Ulcerative Colitis Tips


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They Say Standing on a Lego Is Worse Than Childbirth…

…They obviously never had UC!

Meet Jen:

30 yr old mum of 2 from UK diagnosed in August with moderate to severe pan colitis during my first colonoscopy. Into my 6th month of this horrible disease!

-My life’s been on hold for a bit recently but I love photography and painting. And a good party!

My Symptoms:

Currently 4-6 very loose stools a day, cramping, gas and this week the blood has returned!

My Colitis Story:

Shortly after my second son was born I started getting cramps/pain in my left lower abdomen. I breast fed him until he was 8 months and a week after that the diarrhea and vomiting started. I put it down to food poisoning or a bug. Saw a general practitioner and she said I had gastritis. I lost a stone in 2 weeks. The d continued so they said post irritant ibs. And stress ibs as I was nursing my terminally ill mum. Then the blood started. They said hems but the amount was scary. I felt so exhausted and the urgency was as you all know unbearable. I ended up being taken by ambulance to hospital for iv fluids and antibiotics and iron as anemic. Docs faffed around for ages with stool samples etc and blood tests. Then in August I saw the gp I’d seen in may and she organized a colonoscopy 3 days later.

I kept a food diary and have eliminated gluten as wheat is a sure fire bleeder! Chocolate and caffeine are out too.

I’m exhausted with a one and four year old and living off chicken/fish/potato/avocado and carrots. Yogurt is ok too.

I lost my mum 6 weeks ago and my symptoms have been ok. She had an awful last 3 weeks but a ‘good death’ I’m tapering of the dreaded pred and down to 5 mg- hence the blood I think! Can’t find probiotics with more than 20 million in UK? Anyone any luck?

I know it’s probably irrational but my mum had colon cancer and it spread over 8 years to her liver, lungs and kidney. Then blindsided us by going to her brain. I’m terrified of colon cancer and leaving my boys. In some ways I think I’d prefer a colectomy now and limit the risk.

Just after some words of wisdom and advice.

Colitis medications:

1200mg mesren mr (mesalazine)
5mg pred down from 40mg
Lansoprazole
Imodium 1 per day to give the mesren a chance on gi instruction
Cocodamol for the pain

written by Jen

submitted in the colitis venting area




pan colitis

14 Responses to They Say Standing on a Lego Is Worse Than Childbirth…

  1. Gemma November 29, 2012 at 6:28 am #

    I’m in the Uk and just bought good probiotics on amazon.

    I’m on azathioprine too, that might be the next step or some kind of 6mp.

    Best wishes

    Gemma

  2. bev November 29, 2012 at 3:57 pm #

    Hi Jen…

    Please keep trying to find a good 50+ billion probiotic. You just have to! I am convinced that they work due to my complete remission using them. I got off all the meds. The meds made things alot worse for my UC symptoms and I could not tolerate them. I too have moderate to severe pancolitis…but all symptoms are now gone for 10 months…thanks to probiotics and L-glutamine. You should get some of that as well, and start taking it. It heals the mucosa and hence, the bleeding stops!!

    Cheers,
    Bev in Canada

  3. Natalie November 29, 2012 at 5:25 pm #

    Hello Jen –

    First of all….I just want to say how very sorry I am to hear of the loss of your mom. I, too, lost my mom to cancer so I know exactly what you have been going through. May God comfort you at this most difficult time.

    As far as the probiotics, my GI had given me some samples of VSL#3 and they were just too strong for my system. I heard that they have 450 billion live cultures in them. So, maybe you are better off starting with a lower strain. My doctor had me stop taking the VSL#3 as my stomach was bloated and I had considerable pain. I went to a vitamin store in my area and asked for the brand that Bev takes but they didn’t carry it. The man at the store suggested trying their brand which is called Probiotic Acidophilus and is an ultra potency capsule with 10 billion live cultures. Let me tell you….I have seen a BIG difference already and I just started taking them a month ago. So, I wouldn’t worry too much if you can’t find the 50 billion strain. Start out with a lower one and, if you tolerate it, you can always move on to a larger strain. I am pretty happy with the 10 billion and probably will continue to take it. I no longer have any urgencies and I eat almost EVERYTHING!! Good luck Jen and keep us posted. :-)

