Ulcerative Colitis Tips


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Getting Fed Up Now

Introduction:

Hi my name is Mandy and I am 40 years of age and have had Ulcerative Colitis since 2009. my consultant said it is proctitis as its just inside the rectum, was diagnosed after sygmoidoscopy was have trouble keeping my bowl movements in!!! and having a lot of seeping and mucous and really bright red bloody stools, was given Asacol suppositires which helped a bit. but i am worse than ever now!!!

Some more about me:

I am from North Wales and work as a receptionist full time. I try to keep fit but am struggling with that at the moment, if I’m honest. I am 5ft 8 and could do with loosing a few pounds most people with ulcerative colitis seem to loose weight but i don’t seem to have?

My Symptoms:

I am currently running to the loo every couple of hours with intense feeling that i need the loo or I’m gonna have an accident! It seems to be about 30 mins after i eat anything i have to run to the loo and to be frank i just sit there spraying out blood!!! and sometimes very loose stools i do find the blood very distressing at times because it looks terrible. and the gas is just unbelievable.

Getting Fed Up Now

I am waiting for hospital appointment as i think i should be screened after 3 years however consultant doesn’t seem to think its necessary as he said proctitis stays in the rectum however what if its traveled, if he doesn’t screen me how does he know?

Also have very itchy skin and sometimes sore eyes, is this normal with colitis?

Just wish the bleeding would stop but it just goes on and on. I know flare ups can go on and on but this has been 5 months now and no sign of it stopping.

Just wondered if anybody else is having similar issues as the spraying of blood every couple of hours is just awful my family are wonderful and they do understand and so is my lovely man of 16 years but even so the wind is dreadful at times but i really can not help it.

Sometimes get bad back and get like a pulling pain on my left side but since this flare up i haven’t had much pain in my side, i seem to either have flare up and no pain or no flare up and lots of pain.

I have alot of bloating and my stomach some days makes me look about 5 months pregnant!! i find daily tasks a bit daunting sometimes because I’m constantly looking where the nearest toilet is, don’t really go too far can manage about an hour before i need the loo as long as I don’t eat anything beforehand, if i eat something then 30 mins later I’m back on the loo, cant really remember the last time i had a normal Bowel movement, as its watery or blood, really hope others can help and sorry for being so descriptive but i know others that share the same symptoms will be pleased that you are not alone.

Medications:

i have had Asacol prednisalone and messalane which I’m taking now but nothing is working,

written by Mandy

submitted in the colitis venting area




9 Responses to Getting Fed Up Now

  1. Nick May 14, 2013 at 7:44 am #

    Hi Mandy, i am sorry for your flare-up(which sounds too mild for what it is, i know). I seem to be at the begining stages of a flare up myself. i was doing pretty fine on Remicade actually for about a year and a half, but i have since let the medicine fully get out of my system 3 weeks ago. My reason, is to try to find that “natural cure/remedy” that doctors say does not exist, yet i hear success stories all the time on the web. my mom sent me a story about a guy in almost the exact situation as i was in(same age, same symtomns, diet) and he chose to not go on medication and deal with it naturally. he is a success story that recently motivated me and i am trying it. call me stupid but i am fed up with all the meds i have been on since 2010 with many ups and downs, knowing none may help for long. so i am right there with ya as we all are/have been, with the blood and the urgency and it sucks. its a spirit dampener for sure, but all we can do is be positive!

    Currently i am just trying Bev’s advice with the Probiotics and L glutamine. i started off the cheap way last friday(lol), and this week am about to upgrade to the better versions. i wish you luck to find something! What is your diet like?

    • mandy May 14, 2013 at 8:43 am #

      Hi Nick my diet is varied but quite healthy, been to the docs today and have dropped 1/2 a stone which i am not surprised i am trying probiotics as well so fingers crossed it helps, thank for responding, good luck!!

  2. VG May 14, 2013 at 8:32 am #

    Hi Mandy,

    I once had a flare like that and what helped me was continuous use of the topical meds- rawasa and canasa… on top of the oral stuff i was taking. also make sure that you are always well hydrated. water water water.

