Advice on Joining Sports Clubs …. Plus, is JUST BLOOD Normal for a UCer?

Intro:

35, married, 3 children, diagnosed with UC May 2013 so still trying to get my head around everything. Would like to get back to work as a teacher, after having a career break being a full-time mum.

Some more about me:

I really enjoy team sports, especially hockey. I’m missing doing team sports a lot and would be interested to see how other people cope with their symptoms whilst maintaining an active lifestyle.
I’m from Somerset, England originally, but have lived all over the UK, including North Scotland and now living on the Isle of Anglesey, North Wales. Moving to new areas doesn’t help in confiding to people about this illness!

Symptoms right now:

The amount of times I have to go to the loo have reduced dramatically, and I would say I’m “normal” at the moment, especially in the urgency of needing to go. So I’m really glad that bit is under control at the moment as that really messes up everyday living. However, i still have a fair amount of blood every day.

My Story:

There are 2 questions I would like to ask:

  1. As a newbie to UC, is it “normal” to have blood daily? I’m not sure if I’m meant to be going back to the dr, consultant or nurse if the urgency and diarrhoea has stopped, but the bleeding is still there. I’m a lot happier in myself because I can get on with life, but surely bleeding is not right?
  2. How have other people coped with joining sports clubs, knowing that you may need to dash off the pitch to the loo, or even worse, having a slight accident if you pass wind etc?! I’m fairly new to the area so I don’t know the members of the clubs well, so don’t feel like I can be that open and honest. (As an aside, I feel that keeping active will help my illness, especially in the joint pain I get sometimes, plus how exercise can help stimulate your bowel.)

Ulcerative Colitis has changed my life a lot in some ways. On quite a few occasions, my children have been late for school as I can’t get off the loo. My youngest who is not yet in school has spent a fair amount of time bringing toys and books into the bathroom while I’ve been confined to the loo. Not exactly fair on the children. I’ve been grumpy and upset while I try to deal with these things. My husband has been very supportive, although not fully understanding of the disease, same as me!

We have only recently moved to the area so trying to maintain friendships has at times been hard. I still haven’t told anyone locally, and feel it is time I did confide in some people but don’t know how to broach the subject. Sometimes I have had to cancel playdates / social occasions, because of the symptoms, and I worry that people will think I’m not a very reliable friend. Other times, I have been distant, for example on the school run, because I want to rush back to the safety of home and my toilet! However, I am desperately trying not to let this run my life, which is why some advice about how to confide in people and what to actually say but without mentioning all the gruesome bits, would be extremely useful.

Medications:

Currently on Octasa (mesalazine) 6 tablets (800mg each tablet) a day. Was on this previously, but apparently can only be on this dose for 8 weeks, so dropped down to 3, and then the diarrhoea and urgency came back. Am Ok at the moment, except that there’s still blood. Was on Laxido sachet every day but then read on the web that it’s not good to rely on them. So have dropped them to as and when I feel “blocked”up. Have changed my diet but am not ready to go on an extreme diet yet. Have been adding flaxseed to Ready Brek each day for the last 2 weeks, and think that has helped. Taking a probiotic yoghurt, but have just bought it in tablet form to see if that’s better.

written by Bonny G

submitted in the colitis venting area





10 Responses to “Advice on Joining Sports Clubs …. Plus, is JUST BLOOD Normal for a UCer?”

  1. PeterNZJanuary 20, 2014 at 3:12 pm #

    Hi,
    Yes. Blood is part of the deal mate.

  2. bevJanuary 20, 2014 at 3:17 pm #

    I wish this whole blood thing could be figured out. I was always told by docs that no amount of blood is ‘normal’, however, after 17 years with UC, I am thinking that a bit of blood here and there becomes the norm. If there are no other symptoms, then what the heck, right?

    There are a lot worse things than blood….

    :)

  3. HEATHEN HOLIDAYJanuary 20, 2014 at 4:10 pm #

    I find when I bleed I tend to have more fevers and joint pain, general all over fatigue. What about you all? Do you notice more symptoms when you’re bleeding? Right now I am still having these random stools… no blood except MAYBE a tiny blood clot here and there, and still have the urgency, mucus puddles that smell toxic, and poorly, if at all formed stools. If I do have a stool that is somewhat formed, it’s like gummy worms, they are so skinny. The only thing that has immediately got rid of the blood is upping my dose of prednisone along with not eating meat, or hard to digest foods, and eating mushy foods for a few days.

    Sorry for being so graphic. I HATE talking about this. So gross. LOL.

    • bevJanuary 20, 2014 at 4:24 pm #

      That can all definitely happen, but sometimes the ONLY symptom is blood.

      As if this condition isn’t confusing enough, right??

