I’m 24, had ulcerative colitis for just over a year and a half and have yet to be in remission. Just turned down methotrexate and have decided to try diet changes instead.
Some more details:
I live in Hampshire, with my boyfriend Morgan. We both work full time but also have a property business on the side where we renovate period properties and hope to start building new builds at the end of the year. We enjoy socialising, seeing friends and family and going on nice holidays.
Bowel movements currently 6 per day with blood. Urgency and toilet trips in the night are common. But it’s my own fault coming off the Aza too soon! Back on it now and SCD, so hopefully this will sort me right out :)
My UC Journey…Part One!
Wow. Ok. So where do I even start?
I was diagnosed in March 2013 after my symptoms started in January 2013. I was on holiday in Lanzarote with my mum when symptoms started to creep in. Nothing major at first.
On returning home the doctors began tests for various food intolerances and all came back negative. Then in march I had my first colonoscopy, it showed I had Ulcerative Colitis, mainly in the last 25 cm of my colon.
Over a period of about 6 months I was then put on Prednisone 40 mg then tapering down by 5mg per week, various rectal treatments and then Azathioprine 150mg. Nothing seemed to be working and by September things had got pretty bad. Come October the doctors decided to star over again and put my Prednisone back up to 40mg and try tapering off again over a few months. Again, nothing worked, but I was experiencing all the horrible side effects… weight gain (2or3 lbs a week), mood swings, insomnia (often up all hours of the night), lack of sex drive, moon face and water retention everywhere especially my upper back and thighs.
Its so hard to stay positive when you feel you are losing grip on not only your old life, but also the way you normally look too. I stopped wanting to go out, I stopped seeing friends and I stopped going into work.
So.. December 2013 was pretty bad. I was quite depressed and with it being the festive season it was made even worse by just wanting to go out and have fun and do all the normal things I didn’t feel I could do anymore. I was going to the toilet about ten times a day and this made it almost impossible to go out and lead a normal life.
At this stage I was still completely in denial about diet. Yes. I spent most of 2013 saying “my doctor says this has nothing to do with diet”. I couldn’t have been more wrong. So NYE and a night out in London for my lovely cousins 18th birthday in January meant great food and a LOT of alcohol. This is when things got even worse. I thought I was going to die. Champagne is no longer my best friend.
I was admitted to hospital at the end of January with bowel movements happening about once every hour. I also needed to use the loo about 4 or 5 times a night. I was like a zombie.. A fat moon faced crazy zombie lady who was miserable and exhausted! I spend about eight days in hospital on hydrocortisone IV and towards the end of the stay I began to feel a lot better. Bowel movements reduced to about three a day and I was sent home again on 40 mg of prednisone to taper down slowly over about six weeks.
I enjoyed being home so much, I was signed off work sick for a few more weeks and I just loved being able to eat what I want, drink what I want and just enjoy the days again. WRONG again!!! Within three weeks of being home and the steroids being tapered down, bowel movements began to creep in again and I was starting to bleed and get stomach cramps which was just devastating.
So, something snapped and I decided to go against everything the doctors had told me so far and try to manage the disease with diet. Three days into the SCD diet I couldn’t believe the changes with toilet visits down to about two or three a day and a massive reduction in blood. It felt great to have some control back and to feel like I could someday soon be healthy again. The SCD diet really helped for a few weeks however willpower is not my strongest attribute and every time I felt a bit better I would have something naughty, like chocolate or a few drinks out. My body just wouldn’t be ready for it and it would set me back again by a week or two each time.
Today I am still trying to apply the SCD way to every day combined with azathioprine 150mg ( I came off this temporarily about four weeks ago to see if I actually needed it and my symptoms unfortunately deteriorated again). It turns out the azathioprine that I thought wasn’t doing anything was in fact helping a lot and so I’m hoping now with the SCD diet and this immunosuppressant I can get into remission. I haven’t been in remission once since this disease started.
It’s been quite a journey and I am always looking at new options, one being Fecal Microbiota Transplantation (being performed at a London clinic hopefully early next year) but I just wanted to give some hope to anyone going through what I have been through the last year.
This disease is horrible and it’s lonely and life changing, but it makes you appreciate the good things in life. Myself and my boyfriend Morgan are closer than ever and he has been so supportive and brilliant, and if we can get through this I don’t think anything else will ever seem difficult. My family, especially my mum, has been there every day as a shoulder to cry on and someone who listens to my new ideas every day with patience and hope… Nicotine patches, starving the bacteria out by fasting etc, I have tried it all. Colitis has made me appreciate the important things and people in my life that I never did before.
On a final note I just wanted to say, anyone struggling with the physical and mental impact of steroids to really consider what they are doing to your body and if it’s more harm than it’s worth. Some things will go, like the moon face and the weight, but my joints will never feel the same again :)
I will keep you all updated and hopefully will be posting something much more positive in six months time….
I hope this story gives some people hope that your worst UC flare will get better!!
“Hi Adam. Did you find the first few months of SCD difficult and when did you taper off your medication?”
Thanks for sharing your first story with us. For me, starting the SCD diet was not that difficult or me. Although I’d never been on a diet where I was actually watching what I ate ever before in my life, I didn’t have too much trouble finally doing just that. Come one though, just a few days before I started SCD I was told to contact a Colorectal Surgeon to schedule an initial consultation to map out a plan for having surgery and potentially an eventual j-pouch. And I sure wasn’t wanting to do that back in August of 2009 only 10 months after my diagnosis. So I’m sure my relative easy of changing my diet was because I was MOTIVATED in a major way.
