My name is Kelli, 32, from Nottinghamshire in England, & I have suffered with Ulcerative Colitis for near on 6 years now.
Well, what can I say to express the relief I feel at finding this site?? If I said right now I’m brought to tears by the discovery, it wouldn’t be a lie.
You see, this last year with the disease has been the worst of what I call “my UC life”, & I was beginning to think that I really was going to have to deal with it all by myself. As daft as it sounds, I had no idea that sites such as this even existed.
Thankyou thankyou thankyou Adam! And to all those who post their stories. You have no idea how it’s made me feel :)
So, my story.
Well, back in 2004/5, I was working at retail management level for a internationally known fashion accessories retailer, & under A LOT of stress. I had started to notice a definite lack of energy, appetite & general feelings of being unwell, but put it down to work stress.
Until, one day, I was finally unable to eat more than a bite, the food I WAS able to eat tasted like ash in my mouth, my concentration & co-ordination was deteriorating & most of all, I just wanted to sleeeeeeeeep ALL THE TIME. I woke up at 2am that night throwing my guts up until there was nothing left in me, but still retching, & nauseous as hell. I was rushed to A&E.
I spent the next week in hospital while many tests were undertaken, & was diagnosed with Ulcerative Colitis. I had never heard of it before in my life. I wasn’t scared, just confused. What the hell was it?
I was sent home with Prednisolone & Pentasa, & was off work for 3 months. I suffered with panic attacks & extreme fatigue. I couldn’t go anywhere alone. That was when I got scared. Thanks to the steroids, I looked about 6 months pregnant & I had people coming up to me asking when the baby was due. I could’ve died of embarrassment – I didn’t know what to say, I was so ashamed of my illness, so I just went along with them, saying “Not long now!”. A real low point. :(
However, after a few weeks, I started to pick up. My energy came back, & slowly did my lust for life. Miraculously, I went into remission. For 2 years! I was lucky.
Then, a re-lapse. I went back to my consultant gastroenerologist, who re-started me on Mesalazine. It seemed to work so well, that, after a couple of months, I was told I didn’t need to return to him. So I didn’t.
And didn’t, and didn’t – even though my relief turned out to be short lived & I continued to have up to 6 small flares in a 12 month period. I just thought I had to keep taking my Mesalazine & just, well, deal with it. And so this was how I ‘managed’ my UC for 18 months or more. Each flare got worse than the last, more frequency of ‘going’, more quantity of blood, until I realised that the disease had taken over my life. I was no longer working full-time permanently, & had been unable to for some time, & was living in fear of my own body. Something had to be done.
Back I went to the consultant.
Mesalazine again, but this time, an upped dosage. No other meds were discussed. No follow up appointment made.
And therefore, no real change. I was put on a low-fibre diet which had some effects, but I gained 10 lbs in the process & constantly felt slow & sluggish. Yet I have carried on like this ever since. I have moved away from my old area where all this took place, & now live in North Nottinghamshire (Robin Hood country!) & have a new consultant, but the meds & treatment I have recieved have been the same! Is this right?????
It came to a head in October last year when I had the worst flare of all. Very late one night, after a week of bad symptoms, I had started to ‘go’ every 10 minutes. Yep, you didn’t mis-read – 10 MINUTES. Then the ‘going’ started to have an added complication – vomiting. Then came the cramps. My God, the pain. Excruciating. I knew something was seriously wrong, so at 7am I was again taken to A&E.
And in hospital I stayed for more than a week while I was drip fed steroids to get the inflammation under control, & given Movicol to remove a blockage.
Upon being discharged, I was prescribed a 3 month course of Prednisolone & yet more Mesalazine. The Pred did it’s job, & I started to believe I could live a bit more ‘normally’. The side effects were horrendous though, & I didn’t ever remember it being like that before. The weight gain was the same, but the moon face, body aches & pains, & depression certainly wasn’t.
