CANKLES

Meet Leah:

I’m Leah and I’m a 34 year old single mother of 2. I was diagnosed with UC when I was 20. I have been on the SCD for about 7 months, and have seen great improvement. Because of uncontrollable circumstances, I am currently off the diet and in a mild flare. The main symptom this time is the painful cankles I have developed.

My Symptoms:

Current symptoms: REALLY swollen and painful right ankle, going to the bathroom about 6 times a day, fatigue, anxiety.

My Story:

I have been battling UC for at least 15 years, although I think my problems began much, much earlier than that. I have had my ups and downs. My worst flare up happened about 4 weeks after I had my first daughter 8 years ago. At the time, I had a massive headache that nothing would touch, my face actually swelled up to the point that my eyes were closing. I had a fever and all the symptoms of the UC as well-bloody, mucousy, frequent diarrhea. When my fever got to 102, my husband took me to the ER. Even though I told the hospital several times that I have Ulcerative Colitis, they insisted on putting me in a room and run scans on my face and head, call in an infectious disease doctor, do two spinal taps to check for encephalitis, etc. I had to call my gastro from my hospital room, because none of the docs at the hospital would believe that these symptoms might have anything to do with the UC.

When my gastro got to the hospital, he looked me over, ordered a steroid drip, and voila! All better within 6 hours. All the swelling and pain went away, and I got to go home to my baby. The doc said the strain of the delivery had been too much for my body and threw me into a flare. Thus began my long term relationship with prednisone.

I have been on some dosage of

prednisone for the last 8 years.

This year I began the SCD and have been able to decrease my dosage significantly. My main goals in starting this diet was to feel better and to get off the prednisone. I was down to 5mg every other day. Then disaster struck, literally. I live in West Virginia, specifically, Fayette County, West Virginia. We were hit with a derecho (crazy winds, crazy thunderstorms) on June 29. My power was out for 7 days, there were no stores open, there was no way to cook (other than a charcoal grill) or keep food, there was no ice to be found. So, my kids and I had to eat what we could get, which unfortunately means mostly non-perishables. I tried to stick to my diet the best I could, but was limited to mostly canned foods and dry goods. As a result, I find myself in a mild flare.

At the moment I am having some bathroom issues, 6-7 times a day in there, not really diarrhea, but def not normal either, not a whole lot of blood, but i see it occasionally.  My biggest problem is my joints! My right ankle has swollen to twice it’s size. It is very painful to the touch. My left wrist is also swollen and painful. My back between my shoulder blades began hurting today.

I currently do not have a GI. I got a divorce a year and a half ago and lost my insurance. My GI would not give me the tests and such that I need without insurance. He also gave me a prescription of prednisone and told me to adjust the dose to how I was feeling. So, that’s what I’ve been doing, but I won’t be going back to that guy. He sucks. Luckily, I now have a job with insurance, but am waiting for a referral from my GP for a new GI.

My questions are:

Does anyone else experience swelling and pain to this degree?
How do you deal with it when you do have pain and swelling?
Does anyone else get red, sore lumps on their legs? I’ve got some of that going on too.
Is the joint pain a sign of the UC or is it from being on such a low dose of pred? Should I power through it or increase the pred? Will it go away by itself if I wait it out?

Where I’d Like to be in 1 year:

Off the Prednisone. Forever.

Colitis Medications:

Prednisone works great for stopping flares, but it sucks when you can’t get off it.

written by Leah

submitted in the colitis venting area




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CANKLES

12 Responses to CANKLES

  1. Karen July 24, 2012 at 10:22 pm #

    Hi Leah,

    I had a real problem with all kinds of skin disorders and joint pain. I used to get a big ugly rash on both of my lower legs. I would increase the preds. It took me forever to get off those drugs and when I did I couldn’t walk for the pain in my hip. I was eventually diagnosed with (ankylosing spondylitis). The doctors told me it was directly related to UC. Lucky me. I feel like UC is the disease that keeps on giving. Good luck to you. I hope this new GI can help you. Please know that you are not alone in this and we are all behind you. (no pun intended)
    Karen

  2. Adam
    Adam July 24, 2012 at 10:50 pm #

    Hey Leah,

    Hang in there. You’re gonna be back to normal sometime in the near future. It’s always tough to say with UC and with Prednisone at the same time what causes what, but I think it’s pretty fair to say that most people with UC who get off prednisone when its ran its course, see the “strange side effects” go away or at least most see major reductions in side effects. Same goes with symptoms of UC, when they ease up and go into remission, much of the strange “other” stuff that’s going on often goes away too.

