iHaveUC.com's FREE email list, Join over 15,000 other subscribers

Ulcerative Colitis – A New Me

Introduction:

I’m a mum to 2 cheeky boys – almost 1y and 3ys – and wife to one (I live in New Zealand and have a degree in Marketing and Finance but choose to be a stay at home mum. I’m 29 and my Ulcerative Colitis story started at a young 17.

Colitis Symptoms:

Bloating, Cramping, Nausea, Mucous, Blood, frequent and urgent bowel motions, low iron, low energy, allergies to certain fruit and nuts, hayfever (the last 2 developed when I was first diagnosed), insomnia (just at flare ups), really low immunity

My Colitis Saga:

A 17 year old girl, who just got a boyfriend, who loved dancing, performing, long days at the beach, and nights singing with friends, who eas about to enter exams that would determine the rest of her life, does not want to be told that she has a bowel disease – let alone live with the reality of UC in all its glory.
I dont even think I told my boyfriend because I was so embarrassed, and it wasn’t until he heard that I was in hospital that I had to spill the beans..
Speaking of hospitals – from 17-21 I was in and out of hospital a good 7 times, varying lengths and once over Christmas. I was first diagnosed because I had a lot of diarrhea, for weeks, when the blood started I freaked out and told my mum, which lead to a colonoscopy, which lead to the Ulcerative Colitis. I had an amazing specialist who was very thorough in explaining it and what it meant, and was very kind to both me and my mum. I remember thinking why would anyone choose a profession where they have to look up peoples bums…

Although I knew I was stuck with this, I couldn’t quite come to terms with being someone who has UC

after many flare ups of varying degrees, I got them under control by de-stressing my life and by adopting the ‘eat right for your type’ diet and I was flare free (and med free) for 6 years. I happily forgot about UC and pretended like it didn’t exist in my life
2 years ago I had a sudden onset though and ended up back in hospital. I don’t know why it happened after so many years,
I had my first child by this stage and it broke my heart to have to leave him for a week and have others take care of him while my husband worked.

I hate UC, I hate that I have to know where the nearest toilet is. It has humiliated me to a degree I never thought possible – Trust me with a baby and a toddler and all the gear that comes with them on outings you don’t always get to the toilet.
I hate that after 12 years of having it the chance of cancer is ridiculously high.

I have never really come to terms with it – never really wanted to. But i have two boys now and ive been scared into acceptance. This is the first time I have researched it and taken my med as I should 4 x 500g mesalazine twice a day as a preventative

I feel a little bit lighter, I have living to the standards of ‘normal healthy person’ while running on the empty tank that is the reality of UC. i can give myself a bit of a break and find a new normal. for me I do need to figure out my diet, I do need to rest more, I do need to slow down when I feeling low

I do have one thought that

I’m interested in a repsonse on…

For anyone that hasn’t heard of Eat Right for Your Type, its a diet based on blood type – supposedly your body and absorb and digest different foods better or worse depending on blood type. I’m A positive.

When I followed this 80% (ill never claim to be perfect) i saw great results, bloating went down, allergies gone, flare ups down. I also noticed the foods that I was to avoid was ones that I naturally shone away from – red meats, tomatoes, orange juice, wheats, potatoes, breads, dairy etc..
When going through some posts on diet best for UC it did strike me that people where avoiding similar foods to what I did on the ERFYT (eat right for your type) diet..
If I was another blood type the food list would be quite different.. so my 2 part question
a) is there a majority of UC cases with A blood types?
b) if anyone is another blood type and has UC and has followed ERFYT which diet works best – a UC one or your blood group one..

Where I’d like to be in 1 year:

aware of what I can do for a healthier me.
On the toilet once a day instead of 10-15

Colitis Medications:

I find clorafoam enemas amazing when I have flare ups
Pentasa has always worked for me for an every day controller
HATE prednisone and will do anything not to have it ever again

written by Jolie

submitted in the colitis venting area




7 Responses to Ulcerative Colitis – A New Me

  1. Gail October 9, 2012 at 10:13 am #

    Hi Jolie, great question about the blood type. I’m not certain that there is a connection but think it’s a great idea to do more “unscientific” studies to see if we can find the common thread. There must be a reason. Disease doesn’t come from nowhere. I responded to Emil’s post, so I’ll try to keep this short. My husband and son with ulcerative colitis are both type O but positive and negative respectively. My family is British background and my siblings and extended family have many other diseases or symptoms related to gluten intolerance (GERD, fibromyalgia, eczema/psoriasis, arthritis, alopecia and mental illness). As I mentioned in my other post, I think there is a definite link to diet but that it is complicated because we are all probably just a little different. Also, problem foods are often hidden or disguised. In North America, we have mostly GM corn, soy & wheat – it’s a shame! Good luck to you. I’m sure with more research, you’ll find what works for you.

