Update From Michelle…
I am a mother of three little children (4yo, 2yo, 1yo).
I was diagnosed with UC in Nov 2005 after the birth of my daughter.
I had 2 flares until June of 2010. On June 21st I started prednisone, was admitted to the hospital on June 30th and not discharged until July 19th. When I got home, it was still awful. I lost 40 lbs in that timeframe…I could barely walk up the stairs…much less carry one of my children. I was eating broth and jello. I got shingles, an awful eye infection and I’ve had Thrush for about 2 months.
I had a flex sig and upper GI done since then….my pathology report from the Upper Gi said that I might have Celiac’s Disease! (Going in for a blood test to confirm next week) Really people??? Can you pile any more on me? I am still on prednisone (the devil, but only 20mg yippie!), asacol and I’ve had 3 Remicade treatments.
I shake all day (I think from the Prednisone), I’m growing facial hair that I don’t want (obviously being female!!! Any suggestions on how to get rid of it?), and I think my hair is falling out. Ok, so that is all I got….that has been my summer. I did start the SCD Diet on August 3rd and it has been helping a lot (maybe bc of the Celiacs? lack of wheat/gluten?) I have formed stool and no blood! (don’t want to jinx it) It is one of the hardest things to do, I will say. Has anyone who’s been on the Diet actually eat normal again? I do like the healthy, make your own way, but sometimes I want to have just a bite of something….does that happen? I know I will be on SCD Diet for a while, but I was just wondering… Anyway, thanks for listening. It is hard sometimes when you feel like the world is coming down on you….its hard to keep a positive attitude, but you have to move on and keep going!
(Hi Michelle, thanks for writing in and sharing the update for you. I don’t have any suggestions as for the facial hair, but I suspect it will go away once the prednisone is over. I have heard that complaint/side effect from a few other women. Does anyone have a clue about this? If so, please write a comment below.
With regards to the diet and actually eating normal again…? That’s another great question. I myself feel pretty confident breaking some rules of the diet VERY VERY SLIGHTLY, like a tiny bit of milk in my morning coffee each day, a little little bit that is, not a half cup or anything close, and I surely don’t ever order a latte drink etc… I am hoping that maybe some others who follow the SCD Diet will comment on breaking rules, and if that has allowed them to maintain remission.
I’m just one year on the diet, so for me, no, I don’t “eat normal”. And by that I mean, I am not eating breads, toasts, cakes, coke, pepsi, beer, etc… But, and I know this is going to sound really really strange….I don’t feel like I eat like a freak or anything. It has taken me a while, but people don’t look at me strange when I order an omlette at a restaurant in the morning and tell them to hold the toast and potato and substitute it all for some fruit. But that’s what I do, and it all seems to work out.
Best of luck to you Michelle, I hope you continue to stick it out with the diet. One thing that I am most happy about is I have not paid a single penny in medical costs this entire YEAR!!! Which is saving me thousands compared to the last two years previously. I hope that is the same result for others who follow the SCD Diet, or who have found other alternative treatments that don’t cost much.
-Adam )
If anyone else wants to write their story, especially if you have one related to Michelle’s you can do so here: write your story
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com
Hi Michelle,
Congratulations on starting the SCD! Its your first step to healing your gut and becoming medication free.
I started the diet on July 5th and have been doin great ever since! I am still on a small daily dose of salofalk but i hope to get off those soon too! I havent cheated at all really, except having some balsamic vinegar one day! It didnt negatively affect me. I think in the early days/months of the diet it is best to stick to the diet 100%!
With regards to the facial hair, try waxing it! and hopefully it doesnt come back!
I wish you luck!
Hi there
Yes unfortunately steroids make your hair fall out but replaces it on your face instead. It absolutely horrible. I have bleached it, plucked it, lasered it and now i wax it. waxing works the best but unfortunatley you have to do it for life. Although im thinking of saving up to get it lasered off professionally that works on people too. if that doesnt appeal to you stick with waxing.
Hi Michelle,
Sorry to hear about the prednisone, hopefully you’ll be able to be weened off of it. I’ve been off of it for about 3 years and the facial hairs have never gone away for me. The best thing I’ve found in a busy schedule is just to exfoliate really good, use a good shaving cream, a good razor, and just shave. I’ve waxed and plucked but it always seems to grow in faster for me that way. But everyone is different. Hope you find a good medium! Best of luck to you and I hope you feel better soon!!
Hi Michelle, I was on pred for about 9 months (50mg, 25, 0, 75, 50 (for months), 37.5, 25, 12.5, 0, hospital methyl pred, etc, etc) I finally weaned off it after an induction dose of infliximab and within weeks the facial hair was gone. It’s sounds like I was pretty lucky given the other comments, but maybe you will be too :)
I’ve also been on SCD for 6 months and have had my first flare – so I’ve gone back to scratch with the intro diet. My advice is don’t be ambitious in what you eat. I’d been feeling great so skipped ahead to some advanced foods (peanut butter, coconut milk) and then went out to lunch with friends. The menu looks promising in advance, then it turned out they put sugar in their tomato sauce which was in all of the seeming SCD legal menu items. I thought ‘oh well’ and ate it anyway. And here I am 2 weeks later with the worst symptoms in 5 months. Not sure if it’s the sugar, the infliximab wearing off or just bad luck, but I’m not goign to risk it again.
From what I’ve read, it seems that eating illegal not just gives you symptoms, but sets back the healing process so it’s even longer before you can think of trying illegal foods on a sustainable basis.
It would be nice to be able to eat out without thinking about it, but nicer not to be running to the bathroom.
Good luck.
Hello all,
I am a female.
I have been on prednisone 40mg for 2 months and I noticed facial DARK hair that is growing in places I have never had some or if I ever did it wasn’t visible… I wonder if it is gonna get worse and keep growing or multiplying because if it does I will look like a man!
I am supposed to be on it for at two more weeks at 40mg and taper down each week 5mg after that. So I hope I am not prednisone dependant!
I am already on remicade. So I better not be!
Hi Salsaflamenca,
Are you done tappering down? did your facial hair go away?
Hello ,
Please did your facial hair go away, i have the sane issue after three months of prednisone.
Looking forward to read from you. :(