I couldn’t bring myself to look in the mirror as the steroids had changed my face so much, I didn’t look like me. I didn’t feel pretty, or feminine in any way & it made me feel so low. My boyfriend has always had a problem dealing with my illness & how it affected me, so this was affecting our relationship pretty badly at this point, too. So understandably, I couldn’t wait to be off the meds. I thought I would have some off the same good luck I had when I was first diagnosed, & I would finally have my life, & myself, back.
How wrong I was! The steroid course finished in January this year, & within a week of ending the course, the symptoms were back. I had suffered a viral throat infection over New Year, & put it down to that. But, after 2 weeks with no change, I thought “I’m NOT going through this again!” & took myself to A&E. I was kept in for 2 days, one of which was my 32nd birthday. Not the best I’ve ever had!
Tests showed that my inflammation was borderline, but constipation was causing my symptoms. I couldn’t believe it!!! I was ‘going’ all the time – how could I be constipated???
So, I was sent home with Movicol & a shorter course of gastro-resistant Pred, And the ever present Mesalazine.
And here we are. That brings us to right now. And how am I?
F*@~^ing ill, is the answer. And VERY p@**ed off. I mean, can these docs ever get anything right???? The steroids were on a gradual lowered dose, so upon reaching 20mg of Pred a day, I started to bleed. HEAVILY. I mean, I can’t even see the bottom of the pan as the water is deep red. And this is every time I ‘go’. I’m currently visiting the ‘old porcelain friend’ up to 20 times in 24 hours. I’ve been off work for a week, & am finding it hard to do the basic household tasks.
I’ve been feeling so ill & so alone, I’m sure some of you will understand that feeling. I have a consultant appointment in 6 days, but I have no hope.
Can anybody offer any advice?
P.S If anybody reads this, thanks for being patient. It was a loooong story, but it has felt so good to get it off my chest ;)
-This Story Submitted by “Kelli”
Mesalazine 1,600mg per day – very minimal benefits
Prednisolone Gastro resistant tablets 15mg per day – only beneficial at doses of 25mg or higher
Movicol powder sachets 6 per day – giving me major cramps for minimal results.
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
My name is Nikki. Hang in there. I was diagnosed with UC in 2002. Have you tried changing your diet and following the SCD or GAPS diet? I’ve been on and off the SCDiet for 5 years and its the only thing that really helps and medication at times. All I can stay is keep taking pred and your other meds and try these diets and see if your symptoms improve over the next month…they changed my life. They are hard at first, but they’ll open your eyes to a lot of things that we do wrong to our bodies.
Your not the only one that fells like this, hang in there.
I am so sorry you are suffering like this. If you’re tapering the pred down, you really should nt be bleeding. The fact that it is red blod suggests to me that it is localised to the rectum so a prednislone foam suppository should nip it in the bud. Ask yor gp for some predfoam, gross as it sounds, it really does the trick. I would be more concerned if the blood was darker in colour and there was no stool only blood. If this happened go straight back to your consultant as it suggests the inflammation is no under control so you shouldn’t be tapering down yet. Your story has mad me realise how lucky. Am to have the consulatsnt and team that I do. Do you have an IBD specialist nurse at your hospital?Ever considered moving to Brighton – The Digestive Diseases centre here is fab! Good luck and I hope you get it sorted and feel better soon, and you’re right, thus site and the Facebook page are a godsend. All the best. X
Also, is 25mg the highest steroid dose you’ve been given? I usually get started off at 40 mg for a bad flare and taper down from there.
Hey Kelli, thanks for sharing your story hun! You have been true so much, you are very brave. Katryna’s advice above is interesting maybe you should look into it. Also I know you were thinking about SCD diet the only thing I will say if you are losing that much blood maybe you need more meds as well as SCD diet because as far as I know the SCD diet takes a while to kick in. Take care, Helen xxx
Thankyou for your comment :)
Yes, I do watch what I eat quite carefully & can readily identify what foods are ‘triggers’ for me – namely fibre, sugar, fat & acidic foods. I have only recently found out about SCD & the principle makes real sense, so I want to give it a go. However, having read about the kind of things that Adam eats on it, quite a few of those are my triggers so I worry that if I do follow it, I won’t be eating enough.
