12 Years of PAIN From Colitis Symptoms

Hi I been on here for about a month now I’m glad I found this site.

Well I have had Severe Ulcerative Colitis for about 12 years now, its been so long I can’t really remember exactly what month and year I got diagnosed. Can’t say I have ever been in full remission. I’ve been under moderate control to where I can deal with it. I have probably been on every med out there and the only one that works is the dreaded prednisone. My doctor says I’m prednisone dependent and I’m a difficult case. Been in hospitals and doctors offices so much I can’t see straight. Everyday I have a new symptom. It’s really embarrassing, the people at the hospital know my face, I’m in there so much for things. This past month has been really bad for me. Had about two flares, I got MRSA, a really bad infection.  Blood count was double the normal.  I got the infection in my thumb twice.  Second time in the OR.  Now I found out I have multiple kindney stones blood in my urine so I go Thursday for a camera up the pee hole….

Well, I have a question for all you UCers:   I experience some pretty severe pain … everywhere I get these pains out of no where.  I get to the point where I can’t even get out of bed.   My back, my hands, and wrists hurt so bad I can’t stand it.   My knees… it’s like the pain moves from area to area.  I’ve been on pain medications for almost 2 months now.   It’s gotten so bad.   Some days the pain is so bad I can’t function, almost brings me to tears.

Another question:

What is prednisolone any difference from prednisone?

Anyone else go through this?

Colitis Medicines:

Prednisone
Mercaptopurine
cipro
Phenergan – for nasuea good stuff
have taken humira didnt do good with it

 

Submitted by “Pain” in the Colitis Venting Area









pains

7 Responses to 12 Years of PAIN From Colitis Symptoms

  1. Blake November 16, 2011 at 11:04 am #

    I’ve been having really bad rectal pain. I can feel my anus pulsating with my heart beat and it’s painful as hell. I just got my first Remicade infusion last night and I’m hoping it kicks in soon cause its hard to sleep, or do anything right now with this pain. I haven’t had much joint pain though, thus far. But I’ve only had UC (that I know of) so I probably just haven’t gotten to that point yet. Do you ever get this kind of rectal pain, or anyone for that matter?

    Blake

    • shannon November 16, 2011 at 2:33 pm #

      Hi blake i to have had uc for 12 yrs. No surgeries yet. Im having a flare now an having pain all over as you are. I also get rectal pain an spasms. Enough to make you cry. Esp. If i have had alot of urgency. An that is happening now. Plus my stomach is so swelled huge. An im not a big person but i look pregnant. I truly hate this disease. Im the choosen one who has crohns also so when one flare goesaway i get stricken with the other. An at times its hard to figure out what one is acting up. Like now. My dr has been hard to get into an i wait weeks to see him an i last time i got told he was doubled booked so i had to resch. Which made me mad. So i hope soon you get some relief. Read my stories ive written its a lonely disease an a few other things ive written along with it. God bless shannon

  2. Hopskotch November 16, 2011 at 5:19 pm #

    Pain – Sorry to hear about your pain! Sounds like pred pains to me… does your doc have any suggestions? Hope they can taper you off the preds soon! AFAIK prednisolone & prednisone are pretty much the same thing.

    Blake – I’ve had severe fissures and some ‘roids since childhood, (long before UC), so I consider myself an expert on that kinda pain! :-) The throbbing sounds to me like it may be ‘roids or even a fissure causing some inflammation. I’d suggest discussing with your doc. Strange thing happened to me – finally had surgery for the severe fissure a couple months ago. All went fine except for one thing – the normal inflammation I had from the surgery triggered my current UC flare. This makes me curious how many of my previous flares might have been triggered by inflammation I was experiencing from those other conditions. So, I’d suggest getting it checked by the doc. There are some topical medications they can give you if it is. There are also some OTC ones that work quite well (in many cases better than the Rx ones.) But make sure with your doc that they won’t aggravate your UC. Meanwhile, if you can take tylenol, that can help some.

    Hope you both feel better!

  3. Blake November 16, 2011 at 8:13 pm #

    A fissure, that makes sense. Ill bet I probably gotta few. Thanks, Ill ask the doctor about that. It’s the first night after my first Remicade infusion and no relief yet. Ass is still throbbing after I use the toilet. Hopefully Remicade just needs some time to work its majic. Thanks Shannon and Hopskotch!

