Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

710 Members
7,267 Posts
0 Online
Gastrointestinal System
/ Crohn's Disease & Ulcerative Colitis Support Group

I shouldn't be feeling this bad..?

DreamsOfFerrets
DreamsOfFerrets
Hi everyone, I was wondering if I could get your opinions. I'm seeing my new GI doctor tomorrow in any case, but would like a sounding board.

I've been flaring with greater and lesser severity for the last 3 years. This past spike has lasted about three weeks with bloody stool and bowel movements that are only mucus and blood. They are small, and the blood is always coating everything, but not free-flowing. Cramping is minimal, but I'm not at all hungry a lot of the time.

The symptoms that worry me the most are extreme muscle weakness and fatigue. It is physically hard to get out of bed to go to the bathroom. I do not get dizzy, persay, I just feel really slow and mentally out of it. When I get these weak spells my temperature goes down by a couple of degrees (96 Fahrenheit) and I sleep up to 20 hours a day. My only guess is that I might be running low on some electrolyte or iron, but every time I've felt this way in the past the doctors have done blood draws that indicate nothing is especially low.

What gives? Is this a UC symptom? Is there anything I can do about it? I'm missing a lot of work and I'm scared I'm going to lose my job at this point... :(
rmb
rmb
I think having any kind of autoimmune disease or chronic illness can lead to all kinds of fatigue and weekness, but for sure it's part of UC and could be from dehydration and low blood counts.

Talk to your GI about your concerns. If it is iron related, there are things they can do, like iron infusions. Sometimes even non severe anemia can affect some people. But really, until your disease is better controlled, I think this is just kind of par for the course.
tiredoldgal
tiredoldgal
I am not sure how to put this. I get this way sometimes during a flare. I ache, I'm tired, and just feel drained. However, I tend not to eat and over the years I have come to the realization that, for me, it has a lot to do with the fact there is nothing in the gut to process and the body is empty. I don't feel hungry but in my subconscious it's "if I don't eat I won't poop" thing. I think it takes a little while to show up in blood work as I am not completely run down yet. I think it's a nutritional thing partly.

As I said this is just me. I hope for the best for you.
rmb
rmb
tiredoldgal, that makes complete sense. It may be a nutritional thing. Not eating, or even not eating properly affect you that way. Even when you do eat, if your body isn't absorbing things properly, which happens with IBD, you're not getting what you need to maintain energy, focus, etc.
Levi219
Levi219
I experienced pretty much the same symptoms, that you described, during my last flare. I wasn't really dizzy either, but I was falling down due to malnutrition, and dehydration. Have you lost much weight?
bart4u
bart4u
I think might be in your best interest to have another round of tests to see the progression of your disease. The GI will most want a recent colonoscopy exam. Were you also checked for Crohns Disease. Write down the list of your problems and any questions you might have to ask the doctor. That way you will not forget them when you are in the doctors office. Hope you feel better soon.
JeanCarlin
JeanCarlin
I think the weakness and fatigue are definitely from the UC, I'm always tired. No matter what though you should always try to eat something everyday and drink lots of liquids so you don't get dehydrated.
I hope your visit went well and that your new doc can find something to help you feel better.
Hugs, Jean
DreamsOfFerrets
DreamsOfFerrets
Thanks for your replies! I feel better knowing that I'm not the only one/not making this up. I'm seeing my new G.I. doctor again today for a flex-sig today. I'm gonna do a round of prednisone (which I respond well to) and then we're gonna start on some sort of immuno-supressant drug.

Now I'm just hoping I can get my doctor to work with my place of employment so I don't get in trouble. >.
gustokitty
gustokitty
If you have short term and ltd insurance where u work, I would get your doctor to help like you mention. If you find that you continually reflare and it is affecting your ability to do your job, consider looking into your rights as an employee w a "disability". I made the mistake of continuing to work while sick, not admitting I had a "disability". I got laid off, and immediately lost the ltd insurance of 60% of my income. I did not fully understand the seriousness of the disease and the mental disability that came along w prednisone. I was too sick to get another job, and lost my career, and now survive on poverty level ssdi. Don't let this happen to you!
gustokitty
gustokitty
Which btw, even though it is a required paid ins policy, the gov constantly threats to cut the payout benefits.
bart4u
bart4u
I was never a fan of the flex sig. It can only go up 1/3 of the way and it's more painful than a colonoscopy. I would request a colonoscopy if your insurance covers it. They knock you out. A Colonoscopy will show more too. I would also ask for a Small Bowel with contrast MRI or a CT scan to make sure your lower small bowel is OK. I known a few people thinking they had UC but they really had Crohns. Best to make sure you are OK with the the small intestine. I know these tests suck big time but it is worth it. The goal is to make you feel better.
rmb
rmb
I've requested the sedation used for a colonoscopy for the flex sig. The flex sig is sometimes recommended if your UC is located in just one part of your colon or if removing a polyp from a certain location in your colon. Talk to your new GI about what makes sense for your specific situation as far as tests and what not. If something doesn't make sense, question it.
JeanCarlin
JeanCarlin
The last time I had a flex sig instead of a colonoscopy it did hurt more after even though they put me to sleep and there was a lot more bleeding after for some reason but my doc said that that was all I needed. I hope your test goes well and that you start to feel better after starting new meds.
Scott147
Scott147
In November and December I was sleeping about 14-16 hours a day. My blood counts all showed that I was in relatively good shape (although I was still having frequent bathroom trips). My GI told me that sleep can cause you to feel tired. She recommended that I force my self to only sleep no more than 8 hours a day. It seemed crazy at the time, but it has been working for me. I no longer feel like I'm going to pass out any second.

Good luck with the sigflex.
Levi219
Levi219
I have never been put out for any of my colonoscopies. All they've done for me is give me IV Demerol. That is excluding the one sigmoid. For that they gave me nothing.
rmb
rmb
I had to ask for sedation with any flex sig. That's something I do when we're scheduling it so it's noted.

I was wide awake with my last colonoscopy even with sedation and was aware of everything. So sometimes even with sedation, you gotta just try to relax and go with it.
Posts You May Be Interested In
  • GreenEyes727

    Caricatures

    Posted by: GreenEyes727
    Last Reply: Tired
    6
    Look at what my best friend did with my picture!
  • GreenEyes727

    Truths

    Posted by: GreenEyes727
    Last Reply: GreenEyes727
    14
    We all have 24 hours in a day.  How we spend these hours is important.  Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do.  Gonna have to work on that.Your turn.  Tell me another truth.