What is the GAPS diet?
Yeah, I was instructed to taper the Pred at a rate of 5mg per week, starting at 30mg. At 20mg I not only started to bleed heavily, but am losing clots, too. I have voluntarily taken myself back up to 30mg in an attempt to ease this, just until I get to my appointment on Friday. I have tried foam enemas before & found that my rectum wouldn’t hold onto it lol! It just wanted to purge it all back out & I found it uncomfortable to hold on to. However at this point I’m willing to try anything so I will mention it to my consultant.
When I was under the consultant back in my hometown, it was at Addenbrooke’s Hospital in Cambridge which was supposed to be one of the best Gastroenterology departments in the country, & I feel like they failed me. Maybe that’s my fault.
No one has EVER mentioned to me about having an IBD specialist nurse though I have recently spoken to someone who has one & she says they are her lifeline. Again, another thing I will have to enquire about.
Why is it that everybody seems to know about these things except me? Do the doctors expect me to be a mindreader?
I randomly came across this webpage and read your story. I see many parallels between your life and mine. My name is Kelly and i too am 32 yrs old. I was diagnosed with UC about a yr ago. It has been a great struggle physically and eventually emotionally. It is discouraging when the medications aren’t working and you feel left to deal with the symptoms and pains that come with the disease. I began seeing a naturalpath who was terrific! She got me onto a a low fiber diet(which was a major change to my lifestyle as well as my body) as well as giving up caffeine which i desired daily! and even the occasional beer when at social events. I started to feel better, the cramping was becoming less frequent and the frequency and urges to use the restroom was become somewhat “normal”. This lasted a few months and then IT came back!!
I have been on Prednisone (40mg) for past 6 months, i started at 60 was weened down, and brought back up to help with the flare up. All the medications i have been prescribed aren’t working.. I also have been taking enimas, suppositories as well with daily mesalamine pills. I have been struggling since the end of November . Its been a constant battle daily. Ive been in hospital twice and am now to the point it effects work/school and I’ve become a renigger of plans due to feeling so ill.
Wanted to ask, if you have considered resection at all? or remicade?
everyone treatment to this disease seems to be different, what works for one may not another..
hope to hear from you!
Wow, yeah! Our stories are very similar!
I work for a major health food chain here in the UK & I too am very interested in what alternative therapies/treatments there are for UC…I’m interested to know what the naturalpath advised you?
So far I have tried certain herbal helps such as fenugreek, flaxseed & aloe vera juice.
Back in 0ctober, after coming out of hospital I started on 60mg Pred, & was weaned down gradually at a rate of 5mg every fortnight. I was fine, even at a lower dose. It was just the side effects that bothered me. But, this time around I’m on gastro-resistant Pred & I started to get symptoms back at reaching 20mg per day. It’s odd – the side effects are less on these, but at the same time they don’t seem to work as well as regular Pred.
I feel your pain as the last 4 months have been horrendous for me too……for the same reasons. I’m intending to ask my consultant about Remicade/Inflixmab & other immunosupressant drugs as I really feel that steroids aren’t for me, & that the Mesalazine isn’t working after 5 years of taking it.
What is resection?
What is your status now then? Are you seeing a GI consultant about this? I don’t know about you, but I’ve reached the end of my tether with it now – I feel like my body has let me down & ruined my life & I’m so angry about it, ALL THE TIME. It’s time to take things into our own hands, & not just accept what we’re told & the drugs we are given. If this support group has taught me anything, it’s that we DO have a say & a choice in our treatment. There are options.
