Feeling Alone But Hopeful – Hemorragic Rectal Colitis

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
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