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Discussion:
What do you mean by "remission"?
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I have heard the word "remission" thrown around, but I'm not sure what you mean by remission of UC.

I actually had a couple of days when I didn't see blood. My 1st thought was,"wow, maybe I'll dodge the bullett!" Not the case.

According to the GI, I have mild to moderate UC, but I have all the
other miserable symptoms. Today I had a really scary event. I drove to church, felt fine & dandy. It's a LONG drive. I dozed at the wheel com-ing back because I was suddenly overcome with a sense of exhuastion. I hit a curb. I didn't get hurt, I'm not sure if I did any damage to my car. I'll find out when I take it to the dealership. Now I'm terrified to drive.

I get really depressed (which is extroadinary for me, I'm not a de-pressed person), I get literally overcome with exhaustion, I wake up like clock work about 3 or 4 almost every mosrning & I'm on full alert. I can not fall asleep again. I think that may be from the meds I'm on. I feel a little achy (it seems to have exacerbated the arthritis I have). In short, I'm not feeling "normal".

Is the part of UC? Jeez, I hope I'm not getting fibromyalgia on top of this. That's an autoimmune thing too. I hate this. I feel like I have no control over my life. Today my husband said "you may need to see a counselor/therapist". I about fainted. I know I get depressed, but I don't think a therapist is gonna help me with this.

Do the meds tend to cause depression? Would all the ancilliary stuff
go away if I stopped using the meds? I'm watching my diet really
carefully. Mostly, there is always blood in the stools, like 99.9% of
the time, but I'm not losing massive amounts. I'm not losing weight.

I'm beside myself with this stuff. I just don't know what to do & the doctor is useless. The only thing my GI tells me to do is "eat rice!" Food is not my most pressing problem at this point. I just want my life back & I don't know how to do that. It's depressing. I really hate it when some one asks me how I feel. I don't want to tell them the truth because really, they don't want to hear it. I try to stay upbeat & positive, no matter HOW I'm really feeling.

Right now I'm on Sulfasaliside. Ive tried Balsalazide, Lialdia, Asacol, Asacol HD. The reason I'm only on Sulfasalizine is because I fell into the Medicare donut hole & couldn't afford Asacol. I don't get diarrhea, I'm constipated. The constipation is improving as I keep tweaking the diet. I can live with it. I can't live with the other crap that's going on.

Can any answer any of these questions? I understand that you can not
give a medical opinion since most of you (maybe all of you) are not
licensed MDs.

Tell me I'm not crazy, please.

- ann
Posted on 10/21/12, 07:06 pm
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Reminder: This is a support group for Crohn's Disease & Ulcerative Colitis. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Comment:
Email me when others reply to this topic help
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Reply #1 - 10/21/12  7:49pm
" there was a period of almost two years where i was practically symptom-free and was considered by my dr. to be in remission. there were also shorter periods of a few months at a time where i may have been losing blood but didn't feel sick necessarily. i'm not sure if that would be considered remission, but i also wasn't flaring?... "
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Reply #2 - 10/22/12  8:04am
" You're not crazy Ann! I can completely relate to your posting. I think depression goes hand in hand with crohns. I fought it for years, but recently I started an antidepressant and I feel much better. I'm able to concentrate on fighting the crohns now.

As far as remission, I think it's just when you're not flaring but not sure about that. Even when you are in remission you still have to watch your diet very closely to keep from getting a flare.

Hope you're feeling better soon.
Kitty "
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Reply #3 - 10/22/12  9:21am
" Remission is when your disease is not longer active, ie no inflammation, no bleeding, blood counts normal, you feel good, etc.

I have UC, and while I had diarrhea for the most part, in my early diagnosis, now I pretty much have constipation, even when my disease isn't in remission.

UC can cause joint pain when you're in a flare up. It's part of the inflammation.

What you're describing about waking up and being on full alert sounds like anxiety. The disease can cause depression and anxiety. You might want to talk to your doctor about that.

I think your husband is not out of line at all. Our partners are a mirror. He is seeing what this is doing to you, where you may not be objective enough to see it. Many people who have Crohns or UC have sought counseling, which can be really helpful.

