Is It Normal to be So Low in Energy & Weak in a Flare Up?

a picture of me down by the water

a picture of me down by the water

Introduction:

Hi I’m Helen from London, UK. I’m 34 years old and have had UC for about 10 years now and am currently going through my worst flare up ever. However, on the plus side I’ve lost over stone in weight (About 6/7 kg’s for you non Brits), but think I would have preferred the exercise route!

Some more about me:

I love nature & wildlife and all animals. I like socialising and dabble with a bit of surfing & scuba diving when on holiday.

Symptoms:

More frequent BM’s (dia), wrist & ankle joint pain, low energy and weakness.

My Story:

I’ve been really lucky really with my ulcerative colitis for the past 9 years, only having quite a bit of wind & sometimes mucous in BMs at times but apart from that I was well. However this past year has not been so good and right now I am in the throws of the worst flare up I ever had!

Originally diagnosed with procitis, I have had colonoscopies which have shown it has spread. Apparently I have a rare presentation of UC as mine is patchy like Crohn’s, however the Doctors think it is still UC due to the biopsies & the fact that my flares tend to coincide with me quitting smoking! Although I do think my flare ups are stress related too.

The flare up I have at the moment is nasty, I’ve never felt so ill for such a long period of time in my life. It’s been about a month now and whilst I’m only going to the toilet roughly 3-5 times a day, a bit of discomfort in guts after eating, I feel so weak and low in energy. My walking is so slow, my wrists & ankles ache, everything is an effort, having a shower takes a lot of effort, walking to the bottom of the road is an effort, & if I try to do a bit of washing up I have to take rests in between. I’ve been off work now for a month and whilst I’m no longer spending days in bed I just don’t have the energy to go back to work yet and feel like this is going on forever. I’m borderline anaemic but always have been and never felt like this. I have been on the SCD diet (including the SCD yoghurt) now for a week but am finding it a bit difficult as I only eat fish (no other meats) and not sure it has done anything yet. I just wondered if anyone else had experienced such fatigue/weakness/low energy without having that many BM’s? Is this normal with UC? I’m only usually going 3 times a day (but all dia).

Medications:

Asacol – 400mg x12 daily

Beclometasone Diprop (Steroid with less side effects than Pred) Dr started me on this at the beginning of this flare but it didn’t do anything for me).

Prednisolone x30mg daily (Steroid) Tried this with the steroid above when things weren’t improving but I had bad side effects from Pred in the past, which is why I was on 30mg. Although physically Pred does help my guts & improve things, emotionally I can’t handle it and came off them again after 5 days due to feeling very anxious/on edge, not sleeping & crying uncontrollably!

Prograf (Tacrolimus) Immune suppressant x2.5mg daily. My Dr started me on this a week ago I don’t think it’s commonly used with UC more for anti-organ rejection. The side effects look quite scary! It has helped a bit, I was having overall body achiness a bit like when you get the flu, this has improved but all my BM’s still dia and I still feel very weak and low in energy.

VSL#3 (Probiotics) I find this good when I have mild symptoms but I’m not sure it is doing anything at the moment.

I also take fish oils & vitamin D.

written by Helen M




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9 Responses to Is It Normal to be So Low in Energy & Weak in a Flare Up?

  1. Adam
    Adam September 5, 2013 at 4:26 am #

    Hi Helen,

    Thank you again for sharing your story with the website.

    I really hope today is a much better day for you from when you wrote this story a few days back.

    So check this out, we completed a survey here on the site with people from the newsletter back in September of 2012. There were 157 participants, and the topic was “Colitis Flares”.

    Lots of good info there you should read if you haven’t already, but in specific, there’s Question #5 from the survey which is:

    “How do you know you have entered a UC Flare? What starts to happen to your mind and/or body?”

    Some of the responses (there’s many so this is just a few I picked):

    -i usually feel extremely tired and the glands in my groin swell.It starts with constipation and then really bad wind,bleeding mucus and diarrhea, as the days go on insomnia,headaches eye swelling,weakness and fatigue.weight loss soon occurs.
    mentally tired i become a recluse for the time i am in flare,unable to leave the house (loo).

    -I feel very tired and and out of sorts. Just not myself. Then the gas and urgency start.

    – My body starts to ache on my left side in my back, wrist and ankle.

    – Pain in ribs, overwhelming tiredness, worry, lose appetite and start passing more and more blood

    – I start to feel worn out and then it hurts to eat. I get gassy and start to hear stomach gurgling, then I start to bleed.

    ***Again, this is just a few things I picked out, but you can read all of them here:

    https://www.ihaveuc.com/157-patient-ulcerative-colitis-flare-survey-results/

    As far as your question with regards to “not that many” bowel movement, lets say 2-3/day ish… anecdotally I’ve for sure spoken with many UC’ers who have said just that. Things like, “I’m in a bad flare in terms of symptoms, but just not doing that many bowel movements…” So I think its for sure possible that this could all be UC related.

    I am not familiar at all with the medication Prograf. I think you might be the very first person EVER to mention it on the site. (Good going Helen!!! :) If I was you, it might be worth doing some research online with PubMed, and/or talking with your doctors if you haven’t already to see if there are any clear ideas of side effects that make sense to you as well.

