Ulcerative Colitis Tips


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Looking for Advice, Support & Wisdom…

Hannah FIntro:

I’m a 37 year old female, born in Scotland to English born parents, although my fathers lineage is Austrian Jewish. I am currently studying in my 3rd year of a degree in Civil Engineering.

Some more about me:

I am a rock climber, mainly indoors due to proximity to good outdoor stuff and having young children and limited spare time! Climbing helps me free the mind and keep my body strong. If I’m feeling low my spirits can always be lifted by a climbing session. The best thing about climbing indoors at my local wall is the close proximity of a toilet and the friendly faces.

Symptoms:

My symptoms are so bad at the moment that I have to wear faecal incontinence pants whenever I leave the house to mitigate any embarrassing accidents. Admitting I needed them and asking for them at the doctors was probably the hardest thing, related to this illness, that I have had to do to date.

My Story:

About 2 years ago after persistent constipation and rectal bleeding with mucous I was sent for a sigmoidoscopy and then a colonoscopy. My father and aunt have both died from colon cancer and the symptoms were a worry to me. I was diagnosed with Proctitis. Since diagnosis I have had what seems like continuous flares, which are getting progressively more severe. Symptoms now include bloating, mucous, lots of bleeding, cramps, and uncontrollable bowel movements which consist of mainly fluid and a solid motion. I am very anemic and taking a liquid iron supplement available in the UK called Spatone because the iron tablets prescribed here on the NHS make my constipation worse. As well as Proctitis I was diagnosed with a lung disease 6 months ago called Bronchiectasis. Up until these diagnosis I was an incredibly healthy person. I liked to keep fit by running and doing yoga but struggle to do these things now due to unpredictable nature of this dis ease. I find this affects my mental health as well as my physical fitness. I find it hard to run because I am normally so bloated and full of poo and don’t want to have an accident in public.

After two weeks of daily toilet accidents whilst out and about I have reached breaking point and have started taking Pentasa granules, after unsuccessfully having tried to treat it purely with the suppositories and foam enemas.

I believe that I can help my body heal through the correct diet but when I suggest that to my doctors and consultants I am met with skepticism. I find that very frustrating and it makes me question it myself. However, I have taken the bull by the horns and made an appointment with a nutritional therapist in the hope that she can help and support me through the necessary dietary changes I need to make to allow my body to heal.

Medications / Supplements I’m Taking/Taken:

Pentasa suppositories – never quite eliminate the symptoms
Azocol foam enemas – sting like hell due to bad hemorrhoids and impossible to keep in. Although helped clear the systems after diagnosis hasn’t helped since.

FOS, vitamin D and Probiotics – prescribed by my naturopath and provided me with my first ever true remission period where I even started to poo normally. The first time in about 9 years! It didn’t last pond though and after a few months at a really stressful point in my life the most recent and worst flare happened.

written by Hannah F

submitted in the colitis venting area




11 Responses to Looking for Advice, Support & Wisdom…

  1. Lydia October 10, 2014 at 8:30 am #

    Hi

    Definitely try probiotics and coconut oil (soft gels or capsules). And avoid or eliminate as much yeast based products as you can. UC has been linked to yeast (Candida) and coconut oil will mop it up. Since I tried this and kept to it I am no longer always looking for a loo or planning my day so ‘comfort’ stops are built in. Even going for a walk is a pleasure now. Do hope you find some help from the responses from some wonderful people. All the best.

    • Hannah Freireich October 14, 2014 at 3:30 am #

      Hi Lydia,

      Thanks for the advice. I have since done a bit if reading on coconut oil and it looks like it’s definitely something I will try. I have my first appointment with the nutritional therapist tomorrow and I have a lot of stuff to talk to her about. I’m pretty sure it’s Candida related. I crave sugar and notice my symptoms worsen when I have a binge. I know I will need to seriously alter my diet and really want to but at the same time am very aprehensive. Seems silly really!

      Hannah

  2. HEATHEN HOLIDAY October 10, 2014 at 1:25 pm #

    Hi Lydia and Hannah,

    Lydia…Good to know about the CoConut Oil, I use it for cooking, so wondering if it’s still effective against the Candida when heated? I have heard many theories that Candida might be a huge role in my left-sided UC. Which makes me wonder if I should be eating fruit if I have a problem with Candida? And what about CoConut Water? I am completely addicted to CoCoNut water and drink probably 5 cans of it a day. I absolutely love it, and wondering if that’s ok to drink if you have Candida?

    Hannah… hang in there, one thing I do when I am flaring, or start to flare is completely change my diet to something else to try to “trick it”.. I think maybe if it’s something I am eating that is causing the flare, then changing the foods I eat will help. Also, I had ONE decent GI doctor that told me eat “single ingredient items only” which means if you eat eggs, eat eggs and not eggs with that additive or this, or if you eat ham, eat ham with no added sugar or additives or preservatives, etc. This seems to help me. Basically, don’t eat anything prepared.

    I am flaring right now after 4 months of awesome bliss… back to liquid, bloody stools, extreme cramping and pain all day long, 24 hours a day, low-grade fevers and joint pain, and I am also anemic, but I enjoy anything that constipates me, because it’s less trips to the bathroom. Prednisone and Percocet is what get me out of bed.

