Help Getting Better

I work as a Community Outreach worker and work with the elderly. Live in Nottinghamshire and I am married with 3 wonderful children and a lovely grand daughter of 9 months who we both adore.

My Ulcerative Colitis:

I was diagnosed either in 2003 or 2004 after having 3 months of continual going to the loo and finally plucked up the courage to see my doctor.

After being referred to the local department at one of our hospitals I was diagnosed with procitis which now appears to have spread.

Presently I am having a very miserable time of it and not sure what to do re eating foods? Any suggestions would be appreciated. I am eating chicken, plain boiled potato and the odd carrot and the odd boiled or poached egg. I understand milk doesn’t always help and as I love my cuppa have only the one in the morning which is fatal as that goes straight through.

My doctor prescribed asacol tablets at 400 mg 6 a day and colifoam which I have tolerated for the last 2 weeks and seen no improvement as my bowel is now worse so I returned to see him yesterday and stated no more medication and send me back to the hospital please!!!

I am waiting now for my appointment on 23 February and would appreicate it if anyone out there has any suggestions on how I can get better?

This is a debilitating illness which has left me living in my bedroom between snatching what sleep I can and numerous trips to the loo I don’t have the energy to do anything else.

The reason I am typing this up

is that someone else must be in the same boat as me

and I would like some reassurance

that this episode will get better.

This is the worst I have felt in the past 8 years and I can only hope nothing ominous is occuring with presently what’s left of one very irritable bowel that needs to be fixed so I can return to work and look after my elderly clients.

written by Adele

Submitted in the Colitis Venting Area




9 Responses to Help Getting Better

  1. tom February 3, 2012 at 8:05 am #

    adele,

    Hi im probably not that far from yourself i live in derbyshire :-).

    My advise would be take probiotics, fish oils and ginger. These have seemed to have a positive effect on my bowels, as regards to food cut out the obvious like fried and fast food. but also iv found bread can have negative effects aswell as pototoes inface i try staying away from carbs as they are hard to digest. You should be really looking at healing foods such as your oily fish like tuna, dark green veg, and i try to eat a lot of spinach and good proteins like eggs and chisken. if you want any other help please let me know, hope you get better

    kind regards

    Tom

    • tom February 3, 2012 at 8:07 am #

      sorry about the grammer errors (im being sneaky at work typing in a rush).

  2. DocWithUC February 3, 2012 at 9:46 am #

    Here is my 2 cents. You may need a short course of prednisone (3-4 weeks) to just break your flare. Other things you can try – in line with what you are already doing:

    1. Probiotic
    2. Stay hydrated with water – no soda
    3. No raw vegetables during your flare
    4. Like Tom said, cooked dark green vegetables can be valuable sources of nutrition
    5. An essential multivitamin is useful to take.
    6. No alcohol or caffeine.
    7. Try to get as much rest as you can
    8. Try to go for a short walk (near the bathroom of course) to keep you from getting very de-conditioned

    Understand that the key at this point is to break your flare. Hope you feel better soon!!

    DocWithUC

    • Peter Rye February 4, 2012 at 6:31 am #

      Hi DocWithUC

      I still have active UC & I have got an appointment to have a Colonoscopy in a few week’s time. The Hospital have sent me a sachet containing an Enema which I need to take the day before to empty the Colon. However, on the back of the sachet it clearly states, ‘Do not take if you have active UC’ !!!
      I am confused as to what I should do. Your advice would be greatly appreciated !

  3. flavia February 3, 2012 at 5:16 pm #

    Hi Adele,
    my name is Flavia. My suggestion to you is to follow the SCD diet from now. Therefore, stop eating potatoes or starch or any complex carbs, and stick to boiled meat and veggies. No eggs. Some fruits, possibly just very ripe bananas. Drink some lemon juice with filtered-boiled water every day for vitamin C which is lost in cooked fruit/veggies. Drink peppermint tea (it contains essential oils, but in very minimal concentrations), and avoid all sources of caffeine, chocolate, and tea (which contain alkaloids counteracting the effects of polyphenols..in IBD we don’t want to expose ourselves to any other chemicals than just nutrients). If you’re making smoothies-blended fruit juice, make sure you keep the mixture in your mouth like chewing, ’cause this helps fodd exposure to salivary enzymes (lysozime for anti-bacterial action, and amylase for complex sugar breakdown). Avoid raw veggies, ’cause you we can’t break fibers (soluble and unsoluble) easily and this would feed the commensal bacteria. Eat some aged cheese (from pasteurized milk) every 2-3 days for calcium intake. Get paranoid about hygienic behaviours and just drink water previously boiled. Avoid alcohol in all forms (which cause oxidatative state). I personally do not recommend probiotics or yogourt during the active phase, I was sick for months while trying to use home-made yougourt using just legal strains. Therefore, after antibiotics I used just Lactobacilli reuterii in tablets for 1 week. I can’t think of any other tips right now, but this is pratically what I have been doing for few months and solved my problem completely, still following the basic SCD scientific rational and a good nutrition combination (Im a graduate in human nutrition). Scientific literature is providing some research, the shocking thing is that GI read very little or apply medical protocols based on pharmaceutical indications! Boswellia serrata resin seems to help in IBD, but I want to read more on possible side effects and body clearance (’cause if it may become toxic at hepatic level). Hope this helps.