    • Jolie
      Jolie October 12, 2012 at 1:09 am #

      Hi Gail thank you for replying.
      I have since been back and opened my
      eat right for your type’ book to refresh myself on the diet and came across a really interesting read. I dont know why i didnt see it before – maybe i did and just didnt acknowledge it at the time..?
      Anyway I think its very interesting so will type out as much as possible

      Evidence suggest that patients with UC have elevated antibodies to opposing blood types. This probably represents the production of blood tupe-like substances from the mucins of the intestinal lining by bacteria in the gut.
      Depressing the levels of bacteria reduces the immune provocation. However, specific strains of the bacteria may be capable of degrading the mucin of colitis patients into antigens that mimic an opposing blood type, which are the true cause of the immune reaction in inflammatory bowel disease.
      For eg bacteria producing the B antigen in the mucus of a colitis patient who is blood group A will cause the immune system of the patient to mistake the body’s colon lining for bad blood transfusion and attack it as foreign.
      Gut bacteria are capable of manufacturing large amounts of both A and B blood group antigens by degrading colon mucin. Because of this it might be hypothesised that blood group O, the only bllod group to manufacture both anti-A and anti-B, would have a great incidence of Ulcerative COlitis.
      It is true thatblood group O, especially non-secretors, does mount a more intesice immune reaction than the other blood groups. in my own practice, I have found that indiciduals with blood group O who have inflammatory bowel disease tend to develope a more aggressive form than the other blood groups
      Blood group o tends to develope the more ulcerative form of colitis that causes bleeding with elimination. This is probably due to the lack of adequate clotting factors in I blood. Blood groups A, B, and AB tend to develope more of a mucous colitis, which is not as bloody..

      above is all from Eat right for your type – complete blood type encyclopedia by Dr Peter J. D’Adamo with Catherine Whitney

  2. KimberlyHI
    Kimberly October 10, 2012 at 7:28 pm #

    Hi Jolie,

    I too had to spend a few days in the hospital and luckily my husband was able to take time off work to stay with our 9 month old while I was there. But I was pretty bummed that this disease took me away from being a mom to my baby girl and I had missed her so much :(
    I read about the blood type diet quite awhile ago, I have not tried it though. I am A negative but I think I would be on the same diet as an A positive. I am not much of a red meat eater but I do tend to eat a lot of dairy, although recently I switched from milk to almond milk because I have been flaring and wanted to see if that would help. I still to this day am not sure if dairy makes my symptoms worse or not, sometimes it seems fine and others it doesn’t. I think flares in the past for me have been caused by a sudden increase in either fiber or stress. So it’s so hard to say! Sorry you aren’t feeling good right now. My flare has gone from 10-15 times a day down to 2-3 but I am on so many meds right now, including the dreaded prednizone. I hope you get better soon!

    Kim

    • Jolie
      Jolie October 12, 2012 at 1:15 am #

      Hey kim

      Arg I HATE prednisone – It such a horrible drug with hideous side affects.. Have you had many adverse reactions?
      I have always naturally shyed away from dairy – although in the last year or so had tried to have more yoghurt and cheese – both of which turn my stomach, its safe to say dairy definately is a no go for me.. Although i can handle acidophilus plain yoghurt… Fibre is also horrible and goes straight through me… and yes stress is a factor.. I find have two young boys I miss out on a lot of sleep and i do wonder how much of a role ‘exhaustion’ has to do with not being 100% gut wise…
      How long have you been diagnosed. Does having colitis change your mind of how many kids you want?
      Im trying to get healthy so I dont even have to entertain the ‘what ifs’, I dont want UC to be the reason I dont have any more.. (id love 4 kids!)

      anyway thanks for your reply
      Jolie

  3. Allison-3
    Allison Tranter October 11, 2012 at 3:55 pm #

    Hey Jolie-
    Welcome! On my way to Australia, I spent a week in Auckland about ten years ago and loved it… would love to see more of NZ in the future.
    Sorry to hear about your flare. My boys are 11 and 13 but I remember when they were 1 and 3 and they were quite busy and active. I was healthy as a horse back then so my heart goes out to you! At least now they can make me tea and look after themselves a bit when I am not feeling well.
    I am A- blood type and I followed that diet and vegan/vegetarian diets for years- I swear these diets contributed to my intestinal issues because it screwed up by blood sugar overall- I was never getting enough protein and fat. I was diagnosed with UC 2 1/2 years ago- I don’t take any medication and I follow more of a paleo style eating with some rice and beans and sweet potato. My meals are always based around a pile of vegetables and then 25% carb and 25% animal protein. This way of eating is the best I have ever felt in my life. I always feel satisfied and don’t crave sugar and caffeine the way I used to and it feels right for me.
    Anyway I def. so the SCD diet when I am having a flare because it is so mild and easy on the system while still nourishing. I make the chicken broth soup every single week and the yogurt too.
    I am just getting over a 2 month flare- it was pretty scary and awful but I am on the bight side now!
    Healing thoughts from the beaches of New Jersey USA.
    Allison

  4. shay October 12, 2012 at 1:43 pm #

    Hello. I have had uc since i was 16. After many tests and meds i too went into remission. But when i got pregnant with my last baby i began the longest flare up. That was two and a half years ago and i am now 27. i was never good with all the meds i was put on so when i was problem free i was happier. Now that i have it again the docs that i am seeing have put me on a few different ones that did not help. I am planning another scope at the end of the month. For the time being i know i need to change my diet.. only problem is.. idk what now. I have tried soo many diff foods and have no set way that my body reacts to them. It always changes so i am at a total loss. The eat right for your type diet sounds amasing. I have never heard of it before. Ill have to look it up.

  5. TiiniTete
    Tiinity October 14, 2012 at 8:59 am #

    Hi!
    Sorry to hear that you are struggling! But great Adam put up this site, always nice to read another story and realize that you are not alone (even though I would hope that no one had it).

    I wanted to give you some statistics: I am B+ and was checking the list of what I should eat and couldn’t really relate.

    I follow a diet (SCD/Paleo/GAPS based) which I find that my body is healing with: vegetables, meat, fish, eggs and oils (olive and coconut). Occasionally I eat nuts or SCD legal dairy but try to avoid it. I believe in eating high-quality foods and getting to know your body! If it is working for me? It’s not a quick fix, but I believe that in a few years I’ll be in a good shape and feel comfortable having children.

Leave a Reply