here’s a picture of me and Hayley Williams to attach, since I put the quote in I thought it’d be fitting!
Introduction:
I’m 19, from Dublin, Ireland.
I was diagnosed with Severe Pancolitis on 6th September 2011 after struggling with symptoms from late 2010 – Early 2011.
I was very sick by the time of medical intervention, requiring a 9 day hospitalization with blood transfusions.
For the last 2 years I’ve been pretty well, and been in almost complete remission since March 2012.
Some more about me:
I’m interested in Medicine and would love to be a doctor, although my illness caused me to drop out of school at 16.
I’m also a huge music fan!
Symptoms:
Chronic Fatigue
Abdominal cramps.
Life After Diagnosis
It’s been a while since my last post here, so I’d like to start by saying Hi to any of the old users I used to communicate with on this site, and I hope you’re well
As well, I’d like to thank Adam for keeping this great site running. I remember the week after my diagnosis, this was the first site I found, and it made me feel far less scared about the journey I was about to embark on.
Life right now with UC is the best it’s been in the 3-or-so years I’ve been diagnosed with Ulcerative Colitis!
There is life after your diagnosis, which is something I really didn’t think i’d have.
When I was at my sickest, they thought I was going to die, and it dawned on me the amount of things I’d never done, I was only 16/17, so I thought I had plenty of time to do them all, but life isn’t a set amount of years that you get, you have to make the most of it while you have it, and that’s exactly what I’ve been doing!
I’ve decided, this disease doesn’t rule my life, my life doesn’t revolve around UC and UC treatments, I’m living my life and letting Ulcerative Colitis find it’s place in my life.
I’ve a very active social life now, with none of the same friends I used to have, but much better ones! my infusions fit around my life, if I want to go do something, they postpone my infusion a day or 2 so it works out pretty well!
I’m also planning my first trip outside of Ireland, to Orlando and Miami,FL and The Bahamas!
The thing for anyone newly diagnosed to know is, the disease might have taken your life for a few months, maybe even years before your diagnosis, that’s gone, you’re going to get your life back.
you’ll find a medication that works for you, and if not, there’s always the surgical option.
Remicade has been a true miracle for me, and in the year and a half I’ve been using it, I’ve never had any serious problems apart from some bad throat and ear infections.
I never thought in a million years that in a few years time, I’d be this well and happy again.
to anyone who’s not currently feeling as chipper as I am, I’d just like to leave a message that I got from Hayley Williams (the singer of Paramore) when I was at one of my sickest points
“Stay as strong as you can, and when you can’t, let others be strong for you.”
Medications I’m Using:
Remicade
written by Jamie
submitted in the colitis venting area
I’m From Dublin, Ireland
Back in November 2010, I noticed some changes to my bowel habits.
Before this, my bowel motions were pretty much once a day, normal motions, but on November 5th I started to get looser motions, which became more frequent, at the start I thought this was absolutely nothing to worry about, and within 2 weeks it sort of returned to normal.
Hi Jamie:
Good to hear Remicade is working for you. My doc has been trying to talk me into it since diagnosis a couple yrs ago. But I get turned off every time I read the side effects. So, just doing oral and suppository mesalamine. What a pain in the ass … pun intended ;)
Don’t let UC keep you from becoming a doctor. I bet you’d make a great practitioner.
Be well,
Sharon
Hi Jamie! You are one very positive dude! That’s great man and thanks for sharing your story here. This is a great site and I sure wish It was around when I first got diagnosed. I had to stumble around blind for a few years. I am glad you’re feeling good and it sounds like you have some exciting plans. My late uncle Joe always said “do it while you’re young” and I have always held to that. Don’t wait to do what you want to do. There are no guarantees in life. I was also considering Remicaide but it didn’t work well for my brother so I decided to go with fecal transplants first to see if that works. If the Remicaide ever stops working for you be sure you look into FMT ok? I am doing well after 11 transplants and am very hopeful that I will be cured. I hope you continue to feel good and do everything you want to do. Take care,
Don
Wonderful post!
Cheers to you:)
Hi,
I was diagnosed with mild UC in Rectum and lower sigmoid early this year in Jan 2013 with stools just twice a day initially. They started me with Pentasa for first quarter but my disease started deteriorating. My first bad phase or flare u can call it happened in May, where my bowel moments increased to four to 5 times a day..Lasted for few weeks and then I was on oral Prednislone which worked fine and worked for a month but again UC relapsed. This process repeated in October. Then they tried Azathioprine (Imuran) but again was told to stop it in 2 weeks time as I started vomiting and had nausea. Could barely eat..Since last week I was bleeding with liquidy stool atleast 4 times a day..I have been admitted now in Hospital. The want to put me on Infleximab (Remicade) but after doing all the test. I am on Hydrocortisone Injection for 4 days and then with a camera test and depending on the condition of flare the Remicade will come in place. Good to hear that Remicade did wonders for you with very small side effects. Have u also modified ur diet completely along with it? I am a vegetarian? Is diet an important factor as well? Can I travel much while I am in Remicade? Would some else definitely recommend Remicade. Please I would appreciate ur reply?