    Blake

  4. Rai November 16, 2011 at 8:58 pm #

    I get muscle and joint paint randomly and, like your pain, it seems to navigate – fingers, wrists, shoulders, knees, hips. One day I can feel fine, and the next my ankle is locked up. Tonight my shoulder felt like it hardened in the matter of an hour. My doctor didn’t really know what to tell me, but I’m going to ask him to refer me to the rheumatology clinic because the pain can be pretty acute and debilitating when it comes on. Only on sulfasalazine right now (but a high daily does), and have a mild to average case of colitis. My doctor told me to take Tylenol which kind of can take the edge off, but it doesn’t provide what I would call relief. I could go through a bottle a week if I took it every time I had pain. I’ve had some luck with putting ice on my hip when it gets really bad. Good luck!

  5. Linzi November 17, 2011 at 4:39 am #

    Hi guys,
    I have had UC for over 12 years myself. When I had my 1st severe bout that hospitalised me they put me straight onto Mesalazine & Prednisone and had every junior doctor insert lots of metal instruments when ever they fancied. Without realising I became hooked on them (the drugs, not the metal instruments) and after missing a day of them due to running out I had a fit and collapsed whilst looking after my two toddlers. Luckily the worst thing they did was use me as a sofa to watch TV on until I came back around. From that time onwards I ended my contact with any form of drugs that were prescribed by my doctors and after several pointless colonoscopies ended my relationship with the specialist at the hospital. I have over the years just about tried everything from acupuncture to every sort of diet you can think of, I have seen countless nutritionists and dietitians. I have suffered from severe joint pain( this is something to do with the way that the liver is sorting out & storing-have a good read of a website such as wwwbritishlivertrust.org.uk or a similar version in your country- its all very much to do with the immune system & how the bowl deals with things), what can only be described as hot knives being shoved up, well you know where, swelling to make me look 8 months pregnant, dehydration, ulcers that run all the way through, ‘roids, fistulas, terrible fatigue ect and just misery at having no control over my own life. I have at times been so bad and dehydrated that I have had no choice but to be admitted into hospital but then I have only accepted the drip to rehydrate & get some goodness back in my body whilst resting the bowl-no drugs. I have had times of nearly better health but as soon as I think I am getting somewhere I’ll have another set back. For a while now I have been using Ultrainflamx twice a day and watching my diet-I have never believed them when they said that food was nothing to do with it. It had helped me maintain a steadier level but I did still get flares. I have been suffering from pain for a year in the area of my liver, my GP took blood tests and could see nothing so told me it must be a muscle. 2 weeks ago I had a bad flare and the pain in that area intensified, I went back to my GP saying this is not a muscle! I am now awaiting a scan to see my liver and the gallbladder, which he think will have to be removed. Honestly I was too tired to care but my amazing husband(who put up with all of my moods & illness)went on the net again in search of something to help. What he found that seemed to have the best reviews from sufferers like me and you and those with Crohn’s etc was the SCD diet. Knowing how much of everything I have tried and how desperate he is for something to work I said, sure why not. So I am now on my 5th day, it’s not long-I know, BUT! I do feel considerably better already, my swelling has gone down, no bloating,gas,pain and I have energy-not as much as I want but it has only been 5 days! I know it’s going to be tough, the better I feel the more tempted I will feel to eat what I want rather than what I should, but I know I can’t go on any more suffering like this-it is driving me to despair and my family to. So, I will get back to you and let you know how it goes but why not have a look at it and see if it is something you can get on board with. It seems in the US that you have more invested in UC than we do in England, and maybe more drugs but the one thing I know is that any of the drugs that I have taken have not made me any better only made me a bit of a zombie if you guys feel the same it could be worth giving it a try. P.S thanks for the site Adam how long have you been doing the SCD diet? :)

    • Adam November 17, 2011 at 7:54 am #

      Hey Linzi,

      So happy you are having success with the SCD diet. That’s such great news!

      I myself have been on the diet for just over 2 years now, well actually about 2 1/2 years I guess. And things have been great. I wish more people gave SCD-(www.ihaveuc.com/the-diet) a try since it really does work for alot of us.

      Take care,
      Adam

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No matter what, colitis flares don't last forever, don't forget it:)