Hope to hear from you again :)
I am so sorry to hear how you are feeling right now. I was in the hospital 2x last year..and out of work for 6 months. I kept taking higher doses prednisone per my GI physician, though never could wean off without becoming symptomatic. I was down to 87lbs and I’m 5’3″. Looked a little emaciated for sure. The doctor gave me a choice of Remicade or surgery. I chose remicade—with much thought. I debated for a long time b/c of the list of side effects, including liver damage and possibility of developing lymphoma; however, the benefit outweighed the risk for me. I started getting infusions every 8 weeks. I have taking them since may of 2010…noticable decrease in symptoms within 5 days..though battled flu symptoms and a lot of fatigue with the infusions. I do think this put me back on my feet though, when nothing was working; I tried everything out there. I started the SCD diet almost a month ago. I have def. felt better since starting it. It is getting closer to my due date for my infusion, so this will be the real test as whether or not the diet works without the infusion. I am going to try and hold off a little while this time. If nothing is working, you may want to talk to your doc about Remicade infusions..and consider the SCD diet; It is NOT easy :) but if it gets you healthy, It will be well worth it.
I’ll be praying for you
It’s made me feel very positive to hear your story of Remicade success, as I’m seriously thinking of asking my doctor if I qualify for it. It’s very expensive though so I’m not getting my hopes up, but it’s worth asking!
SCD is really interesting me too….how are you finding it? It seems really tough. I’m going to apply the basic principles, but I know I’m going to have to cheat somewhat as there is so much I can’t eat already.
Thankyou so much for your support! I hope you find continued success with the SCD :)
I’d appreciate your take on it, I hope you reply
Hi Kelli, I’m 32 yrs and have been battling with UC since 2009. The prednisone worked for me for the 4 flare ups I had in 2010, however last December my flare up was worse than ever. I always relied on Prednisone, however my doctor had warned me that I shouldn’t be on it too often. So I’m quite surprise that your GI doctor has put you on Pred every time you flare up. As per my doctor the steroids eventually damages your bones and of course the liver. He’s talking to me about taking IMURAN, when I brought up the Remicade I was told the hospital may not approve as it is expensive, hasn’t been on the market for a long time and if I haven’t tried IMURAN first they might not approve it so I decided to check elsewhere…
My naturopath suggested staying away from milk, sugar and grains. So far this diet has worked and I try looking on the web for different wheat & gluten free recipes. I hope that can help you too. During my last flare up last year Pred did not work for me, a friend of mine gave me a book called “Why doesn’t my doctor know this” by Dr Dahlman and I started the recommended supplement diet and that’s the ONLY thing that helped me. I weaned myself off the Pred as of Feb 20, 2011 and will continue with the supplement diet for another 2 months and see what happens. I really don’t want to take IMURAN as I have heard of many side effects (hair loss, bone marrow density loss, infections prone…etc). I hope you find something that helps you soon. I know how it is…I went down to 108lbs in Dec, the lowest ever in my life….now I’m up to 114lb going up and down between 112-114lb. But I must say I feel much better… You will too.
SCD diet is great but dairy is something Colitis sufferers should stay away from….but that’s my opinion. I’ve switched to almond and rice milk.
Let us know how you make out with your consultant…another thing you might want to do that doctor never recommend is a food allergy test. You maybe eating something that your body is allergic to and may cause the flare ups…! There are two type of allergy test that can be done and I recommend doing both. One by blood test (usually not performed in a hospital) my naturopath did it for me..(not sure how it is in UK but you may have to pay for it) it’s called an IGG blood test.
And the regular allergy test where the doctor places some drops on your forearm and waits and see if your body reacts to different environmental and food.
I have to ask you, have you noticed anything different with your tongue ever since you were diagnosed? Has anyone noticed any change with theirs too?
For your constipation have you tried Metamucil (psyillium seed)? It is all-natural and sounds gentler than Movicol (polyethylene glycol). My gi suggested I use it 3 times per day before food but at this point once is enough – it seems to cushion my insides against the “scratching” of the food passing by (I still avoid scratchy, sharp foods-nuts, black pepper,etc). Many uc patients I know are on it. I’ve been on it decades.
When I started on enemas, I was on preds for years, first few weeks could retain them for only a short while. Dr said keep trying, very carefully, aim for 2 hours, then I could gradually increase time. Then I got off preds. Have never stopped enema’s but sure beats preds! Full dose of 5-asa both ends for long time, but at least ok.