    Myself: I had a mild proctitis in August 2010 and then a 7months flare in February 2011 which ended up in pancolitis. Since then, I was diagnosed with severe active UC. Still debating with doctor, though. I pushed my GP and 12 gastroenterologist to test for pathogens in my guts, and in the end they found me with an infection by Helicobacter pylori. Not sure if I had some other pathogen or virulent-commensal strain, I was on and off antibiotic for 4 months. I stopped medications before testing for Hp(oral mesalazine 1.2g/day, supossitorie and aenemas 1g/3x week, prednisone 60g tappered in 3motnhs) which gave me complications, weight loss of 6kg in 2 months!, and caused colon dilation with risk of toxicity! I was also concerned about my bone density, so I had it check before starting prednisone which cause impairment of adrenal gland activity, and menstruation pains which reactivatetd inflammation every months. Bloody meds (and Docs!). After clearing the Hp and sticking to SCD before (2months) and after (4months) the Hp therapy, all symptoms disappeared completely! Recovery was very slow but it happened. Menstruation pain is also solved, possibly managed by the diet and by the licorice-whitania-ginseng preparation in tablets i’m taking in thosed days to keep inflammation-respone-immuno-mediated under control. Recently, I went to check with GI specialists in Australia: they said that at the next flare, I will have to take immunosuppressants (azathriopine). Forget about it! They agreed that meds are not useful at all in my case (I wonder..maybe just a trick of the pharmaceutical industry to chronize patiens by curing them with aspirin-modified drugs? Such it is mesalazine). We bet I will keep good health for next 6months-1year to disprove them re. idiopathic (=unknown cause) form of colitis. Hp is not correlated as a cause to UC or IBD, ’cause science hasn’t proven yet the direct involvement. Whatever. I made my own hypotheses and I’m studying the topic myself.

    greetings from an Italian (dreaming pasta and pizza every night!) living in Aussie
    flavia

  4. Kathy Prieto February 3, 2012 at 5:41 pm #

    Not just any probiotic. Need huge dose. I like VSL #3 DS packets. Thus is prescription dose. My husband took 2-3 packets a day during flare up. If u can’t get prescription strength, u can order non l
    Prescription on line. VSL packets but u need to double it since on line dosing is half strength of prescription. Need to gradually increase the dose- add another packet every 3 days or so. SCD yogurt (need to make it urself) had helped too. Or u can try coconut yogurt- bit check it- too much sugar in it can hurt. Husband also dis well with 3 tablespoons of coconut oil a day.
    Kathy

  5. Bev February 3, 2012 at 6:16 pm #

    Adele…I can assure you that this episode WILL get better. I see that Doc advised a short course of prednisone. I am thinking I may try that as well, just to get my same flare up as you are habing, nipped in the bud. Then, onto that healthy list he wrote. He really seems to know of which he speaks, Doc does.

    I am afraid to take prednisone (steroid) because I have a horrible time weaning off it. I was on it for only 5 days for pneumonia about six months ago, and on the 6th day to the 9th day, after I had stopped, I felt absolutely rotten! However, that five day treatment for the pneumonia, smartened my colitis flare right up. Of course, I didn’t take it long enough, and my flare all came ‘rushing’ back a few days later. I don’t know if prednisone is the answer. It seems people take it, and it does what it says on the tin, but it doesn’t keep the flares away for long. That is my problem with it. Of course, everyone is different. My body responds to drugs very well, let’s just say, but tehy make me feel very UNwell, if you know what I mean. If there are any side effects, I get them threefold, and then some.

    Back to ‘will this ever end”…it doesn’t seem like it ever will, when you’re in a bad flare, but I have had four in 15 years, and even tho this present one is the longest one, I am confident I can knock it on the head, with the high doses (12 pills per day) of asacol that I am taking, and a very strong probiotic. I feel a bit better these last few days.

    Hang in there, and keep visiting your new friends here…especially Doc. I feel like we can all find alot of wisdom and comfort in him.

    Bev:)

  6. Melissa Lawler February 3, 2012 at 10:18 pm #

    You are not alone!

  7. Peter Rye February 4, 2012 at 7:17 am #

    Hello Adele,

    I live in Suffolk not that far away from you ! I am sorry to hear of your condition but do NOT despair!
    Things will get better with time. I assume that you are seeing a Gastro Consultant Doctor and he has got you on ASACOL 400mg 6x per day. I am also on MESALAZINE, but my medication is called PENTASA and I am taking 8 x 500mg per day which seems a stronger dose than yours, but since being on this since March 2010 have had NO bleeding at all which is very reassuring. A Hospital Dietician recommended LINUSIT GOLD, which are Golden Linseed Seeds which are rich in Omega 3 fatty acids & fibre, gluten free & lactose free and I have been taking 1 desert tablespoonful in a Probiotic Yoghurt per day for the last 2 weeks & I have noticed an improvement ! Well worth trying some ! Incidentally have you joined Crohn’s & Colitis UK ??? They have a website: http://www.crohnsandcolitis.org.uk I have been a member since 2010 and I find them very helpful indeed.
    I Wish you all the Best in the future.

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