      For sure not one size fits all…it’s no wonder that nobody can figure out how to cure the damn thing!!

  4. jJanuary 20, 2014 at 8:06 pm #

    Blood is not normal. It means you have ulcerations in your intestinal lining and still have active disease. Your goal should be to achieve a state of remission with no symptoms. I have had UC for over 40 years and even when I have no symptoms a colonoscopy with biopsy will reveal minor inflammation. Our goal as UC patients is to be free of inflammation. Talk to your doctor about your symptoms and let your friends know that you are dealing with a chronic disease. People are very understanding. You might even get some offers from your new friends to help with childcare so that you can rest. I hope you feel better soon.

  5. Marq Rich
    Marq RichardsonJanuary 21, 2014 at 8:26 am #

    hey there, i was diagnosed in 05 and i was in and out of remission untill the meds completely stopped working.. went ahead and got the surgery in 2012 and that was the best decision i ever made.. if i knew the results of the surgery was going to be this great i would have did it a long time ago… i go to the loo 2-3 times a day some times only 2,,,, no more meds, and im back to a normal life… i tell ppl that this disease can seriously mess up your lively hood ,,,

  6. MarshaJanuary 22, 2014 at 10:55 pm #

    I was just wondering what amount of blood is normal too, sometimes all that comes out is just blood. It used to make me nervous now I;m so used to it it doesn’t bug my anymore. Do any of you take pain killers at all when in a flareup?

  7. Donna G
    Donna GJanuary 22, 2014 at 11:00 pm #

    You may find that too much exercise actually can worsen your symptoms. Your immune system is working over time and rest is very important, hard enough to get when you have 3 kids. I know that this is different for everyone but for me UC has been episodic and towards the end of a flare bleeding is the last indication to go away. At that point of a flare, when the cramping and urgency has settled, adding more protein to my diet has helped to stop the bleeding.

  8. SherJanuary 24, 2014 at 3:05 pm #

    Hi there,

    You will get different answers from everyone, as we all react differently. I from personal experience, when feeling well enough to work out do. I feel more energized and overall better. Joint pain goes away, I usually eat better. However, during a highly active flair, which for me is numerous trips to the “loo” as you would say, I rest. I let my body dictate what it needs. During those times I conserve my energy.
    If you are saying your only symptom right now is blood, with no pain, urgency, fatigue you should be okay to be active. But I would be concerned if it is a LOT of blood or just a trace amount. Personally when I changed my diet the bleeding stopped. I cut all gluten from my diet. It wasn’t as hard as I thought it would be. I still had UC symptoms, drastically reduced and no more blood.
    Seeing excessive amounts of blood is not normal, 11 years ago I had a blood transfusion because I let it go for so long… If you are losing a lot of blood, you usually feel it! Occasionally when I have a “normal” stool and see a small amount I do not freak out, just assume my intestions are fragile and like a scab that gets picked when something larger than what it’s used to passes through, does that make sense?

    ~ Sher

  9. Bonny GJanuary 26, 2014 at 12:47 pm #

    Thank you everyone for your comments. It really helps hearing about other people’s experiences. I’m almost at the point where I think a bit of blood is Ok as long as I can get on with normal life, as since I wrote the last post, I’ve been going through a flare up where the urgency is worse and being aware of where the toilets are is constant..not good! However, I do agree with J that if we were totally fine, there should be no blood. I currently can’t see that happening very easily, but we live in hope! Since writing the post, I have begun to tentatively mention my problem to a couple of friends. I’ve been pretty vague about it but I now know that if I was really struggling to take the children to school etc, I’ll be able to get some help.
    Thanks also for the advice about diet . I’m currently trying to get my head around the diet thing. I’ve stopped eating sugar and trying to avoid anything with hidden sugar, although since then, I’ve begun a flare up. I think that might be coincidence! I’ve also been trying to up my protein levels and have considered going gluten free. Thanks Sher and Donna G for those suggestions. I just don’t think I’m ready to try the SCD diet unless I get desperate. Anyone else had success with just gluten free?
    I have to agree with Sher on the exercise. I feel better when I get out and do something for myself. Since writing my message, I’ve joined a netball team, rather than my normal sport of hockey. The main reason being that we play in a sports hall near toilets! As soon as I started, I said I had a stomach complaint and that I might need to go to the loo in the middle of the game. They may have thought I was a bit barmy, but they were fine with it! And since I’ve started, I haven’t needed to go…it was more the emotional worry. Now that I’m in a flare up things will be different, and I think Sher and Donna G, you’re right. I need to rest while in a flare up. But thank you everyone who replied, plus Adam’s site, because it was you who helped me get the confidence to tell people which I think is vital in dealing with this disease emotionally.

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