Hey everyone. I posted a very hopeful story on Adam’s awesome site almost a year ago along with some UC inspired artwork…https://www.ihaveuc.com/attn-people-feeling-like-uc-haswill-consume-your-life/ Im not writing to vent about my symptoms today because i dont have any (awesome), everything has been normal with the exception of a week long flare after a week of fairly heavy celebratory boozing for a reunion with friends…my dilemma is one that I knew I would face eventually….
I HAVE NO SYMPTOMS!!! SO WHATS THE PROBLEM???
Its been about a year on Imuran (6mp),
and it has worked perfectly. I don’t even have any of the side effects. I have all my hair (ALL OF IT-my scottish heritage shines through in this department). I can eat anything, although I often cook for myself, eat a lot of fish, veggies, and stay away from fast food. I have a few beers on average once a week. I have a cup of coffee every day… Its like I’m back to normal. What isn’t back to normal is certain parts of my mental health. I am aware of the increase risk in serious cancers for people in my age bracket who are on Imuran. All the studies I see say that “Teen and young adult males” are at increased risk of a particular deadly cancer (I recently turned 24). Thinking about this can be a serious bummer. Often I am able to block it out. I surround myself with good people, I have an amazing girlfriend who is extremely supportive, parents and family who are the same. I keep myself extremely busy with grad school doing work I am very very passionate about. Having these distractions is necessary for me to carry on day to day. I know this because every now and then I remind myself of my situation, my REAL situation and as a result bug hard. Like right now, for instance, its 4:11 am, and I’m giving a thesis topic presentation tomorrow lol. But this all nighter has nothing to do with thesis work (its all ready to go) its just because I once again reminded myself of these risks.
Anyway…none of the mesalimine treatments worked (my throat seemed to swell) I would like to give them another final go. I’m thinking that I will try SCD, the first time I tried it I was in the middle of my first flare which was really intense so I really never gave it an official go, but as Adams doctor said in his newest video, and as every doctor I’ve EVER seen says, they all want you to be on SOMETHING…and I know there’s a lot of hate that goes around about the evil drug companies and doctors just being their minion slave puppets, but I trust my doctors a lot.
So i don’t know, any advice? does anyone taking Imuran (6mp) or even remicade, especially around my age, think about this kind of stuff? If so how do you deal?
I’m still doing some UC inspired art so ill try and get in touch with Adam to maybe post some
Much love to everyone. remember, flares do end.
Where I’d like to be in 1 year:
Off Imuran? haha who am I kidding, I have no clue but definitely healthy
written by Jim
submitted in the colitis venting area
Diagnosed this past June(2011) with Ulcerative Pan-colitis. Suffered a major flare all summer long. Started feeling better at the end of august and was able to return to school. 3 months into school and finally in complete remission after being on Immuran for 4 months
Hi, Jim. I’m definitely not in your age group or a male but I wanted to say I’m not flaring now either. I’ve discovered through trial and error what I can’t eat or drink and coffee is one of them, darn. I can drink gluten-free beer when I’m not flaring but it seems I’ve been mostly flaring since last Christmas so I’m so happy to be flare-free! There really is something to diet, supplements, and drugs. I take atavan when my gut hurts and it calms that down. The meds don’t work for me so I’m med-free and got symptom free without taking them. I hate steroids. I think they are counter productive because pred just makes me jittery and want to eat more and the more I eat, the worse the flare. I’m glad you’re not flaring. Very inventive art work there! Best of luck to you.
Hey, jim…I’m a 35 y/o chica on 6mp. At the year anny of this little white pill I also let the cancer risks keep me up at night. So I went to my doc and asked her to explain further. She spewed out these statistics that actually made me feel more at ease that the pros outweighed the cons for ME right now in my current situation. I’m a numbers geek so really appreciated all of those numerical facts. Everyone’s personal UC journey is different, but that’s where I am TODAY. (Maybe in ten years my journey will steer me a in nother direction, who knows!) Anyway, just thought I would share since I related with your late night fears.
Hey there Im 24 M and have been on 6mp for the last year but it has all but stopped working they are supposed to be putting me on subcutaneous drugs next week… but that just opens the door to more medical problems. To be honest I dont know why Im writing if only to post that you are not alone in your fears, I graduated with a bfa from a good art school two years back, was diagnosed just afterward in 2010 and have basically been in a hospital every other week since… its scary out here… and I dont know how best to describe it other than a living hell… art is a great escape for maintaining sanity through he parts that make us scream, but it doesnt make the pain any less constant.
I suppose all one can say is buck up and sieze the day as best you can… its weird to hear me giving advice like this seeing as ive been agoraphobic for the last four months… but dont lose the things that you love to live for… and forget about tomorrow for now… enjoy that life your working so hard to have because when it turns on you, those happy moments will be your paradise in the insanity this disease brings, and the key to getting through the bad days.
Hello Jim, I have diagonised by UC last June 2011 also and Am 24 F, Im on 20 mg Prednisolone , tablet once in day started to be on diet since 1 week and I feel the difference,Have been on medications since that time.Coffee is really bad for colon it irritates it if you can make it one small cup plain/very light once in a week, but you must be symptoms free. Read the breaking cycle vicious legal and illegal list and you will know which one you need to eat as I have purchased Adam’s book and it also has good informations in it. Hope you feel better just be patient and dont lose hope.
Hey Jim! I’m a 25 F and unfortunately, I’m currently in a flare up. I decided to give the SCD diet a good run about 3 months ago and after a month of being on it strict, the flare I was in then went away. I was so ecstatic that I had come off of prednisone completely but I ended up staying on Lialda and Imuran just for the fear of having another flare up. I ended up starting to eat bad again and now surprise surprise, I’m in another flare up and back on prednisone. I constantly worry about the side effects of all these drugs so I share in your worry with you. I have long blonde hair and every morning when I get ready and brush my hair and some hairs come out, I start worrying. I know its normal for hairs to come out, but it’s just one of those things that’s always in the back of my mind. Thank goodness I haven’t had any serious side effects from the medications other than some bad leg cramps but I constantly worry about what else the medicines are doing to my insides and I worry about my future since I’m fairly young. Just wanted you to know that you’re not alone with the worrying and best of luck to you.
I would try the SCD diet and whatever else I can. I would not take remicade. That stuff used to be used to treat cancer patients and one of the side-affects can be cancer and lupus. The doctor was going to put me on that stuff and I am not young (45 1/2) but who wants to spend what remaining days they have in horrible suffering regardless of how young or old you are? Anyway, yeah, I have nothing against drugs for other people but I try very hard to stay away from them. I certainly am not interested in taking them long-term. If one has to they have to though. Best of everything regardless of what you decide to do.