First Online Outlet

Colitis Jed at Dinner

I’m Jed, I was diagnosed with UC in 2007.

Meet Jed:

Diagnosed in 2007, from the UK, 28. I was in the first year of University in 2006 when I started with abdominal pains and passing blood/mucus. Did the typically male thing (I think it’s just males who are dumb, right?) and ignored it for a stupidly long time. I continued drinking in abundance, eating take away meals and drank multiple creamy coffees almost daily to recover/wake up from the previous night’s drinking. So, as you can imagine, my symptoms grew gradually worse/more impressive – however you want to look at it! :-)

I didn’t tell anyone what was happening and kept it all to myself, embarrassed about what people would think, I suppose. Then one day I had a nice milky, sugary, porridge for breakfast and it wasn’t long before I was in agony with my symptoms, I’m talking fetal position in my bed with cramps, between bouts of painful restroom sessions. It was like I had consumed a bowl of lava! Anyway, I went to the hospital the next day and was sent for the all the usual tests. I was then officially diagnosed with UC.

Jed’s Colitis Symptoms:

Currently experiencing my longest flare since I was diagnosed back in 2007. ‘The usual’ started in the second week of March and I thought it would just get better on its own as I had just moved cities and started a new job (also include in that a change in diet/getting used to new foods), so I ignored it for 6 weeks hoping it would get better, before I realized that I should probably go to the doctor and request some stronger medication. He put me on steroids, which improved the symptoms slightly, but over here they seem to reduce the dose pretty quickly (just kept me on them for 1 month). So, still experiencing moderate symptoms and decided it was time to get myself an online outlet, henceforth…

Jed’s UC Story:

I ignored my UC for a very long time and thought that the medication was THE solution, at first. In all honesty, it took me a few years to really accept that I had a condition that was going to require a lifestyle change. Truly – I still don’t do half the things that I should and that is no doubt why I am sat here typing this stuff out in a coffee shop today.

Living in South Korea, a country where drinking and spicy food are a solid part of being social, is a little awkward for me sometimes. Being an English conversation facilitator, I have to squirm around kind offers of ‘dinner’ or ‘drinks’ from my students. I have lost interest in drinking these days because of the after effects it has and dinner generally goes hand in hand with drinking. Dinner also usually includes Koreans trying to make me eat spicy foods, just kindness of course, but so awkward when you have to adamantly refuse – I’m sure you can imagine. So these days, I just suggest a tea in a coffee shop at a later date (when I’d feel my symptoms are under control and I don’t have to make continued trips to the bathroom) and I just say I have plans or that I am busy if they insist.

That’s the biggest change I suppose, as I used to be a fairly social person and I also enjoyed a drink or two. I don’t mind the fact that I can’t do the drinks anymore, it just takes a little getting used to I suppose.

In a flare, the fact that I (we) have to be near a toilet is obviously very limiting to us all. That is something that also took a little getting used to for me personally. I caught myself just staying in my apartment and wasting my days off doing nothing because of the fear of being ‘caught out’ with a ‘no-toilet-situation’ in public, or indeed a ‘full-cubicles’ situation as well, almost worse – so close, yet so far! The sense of urgency compounded by the sense of fear is something that I like to avoid as much as is humanly possible. Again, it’s something I have tried, tested and learned to cope with.

Here in South Korea the doctors (or at least the one I’m currently seeing) don’t like the idea of putting someone on steroids for longer than a month, due to ‘steroid dependency’ – is that the norm?

I also requested to be put on immunosuppressants because I don’t want it to become a problem at my new job – he asked me to think about it. So; Has anyone used these? Were they effective? Would you recommend them for a short while just to get back on track? Or would you try a diet change before going so extreme with meds?

I know the latter questions depend on how bad the symptoms are and how much trouble the symptoms are causing at work etc, but I’m mainly curious about people’s experiences with immunosuppressants and the possible side effects I may encounter.

I also cannot have diary products, especially milk, I have to avoid coke in a flare, but I’m pretty sure that usually it’s okay. I’ve been reading a lot over these past couple of days and I’m now trying yogurt out, so we’ll see how that goes.

Looking forward to getting into the chat forums and hopefully learning some new things that will help me gain more control over my condition and therefore, my life. Chat soon!

Where I’d Like to be in 1 year:

Well, symptom free would be incredible and having confidence in what I can eat would also be amazing. I’ve even read that some people are also medication free – that would be great. Firstly though, a year without a flare would be superb.
Colitis jed from United Kingdom

Here I am having a good time!

