Mom of 3 and Dealing with A Nasty Colitis Flare, It’s not Easy

My name is Michelle, I’m 35 years old and I have UC.

I was diagnosed in Dec 2005, one month after my daughter was born. I currently have 3 children (via c-section) (4, 2, and 1)…so needless to say its a little busy around here. I have had flare ups before but always have been under control with a short dose of prednisone. In April of 2009, i was 8 mo pregnant with my 3 child and in a flare. I was on prednisone for about a month and a half before my son was even born. Fortunately, he came early and things calmed down after. But here I am. I started the current flare in early June, started prednisone mid June and by June 30th I was in the hospital getting IV steroids and God only knows what else. I spent 20 days in the hospital, with one round of Remicade. After leaving the hospital on July 19th, I got my secomd round of Remicade that next Friday…to no avail…I thought that this stuff was suppose to work? So here I am, still on prednisone, asacol, bental (for th e cramping)…oh and I have thrush which is lovely (a yeast infection in your mouth, another awesome side effect to the prednisone). I wake up on the toilet, take my meds, feel like crap all day and go to bed thinking “my God when is this going to end?” I am seeing a specialist on Monday…I pray that they have something more for me. My doctor said that there is not much more he can do and the he has exhasuted all options…yikes!! I have tried the SCD…to no avail. I hope and pray that there is a solution to all of this. I miss playing with my adorable children and I feel like such a burden to my husband. I know that its “in sickness and in health”, but this is going a little far. Has anyone out there had flare-ups around pregnancies or related to pregnancies (hormones)? Just thought I’d ask, cause mine seem to fall right around when I’ve had my kids…
Thanks for listening.
All the best,
Michelle




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asacol, bental, children, cramping, flare, prednisone, Remicade, SCD, steroids, thrush, UC

8 Responses to Mom of 3 and Dealing with A Nasty Colitis Flare, It’s not Easy

  1. Maria hopkins August 1, 2010 at 6:55 pm #

    Dear Michelle, My 21 yr. old baby girl was diagnosed with UC 2 months ago. Remicade and Prednesone also did not work for her. She got thrush too and her tiny 5’2″ frame dropped to 88 pounds.I bought an e-book called self-healing Crohns and Ulcerative Colitis and called Dr. Klein for advise. With juice made from fresh fruits and vegetables, my daughter’s thrush dissappeared, her hemo went from 7.6 to 9.5 in 4 days 9 she received a red blood cell transfusion two weeks ago when her hemo dropped to 6.9) and she is in what we believe on the road to recovery….Please Miohelle don’t wait for the doctors to tell you the only answer is surgery…Oh and today is my daughters first day without Prednisone…She is med free and on the road to recovery.. May God bless you and help you make the right choice, He helped us..Maria

  2. Shirley NZ August 1, 2010 at 8:34 pm #

    Hi Michelle
    Sorry to hear what you are going through. Have been going through the same except for the 3 young children, not that I haven’t got 3 children,I have, but they are adults now.
    I have no faith in the medication, in fact I am taking myself off it gradually and am feeling some improvement. In saying that, I am now doing the Sherry Brescia’s (greattastenopain). I did the scd for 14 weeks and had no luck with it. Actually, I think the prednisone and pentassa are feeding the problem. It is worth a look at. Just google it.
    Shirley

  3. Anita Andersen August 2, 2010 at 12:25 am #

    Hey Michelle,

    Sorry you are going through all this. I hope you make a quick recovery and are in remission real soon.

    Have you ever tried Accupuncture/Herbal Medicine. I’ve had UC since October 2006. I’m 31 years old. I’ve had flare ups nearly every 6 months and last year nothing at all. This year I’ve had the worst flare up (all other flare ups, there was just a little blood no pain, not much running to the toilet, prednisolone just kicked straight in. I was diagnosed with left sided colitis). But this year wasn’t the case. Been up and down steroids since mid February. And then experienced a bad attack in June. Bloody diarrohea 8-12 times a day with urgency. This went on for a good 3 weeks then was in hospital for 12 days. I was 56.5kg and went down to 49.2kg. My symptoms improved with the IV steroids but not my inflammation markers, they were going up and down. Doctors were talking about surgery and did not want to try anything else (which I want to avoid if I can at this stage). They tested me for TB which was negative, think they were going to start me on the infliximab. Later on, they said something about me missing my 72 hour window opportunity and that I’m getting sicker, where as I didn’t feel sicker, I didn’t feel like I should, but I know I had made a big improvement. Later I found out from my specialist, that he because I did have a fever not to high, for an hour or so he didn’t want to use the drug, which I understand.

