Ulcerative Colitis Tips


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Appreciate Your Feedback – I’m Bleeding with Each Bowel Movement

recent picture of me with my cat!

recent picture of me with my cat!

Introduction:

32 year old female with conflicting advice from surgeons/ specialists which has left me frustrated. Never had serious complications except bleeding bright red with bowel movements and when I push I sometimes bleed only. The mucous has gone since my meds. I love life and stay as positive as I can. I have had symptoms since I was a teenager of bleeding and I remember being constipated as a youth quite often. I also have never needed to go for a bowel movement more than once every two days.

Some more about me:

Very much into health and fitness, working out every day at the local gym.
I am outgoing and friendly, very happy and stay positive.

Symptoms:

bleeding with each Bowel Movement. (only need to go once every two days, don’t have urgency)
Sore mid back – not sure if this is linked or from gym work?
Very tired of a morning.

Appreciate Your Feedback

I’m a 32yr old female and have had symptoms of bleeding since I was 18, getting worse in my 20’s. At 25yrs mucus and blood with every bowel Movement (BM) and had my first colonoscopy at 27, I was assured it wasn’t a bad case and it was only in the last 20cm of my bowel. I met my fiancĂ©e at 28, told him, eventually showed him blood and mucus after my BM so I had another colonoscopy and was prescribed salofalk 3000mg and azathioprine 150mg. this worked. In January of this year we moved interstate, we were under much stress with work and Dave’s ex-wife, also having young children involved. I was bleeding intermittently as a result had another colonoscopy. I was told it was in remission. I have been a bit slack on my meds lately, missing a few here or there, forgot scrips when I went away for 2 weeks at end of July. I have been bleeding, no mucus each time I have BM which is no more than once every two days. This week I went for a follow up apt since march, there was a different doctor reading notes from the last doctor saying that it was serious and that I needed to go on prednisone. My partner and I refused and are seeking another specialist for advice.

Questions:

  • How bad was your UC before going on the course of prednisone? I think that this should be a last resort and have been told so many conflicting answers by doctors/gastros.
  • I am going to a new specialist to get another opinion and have another colonoscopy in the next few months as I don’t think I am getting the right advise. Is it safe to have colonoscopies twice in one year?
  • What does everyone think causes this disease? I am healthy and fit apart from bleeding with my bowel movements…. which leaves me tired.
  • Does anyone have aches in their back due to this disease? If so, please explain?
  • What has helped others, anything will be appreciated?
  • I have never been admitted to hospital, at what stage do you need medical assistance?
  • Does anyone just have blood when they wipe after a bowel movement?
  • What causes flares for others and how do you describe a flare?

Medications & Supplements

Salofalk 3000mg, Azothioprine 150mg.
Tumeric capsules (self made) or teaspoon in water daily
multivitamin
just started vsl#3 (in yogurt each morning)

written by Jacqueline S




7 Responses to Appreciate Your Feedback – I’m Bleeding with Each Bowel Movement

  1. Adam
    Adam September 20, 2013 at 8:55 am #

    Hi Jacqueline,

    Here’s some answers to your questions you posted:
    -when I was prescribed prednisone nearly 5 years ago, I was very severe with UC (massive bleeding and 10 plus trips to the bano daily)
    -two colonoscopies in a year is unfortunately common for some UC’ers (and other folks) I haven’t done that myself, but many have and did fine
    – causes…million dollar question…(genetic pre-dispositions are hard to deny for some, stress, antibiotic use, diet and gut bacteria imbalances are some common ideas)
    -aches in the back…YES, very common. read this link from a past survey: http://www.ihaveuc.com/99-person-colitis-joint-pains-survey/
    – as for when to go to hopsital…personal decision. if you’re questioning it, maybe a good sign to go. (maybe others will have some better ideas on this one:)
    -blood when wiping…yes, I’ve had that in the past. very very common
    -what causes flares: read question #4 from the “flare survey” http://www.ihaveuc.com/157-patient-ulcerative-colitis-flare-survey-results/

    I wish you and your family the best Jacqueline (and the same to your awesome cat!)

    -Adam

  2. J September 20, 2013 at 10:10 am #

    Hi Jacqueline. Sorry to hear about your issues, it’s definitely not a fun experience. I’ll also give you my personal answers to your questions, but I had pancolitis, so what I experienced may not be the same as what you are experiencing. But I had to have surgery earlier this year just 14 months after being diagnosed, so I have an ileostomy right now.

    Also, if you aren’t already, I would suggest writing down how many bms you have each day or each 24-hour period and how many bms have blood. Personally, it was hard for me to tell how much blood I was losing, but by writing down the number of bms and bms with blood I could at least tell my doctor how long and how often I was bleeding in case that became a problem

    1. My GI said that I had severe pancolitis and I was started on prednisone just 2 weeks after my initial diagnosis and prednisone was the only thing that ever worked at all for me. I didn’t respond at all to asacol, 6-mp, remicade, etc.

