Feeling Alone But Hopeful – Hemorragic Rectal Colitis

Hemmorgenic Rectal Colitis Comic

Introduction:

My name is Cécile, I’m french (i hope you’ll excuse my english!), 34 years old, I’m separated and i have 2 children which i take care alone. I live alone with my my two children aged 5 and 7, which is very hard to understand for them. I also feel alone because my family does’nt live where i live and i often feel like anymay, i have to cope with my problems on myself. UC is something that you don’t talk so much about, no doubt it is because UC is named “hemorragic rectal colitis” in french… can you imagine saying to people: “i have hemorragic rectal colitis”?! i guess people instantly have dirty images in the head, so i usually say i have crohn’s disease, just because i feel ashamed telling the name of my illness…

My Symptoms:

i feel OK right now thanks to SCD diet, that i began in july. I feel quite normal, sometimes a little diarrhea, but juste once in a week and only one time in the day… i have no cramps and no blood rignt now, and most of all i feel like i’m not going to die soon!!!
and i stopped all medication when i started the diet.

My Story:

I was diagnosed UC about two years ago. I had a lot of bleedings and the diagnosis was quick. Then, for more than a year and a half I have been in flare, a flare more or less intense.
I’ve been given Pentasa,

During last winter, my pain was so strong that I took up to 8/10 painkillers a day, I slept about 15 hours a day and I was still bleeding, I was so exhausted physically and mentally that I really thought that I was going to die soon. It was like a premonition. I felt old and at the end of my life. Drugs did not change anything and I was more and more bad. But I did not want to see my gastroenterologist because I was afraid he could give me an immune suppressant or tell me about surgery.
This lasted for several weeks, until my sister told me to ask a saddle analysis, just out of curiosity. In this analysis, it was discovered that my gut was colonized by a parasite, an amoeba, so I had amoebiasis, ie it is the same thing as dysentery in Africa! However, I’ve never been to Africa, and I was in France for months. There, it was a huge shock to me. I thought for a moment that I did not have UC, maybe all this time I only had amoebiasis (symptoms are exactly the same!).
I had a week of antibiotics and I was much much better, but I still had UC… But I realized that I had passed very close to death: having amoebae in my bowels, if i had been given an immunosuppressant, I had a 100% chance of having an immediate toxic megacolon. So I have a very important advice to give, you should make a saddle analysis before taking any immunosuppressant, it is very important!
Then i was given local prednisone (because I’m allergic to cortisone), i was finally put under immunosuppressive, which I quickly stopped because I could not stand it.
After stopping immunosuppressives, suddenly my flare stopped after a year and a half of fatigue and physical and emotional pain.

During this year and a half, I’ve tried everything: Seignalet diet, eating only rice, I even tried to fast …
The truce lasted only a few weeks. After a big quarrel with my parents (which haven’t been much sympathetic or just present to help me when i was so bad), two days later, a flare arose. This is where I thought about the specific carbohydrate diet that I had never tried. I told myself anyway, you have nothing to lose! And I came across your website, Adam! I am very grateful for your website which is very much alive and lifts spirits! I did the same thing in your video where you cook your meals (the same for a week! Lol) and it worked in two days! this is wonderful! It’s been a month since I diet and I am so happy to eat fruits, vegetables and meat!
But fortunately I understand English well, because in France, there are no blog and very little on our forums disease, here you feel very, very alone …

I wanted to make it short and didn ‘t mention about all the stress and your world collapsing… I needed about a year to just accept that i am ill.
and a last thing: i was shocked and surprised my gastroenterologist didn’t even know about the SCD diet! I saw her 2 weeks ago, and she was very surprised and said my rectum looks like new!!! :)

Where I’d like to be in 1 year:

I currently live in the center of France and thanks to UC, i can get a chance to have a job transfer on the coast! So i hope in a year, i’ll live near the ocean!

Colitis Medications:

i tried pentasa
i tried prednisone locally
i tried imurel

i felt like none of them worked.
I think cortisone doesn’t work on a long term, (i’ve never taken cortisone because i makes me faint and multiplies my blood sweetness; but i feel like my body create a lot of cortisol by itself, which makes me sleep a lot)

I just think we are unlucky that no research is going on to find something that really works!

written by Cecile

submitted in the colitis venting area




France

8 Responses to Feeling Alone But Hopeful – Hemorragic Rectal Colitis

  1. Aida September 4, 2012 at 5:31 am #

    CHARLOTTE GERSON: LECTURE APRIL 21ST, 2012

    • Bev September 4, 2012 at 2:55 pm #

      Thanks Aida…great link!