    No matter what, your colon hasn’t forgotten how to work. Flares for sure can throw alot of the body’s systems out of wack TEMPORARILY. But you, your colon, and your immune system, and most importantly your mind have gotten thru tuff times before (come on right, you’ve made it throgh rainy summers in london before right?) and you’ll get through this flare.

    Best to you Helen,

    -Adam

  2. emjay September 5, 2013 at 4:34 am #

    Hey Helen,

    It is definite normal to feel so low in energy during a flare – even if it’s only 3-5BM a day. If your borderline anemic get your iron checked again, I tend to need 2 iron infusions a year & it makes a huge difference. I don’t eat any red meat plus I naturally don’t absorb iron well. Stress definitely makes it worse for me, energy levels drop big time. Fatigue & joint pain is a big part of colitis in general, I’ve found. Might also be worth getting your hormone/thyroid levels checked and I take B12 shots for energy too.

    I’ve had colitis for 12 years now (I’m 30) & over the last year I’ve come off all my meds. I’m def not “normal” and seem to usually be in a bit of a flarey state, but I’m getting better results now – especially when I don’t overwork myself! (I’m a freelance designer).

    Good luck with it – hope those energy levels bounce back soon.

  3. Edmund Murray September 5, 2013 at 4:47 am #

    Hi Helen,

    I was only formally diagnosed just over a year ago but I’ve experienced very similar symptoms of fatigue during flare-ups so you have my sympathy. Being of a similar age to yourself and completely housebound at times can be utterly soul-destroying. It’s only really Prednislone which keeps me upright these days, although I do feel that the Pentasa and Azathioprine I’m also taking have had a limited positive effect. However, having heard about the long-term effects of Prednisolone I am looking into other options to see what approach to take in future.

    I have absolutely no medical training whatsoever but my theory on fatigue is that the body is using up so much of it’s energy trying to combat the goings on inside that it doesn’t have any energy left over for anything else. No doubt, this is a very simplistic thought but having had plenty of time to ponder the condition while in bed/on the toilet over the last year, it struck me as being an obvious answer.

    Anyway, I hope you find yourself on the mend sooner rather than later.

  4. Jami Adams September 5, 2013 at 6:40 am #

    I tend to have very low energy out of the blue and will sleep for days if I could. I have been “diagnosed” for 10 years but have had the disease for 15. When I get tired I amp up my protein and water intake and after a few days it does help. Sometimes I will get out of breath walking 10 feet but the next day I am back up and running
    . It is very frustrating! Currently I don’t take any meds unless I start to bleed for more than a day or two. My specialist says it’s not worth the risks from the meds for mild cases.

  5. barb September 5, 2013 at 10:46 am #

    Yes it is normal to feel really week…..I just had a really bad flare back in March and I am still trying to get the muscle tone back in my body.

    When you start to get some hydration back in your body you will start to feel better. Hope you are feeling some energy soon.

  6. Juliet
    Juliet September 5, 2013 at 11:31 am #

    Hey Helen!

    A fellow Londoner!!!! I’m feeling pretty much the same as yourself right now. The flare plus steroids are making me weak, tired, lethargic, achy! I’ve also just started the SCD and I think I’m noticing small improvements. Although I feel whilst still on 9 week course of steroids getting a true indication of how the diet is working will be altered.

    My UC was also patchy when first diagnosed but is now severe pan colitis. I’m sure certain meds actually made things spread!

    My recent flares occurred after quitting smoking and stress management is a big part of it for me. I guess smoking used to alliveate some of the stress levels! When I’ve got the energy I’ll be going back to yoga! For now just trying to get enough sleep is important.

    Keep resting and keep hydrated is probably the best advice I ever got. Not rushing to do too much too soon is something I had to learn. I feel guilty for not achieving much during the day right now. But our bodies are using up lots of energy we just don’t have! I hope you feel better soon xx

  7. Helen M
    Helen M September 6, 2013 at 5:58 am #

    Thanks everyone for your replies, I guess I just need to ride this out and try not to get so frustrated by it! Good advice with the hydration, rest and getting my bloods re-checked & think I will go back to yoga too when I can. Juilet – I hope get out of your flare quickly.

    Thanks Everyone!

    • Bri September 9, 2013 at 7:30 am #

      Hi Helen,

      I am very similar to you in that I don’t get a lot of BM’s in a flare but find the left hand side pain and gas and bloating plus the lethargy the worst parts to deal with. I believe that this disease causes a cycle for us too in that the condition makes us become isolated and feeling frustrated and in some cases depressed, then we become less active and eat the wrong foods and we also become more stressed which are all the things that makes our symptoms worse. I am the same as you I can’t stand the prednisolone side affects and am refusing to go on them now as for me the side affects don’t warrant the benefits and am horrified by the long term affects on the body with it’s use. I am determined to try and control the condition using diet, exercise and natural medicine but have only just begin down this path so I’ll let you know how it goes. Keep your chin up and keep active physically and socially and keep exercising even if its a slow walk around the block, for me the more a exercise the better I feel it gives me energy and boosts my spirits. Good luck.

  8. bev September 6, 2013 at 7:35 am #

    Like everyone else says…this is all normal. UC whacks you,. It takes it out of you!

    Get lots of rest, and take a nap if you have to. It’s okay to do that. Also, have that iron checked out. I was so low, and didn’t even know it. I still take liquid Ironsmart every day, even though my levels are back up. It is the only oral iron that I can tolerate. It does not make you sick and it tasted great!

    Cheers

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