    2. As far as I know, multiple colonoscopies per year are safe

    3. From my own research and from what my GI said in the past, doctors, scientists, etc. still don’t know exactly what causes UC, but I think they have a definite belief that both the immune system and genetics play some type of role in UC.

    4. I did have back aches, but usually only right before a bm and after I went to the bathroom my back felt fine again.

    5. Prednisone was the only thing helped me, but since I couldn’t stay on it forever, I had to find something else that would work and I ended up having to have semi-emergency surgery because I was at risk of my colon perforating.

    6. I agree with Adam, it’s a personal decision. But it’s your body and your health and it’s better to be safe than sorry, in my opinion.

    7. I often had blood on the paper when I wiped.

    8. I don’t feel like I had too many triggers that made my symptoms or flares worse, but I do know that when I drank soda if made my symptoms worse. Usually my flares had a lot to them – trouble sleeping, bleeding, weakness, lack of appetite, dehydration, urgency, 10-15 bms a day on average, weight loss, tiredness, pain

  3. Shirley September 20, 2013 at 1:57 pm #

    You get beyond this, I did .. thought I wouldn’t but I did, but feel so helpless while bleeding more blood than poo. I take amino glutamine and swear by it. Its not harmful but is efficient. Best of luck.

  4. Rob September 20, 2013 at 6:03 pm #

    For me prednisone helped me out of a 6 month long flare. I wasn’t hit with the terrible side effects, only slow healing from cuts and soreness. I was on it for 10 days and was in a mini remission for a month.

    My lower back started killing me about 2 months ago. This was the reason I went to the dr. because I thought I had a kidney infection. Turns out it was my UC and when I was prescribed prednisone.

    What scares me to finally go see a dr is when I am passing large amounts of blood and when I am not having a BM for several days. I keep track of my BMs and how much I am eating. If I am eating like normal and not passing anything but mucus and blood then obviously we are going to have some big problems. Hope this helps. Diet really helps you just need discipline which I lack.

    • Richele
      Richele September 21, 2013 at 9:56 pm #

      Hi Rob,
      I really chuckled at your last comment….”Diet really helps, you just need discipline which I lack.” I relate so much!! It’s so hard. I’m kinda glad I’m not the only one. ;)
      I have recently discovered that eliminating….(more like reducing) the amount of wheat, dairy, grain, sugar I eat has helped in the BM dept. I know this for sure because I had a donut this morning and have been gassy and bloated and gurgly all day. Gah!!!!
      I love glazed donuts so much…it’s a shame :(

  5. Richele
    Richele September 21, 2013 at 9:51 pm #

    Hi!
    First of all, I am very sorry to hear you are so sick right now. It will eventually get better…sometimes it takes a while to get out of a flare. SO unpredictable.
    Prednisone can be a great temporary fix, it has worked for me in the past to get me out of a flare, but unfortunately I am one of those who suffers all of the horrible side effects…and eventually I developed some kind of allergy to it. The last time I was in the hospital about a yr ago I had a pred IV and immediately broke out in hot itchy hives on my legs, neck, face and chest. SO, no thanks. I was in a pretty bad flare at the time, 10-15 bms/day bleeding, mucus, vomiting at times, crazy weight loss, fatigue, dizzy headaches, weakness, severe anemia, aches…the works.
    UC flare extraordinaire!!
    I do experience back pain, well actually it’s more like all over my entire body, hot throbbing joint pain. But I do recall having acute lower back pain that kind of comes and goes. Never really put two and two together until now. I wonder what that’s all about?
    Gosh, everyone is so different but also very similar. Trust your instinct no matter what you do. Like Adam said, If your questioning whether or not to go to the hospital…you probably should.
    Be careful and kind to yourself :)
    Richele

  6. Fred S
    Fred S September 22, 2013 at 4:54 am #

    I can totally relate to you Jacqueline. On my worse flares, I was in the bathroom nearly 20 times a day. The blood was scary as hell. Eating or drinking anything sent me back in to the bathroom almost immediately. Not to mention the constant fatigue.

    No matter what medications you are on, diet is critical to getting better. No gluten or dairy whatsoever. Avoid spicy foods, caffeine and alcohol. Warm beef or chicken broth (preferably organic) was a real lifesaver back then. Have a cup before bedtime, then again in the morning. It is very soothing and the collagen heals. (Look up how to to make a homemade bone stock, which is even better than plain broth!). Ginger and turmeric also help with the inflammation. You can even add them to the broth.

    I had the back pain as well. Still occasionally do. I believe the reason is because the colon is swollen and pushes on everything else around it. A warm compress at bedtime helps.

    For the record, I go the bathroom 2-3 times a day now with no blood whatsoever. Again, changing diet is key.

    Hope you feel better fast!

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