Still Looking

bob with ulcerative colitisIntroduction:

60 years old. Married with two grown children and a grandson. Currently work in the financial services industry after retiring from a law practice. Adjunct professor in political science at local University.

My Symptoms:

Severe joint pain on an almost daily basis. The pain started with a UC flare up 2 years ago.

My Story:

Diagnosed in my early 40’s with UC. Spent a summer with diarrhea and finally went to a friend of mine who is a Gastroenterologist. He was surprised at the diagnosis given my age, but here I am. At that time he said that my condition was a 2 on a 10 scale. Sulfasalazine controlled all bowel problems until about 3 years ago when I started having more frequent flare ups. Approximately 2 years ago I suffered a UC flare up and all hell broke loose. In addition to the bowel problems, i developed joint pain which became so severe I could hardly make it up a flight of stairs. They initially prescribed Imuran which almost killed me because it metabolized the wrong way and sent my liver into shock. They changed up to a combination of Asacol and Entocort which tempered the pain and put me in remission.

Prednisone is a no go because of the mood swings it gives me.

After 1 year on the drug combination of Entocort and Asacol I was referred to a Rheumatologist . I had gained 25 pounds and despite what I did the weight stayed on. The Rheumatologist immediately took me off the steroid. My pain immediately returned and we did Enbrel followed by Humira. I have been on Humira for 3 months now and it does not seem to work. When the pain gets real bad my family doc prescribes me oxycodone. This relieves most of the pain but makes me a zombie. I continue to work out as I have always been active, but recovery is a bitch. I try to follow a UC diet (no bread or pasta), but the pain persists. It is difficult if not impossible to talk to people about the pain. No one really understands so its easier to grin and bear it. I see the Rheummy tommorrow after 3 months on Humira. Don’t know what’s next.

Where I’d like to be in 1 year:

Pain free. Could care less about the bowel problems.

Colitis Medications:

Sulfasalazine worked for years. The Asacol keeps the bowels in check. Narcotics are the only thing that relieve my pain at this point.

written by Bob

submitted in the colitis venting area




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joint pain

5 Responses to Still Looking

  1. KK-SCDer August 28, 2012 at 8:43 am #

    Hi Bob,

    Sorry to hear about your UC problems. The first thing I would suggest is to stop wasting money and (more importantly) health, on humira. I hope you’ve seen the recent study (http://articles.chicagotribune.com/2012-08-24/business/chi-fda-staff-abbotts-humira-may-not-be-effective-for-colitis-20120824_1_disease-that-causes-ulcers-abbott-s-humira-johnson-johnson-s-remicade) which basically says that Humira is absolutely pointless. The second thing, and this is currently working miracles for me, is to start the Specific Carbohydrate Diet (SCD). Look at websites like http://www.breakingtheviciouscycle.info/home/, and SCDLifestyle.com. This diet was designed specifically for people with IBD, and it works! It works very slowly, but healing is a slow process. It does help with join pain, bowel movements, and abdominal pain, because they all stem from the same source. The UC diet is more than just no bread or pasta. It means no complex sugars. The diet has worked wonders for so many people on the internet and its helping me so much too. Please give it a shot.

  2. Bev August 28, 2012 at 5:04 pm #

    Hi Bob,

    Wow. That is really something living with that constant pain all the time, I’m sure. I know what you are talking about for sure. Ever since I stopped all of the UC meds (I’m just not going to put any of that stuff into my body ever again), my right shoulder kills me. 24/7, the pain is there. I don’t take a thing for the pain, because I know most painkillers will bring about the UC symptoms again. I’ve somehow managed to attain UC remission with probiotics, but the arthritis is flaring like hell.