Male – 29 yrs of age. Job – Banking, Location – Manchester, Weight – 50 (Was 56 when diagnosed)
Hi Chetan,
I’ve been on remicade for 10 years with no side effects (and have achieved clinical remission for most of it). I’m 25. Diet is super important no matter if you are or aren’t on medications. It’ll help you manage it better. I would recommend it in a heartbeat. I’m from the States but studied abroad for a year in undergrad (London and Florence) and received remicade at local hospitals in both. I’ve also traveled to Japan for 1.5 months. Traveling is completely doable on remicade as long as you time trips in between infusions and/or find a local doctor who can prescribe it for you if you’re out of the country for longer. I hope remicade works for you! I’m guessing you mean Manchester UK, if that’s true British doctors have a tendency sometimes to start and stop remicade….don’t do that. It increases your risks of developing antibodies to it.
Jaime, I’m so glad remicade worked for you! I know sometimes it gets a bad rap but it can work for some people. And I love your attitude…staying positive is the best thing you can do! PS…. I miss Dublin! I loved visiting it when I studied abroad….although the ferry crossing from Holyhead was a little rough with a huge storm. Luckily I don’t get sea sick!
Sorry My message came twice. JamieIsLame can I please if possible also get your contact details so that I can tak to u more abt Remicade..Plz plzzz
Thanks Angela for your reply..Thanks for all your advice on Remicade.. I didn’t know remicade can be taken for 10 yrs..Yes I mean Manchester, Uk. I will ask the doctors on how long they plan to keep me on Remicade if they advice me on that treatment which will only depend on my camera test tomorrow.. Initially they said for an year.. Injections every 2 weeks, 4 weeks and 8 weeks for an year..Thanks for the diet advice..I am a vegetarian but I eat eggs though. Is there something in diet that has worked best for you or while in Remicade? I will try some buildup shakes as at the moment I am just 50 kgs and need to gain wait..Do u take milk as milk can aggravate the disease if I am not wrong so they are suggesting me soya Milk. Thanks again..Keep me posted. People out there if you get 5 mins of your time then I would really appreciate your reply and sugestions.. Thanks..
You’re more than welcome! I’m glad I can answer your questions! I didn’t know they could either until I went this long haha. The 2, 4, and 6 weeks is the standard intro dosing to get your body used to the meds.. from there they should set a standard interval for infusions. I get infusions at every 6 weeks, 5mg/kg (around 300mg total). The diet I use is more of just healthy well-rounded eating…..I eliminate anything highly processed (like boxed dinners etc.) and things with high sugars, preservatives, and artificial colors which seems to help. I do drink milk (low fat only though) and drink a lot actually…around 3-4 glasses a day and it doesn’t bother me (it can for some people so try it and if it does bother you then you can stop and go back to soy). The protein shakes are good but until you get the inflammation under control you’ll have a hard time putting weight back on since you can’t absorb the nutrients. Good luck on your test tomorrow, I’m hoping for the best for you! Feel free if you have any more questions to contact me :)
Hi Again Angela,
I had my flexi sigmodoscopy done of my intestine. The flare up was mildly persistent and not at a severe level which was a relief. The doctors told me probably they will keep me on prednisolone steriods for month and a half after they get me off the Hydrocortisone Injection tomorrow as they don’t want me to get the flare up again. Mo bowel momemnts have gone to once to twice a day since yesterday but these steriods can be beautiful evil so not sure how it will effect me in long run. Once they taper me down on prednisolone after a month and a half and then plan to side by side introduce me to 6 Mercaptopurine. They don’t want me to go on Infleximab at the moment. Have you even been on this medicine? I am sorry to ask so many queations. Just taking general advice from different people on different medicines. I trust the doctors but patients like you who have gone through these can help me cope up better in my tough times. Appreciate your help here. Where are you based at the moment? Can I get your email or contact plz? Someelse out there can also give me some advise on 6 Mercaptopurine? Thanks all..
I’m in Pennsylvania at the moment but my doctors are all in Ohio. I was on 6-mp when I was first diagnosed but had to go off of it within a couple of months as I had a toxic blood reaction to it so other than that I don’t have much experience with the drug. I’m glad to hear that your tests came back better than expected! You can email me at akolosk@gmail.com.
Hi all, i am back in the hospital again today. I was discharged last thursday with 6 MP and prednisolone steriods thinking it will work but i started getting severe back ache and tummy pain during the night from next day. It mainly increases during night. Not sure why? I was then given pain killers like co-codimol which gave me slight relief but i am now constipated since 4 days. My crp has gone up to 50. Not sure what’s happening? They have asked me to stop 6 mp from today and said this might be a side effect of 6 mp. Any body has any idea is the constipation due to 6 mp. I am in iv steroids in the hospital. Please help