    • mandy May 15, 2013 at 12:43 am #

      Hi thanks i dont think i drink enough water will start to from today now have lost 1/2 a stone in just a couple of weeks so i dont want to loose vital fluids as well, thanks for the advise :-)

  3. Jen From UK
    Jen May 14, 2013 at 11:12 am #

    Oh Mandy, sending you a big hug… This never ending flare-up crap is no joke! You have my utmost sympathies and I really feel after 5 months of bleeding etc you need a second opinion. Especially if you are on prednisone. My flare up isn’t under control after a year but its my first flare and the gis are closely monitoring me. I too have the gas/spraying blood thing if it helps but I have uc up past mid transverse (that’s as far as they dared scope)

    You aren’t alone, and I believe things will get better :-)

    • mandy May 15, 2013 at 12:47 am #

      Hi jen big hug right back at you!! its so nice to hear that i am not on my own with this horrible illness, i am waiting for my hospital appointment to come think they are gonna do the camera again (oh what joy) started taking probiotics as well now to see if that helps.

      hang in there lets hope we are all better soon :-)

  4. Ken May 14, 2013 at 5:03 pm #

    Mandy,

    I’m a 46 year old guy who has “left sided” UC. I was flaring for 8 months with all the symptoms you describe. I was taking Asacol, then Apriso (pretty much the same stuff) but never felt any relief. I took the advise of some of the veterans on this site and started taking supplements, in a last ditch effort to avoid prednisone.

    I’ve had major success with EVOO, a strong probiotic, and L Glutamine. I also take flax seed oil to reduce inflammation, and a daily vitamin, for vitamin D and folic acid.

    I am an avid runner, and can now run for a couple hours without issue. No urgent issues period since December 2012. I love running, and am again competitive in my age group in races. Did I mention I like to run? Biking too!

    Read some of the success stories here, and try some of the supplements if that interests you. Once I started, I felt better each week, and within a month I felt pretty much normal. There were a couple days here and there where I questioned its value, but after a month I was a believer, and stopped the Apriso, with no bad effects.

    I don’t follow any diet, though I try to eat healthy. I don’t know of anything that effects my digestion any longer, but I do stay away from hot spices (couldn’t tolerate them before UC).

    Good luck and I hope you feel better.

    • mandy May 15, 2013 at 12:54 am #

      Hi ken thanks for the good advise i never thought about flax seed oil to reduce the inflamation i will be getting this as soon as possible will try anything, i dont eat spicy food either (but im the same as you i dont know of anything that affects my digestion either)
      its great that you can run for a couple of hours without looking for the nearest loo i can go about 40 mins at the moment,(i am not a runner) and now having to get out of bed during the night a couple of times.

      thanks for all the advise ken and keep on running!! :-)

  5. Wendy
    Wendy May 21, 2013 at 8:01 pm #

    Hi Mandy,

    I am in a bad flare now. It is getting better though for the past three days I’ve been taking the probiotic Bev talks about and L-glutamine in addition to my regular regime of astaxanthine, spirunella, chlorella and melaleuca multivitamins package (vitality total). The probiotic and l-glutamine seem to be really helping. Before I started taking them I was so exhausted I could sleep all day and have no problem with that. Now, yesterday I’ve re-carpeted my stairs by myself. I can go 9 1/2 hours without using the toilet to spray crap and the blood is dramatically less. I lost seven pounds when I was ill. The probiotic and l-glutamine helped me. I dreaded terribly going to the doctor because all he’ll do is prescribe me prednisone. This is only day three of taking the supplements I added. I had also slowed down with the regular regime of vitamins and supplements and ate bad things like meat (which I shouldn’t touch as they always give me flares – any kind of meat, and nuts). So now I’m back on the bandwagon with two added supplements. My system is still not doing well, but far far better in three days and I KNOW far better than if I had gotten drugs from the doctor.

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