    I haven’t told anyone, including my doctor about this, as he would just want to prescribe a drug, which, as you can tell, I am very averse to at this point. The pain is very severe, especially if the weather calls for rain! I wonder what winter will be like this year, as I’m up here in good old Canada. It can get pretty darn bitter…My husband knows, but I handle it so well, he doesn’t know how bad it really is. I can see it in my face in the mirror…I think chronis pain ages us…I just feel like I complained so much about the UC, when I was flaring, that I just want to appear happy all the time now…hah…

    Anyway, I wish I had a solution for you, but I don’t even have one for myself! I only hope the pain just remains in the one arm, and nowhere else. I’m crossing my fingers, and I certainly hear you my friend.

    Cheers, and less pain to you,
    Bev:)

    • Dawn August 28, 2012 at 5:46 pm #

      Hi there Bob,

      When I was first diagnosed with UC in 2003 I experienced the worst joint pain as well. It would travel from my ankle to my knee to my wrist etc and it was more pain than anything I ever experienced. I once told my hustband that the pain was worse than when I had our daughter with no pain meds, and I totally meant it. I went to a Rheumatologist and was told it was Rheumatoid arthritis. I was prescribed something for the pain but it made me so loopy I didn’t take it again. Eventually the RA went away, and I went into a 3 year remission of both UC and RA – that is a story for another day.
      I am in the midst of a flare right now though and have also experienced RA again in my ankle. I was so discouraged because I though OMG, I have to suffer with this again now too. My husband determined to help went to a drugstore and bought me Tylenol for Arthritis. I was skeptical given the pain (I agree, no one can relate to that pain) but it actually worked. Within 20 mins my pain had subsided. My ankle was still un-recognizable and I couldn’t walk but at least the gawd awful pain was gone. I won’t hesitate to take it again when I need it.
      This site is great. It wasn’t around when I was first diagnosed but I was sure happy to stumble across it 2 months ago. I could really relate to what you are going through, I hope you find sweet relief soon.

      Take care,
      Dawn

  3. Allison-3
    Allison September 2, 2012 at 12:20 pm #

    Hi Bob-
    So sorry to hear about your pain. I am 2 1/2 years into UC and find that the nature of any autoimmune disease is quite tricky and unpredicatable. The first Winter I was sick I totally over did it while shoveling a foot and a half of snow. I couldn’t move my arm in the morning and a week late it was swollen, red and warm from my elbow to my fingertips… I went for an X-ray bc I thought I had a fracture. The pain was throbbing, constant and excruciating.
    I am lucky to have a holistic doctor who is always quite calm… but when I came in to his office he said OK the X-ray shows no fractures but I think you have Reflexive Sympathetic Dystrophy (RSD)…. he said- “do me a favor and don’t google it bc it will scare the sh*t out of you”.
    Basically, it is also an autoimmune disorder which can happen in conjunction with UC. The sympathetic nervous system (which is very involved with injury, inflammation and our guts) overreacts to impulses and sends out nuclear bombs instead of a small battalion. The following week I had a weird swelling under my eye as well. My doctor did some laser therapy and I just managed the pain with a lot of deep breathing. It took about 3 months but all the pain finally went away and I’ve never experienced anything like that since. I stay active but I def. make it a point to never overdo it.
    I do a lot of Brain Gym type exercises to rebalance the nervous system and meditation and yoga are VITAL!
    Could be a shot in the dark but hope it helps!

  4. ag_forum September 4, 2012 at 2:06 pm #

    I’ve had moderate joint pains coming out of my second flare. I’ve found a homeopathic remedy helped a lot with the stiffness. (some might be skeptical about homeopathy but as a UCer desperate for relief i think its worth a shot) Then I tried raw milk and it has greatly reduced my joint pain. I then read about a home remedy involving 1/2 tsp baking soda and 1/8 tsp magnesium citrate in a glass of water. It definitely helps a ton with the joint pains and is supposed to help with the colitis as well, but don’t know about long term as I only just tried it. Too much baking soda is supposed to be bad for you so I don’t plan on taking more than a glass or two a day when needed. Right now almost pain free. Of course I’m careful about diet as well, although I havent gone full SCD.

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