    They kept me on a liquid diet for 8 days, and of course soon as I started eating saw blood again. I was almost malnourished. And when I got out of hospital, they told me if my red blood cells were lower they would get me back into hospital and give me blood transfusion. I’m lucky that didn’t need to be done. Anyway the reason I’m writing to you is since I’ve been out of hospital, I have been going to Accupuncture twice a week, so I’ve had 4 sessions so far and have been taking some herbs, and I have been slowly improving. I was still seeing some blood, but each day it was getting less and less. I continued going to the toilet, once in the morning and once at night. Yesterday I did not see any blood and I only went to the toilet once. I still am not forming stools as yet, but my bowel movements are getting thicker. Today I’m feeling quite good, and have not done a bowel movement in over 24 hours. Which has not happened in over 6 weeks. And all this improvement is happening as I wean off Steroids, at the moment on 35mg. Other meds I’m on are Salofalk Granules 1.5g in morning and night and then the 4g Salofalk enema at night. So if you haven’t tried accupuncture, maybe it’s worth a go. I’ve also been avoiding, Wheat and Dairy. Have some sugar in my diet but not too much. What are your symptoms like at the moment and what medication are you on?

  4. Michelle August 2, 2010 at 3:08 am #

    CORRECTION TO MY POST!!!
    I didn’t use the SCD for long enough for it to take effect. I tried a couple of recipes with no success (of course I’m impatient right now…I want a miracle!). I had not read the book yet. So, in saying that I will be reading the book and fully trying the diet….

    Sorry for the mix up.
    Michelle

  5. Melanie Bryant August 2, 2010 at 5:25 am #

    I know how hard it is with small children, I was diagnosed while pregnant with my son who is now 2 and at the time my daughter was 3 and all I could do was manage to lay on the couch. The doctors told me most people don’t flare when pregnant but that’s when mine decided to show up so I think that pregnancy can bring on UC???? I felt like a lousy mother but there was nothing I could do. Luckily with prednisone and asacol while I was pregnant got me into remission before my scheduled C-section and was able to look after both kids with the exception of severe joint pain and stiffness in my fingers which made it hard to pick up my son. I feel for you as I know it is hard to look after small kids when in a flare as I have been in one for over a year, but just on the borderline of remission and frustrated I can’t get off the steroids. Hang in there and I hope you get better soon, and I hope my input on pregnancy and UC make you feel like you are not the only one cause you’re not! :)
    Melanie

  6. Danielle October 28, 2010 at 8:16 pm #

    Hello Michelle, I don’t know if you will see this as you posted a few months ago, but I am a pregnancy/post pregnancy flarer. I started bleeding basically at the start of my first pregnancy, and was diagnosed a couple months after she was born with UC, after my symptoms increasingly got worse after the birth of my first child. I was put on meds that made me too sick to keep them down, and strangely after stopping them cold turkey went into complete remission within a week. I stayed in remission for almost four years. Symptoms started with my second pregnancy. Was put on meds and symptoms disappeared for the remainder of the pregnancy-staying on the meds for the duration. Then at about 6 weeks post delivery the meds stopped working and symptoms began again-increasing over time. Another scope showed that the UC had spread quite abit from the first scope when I was first diagnosed. My GI specialist changed my meds to imuran which made me sick so I had to start. Right not I am on prednisone which is helping with the symptoms and letting me take care of my family. Now I am supposed to start remicade next week, which I am nervous about-but want to go into remission again. Weird thing though, this last week I have been feeling so much better on the prednisone and the mezavant, makes me wonder if I should wait to start the remicade in case the mezavant is finally starting to work. But I just wanted to tell you my story cause I have tried to find info on pregnancy relate flare ups or anyone else who thinks that is what their deal is too and haven’t had much luck. But I really think this is the case for me and not just a coincidence. My husband and I are thinking we only want the two kids anyway, but now I am terrified of getting prego again and possibly having the UC get even worse the next time around, as it has gotten worse from child one to child two. I hope everything gets sorted out for you soon though, as I know how you feel not being able to take care of your family and feeling like a burden to your husband. I guess its been a few months so hopefully you are better by now. Take care.

    • Michelle October 30, 2010 at 3:39 am #

      Danielle,
      I just wrote back to your response…I was writing for like an hr and then it didn’t go through….damn it!! how can I send you my email so that I can reply and have it go through?

      Adam, how can we do that? I will send you my email, but not sure I can do it through the site…

      Anyway, it was a good response too….damn.

      Hope you are well.
      Mcihelle

  7. sasha February 28, 2011 at 10:07 pm #

    how are you doing now michelle?

    I am in a very similar place. Typing from my bed where I spend majority of my time. I miss being a mom and I hate what this has done to my husband! It’s too sad to put into words…bringing me to tears. My flare has been going on for a year and a half (since I was 5 months pregnant). Just wondering if it will ever get under control…prednisone doesnt work and just found out remicade is no longer working.

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