Deep breath. Try to relax. Seriously, lack of sleep, stress, anxiety does you no favors when you have this disease. You have to manage that just as you would the physical part of the disease. "
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Reply #4 - 10/22/12  9:42am
" How come you don't want to see a therapist? I've been seeing one for about a year and I think the combination of medication and therapy has really helped for me. It's also important to find the right therapist for YOU.

I also have UC and Fibromyalgia, and now apparently arthritis, too. I know these diseases can really get to you and just kind of take over who you are.. I encourage you to find a therapist! Maybe also find a new GI? Sounds like he/she is not listening to you and that is so important.

Hang in there!! "
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Reply #5 - 10/22/12  10:22am
" Hi Ann,Thanx for the post I relate very heavily to most everything you said. Yes a symptom of UC is definitely cronic fatigue. Reply #3 is spot on about remission. I consider having gotten help for mental and spiritual issues to be key components of my living day to day with U.C. While the pychiatrist and prozac have definitely helped I think my anchor has been Jesus Christ. I was so depressed I thought about suicide for a while. Because of Jesus I ultimately just couldn't do something like that. As far as asacol is concerned, my 37yr.old daughter uses that and has been in remission for 11yrs. The drug company often has an assistance program for those people in your position. My GI helped me get assistance with all of the medications I tried. If You are crazy, then all of us are.mm "
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Reply #6 - 10/22/12  10:47am
" " If You are crazy, then all of us are." You got that right! "
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Reply #7 - 10/24/12  6:39pm
" Hello Ann,
I can totally understand what you are saying and going through. Youre body went through a lot and it is tired. It will get better though. I was diagnosed last year and this whole year my body went through so many different changes or "stages". at first I was just scared with everything the doctors were telling me and me and my family didnt know anyone that had Chrons or UC so I was pretty much left to find answers by myself. I felt so tired all the time. I use to play sports and had 2 jobs so when I would get exhausted walking from the kitchen to my room it frusterated me. While in the hopsital I lost 20 pounds and a lot of muscles mass. I was so weak part of it was vitamin B12 deficiency. Along with all my meds for UC I was also on a high dose of vitamins iron, and calcium. anyway... once I got that under control I felt like I had more energy. I also noticed that at times I would feel very whinney or emotional almost like if I was PMSing when I was dehidrated. Its weird but I noticed the connection. Once I felt like that I would force myself to drink more water and it would knock me back to "normal". I think the meds have a lot to do with it. I stopped taking some of my meds and tried to go the "natural" way and it seems to work for me. I know we all have different levels of this disease and our bodys are different but just stay strong mentaly and your body will follow. "
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Reply #8 - 10/25/12  12:00am
" Hi Ann,

You are definitely not crazy! I don't have anything unique to add to the prior comments, but I very much understand where you're coming from, especially the emotional part. I've had a really hard time with depression this year and almost reached a breaking point until just within the last few weeks when it became a unanimous decision by my doctors that I need to have surgery (I have always been on the moderate to severe side of the disease).

As tough as it is to hear someone you love say you should go see a counselor (you feel like you're burdening them and being a general pain--yes, I know that feeling well!), I think it's an enormous help. There are counselors that specialize in chronic disease and can help break the pattern of negative thinking that this disease really doesn't let you get away from. I just moved and need to find a new counselor myself for this very reason.

Just know also that you can always vent here even if you have to hide it sometimes in public. I hope you start feeling better very soon! "
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Reply #9 - 10/25/12  9:09am
" Ann,
I was diagnosed a little over a year ago with UC and I too have not felt like myself. You are not crazy! Sometimes I think its my body catching up from being sick or just the reality of my new 'sick' life but I am always tired and fatigued. I was waking up in the middle of the night too, with terrible nightmares (I think a side effect of my 6mp) so my Dr. prescribed me ambien which is helping a lot, maybe something to look into.

I also feel crazy sometimes, well, more often than not. I just can't cope with everything on top of being sick and feeling off all the time. I have recently been crying a lot because my body just won't seem to bounce back. A year ago I was a healthy and happy 21 year old and now I am a sick, unhappy 22 year old. I wish there was something I could do to get my life back but I also haven't found a way.

I just started the Specific Carb Diet, my mom is sure that this will fix me. Fingers crossed.

How has everyone else bounced back? I don't have symptoms I just feel tired and lethargic, I hope this is not what remission is like!

Ramie "

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