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Stagnated

Introduction:

I am a teacher living in Illinois, USA.  Have 2 kids and my oldest has Ulcerative Colitis which started as Crohn’s disease. In the past I have been very active, running and doing yoga but now don’t have the energy. I barely have the energy to wake up in the morning

Colitis Symptoms:

  • Multiple bowel movements
  • joint pain
  • cramping
  • low energy

Deb’s Colitis Story:

I have been on Lialda for about 5 months and it does not seem to be working any more. Started the Simple Carbohydrate diet about a week ago and am wondering about how long it takes to work. My diagnosis is severe ulcerative colitis so I guess I have to be patient but am really tired of not having any energy. Even walking up the stairs now is tiresome and 2 years ago I ran a 1/2 marathon!

Also, stress has been playing a large part with my symptoms. If something makes me upset I seem to get worse. Any advice on this? I was married this past July and that seemed to trigger my UC. It turned out to be a fiasco and my husband had lied to me about some things. Right now we are separated. Teaching classes when you have to keep using the bathroom is awkward, especially since I work with teenagers. Most days I have to run to the bathroom at least 4-5 times during the day and that is after waking up sick for an hour every morning.

Really, I just want to feel myself again.

On the weekends I just lay in bed and I don’t have energy to do anything with my kids. I watch a lots of tv now which isn’t even what I like to do but feel so bad that I do housework in spurts. My family doesn’t realize how sick I am because I don’t want them to worry about me because I have always been the one to take care of everyone.

When my son was diagnosed the doctors did not seem all that helpful. I was reading the Lialda information and it said that there is no evidence that it works past 8 weeks and that seems to be what has occurred. Why is that my job to give the doctor that information? This is what I have already had to go through with my son and really don’t want to go through it with myself. It would be nice if doctors paid attention to more than just handing out medicine.

Colitis Medications:

Been taking Lialda and it worked at first and now seems to not be working.

written by Deb

submitted in the Colitis Venting Area

Tags: lialda, mom





10 Responses to “Stagnated”

  1. AdamMarch 7, 2012 at 5:46 pm #

    Hi Deb,

    You’ve probably already talked with your doctors about this, but so many people come down with moderate and often severe anemia due to active colitis symptoms, and that often leads to fatigue/exhaustion and the common feelings of being very tired. It happens do to blood loss among other things.

    As a past sufferer of anemia from my colitis, it might be something to talk with your doctor about, as it is easily tested via a blood test and treatment is very easy as well.

    Just an idea, but it stinks when you feel like you have no energy, and when you get some life back in you, its an incredible mental boost!
    best of luck to you Deb!

  2. RebekaMarch 7, 2012 at 8:42 pm #

    Hey Deb,
    Thanks for sharing your story! There have been a few teachers posting on here, I wonder if it affects more teachers, maybe because of stress? Maybe it’s just coincidence.I really hope you feel better soon! I know sometimes there are these low points that we can’t imagine to ever get over, but I’m sure you will too.
    I was thinking the same thing as Adam, about the anemia! Anemia can be terrible and once that’s taken care of, you might feel a huge difference. Unfortunately it seems to be something that comes along with UC, it might be due to blood loss or malnutrition (iron deficiency) or because of our whacky immune systems.
    I am currently still on Lialda myself and saw that there is no evidence for efficacy past 8 weeks. Interesting how they still insist on us taking it, isn’t it?
    Best wishes to you!
    Rebeka

  3. MaggieMarch 8, 2012 at 6:24 pm #

    I actually took Immodium, an otc for diarrhea when I had my last flare. It was during the 2nd week and I was so so sick! I called the gastro clinic on a weekend and got an on-call gi who sent a ‘script to my pharmacy for Entocort. The Immodium stopped the diarrhea so quickly and I believe it calmed my bowels enough for the medicine to work. The flare was over in another week but it shook me to the core. My bowels are whacked out now but no blood. If my stools get runny I will start back on the Immodium. I’m wondering why no gi’s ever make use of diarrhea medicine. Maybe it won’t work for everyone but I thought it worth a shot since I was desperate. I also take a lot of supplements including iron, calcium, D3, and fish oil. I hope you feel better sooner.

  4. Math Teacher TiffanyMarch 8, 2012 at 6:37 pm #

    Hi Deb,

    Wow, your story is so similar to mine! (My story is the one titled “Ulcerative Colitis, C. Diff., and Salmonella”). I am a middle school teacher, I was diagnosed in October 2010, and I was married December 2011. In the middle of it, though, I got salmonella once and c. diff. twice (although once was a few months before UC started).

    I agree you should be checked out for anemia. Also, you might just need a stronger immunosuppressant or go on prednisone for a while until the lialda can kick in. I am currently on both lialda and imuran, but it took almost 10 months of prednisone to get my body healthy enough for those two to do their jobs. Originally we tried just the lialda, but it wasn’t strong enough on its own. Also, I found that the enema (it might be called mesalamine, they’re the same thing) works to control minor flares if you catch it when it starts.