  4. vicky November 30, 2012 at 12:51 am #

    Have you talked with your GI about the stronger meds like 6mp, humira, or remicade? I did try remicade and humira unfortunately with no luck. I had my colon removed in May and my takedown surgery w a J-pouch in July. I am happy that I did try pretty much everything I could before going through surgery. I just wish one of them would have worked. Good luck and like I said you should discuss all of those options before thinking about surgery. But also don’t be afraid to have the surgery if it does come down to it.

  5. Jen From UK
    Jen November 30, 2012 at 2:08 am #

    Hi!

    Thank you so much for your responses! I will check amazon and keep searching for the probiotics- I really hope they can work for me!

    I am seeing the gi in a few weeks and will bring up stronger/different meds. I know surgery should be a last resort but its good to hear its not to be dreaded.

    Natalie I’m sorry about your mom too, cancer is a horrible disease xxx

  6. Natalie November 30, 2012 at 11:46 am #

    Thank you Jen. Yes…cancer is a horrible disease. It was so very sad to see my mom suffer the way she did. That’s why I pray to God that I never get colon cancer. I would never want to have to suffer like my mom did. She didn’t have colon cancer….had multiple myeloma which is a cancer that affects the blood and bones….extremely painful.

    I hope you find the probiotic that’s right for you. Amazaon is a good choice to look for the 50 billion strain that you want. I hope you find something soon and will be able to start taking it. Keep us posted Jen.

  7. Jen From UK
    Jen December 2, 2012 at 2:05 am #

    Well I’ve started the lglutamine and a 20 billion probiotic until I can get my mitts on a 50… Fingers crossed!

    I was advised to take activated charcoal, but am worried it will affect meds… Anyone any experience? Many thanks x

    • bev December 2, 2012 at 7:57 am #

      Go Jen! I’m crossing my fingers for you…HARD!!

      I have never heard of the charcoal so I can’t advise you on that one. Do you really think you should try so many things at the same time? The probiotics and L-glutamine are probably enough to try at first. It’s so hard to know what works if you try too many things at once.

      Cheers:)

    • shelly in maine December 2, 2012 at 12:44 pm #

      My dad took charcoal once and a while to ease gas pain/discomfort. Not sure about long term use. Seems perhaps you would consider an enzyme? Also be careful about the Imodium…it can be counter productive. Look at SCD and keep upping the probiotics.
      Good luck, Shelly

  8. Jen From UK
    Jen December 2, 2012 at 12:31 pm #

    Thanks Bev, I’m not taking the charcoal yet if at all- going to always for some more advice :-) and check with gp x lglutamine and probiotics are def enough to start with!

    • bev December 2, 2012 at 1:39 pm #

      I am wishing you all the very best of results, Jen! I wanted to try so many things when I first started ‘trying natural things’, that I still have not tried them all! I haven’t needed to…thank goodness…not yet anyways:)

      What Shelly says about charcoal…now I know what it’s used for! Thanks Shelly. I am constantly learning…I love this site!!

  9. Jen From UK
    Jen December 5, 2012 at 2:50 pm #

    Well I had a crap weekend and Monday was a nightmare with 4 huge bowls of blood in an hour and incredible pains… So I’m now back up to 10mg of pred :-(

    Lglutamine might have started Working too as no blood since this morning :-) and pred didn’t stop it that quickly before?!? Probiotics certainly don’t seem to be making thigs worse so alls ok!

    Hope you’re all faring well x

    • bev December 5, 2012 at 3:30 pm #

      Good Jen…keep taking both the probiotics and the L- glutamine. Don’t give up too soon…it can take time to heal the colon!

      Bev
      x

  10. Jen From UK
    Jen December 5, 2012 at 10:48 pm #

    Thanks ill give anything a proper go if it might be helping! Thanks Bev I just want off pred so badly I feel a bit down about it but having bloods don’t today to check fbc and vitamins etc x

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