      Cheers:)

  2. UC Family Boy
    UC family Boy September 4, 2012 at 10:00 am #

    Hi Cecile,

    I am so glad you came out the year doing well with the SCDiet.
    I have a question, did you do the intro diet? what did you eat after this initial part of the diet?

  3. Cecile
    cecile September 4, 2012 at 11:05 am #

    i just did the intro diet for 3 or 4 days, after a 4 days fasting… (so it was easy to do!), i rapidely bought a yoghurt maker and i make chicken soup once a week! (i had read some books on anti-inflammatory diets, so i also know we should eat shrimps and curcuma (turmetic?), i recall that chicken and turmetic are the two most anti-inflammatory food)
    i still stick to the diet and i’m happy with it, except for chocolate which is a real torture when my children ask it and eat it just in front of me!!! lol
    it is going to be harder now because i work in a school and usually eat at the cafeteria… but there is always sauce or wheat somewhere…

    • k.colney September 4, 2012 at 12:02 pm #

      cecile i think evn honey is ok to take replacing artificial sweetener,but wh n flareup i dont think chicken uld b gud.n too much yoghurt culd b acidic its better to dilute wt water, its call butter milk in india.i was told its healthy to eat homemade so u cn tk sanwich veg grill wt cucumber tomatoes n little non faty butter.n i heard dat fish is healthy for us like which has omega 3

  4. Bev September 4, 2012 at 2:09 pm #

    Fabulous posting Cecile!!

    You are so right when you said you were feeling like you were going to die. I was there too…when I was on the medication. Also, anemic from all the blood loss. I felt like I was dying too! I really thought I would die soon. It was awful.

    Thank goodness I decided to try probiotics and go off of all the meds! I feel 100% better in every way now. I can’t believe the difference now. It’s like night and day…

    I’m so very pleased for you!

    Chgeers:)

  5. Allison-3
    Allison September 5, 2012 at 1:48 pm #

    Hi Cecile-
    Your post really touched home. I am a single parent and my boys were 8 and 10 when I was diagnosed. I was in bed for six months so they learned very fast how to take care of me. In hindsight, it was the greatest lesson they could have learned- they will be wonderful husbands one day I am sure! I had spent five years working non-stop so this 2 years has been a blessing because I have spent so much quality time with my boys. We watched a lot of movies from my bed… but it was lovely.
    I am currently in a flare up (which I know won’t last long) so the kids got very frightened but they got right into take care of Mom mode. I am drinking a perfect cup of Rooibos made by my 13 year old as I post this!
    In the last 2 1/2 years my kids witnessed strength and perseverance and being mindful and present in the face of pain and uncertainty. My younger son and I ran a 5K race in December and he was never so happy to see me active again. I graduated from University with a Biology degree in May and they cried at my graduation. Your kids think you are a superhero!
    So- though my health is a little unstable at the moment I try to just be my best Mom. They have seen me recover and they know I’ll be running around again soon. And I just still try to be fun!
    Best wishes to you! I am also looking forward to a new job and a wonderful move when the time is right.
    I am sorry your family is unsupportive but that’s what’s so lovely and important about this blog. We can feel lonely but we are really never alone.
    Ciao- Allison

  6. Steve September 5, 2012 at 10:13 pm #

    Hey Cecile…what part of France are you from(you said center but is there a name)? I visited way back—it makes me feel old thinking it was in high school. lol. That means I have an excuse if you write to me in Francaia(?) but I’ll do my best! I can read it much better than I can write it.

    I am sorry both you and Allison have had to raise your kids while going through such difficult times but it doesn’t sound like it is stopping either of you. My family is not supportive either—just this weekend my mom’s family came together(13 brothers and sisters and all their families) for a small reunion. Yes, I said small because it was just my her brothers and sisters. Our usually family reunion is even bigger. Needless to say, all the food the served I couldn’t eat so I just felt pretty silly being there. If I don’t go, I look like a downer. If I go and don’t eat, people get offended. If I go and eat, I get sick. So no worries. Focus on yourself. Your parents will come around. :)

    I don’t want to write too much but it would be awesome to hear from you as someone who visited your country and loved it. Steve

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