I am currently tapering off prednizone I feel like the side effects of prednisone and other medications I am on are as bad as the illness itself.
I was diagnosed with UC at a severe level at the start of 2010 and I am still struggling to get into remission but slowly getting there. I am a 15 year old teen and I can’t go into public for long periods of time any more because of the weight gain I was a good weight of 60kgs but packed on 15 kgs from being on prednisone. I have been on prednizone now for about 12 weeks and two weeks ago I was in admitted to hospital due to the inflammation being to big for the steroids to be orally taken so they decided to give me intravenous steroids. I went from taking 40 mg of Prednisone orally to being in hospital and taking intravenous 60 mg of steroids. I hated life I wanted to die.
I honestly haven’t been through such a hard time in my life. I have a big moon face and I’m constantly scrubbing my face to prevent my acne from getting any worst than it already is.I have been sick now for a year and a half. I was going to my GP about my symptoms and he had no idea what was going wrong with me I was weak way too underweight and I was going to the toilet just to bleed sometimes. I went through a year and half of misdiagnosis of many different stomach bugs and infections I could’ve possibly had. I had had it with all these doctors and tests of stools and urine and blood.
I couldn’t take it any longer and I thought I was about to pooh out my colon literally. I thought I was about to die and Imo sure if I had left it any longer I would’ve. My step mother who is a palliative care doctor called her colleague/friend and asked her to give me referral to a good doctor and she definitely did. She gave me a referral to Dr. Arvi L and i remember the day i had an appointment at his doctors office it was horrible i knew i was about to learn something about my body which was going to change the way i saw life and lived it… he examined my belly and booked in a colonoscopy (i have the worst fear of them) I shat myself at that thought and then he told me that I most probably have Crones judging by my symptoms. My reaction was ” Is it fatal, will I die? Is it curable? What the f%$k is this?” hadn’t He clearly picked up on the fact that I hadn’t heard of this disease ever before, and I hadn’t. So here I am 5 months later still no school, no social life, no anything I basically want to die.
My friends who I was so close to don’t want to know about what I have they’re scared of what I have and they are so worried about how I feel about my self. I’m usually such a bubbly person but now Imo just flat. I don’t eat at the moment I don’t want to go near food but I have the starvation prednizone gives you. Its torture but I cant get any bigger.
I HATE UC.
I just want to know if theres any body out there that can help me. I have a supportive family… a 21 year old sister who loves me and helps me so much and a mum that couldn’t possibly give me any more love than she already does.
But they still don’t know what UC feels like.
Help?!
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
Well you hit it there love. Even those close to you can never know what it is like to be in there with it. I was diagnosed last August after 6 months of hell. I am 72, and have had the best of my life, but I was a very active old girl.
I felt very sad to hear your story, hang in there girl. Make a start on the scd diet and see where it goes. I have been on it for 8 weeks now and feeling much better, although I am still coming off prednisone, and still have the moon face. Just remember you are not on your own, and we know what you are going through
Hi there, just read your post, Im just tapering off pred’s and others at the moment and know what you are saying. I think the best thing is to get [if you havent done this already] is let you family members read this website, I hadnt a clue what UC was [even though I had seen Doc’s/ Hospitals etc and they really werent that informative] until I came across Adam and this site and it really helped when I go my family members to read the posts, it shook them for a while but I think they are coming around the the changes that need to be amde by them, as well as me. I know this will probably sound stupid but you have your life ahead of you, and as Adam has pointed out UC is NOT FATAL…..and keep posting as we are all here for you!!!