    I don’t know what it is, but great title you came up with…”Cankles” friggin great word!

    Take care, and keep your head up!

    -Adam

  3. Donna Fletcher July 25, 2012 at 5:21 am #

    Leah I have had these same problems with joint pains. I was told abouat this product called Limu. I started taking it and in about 3 weeks my joint pains are almost all gone. just thought you may want to research it. I hope u get to feeling better. Donna Fletcher

  4. Polly
    Polly July 25, 2012 at 5:40 am #

    Hi Leah,

    I’m sorry to hear about your current troubles.
    As far as the Cankles, I am convinced it is a side-effect of the meds. I have been diagnosed with UC for almost 8 months now, and I have been on meds for very little of that time. I have been dealing with a flare for the last 4 months. Earlier this month, the bleeding kept increasing and increasing, so finally I gave in and took the meds from the GI (Canasa suppositories). I took it for 10 (horrible) days. The side effects set in… dry mouth, achy stomach, loss of appetite, and the JOINT PAIN in the ankles… I had to ice my right ankle at night time. I had pain in both of my ankles, but my right one was much worse… I am off the meds again and the side-effects are gone!
    I would recommend icing and elevating your ankle(s) and staying hydrated… you could drink coconut water for extra hydration…

    Hang in there,
    Hugs,
    Polly

  5. Wendy
    Wendy July 25, 2012 at 6:28 am #

    Hawaiian Astaxanthin is a natural supplement that works for me. I also take Omega 3 oil and I try to incorporate flax seed, but the latter may bother your colon. Also Chlorella may help you absorb the Astaxanthin. Spirunilla is good too. Works for me anyway. I hope you get out of this flare soon.

    Wendy

  6. Leah July 25, 2012 at 9:06 am #

    Hey, i have been doing some research and it seems that what is going on with my legs is called Erythema Nodosum. Has anyone else had this? I have all the symptoms. Still waiting to hear something about an appointment. The area I live in is notorious for bad health care, and it is very hard to find someone good, or at least willing to hear you out. I wish I could afford to go somewhere else for treatment.

    Oh, and the term CANKLES comes from my ankles being so swollen that I can’t tell where my calf muscles end and my ankles start=cankles. lol

  7. stephanie July 25, 2012 at 10:57 am #

    I suffer from “cankles” too, although the doctors so far just think it is fat ankles. None of them have linked it or tried hard enough to help me as far as I am concerned. Yes I am overweight but the proportion of my ankles to the rest of my legs is ridiculous. I guess it is good to know I am not alone or that there is possibly a reason for it. Thank you for sharing.

  8. Katie July 25, 2012 at 1:48 pm #

    I once had swollen ankles and legs that were tender to the touch with lumps all over them. It got so bad that I had to start sleeping downstairs because I couldn’t rush down the stairs in the middle of the night to use the bathroom because it was so painful. It lasted a couple of months, but went away when I started getting iron infusions. My dr. said it was erythra nodosum(sp?) and unfortunatly there isn’t a cure. He told me to sit with my legs elevated as much as possible and to take Aleve. And my joints have been swollen and painful several times. I always found that moist heat helped. Mine also seemed to subside after tapering off of prednisone. Hopefully you start feeling better soon, Good luck!!

