a week. Which made me feel bad. But we can never understand someone else health condition and what they go through. If you can't make it to work then you can't. It doesn't matter why.
Posted 4/17/2013 1:27 PM (GMT 0)
was on Canasa 1000mg when I was first diagnosed. Did horribly on them, had flu like symptoms on a weekly basis and couldn't stay on them...

I was prescribed Colazal, a mesalamine med, when first diagnosed and experienced wheezing and flu-like symptoms. I immediately stopped taking it. Then I thought it must have been a coincidence to get the flu just as I started mesalamines. So I started again and experienced even worse wheezing and flu. I had never experienced wheezing before, but like your doctor, my doctor said the meds had nothing to do with it. But there is no doubt in my mind that mesalamines don't work with me.

I am not an expert on meds so I cannot advise alternatives to mesalamines that might help you. There are many here who can advise you on that. Rectal meds get rave reviews.

I am one of the lucky ones to be able to manage and control my disease with diet modification and supplements. If you decide to monitor your diet then all I can say is that everyone is different and what is nourishing for one person can be poison for another. But gluten and dairy are the major suspects.

Key supplements for me are psyllium seed and probiotics. But you need to find your own path. I would check out our signatures to see the wide diversity of meds and lifestyle changes that each of us use to manage this darn disease.
Posted 4/17/2013 2:10 PM (GMT 0)
Yeah, I have seen so many meds in sigs. Crazy. I do believe it can be managed by diet (my sister has Crohns) and has managed well by diet (meds assist in getting into remission and she manages from there w/o meds). She uses a macrobiotic diet, which does work well for me - just only started it after the flare though so waiting for that remission to see if I can really maintain it. Sucks though b/c it seems diary while flaring is the food I crave and digest the easiest, yet, what we can't seem to tolerate is high fiber, but that is what (some docs) think can cause it in the first place (lack of fiber in diets and sensitive systems) so its said that if we can train our bodies to digest the fibers and tolerate them slowly and surely it will improve. So the "fix" is actually what makes us feel the worst according to some.

Sadly, I fell asleep about an hour ago, now wide awake. I am having pain in my lower left back rib area and can't understand it - never had pain there before and suddenly its like intense and I can't lay on my side to sleep and all I want to do it put pressure on it - anyone have this?
Posted 5/9/2013 9:32 PM (GMT 0)
Hi bluefrog,
I wud say the insomnia is from the cortosteroid a d posdibly tge drpresdion also. Hang in there, maybe look at discudding other options so u can function.
Posted 5/10/2013 12:55 AM (GMT 0)
I tried hydrocortisone suppositories for hemorrhoids. I got real wired from them so that was enough of that unless they got really severe.
Posted 5/10/2013 2:53 AM (GMT 0)
Yeah, pred can definitely cause insomnia. Real bad in some cases. Are you doing any diet modification? That one is iffy. Either one works, or doesn't.

I had similar back pain when I first flared. I found sleeping on the couch, leaning up against the back and putting a pillow behind me would ease a bit of pain. Not sure if it would help you, though.
Posted 5/10/2013 9:18 PM (GMT 0)
You could be dehydrated, which causes dizziness. Be sure to drink plenty of plain water throughout the day while on UC meds. What is your doctor's strategy for getting off the steroid enemas? While they're not as potent as Pred, one shouldn't stay on them indefinitely as their effect becomes systemic with extended use. It's wise to apply for medical leave from work because, in my experience, having a longer time to rest helps the meds to reduce inflammation more effectively. Don't feel guilty about it; take good care of yourself. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/11/2013 12:50 PM (GMT 0)
bluefrog,

Welcome to the forum.

If you had flu-like symptoms from the prior use of mesalamines - which means intolerance to them (and it's not a big surprise that the doc won't see it as such), you say you are now on mesalamines again - my question to you is:  how are you tolerating them now?

Also, I'm not sure you are aware that deficient vitamin d3 levels are highly correlated to both: IBD and depression.

When were your levels checked last?

And what were they at?

Have you tried any diet modification?

Are you on any probiotics?

If you are interested in adding some simple things which can give you big bang for your buck IMO of course,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

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