Kieran [ireland]
I’ve been on prednisone as high as 60mg the moonface and the weight from that will come off as you reduce your dose. Ive been on steroids solid for the entire time since I was diagnosed anywhere from as low as 2.5-60mg. As soon as a high dose is perscribed, usually after a extreme flare/hospitalization(twice, I gain 30-40lbs,13-18kgs. Once my dose gets back down around 20mg I notice the moonface startes to subside considerably. As for the acne the more you scrub it the more oil your face will produce, its more of a balancing act than a cleaning. Wash too much and your face will just produce more oil and other areas will dry out, wash too little and the oil will build up. Between my eyes and my cheek area right under my eyes gets extremly dry and flaky no matter what I do while tapering every time I taper. As far as going places yes it is awful over the past 5 months Ive been to the movies once and to the Dr’s. thats it no where else it drives me crazy. I live with my parents again and take online classes toward a business degree so that my time spent sick isint totally lost. Things should get better just keep searching for the right combination of Dr, meds, vitamins, diet. One of the biggest improvements on how I felt overall physically was after I started taking a B-Vitamin complex and an Iron every day, occasionally I take a Multi-vitamin, something in the multivitamin sometimes upsets my system but the B-vitamins do not so I take them and the iron every day. Drink plenty of water and stay hydrated I have began to make a connection between my flares and how hydrated my body is. The flares seem to be much more painful when I dont stay hydrated. Good luck http://www.healingwell.com/community/default.aspx?f=38 is a good colitis forum, my username is Brad1821. Lots of trial and error/research and development topics on there, several threads related to the SCD from this site which has also helped me tremendously for helping reduce the symptoms of my UC.
Brad: As far as the multivitamin goes, have you tried the gummy versions, or just the giant solid pill? There is usually iron in those “horse” pills, and not the slow release kind, which aggravates the delicate balance we can almost find, thank you very much UC….
I was diagnosed with UC when I was 15, right in the middle of sophomore year….gee what fun. I remember losing 30 something pounds in under 3 weeks. It was awful. Thankfully a course of steroids go tit under control after a few months and I was able to resume a “normal” life. I had no symptoms for a good 6 years following that.
Here I am, 11 years diagnosed, and sadly have begun yet another flare-up. I know it’ll get better eventually. I just have to make it through the bumps first.
Wow! I thought you could only get Uc during the ages between 15-30! Thats incredible
had you been suffering most of your life before this diagnosis Shirley?
I saw a doctor today who said that I should cancel out all dairy from my diet as it had benefited many of her other patients, so I am trying that out first and im very excited about seeing the results as i am completely fed up with being on NINE different medications! Thanks alot, its great to know that theres people out there that understand.
Hey
Your story is almost identical to mine. I have found relief in taking control of my illness in everyway I can. I eat a stoneage diet, meditate, drink herbal teas, exercise gently, practise breathing to alkalise my body. I know it gets crappy sometimes. I sleep in the bathroom and people on the street have heard my cry in agony as I pass things through my raw hole. You’re not alone. There is a lot you can do to manage this illness. With pred always take it at the same time with lots of food to minimise side effects. If you can go for a walk or any exercise you fan as this will release endorphins to combat the depression. Get in touch with me if you like ecornes@hotmail.com
My situation is similar, I have gained so much weight and I have been on prednisone for a couple of months now and really depressed as the weather is warming up and I hardly have any clothes that fit me. I hate UC and prednisone and I have been trying only 5mg a day and now my symptoms are coming back and I had to go back up to 10mg and I’m hating it. I want to get off of it so the moon face will go away and my body will go back to somewhat normal but I feel like it may not happen. I can’t tell you anything other then hopefully you will go into remission soon and get off the prednisone like I’m hoping and I know how emotionally draining it is! *smiles*
Hey,
I was really touched by your story and also quite angry. You know symptoms of U.C and chrons should be quite easy for a GP (doctor) to pick up on and yet I have heard of so many stories including yours and myself that have been mis diagnosed by our GP (doctor) for months and in some cases years before patients are refered to a gastro team and sent for colonoscopy to be finally diagnosed. After 1 year of sypmtoms and my GP mis diagnosing me of stomach bugs and food poisining I began to go straight to accident and emergencies and after 2 vists to the hospital they finally refered me to the gastro team where I was diagnosed.