  9. mom2uc July 25, 2012 at 9:36 pm #

    My daughter who got diagnosed with UC at 3.5yrs of age has been through both the painful side complications – Erythema Nodosum – very very painful red ‘bumps’ on her arms and legs and swollen joints on wrists and ankles – red and swollen. Both are so painful to touch that she would wake up crying in the middle of the night in unconsolable pain even if the lightest of sheets touched it. Since she did not have the other typical UC symptoms we did not know that she was going through an active flare. Unfortunately, there are no cures/medications for either of the conditions other than keeping it elevated, rested, cold compress although often even those were too painful.
    I have noticed that the side complications come when there is an active UC flare so I hope that for you the pain subsides when you are able to get relief from the UC flare. The one thing that has helped me deal with my little girl’s condition is a very sympathetic and diligent pediatrician. She saw the red bumps and immediately went to her office, looked it up and confirmed that it was Erythema Nodosum. She had never seen it herself before but knew it from having studied about it. She was able to do the same with her joint inflammation as well. I value my pediatrician more than the GI if that makes sense. I do hope you find a good GI and get some relief from the pain soon. Goodluck.

    • Leah July 26, 2012 at 7:07 am #

      Thank you. i know what you mean. My GP has been wonderful and would see me and do tests when I didn’t have insurance, when a lot of the GI’s wouldn’t. I had been to 3 different GI’s and not one of them ever suggested I try the basic (and cheaper) Sulfasalizine. My GP put me on it and it helped me a lot for a while. I began noticing some unpleasant side effects though, and came off of it in November. I have been on a lower dose (5-10mg) of pred since that time. I was trying to taper down when all this cropped up, so I went back to 10mg/day. Really really hoping I get an appointment set up today. Yesterday was super stressful. I had extra work because so many people are out on vacation. I got home around 7, picked my kids up from Vacation Bible School at 8, only to find my 8yr old’s earache had gotten worse. I don’t have much sick time to take, so I went ahead and took her to the medexpress place where we sat for 3 hours. Didn’t get to lay down until 1230 pm. My ankle had gone down a good bit this week, but last night it was swollen out of the top of my shoe. I don’t know if it’s stress related, or just that I hadn’t been able to rest it or what. I do know that I am OVER it.

  10. Leah August 23, 2012 at 9:34 am #

    just an update….i went to the doc on august 1. they upped the prednisone to 30mg until i could come in for a scope on the 17th. Had the scope, and was told that my UC was all in the desending colon and rectum…but that it actually looked more like Crohn’s to him….not sure why he thinks that as all my problems seem to stay in my lower colon. Anyway, he started me on Apriso (mesalamine) 2pills 2x a day, and….HYDROCORTISONE ENEMAS!?! I have never had to do an enema on myself before and let’s just say that it’s an interesting experience. It’s also the first week of school for my two kids, and i’m driving over an hour each way to work everyday, so my stress level is through the roof. I am supposed to do the enemas for 3 weeks, while tapering to 20mg pred the first week, 10mg the second, and off the 3rd. Hopefully. I am terrified at tapering this fast as I have been on some kind of pred for a long long time now. I am 3 days in so far, and I haven’t had a whole lot of trouble with them, I seem to be retaining them ok (i do the enema, stay on my left side for 30 minutes, then try not to get up to go to the bathroom until morning). so far no ill effects, and I may actually be seeing some improvement in symptoms. My cankles have subsided remarkably since the increase of the prednisone, and the erythema nodosum is all gone except for a bruised look around the sites. i go back next Thursday before I come off the Pred completely. Wish me luck! I am trying to be very positive, I really hope the apriso works for me as a maintenance med, I really hope i can get off the pred, and stay off it.

  11. Richele
    Richele September 26, 2012 at 12:12 pm #

    Hi Leah!
    I was on 60 mg of Prednisone a few years ago, and tapered off it over the course of a few months. It was one of the most difficult times of my life…two young children and I was bed ridden for a total of five months because of EXTREME swelling in my body, mostly my legs, feet and ankles. Crawling to the bathroom 15-20 times a day/night was awful. I couldn’t wear shoes or socks, not that it mattered cos I couldn’t walk anyways. So depressing. Eventually the swelling subsided, but it still took quite a while even after I was off Prednisone…I tried soaking in hot then cold water, massage, oils, supplements, elevation, compression stockings, you name it….but in the end, it was time that healed. Occasionally I get a bit swollen, water retention, or whatever but nothing like before!
    I recently discovered, while in the hospital last week, that I am in fact allergic to steroids. My mouth swelled up after my third IV dose…so that’s a relief. No more Prednisone for this mama.
    Glad to hear you are improving…hopefully it will just keep getting better :)
    Best,
    Richele

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