Colitis Is Making My Body Ache Really Bad


Hi I’m Sue and I’ve had ulcerative colitis for years. I have only ever been on pentasa slow release tablets 8 a day and when I have a flare up pentasa suppositories and pain killers for the aches in my body I am 56 and had this since I was young.

Colitis Symptoms:

My current symptoms I’ve been bad since Xmas bleeding for 4 weeks and since then the whole of my body is aching.

Aches and Pains from Colitis

I have been in hospital a few times since Xmas.  I have been really bad, my legs have gone worse.  I have pain in them every day.  At night in bed they burn up and my knees really throb some days. I don’t even get up. I just feel so sick all the time.  Since Xmas, my ulcerative colitis has really got worse. I haven’t been to the doctors. I’m not up to going but I have been on steroids which didn’t really help.

I feel like I am slowly dying.   There is nothing I can do if I try and go to the shops I’m in bed for a week.   If I clean up I’m in bed a week.

Any thing I try to do puts me in bed.

I am sick of being sick.

I was wondering if any one else feels like I do

and I wish I’d never herd of UC?

My doctor never checks my butt, I only see a consultant if I am admitted to hospital.  I feel like I am waisting my life just sitting waiting to die because there’s nothing I can do.  There’s so much I want to do instead of sitting round doing nothing it’s s o hard coming to terms with this illness I also have asthma and COPD.   I have had cancer in my right breast and thankfully got over that for now.  Great isn’t it, you can get over cancer but not ulcerative colitis.

I am feeling pretty down at the moment. I know there’s other people like me with UC, I suppose I’m just feeling sorry for myself at the moment.   But it’s so hard to just get up and do what I want to without aches and pains just lying in bed all the time is doing my head in.

written by Liverpool Sue

submitted in the colitis venting area

17 thoughts on “Colitis Is Making My Body Ache Really Bad”

  1. Sue, I know it sounds impossible when you are feeling stuck at home with horrible symptoms, but I think you should do all you can to go and have a doctor’s visit. I’m very worried that you are going to continue to feel worse and worse without seeing some medical attention. Who knows, you might have some anemia or other things holding you back from recovery right now that some simple blood tests might be able to help you out with.

    I wish you some very good luck real soon Sue:)

  2. Hi Sue,

    I know exactly how you feel. Sometimes, I think, I can’t feel this bad and not be dying! Seriously. I feel like death sometimes.

    What you said about cancer, too! It’s so true, isn’t it? You can beat cancer, but you can’t seem to beat UC!! Unless, of course, you have your colon removed. How drastic is that, though, really?

    I hear in your writing that you are feeling very down and depressed at the moment. I go in and out of that. Boy, do I! Sometimes, I have actually thought about suicide! Me, the eternal optomist…at least I used to be, until I got UC, and have put up with it for 15 years now. I get so fed up. I look at other people, who seem to be living life, and I feel like I am not one of them at all. I know I would never take my own life, but this disease can make a person so miserable, and only other UC sufferers know what it can be like.

    What really upsets me is that there is no way out, except for surgery. No cure. It just seems like it should be an easy thing to cure. Ulcers in the colon. I just don’t understand why a cure can’t be found. How hard can it really be?

    Please keep venting. I feel like you do sometimes. I have been ‘flaring’ since two Christmases ago, but I am a very bad girl and patient because I refuse to take steroids, remicade, and immune suppressors. That’s just me, though. I do not believe in taking dangerous drugs, although I do take asacol (not that it’s doing much for me) and alot of probiotics. I have cramps, and one or two very loose ‘you know whats’ everyday, sometimes with a bit of blood, and I know that is not considered remission, but it’s all I’m willing to put my poor body through. Definitely check into anemia. I get it every so often, and I’ve had an iron infusion in the hospital, which is really easy to have. A few hours, and you feel like yourself again, and less depressed to. I think being anemic can make us depressed for sure.

    Keep on doing it! Somebody out there has to find a way to rid people of this awful disease, and I want to be here when it happens!! Can you imagine a world without ulcerative colitis??? It would be a freaking dream…wouldn’t it?

    Bev, in Canada

    1. Hi Sue, I know exactly what you’re talking about. I’ve only had UC for about two years and it’s slowly killing me. I feel terrible every minute of everyday. I’m on Remicade but it’s not working, the pain throughout my body is so bad I can’t get out of bed some mornings. I’m trying to work a night shift at the local hospital in town because SS has denied me disability and I have already lost everything and went bankrupt because of UC. I wish this pain would stop, I also am feeling very depressed and as others have said sometimes suicidal and I can hardly function anymore. Dear God please help…I’m dying with this pain….I need help please somebody tell me how to make the pain stop

      1. Remicade , Humara, and Intivio and predizone all failed

        Iv been seeing acupunture, and just started LDN. feeling better

      2. Hi,

        I have felt the way you have with 11 years of UC.I felt Suicidal at a point when i had flare for about 6 months.Please don’t loose hope.I cannot do household work and any physical activity strians me to the extent of putting me to BED FOR A WEEK exactly like you have stated.This seems to be my story!!!It has been so for past 11 years,its hard to believe but its the truth.I cannot work,do things for myself,during a flare going to a store for an hour exhausts me to death.I have fibromyalgia and i also seem to have chronic fatigue which the doctors have no idea about and have not confirmed.I have done all tests but i am not anemic,all other blood tests are normal.I also feel weak and have body pain,back pain and tiredness.Name it and i have it.My doctor suggested physiotherapy which i could not keep up and had to discontinue.