O,k back to your situation, I really feel for you girl. And altough it does some times feel like the end of the world you must not give up hope, there is light at the end of the tunel you just have to try different things ans see what works for you. I have just come off the peds (steroids) last week and I know its fu%*ed up and meses with you phisically and pshicologically, I dident get the moon face but I got insomia, only getting 3 hours sleep a night if I was lucky, needles to say that developed into depresion and I felt I was going CRAZY!
I wish I could tell you I have been fine for years but I actually seem to be getting a flare up every 6 to 8 weeks. But I refuse to let this thing beat me. I am currently doing the SCD diet and focused in getting back to normal. I recommend you try it, you will have be strict and it requires a certain amount of disipline. Keep in touch and remember you are in the right place here where you can relate to people going through the same situation.
I wish you all the best
Danny
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Reaaaally good news now, Im on symbalt to stop me from wanting to eat so much.
Hi I know how you feel sweetie! My heart and prayers go out to you. My 21 yr. old baby girl was diagnosed with UC 2 months ago. Remicade and Prednesone also did not work for her. She got thrush too and her tiny 5’2″ frame dropped to 88 pounds.I bought an e-book called self-healing Crohns and Ulcerative Colitis and called Dr. Klein for advise. With juice made from fresh fruits and vegetables, my daughter’s thrush dissappeared, her hemo went from 7.6 to 9.5 in 4 days (she received a red blood cell transfusion two weeks ago when her hemo dropped to 6.9) and she is in what we believe on the road to recovery….Please don’t wait for the doctors to tell you the only answer is surgery…Oh and today is my daughters first day without Prednisone…She is med free and on the road to recovery.. May God bless you and help you make the right choice, He helped us..Maria
google scd diet-order the book-follow it to the T! read it-start it at its most basic form-it’s hard at first but def. gets easier- i first did it in jan 2010 and got in remission within 2 weeks- but in may got the stomach flu-and ended up with a flare up- i have to admit cheating then- went back to scd but did not start in basic form – think they aggravated it- went back to basic scd and now on prednisone-getting better in 3 days- so i hope to get off this pred in a few weeks not a few months! once you get well-stay on diet-but there are laot of products now that you can use to make cooking easier- my whole family eats this way -1 daughter has celiac- rest of fam normal – but they love my food and desserts. grassfed hamburger the juiciest- theirs a soy flavored sauce made from coconut sap-its coconut aminos by coconut secret- i have great recipes when you get more advanced. good luck!!
I would say get off of the drug as soon as possible. I was diagnosed in 2004 when i was 12 years old, and i had a very severe case. They put me on prednisone because my stomach muscles were always contracted, and the doctors goal was that the steriods would force my stomach to actually relax. Well, i gained roughly 40 pounds and i went from 95 pounds to 138 pounds in less than a month. I was in 7th grade and made fun of constantly for my weight gain. I’m now 18 and have stretch marks from 6 years ago. I know how you feel, because i went through pretty much the same thing. I tried to get my parents to take me off of it and they just wanted to listen to the doctor because they knew nothing about treatments. I would personally suggest remicade, which i have been on for the past 3 years. The difficulty is that the first few infusions can take a long time because they don’t want you to get sick from it. Hopefully my story makes you feel less alone.
First of all, you must be told the truth. You are an amazing young girl. Your unique ability to honestly and openly describe the illness you are suffering shows how brilliantly wonderful you really are. It has been a year since you wrote you post and my prayer is that you have received at least some relief from your UC since then. You said you were slowly reaching remission and that is a great thing.
I can tell you that I had a very similar experience as you. Horrible flare up, months of prednizone. Debilitation. Slowly reached remission and was able to stay in remission for years. Many great years. Yes, I flared up again years later, but went back through the same process and am back in remission and I try to stay optimistic that i have many symptom free years ahead of me. Maybe forever. Who knows. Doesn’t matter. Stay in regular contact with your GI. Stay on maintenance meds if prescribed. Follow up with docs as suggested. And the minute it appears this a-hole of a disease is coming back let those doctors attack it however they know best right away.
Please remain optimistic. You have a wonderful life ahead of you and I promise that you can live with this illness, regardless of the lifestyle changes which may or may not have to take place.
Be good and feel good.