But, even with motivation, what helped me get past the hump was the reality that I was actually seeing formed stools and decreased bleeding within just a few days for the first time in a long time. I’ve definitely done quite a few things that were much harder both physically and mentally compared to starting the diet. I had been tapering off prednisone for two months when I started the diet, and it wasn’t for another three months until I was off those little white steroid pills completely.
Best of luck to you and anybody else who decides to give the SCD eating a try.
I’m 24 years old and live with my lovely partner Morgan in Farnborough, Hampshire. UC Symptoms started January 2012. No periods of remission at all until October 2014.
I live in Birmingham UK and was diagnosed with UC at the age of 18 whilst at university. Partying, takeaways and late nights all fueled the colitis symptoms.
I had a good fee courses of steroids and asacol which did the trick but caused the embarrassing side effects ( major moon face for me!).
Then from about 2003-2010 I was in remission and I completely forgot I had the disease. I took no meds and ate what I like. Then I suffered a miscarriage in 2010 and I had a major flare. But still controlled well with steroids and back to normal in two months. My colonoscopy showed mostly mild colitis and left sided with a couple of moderate patches.
I then became pregnant and was the healthiest ever. Pregnancy took away all symptoms and I had a successful pregnancy, birth and baby is doing really well. She is one now and is fine.
However post pregnancy hormones have probably played a part in why I’m flaring now :( had two minor flares last year which I managed to control without steroids and on rectal meds. But from march this year until now I am having a horrible grumbling flare that won’t go. I’m on my third course of steroids and for the first time in my life they have stopped working as effectively as they used to. Colonoscopy last week showed that luckily the disease had not spread but the colitis that had been inactive in my rectum and sigmoid for so long was now moderately patchy. However the rest remains mild. So I am starting azathioprine this week and am hoping for positive results and no side effects. I hope I can tolerate it but it’s got to be better than steroids!
I make sure I run three times a week and take a high dose calcium bad vit D supplement whilst on steroids. I have found I suffer from no joint pain or long term issues because is steroid usage and hopefully that will remain the same.
Btw Yasmin you look fantastic in your picture. No signs of moon face whatsoever. Sometimes we think we see it more than others actually do! Lol! I am paranoid about it too! Plus a long as the steroids are aiding in your healing then the rest is just tolerable.
If you want to chat some more about anything to so with your colitis, then give me a shout! As we are both UK chicks, it would be nice to make acquaintances with other young women who are going through similar issues :)
Good luck and I wish you some peace and relief in your flare soon. It’s just around the corner :)
Thank you so much for your lovely reply. I’m sorry to hear that you are in a flare again and I hope it passes for you quickly.
You’re right about the steroids being tolerable.. I think they are tolerable when they are working anyway, but for me, they really didn’t do much at all.
Do you change your diet when you are in a flare?
I have always had the worst eating habits and I’m finding it so so hard to change what I eat, even though it does help my symptoms when I eat the SCD way, I’m sure of it. Why is it that I have such little will power with the SCD diet? Maybe its because when ever I go to the hospital the doctors tell me diet isn’t a factor or i should follow a low residue diet? It’s like conflicting information all the time!
Anyway, I started 6-mp two weeks ago as my hair was falling out with Azathioprine (I’m sure this wont happen to you but I seem to get every side effect going). The hair loss and sickness have reduced significantly on the 6-mp so its a good result! My flare is still so up and down though, ranging from mild to moderate to severe, depending on what I eat the day before so I really need to start keeping a diary.
Do you find you have good days and bad days? Do you freak out like I do when you have a bad morning? The illness really has an impact on my emotions and my frame of mind for the day. I wish everyday for my old life back.
Some new things I am looking into are vitamin D levels, fecal microbiota transplants (my registrar has offered to do this for me) and constantly looking at diet changes! Do you take any probiotics?
Add me on facebook if you like and we can chat Thank you again for your support and I hope I can be of some support to you too! Congratulations on being a mum also… how exciting! x
Good to hear from you. I tried finding you on Facebook but couldn’t.
In terms of diet, when I’m flaring the only thing I change is I stop drinking milk and change to almond milk and I reduce my wheat and gluten intake. I find it helps with the pain and bloating. But that’s it. I’ve never done SCD and don’t intend to. I am a proper foodie and love eating out and if you take away my freedom as to what I can eat, then what pleasure is there in life! Anyway i have never been able to control a flare with diet.
I think the key is trying to find the right medication for you. I was fine on asacol for years. Steroids used to stop the flare in its tracks and then I would stop them and go back on asacol. But I’ve started having flare ups about twice a year which is too much now. Before I used to go a couple of years without one. So that’s why I’ve been out on azathioprine. I’ve been on 50mg for a week and going for blood tests tomorrow to see if I’m ok on it. So far I’ve had no side effects that I can see or feel. But I’m upping to 100mg tomorrow so we shall see. Hopefully I will be ok and it works.
I do freak out when I have a slightly odd or gassy poo. Because this disease has such an impact on your state of mind. My husband always says try to think of something else and focus on work but I just can’t because it’s such a big part of your life when you’re flaring. It consumes you and I don’t think it helps.
I find that exercise really helps my physical and mental state. I run almost every day which is good for my joints and muscles and overall fitness. It also clears my head and is the only time I don’t think of my uc!
I take a probiotic called renewlife critical care. But I’ve heard VSL or something is good. I’ve only recently started taking it.
On the plus side my flare is improving now so onwards and upwards!