        But surprisingly after i started to take Imuran the flares have not come back,i can eat pretty much normally and have strted to feel much better.The other thing which has helped me a lot with my stamina is ALoe Vera gel.It helps in cleansing your colon.Probiotics have greatly helped me.I have been taking VSL#3 from about 2 months and now i can eat much better than before.

        I would strongly recommend this probiotic to you.Please give it a try.It has helped me tolerate foods better,increased my stamina by folds and has improved my overall health.Please do give it a try and i am sure you will see results.Lots of love and may God Bless!!

        I have read about surgeries too and we still cannot claim that surgery is a cure for UC.Some surgeries do not work the way they should and people still suffer even after having a surgery for UC.Despite all this i would like to wish you all the best and to be strong enough.Who knows cure can be just around the corner!

      3. I found the cause of my colitis – CORN! It took me a year to find it. After being tested (at MY request) for gluten and lactose intolerance and allergy tested with no results I decided to go on an elimination diet. (Elaine Gottschall diet) I went on this diet for a month & quit the Asacol during this time. I was completely clear until I ate something with corn. I thought not too bad until I discovered that corn is in EVERYTHING! It goes by 200 different names, is a cheap sweetener, thickener, etc. No wonder it is hard to find as a cause. I recommend to anyone with UC to try an elimination diet. It is a very basic diet – no spices, fast food, etc. Your cause could also be more than one food or additive, like msg or sulfites, but it is worth the effort to find. I think a Corn intolerance is as common as a gluten intolerance, it just hasn’t been discovered yet. It took some time for gluten to be discovered as a cause for UC. FYI – an intolerance will not show with allergy testing and allergy testing is not always accurate.
        Back in 2004, when I was diagnosed, Elaine Gottschall’s diet was free on the net – not sure if it is now but I do recommend checking her out.
        I went off my Asacol at that time but I am not recommending anyone going off their meds without medical advice. I still take Asacol as it is very hard to eliminate corn completely from the diet and am too lazy to remain on Elaine’s diet. I know I would feel a lot better if I were more diligent. I do suffer from aches & pains when I eat something with corn. I certainly don’t eat it knowingly. It can be in natural & artificial flavours, citric & ascorbic acid etc. so is very hard to eat a completely corn free diet. I am a nurse & after I told my GI Dr. of this he said that there is no known cause of UC & that I was wrong. Know you own body & keep trying!! GOOD LUCK!!

      4. My body aches very badly as well at the moment. I feel like crying all the time because I am so tired, no matter how much I sleep. My body aches always. This has been going on for two months and is getting worse. I am trying diet and supplements before I go to the doctors.

        1. ive had U.C. for 9 years, its hell. it causes joint pain all over my body, my teeth feel like they’re breaking, i maybe sleep 4-6 hours everyday. constant nausea, i have a hard time keeping food down. im on nortriptiline, sertraline, and baclofen, as well as 2000-4000 mg. of ibuprofen. i cant exercise anymore, i need my family to help me with everything, my dad had to help me off the floor. but somehow i make it through the day….. i get really messed up thoughts cause i dont ever feel relief… tough but i find myself crying once a week, just dont give up, you gotta make this disease your bitch haha yeah

        2. I have UC for about a year now and nothing is working, even the Simphoni injections. My whole body aches all the time and getting worse….please help me I can’t take it anymore

        3. Thank you so much. I have hurt for years and everyone says I’m just lazy. It hurts to walk, it hurts when I eat, it hurts all over. Thank goodness that I really am feeling what I’m feeling. I am not crazy!

        4. Hey,

          Its a day to day experiment with help from your doctor. Doctors in this field are definately not created equal. Some sincerely care while others seem disinterested or believe the disease is only handled one of a few ways.

          I’m not a doctor, but I see stress, both mental and physical can play a large roll. If people are abusive, work or school is tough or your envirnment is stressful try to move away from those situations. If you still live with family, sit down and explain this to them hopefully with the help of your doctor if he/she believes this, if not find another to explain this. Also, how you physically move around or exercise can at times further disturb a current flare up and there could be a chance you don’t feel a flare up coming and certain movements could disturb it. Exercise, when done right, is still great for you, keep it up when physically able under your doctor’s instruction.

          What you eat and the vitamins/minerals you absorb play an important role. When flared up it might help to get tested for nutrient deficiencies and compensate for the deficiencies under your doctor’s instruction.

          Supplements may help, but again talk with your doctor.

          Be a little more thankful to those who support you and make you feel mentally better. These people are rare, cherish them!

          If the doctor doesn’t seem right, a second and third doctor should be interviewed with your chart and your concerns. Again, some don’t care enough, other do or even know more than others.

          Hope this helps!

        5. Finally I know that I am not alone. I hurt all day everyday and sometimes feel that life is not worth living. I never know where to expect the pain and find simple activities frustrating. Does anything help with the body aches?

        6. The body aches are from systemic inflammation so finding what triggers it (allergies/intolerances) will help. Try an elimination diet & also turmeric with black pepper, ginger & any other natural anti-inflammatory should help. Eat very clean, only organic, avoid chemicals in personal care products, use natural cleaners & laudry products, etc to lessen burden on body. Magnesium oil applied directly to the aches may help as well or an epsom salt soak.

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