    STRESS is number one factor of bringing on a flare, so you need to do whatever you need to do to get your mind off the things that stress you out and do something to calm down and make yourself happy. I know I get even more stressed when I’m flaring.. it’s a vicious cycle. Hang in there…

    xoxoxo, HH

    • Hannah Freireich October 14, 2014 at 3:34 am #

      Totally stress related. Eliminating stress is virtually impossible though. As a single parent and full time student it’s unavoidable! Especially during a flare. I’d be interested to hear anyone’s tips on how to reduce stress levels ??

  3. Emily October 10, 2014 at 2:32 pm #

    Hi Hannah,

    So sorry you’re having a hard time, but I think it’s awesome that you’re going to see a nutritionist- they may have you do some kind of elimination diet to see what foods make your condition worse. I’m not sure how you feel about trying other medications, but I noticed a major improvement in my symptoms once I started taking both oral medications (Lialda) and suppositories/enemas (Canasa and Rowasa). You may want to consider doing something similar if diet alone isn’t enough. Good luck!

    • Hannah Freireich October 14, 2014 at 3:40 am #

      Hi Emily,

      I’ll try anything once! I am using Mesalazine granules orally and a suppository at night which has made a slight change but not eliminated them completely. I was listening to some online presentations from Dr Axe and Amy Myers and I’m pretty hopeful about the positive effects of using nutrition and supplements after following an elimination diet.

      Hannah

  4. Arlene October 10, 2014 at 2:52 pm #

    Hi Hannah, So sorry to hear what a rough time you’re having. I would strongly recommend taking Turmeric with curuminoids and bioperine in it. It is a very powerful anti-inflammatory herb (from India). It is a Godsend for me!! I was able to get off the awful prednisone, and am in remission. I also take 1/2 tablet of 6 MP but it never worked by itself. It is an adjunct to the turmeric. I hope to one day go off of the med, haven’t tried it. Good luck!!

    • Hannah Freireich October 14, 2014 at 3:42 am #

      Hi Arlene,

      I’ve never heard of that before. How did you come across it? I will definitely do some research myself and discuss it with my nutritional therapist.

      Thanks

      Hannah

  5. Emily October 10, 2014 at 3:46 pm #

    Hi Hannah!

    So sorry to hear about your colitis related health struggles. I’ve had colitis for 10+ years and there have been some really low moments. It will get better. Keep the hope!

    I’ve come to accept that I cannot be healed through diet, exercise, or supplements alone- I need drugs. I need it always, for the rest of my life. It took me a long time and a lot of wasted years being sick to accept that. But you know what? Now I am so happy and living life (with fewer colitis related issues!). It was hard to get over the shame of needing medicine; of the feeling that I should be able to heal myself naturally. I accepted that I needed drugs and now I am so grateful for them!

    I think western medicine (drugs) go hand in hand with more natural remedies. I am careful about my diet. I avoid certain foods that bother me (popcorn, some raw veggies, some whole grains among other things). I take a good probiotic supplement and omega-3 fish oil. I make sure I get plenty of sleep. I stay hydrated. I drink herbal teas. I try not to ever let myself get to overworked or run down. I do yoga. Also, I was never able to go back to running- whenever I do try I start to go into a flare.

    I also take my medicine. Every single day I take my medicine. When I am in a bad flare (as it sounds like you are) I take prednisone to get rid of the inflammation as quickly as possible. I use Rowasa enemas. I take Asacol HD (4800 mg daily). I take MP6 (mercaptopurine- an immunosupressant).

    I am of the belief that you have to help heal your colon as quickly as possible (using drugs). Then you can use the natural stuff (diet and supplements) to support and maintain a remission. Find a good doctor, whom you trust, who listens to your concerns and is willing to work with you.

    Just my thoughts. Good luck! I hope it gets better soon for you!

    Emily

  6. Adam
    Adam October 11, 2014 at 1:46 am #

    Hi Hannah,

    I wouldn’t get too discouraged over what some of your docs are saying regarding diet. That’s 100% par for the course with many GI docs on this planet who were trained in the western medicine approach. I suspect you will hear a totally different story from the nutritionist.

    In the end, if the doctors you are working with have not found a solution for you that you are satisfied with, I think you’re for sure making the right decision to look for other treatment ideas.

    I myself was in the same boat you are in 6 years ago. All of the GI docs I spoke with, whether they were from Stanford University, UCSF in San Fran, the Mayo Clinic GI doc, and several others…ALL said diet absolutely on part in the disease…Of course I know that is not true now as diet has been my main treatment for 5 plus years and I’m completely satisfied with my results.

    I had to learn the hard way my first year after diagnosis, but my decision making led me to a great solution. Maybe you will find the same. Either way, best of luck with moving forward, and thank you for sharing. (((And, there’s been an awful lot of success from other UC’ers who’ve incorporated probiotics into their regimes. Might be something too for you to check out. Here’s a link to a popular one: http://www.ihaveuc.com/renew-life-ultimate-flora-critical-care-probiotics-reviews/ )

    cheers,

    Adam

  7. andy October 11, 2014 at 9:33 am #

    Double check that FOS supplement you are taking.

    FOS is a highly fermentable fiber, for some people with colitis its helps a great deal but with others(myself included) it is absolute poison. Both FOS and Inulin give me nearly instant flatulence and diarrhea. I guess it just depends what bacteria has poisoned the well.

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