Colitis Medications:

Asacol; two 400mg tabs three times a day (breakfast, lunch, dinner) and some form of steroid. I only have a few days left on that, at a dose of one 5mg tab in the morning with the Asacol.I’ve tried these before (while in Korea) and they worked great, but I got myself to the doctors earlier that time and I’ve found that this time, maybe because I left my symptoms go untreated for too long for the steroids to fully pull me back to somewhere near normal, so my own fault I guess.

written by Jed

submitted in the Colitis Venting Area


9 thoughts on “First Online Outlet”

  1. I am on Imuran. (immunomodulator/suppressant) I take 100mg daily. I just started them, about a month ago….and seems to be helping. I’ve noticed being on them, I run fever alot. I utilize tylenol for that. I’m also on Remicade….and at first it was a miracle drug…but then I flared again, and they doubled the dose.
    I like you, let my problems go for about a year before I went to the dr. I went in a near hypervolic state. I was so anemic…..and didn’t even realize I was. :( So…no…it’s not a ‘guy thing’…I just didn’t want to know if I had cancer. (I kinda wish I did now….so that chemo and etc would just cure it, and I’d be better eventuallhy…? THIS, …this is uncurable, ….unless we remove our colons…and that’s nearly where I’m at.
    So….good luck to you, and I hope you find something that helps you soon.

    1. I hope things improve for you, Amy. Have you tried altering your diet at all? I’m curious as my flare started in March and my diet changed considerably, so I’m putting the blame on that. I’m currently trying yogurt and chicken, fingers crossed!

  2. No, not a male thing… I also did not go to the doctors when I first had it. Nowadays I again don’t really visit the doctors but of completely different reasons.

    Also been living in South Korea for some time, they really have tasty food there, in a flare it might be too spicy though.

    Been on immunosuppresant and didn’t have a flare during that year but somehow didn’t feel very healthy either. Today I am trying to be medicine free instead. Trying to get the body to heal on it’s own with some supplements (zn, b-vitamins, L-glutamine, probiotics) and diet (SCD/GAPS).

    1. Hey TiiniTete. Wow, brave move. How’s that working out for you?

      The food here IS good, and rice seems fairly easy on the system (although I can only handle so much of the stuff). I also read that fermented foods can help as well, I sometimes cook the odd bit of Kimchi with some sam gyop sal…

      Chat soon!

      1. Hey Jed,

        The thing is that I feel it is working: Being on the SCD/GAPS diet and eating a few supplements… Listening to my body. I might take the asacol enemas (already had a surgery so enemas cover the whole large intestine) a few days if I start to get really worse.

        About the brave part: Yeah, I get a bit scared from time to time and just wish to follow the advise from a wise one (this site seems to have many who knows a lot, thanks for that Adam). But the doctors I met have no clue, seriously no clue. And the more I look into it and ask them questions the more they start to giggle (seriously, they do, they get so nervous when they realize they don’t know shit and are really not even trying) and come with excuses… Now I sound like the bitch from hell, but yes I am not stupid and if they loose their face I don’t care since this is about my health. A good doctor should be open to what the patient says and not be afraid to be proven wrong.

        Korean food: I was totally addicted to kimchi in all it’s forms when I lived there, I also used to have a kimchi base which I poured on all my cooked meals while staying in Japan, not realizing this is fermented and that I needed the probiotics. I always felt better when living in asia I guess it’s since rice is better than wheat. But right now I also avoid rice due to the diet.

        1. Has the diet help you ??? I been fighting this for so long now with medications that faile one after another. I also have PSC. The liver disease. I’m almost giving up hope .