    Teaching can be rough with this. You catch every darn bug that your kids walk in the door with because the Lialda lowers your immune system. Plus your on your feet all day, and let’s face it, teaching is stressful. It can be a weight on your shoulders. I’m moving to another state this summer, and as I look for jobs there, I’m looking at cutting down to part-time or even just subbing for a while.

    I really hope things go well for you. Keep your chin up! I promise, it really does get better. Physically and emotionally.

    Tiffany

  5. BevMarch 8, 2012 at 6:50 pm #

    Hi,

    Is this all true about lialda? That it doesn’t really do anything after 8 weeks? I have been on asacol (same as lialda) for 12 years! Apparently, it is something I am supposed to stay on indefinitely, to stay in remission, which I never seem to be…and it costs me $300 a month! I take 12 stinking pills every day, and that is just holding me from full blown ugliness at the moment.

    What a joke this all is, that the doctors don’t really know what the hell we should be doing about this disease. Is everyone as sick of all this as I am??

    Pissed off again…lol,
    Bev:)

    • RebekaMarch 9, 2012 at 5:21 pm #

      Well it says something like “the efficacy of this product hasn’t been proven for a period longer than 8 weeks” which I think only means there are no studies that back it up…They just don’t have any official data how well or if it works after eight weeks. I don’t know if the same goes for Asacol. I mean they’re both mesalamine but something, I thought, must be different, because I’ve read about people who had success with one but not the other medication.
      Lialda worked in helping to get me in remission, I am tapering off rightnow, already been taking an underdose and I’m still fine. I believe it helped me at the beginning, but I don’t know if I’ll need it forever. I was surprised my doc didn’t suggest to put me on anything else though, because of that eight-week statement.

  6. JudyJune 2, 2012 at 7:30 pm #

    Drug companies have to do clinical trials in order to get the drugs approved by the FDA. Many of these clinical trials last only 8 weeks. So the drug company has to make the disclaimer that “the efficacy of this product hasn’t been proven for a period longer than 8 weeks.” It is pretty standard to remain on drugs like Lialda after you go into remission. There is some evidence that these drugs, taken long term, might help prevent colon cancer in people with UC.

  7. Johnny Drama
    JohnnyDramaJune 2, 2012 at 10:27 pm #

    Deb, what are you currently taking for medicaions? Are you done trying lialda.
    Its insane that that lialda is only designed for 8 weeks? I never heard of that, but it doesnt surprise me. That pharm companies are so dirty
    Rebeka, did you end up weaning off the lialda yet?
    Im taking lialda and plan on weaning off it soon, been on it way too long!!!
    Johnny Drama

  8. Kyle
    KyleNovember 14, 2012 at 9:58 am #

    Deb-

    I am so sorry you are having such a hard time. I am also a teacher and know the “awkwardness” of having to leave class because you are in a flare. I work at a middle school and though I don’t go into extreme detail with my students I do share with them about my disease and some of the symptoms that come along with it. It actually has helped my relationship with my students as most middle school kids still carry compassion for their teachers, don’t know how it would work in the high school, but I do a lot of work with youth outside of the school and have found high schoolers to have the same result.

    Being in a flare and having to perform infront of teenagers every day can for sure be draining. I know Adam shared with you in his comments about talking to your GI about your energy level. I know last Spring when I went into a severe flare, I was a zombie some days at school. Making it to the end of the day was literally like running a marathon.

    I am currently taking Remicade and it has seemed to really help in all areas of my UC, including my energy level. I was hospitalized for the month of August, so I was pretty low coming out, and it was a challenge physically to get back in the classroom. I am now on my 3rd infusion of Remicade and things really start to be coming back around. Have you ever been on prednisone? It is a beast when it comes to the side effects, but it has really helped bringing down the symptoms of my UC. I am currently being tapered off in hope to be only on Remicade after the first of the year.

    Because of the severity of my UC, Lialda was of no service to me, could be you need to move into a different medication. May talk to your GI of what your other options are for meds. I know Remicade is an expensive route but they have great assitant programs for people who have insurance, called “Remistart.”

    I was never a fan of meds, always been a natural route kind of guy, but sometimes you gotta trust the route your GI is advising to get you back to a place of “normalicy.”

    praying for you,

    Kyle

  9. KathyDecember 20, 2012 at 5:11 pm #

    Deb and others:

    I go to a GI specialist that told me I would be on Lialda for a loooong time! He said that after I am in remission (wonder when that will be) that I will start taking a maintenance dose. He said that he has a patient that has been on it for almost seven years… but.. I thought Lialda has only been out for five years??

    Anyway.. It can cause “gas” as a horrible side effect along with headaches. I get both :(

    The only thing I take right now is Lialda and Probiotics. I think I need to go in and find out if I am anemic and how my potassium is doing. I also think I should be on some vitamins or something else to boost my energy level.

    My prescription for Lialda was for 5 months, then see the doc and go from there.

    Not doing too good right now …
    Wish ya lots of luck!
    Kathy

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