  3. Somehow I never reply to stories or have ever been able to find someone with colitis who I can relate to. I give you kudos for moving to teach in Korea. I’m currently a rising 22 year old senior in college and was diagnosed with colitis in 11th grade. It took years before they were able to actually diagnose me with colitis. When I was first diagnosed I didn’t like the reality of not being able to eat or drink what I wanted. I loved to be social and go out at every opportunity I had. Level 1 drugs that were prescribed to me such as Asacol I would sometimes take it if I could remember. When I finally knew it was time to head off to college I became concerned about the bathroom situation and how I would fare with colitis in college. I became better at taking my level 1 medications and did not see any results. I was then placed on steroids for 6 months. Quite possibly could of been the worst thing for a young person trying to go off to college to be on. I had always been little and I gained 30 pounds, had acne, moodswings, yet found relief in my symptoms. This wasn’t working for me. Being 30 pounds overweight in college and having acne didn’t work for me. I came off of it and went back on different level 1 medications and combinations. I found out I had a b-12 deficiency and now have injections monthly which have helped boost my immune system. Not getting much relief from the medications I also tried going gluten free. Being a junior in college and gluten free was difficult but I found many people found it interesting instead of turning their noses up because I was turning down a drink at the bar. It is hard to go out and drink let alone drink at the rate the rest of my friends do. This year I have started to realize that going out and drinking isn’t everything. In fact I have found out that having colitis has helped me to become a better more mature person. It is always a good feeling when the rest of your friends wake up feeling nasty the next morning and you are ready to hit your classes and school work head on. I will admit it is still hard when people question why I don’t go out regularly. Finally this spring I realized that I was trying to avoid even having a boyfriend because I didn’t know how the bathroom situation would work out or how I would even explain to him I had colitis or even worse WHAT it was. I realized I was avoiding trips and many social situations if I knew I wouldn’t have my own bathroom. That is when I exhausted all level 1 and 2 drugs and also tried probiotics and the gluten free diet. I still didn’t find relief so I made the executive decision with my doctor to start 25mg of 6mp. I started May 5, 2012. So far I have gone back for 2 rounds of blood work and go back tomorrow. I am not symptom free but I am better and have not experienced any of the harsh side effects. The first two weeks I did feel a bit lousy as the medicine was getting in my system. I would recommend trying an immuno suppressent drug if you have exhausted all your other options and are screaming like me to be “normal”. I knew that not drinking on 6mp at all would be impossible so before going on it I made sure to ask my doctor if it was ok. It does list on the bottle not to drink but a couple of drinks 1 or 2 nights a week has not hurt so far. Everything in moderation. For diet, I would suggest trying a gluten free just eating things that are easy on the stomach help tremendously however that is not always the easiest option. I often find myself eating something bland before going to meet my friends for dinner and then order something small on the menu that I know won’t upset my stomach. I hope this post helps you! Let me know if you have any questions!

  4. Hey Jed, Good story.
    I too was diagnosed in the beginning my college days. I was officaly diagnosed just after I turned 20, but had symptoms for like two months prior to being diagnosed. I too am put in TONS and TONS of situations when I turn down food or drinks etc.. I used to be quite the booze hound I would say back in my early college days, but alcohol and colitis dont go hand and hand.Its definitly hard at first, but Im so used to it and my friends are so used to it, they dont even bat an eyelash anymore. Hope you get through your flare man, Ive been their before, we all have.
    Best of luck,
    Johnny D

  5. Hey Jed – I also was diagnosed during early college and also didn’t go to the doctor, instead drinking lots of alcohol and coffee, and I’m a girl!
    Anyway, I wanted to encourage you to try the diet changes before taking immunosuppressants. When I tell my story about my medication reactions it generally seems like I have some history of allergic reactions and am super abnormal… so just to make clear, I never had an allergic reaction in my life before taking these drugs. I had never had hives or a rash or anything.
    My last year of college, I felt too stressed about completing my thesis work with UC getting in the way and I started on Imuran/Azathioprine and took it for several months with some, not total, relief of symptoms- though the known side effect of nausea was no fun. I got the worst hangovers when I was on it. Anyway, suddenly, after maybe 4 months, I broke out in a yucky rash and had to discontinue it. The rash subsided after about a week from quitting Imuran.
    That situation was no fun – I had just started dating someone and he came over only for us to discover that my skin was covered in freaky welts ), very embarassing… so I decided I wouldn’t touch those stronger medications again. And I didn’t, for a year…
    Unfortunately a year later I was feeling that it was difficult to hold down a job and decided to start Remicade. I posted about my experience somewhere on this site, but long story short – I took this for a few months and did experience some, though not total, relief. I had already been gluten free and dairy free for many years, just because those ingredients really exacerbated things, so it wasn’t like I could eat anything I wanted, and I still tried to avoid alcohol, caffeine, etc. Anyway, one day, out of nowhere, several weeks after an infusion, I broke out in another rash. No one could figure out what it was for 3 weeks, at which point I was so covered that I couldn’t really wear clothes or leave the house or even sleep, I even lost a lot of weight though that never happened from UC… and showering was severely painful. I had to cancel my trip to visit family over the holidays due to this. Finally some biopsies were reviewed further and I was started on Prednisone – thank god that cleared it up. Though I stopped taking Remicade, the rash has continued for almost two years. I take 5 medications now to control it, including Prednisone, which I have lowered to 7.5 mg by adding in all the others…with lots of side effects (2 medications I take to combat side effects from the others). Doctors, and I’ve seen many, all agree that Remicade caused this condition, even though technically Remicade should treat it.
    So in my opinion, these drugs are very dangerous for your system, and they are not totally understood either. Especially the biologics like Remicade and Humira… though rare, they have caused some bizarre reactions in people. At the same time, they help many people, but I hope for everyone’s well being that they experiment with diet changes first.
    The SCD diet has given me a lot more relief from UC than any medications – but it really has to be followed strictly. After these horrendous experiences, it’s worth it.
    Best of luck to you, and I think aspects of the Korean diet are really healthy and can be eaten on SCD with some modifications if you can arrange that. Kimchi is great for the probiotics but might be too acidic during flares… Glad you found this site!

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