How Ulcerative Colitis has changed my life 3 of 3

[gogovideo10]

I'm currently on 35mg of prednisone and 1g of mesalazine 3 times daily and i'm so scared that once I stop taking the steroids that i'm gonna get sick again, but for the moment it's only been 3 weeks and i'm feeling so much better, but I hope I don't end up the way you did!

I'm glad that i'm not the only one going through this disease though, thanks for making this video

[lilfreeway21]

did you ever try taking probiotics? Did that help at all. Is there anything that has helped you at all wether it be medecine or holistic?

[lepetitpoulet]

Thanks dude! Feels great to hear others wih the same condition. You're right, people without UC can't understand. Been diagnosed 4 months ago (age 30). Have been put on asacol for a year and prednisolone for 8 weeks (40mg a day for a week, weaning down by 5mg per week down to 5mg a day the last week).

My weight is finally stabilised. Going "pit stop" 2-3 times a day now, a lot beter, but had to change jobs to something i can do from home. Have no idea what the future holds. Big love to UC peeps

[blindmellonchittlen]

Hey buddy, I was there about 1984, im 51 now, laying in bed thought I was almost dead. Did you ever try Rowasa suspension Enemas. My GE, told me storys how he had patients on intravenious steroids and no response, given the enemas at night before bed, uc completely cleared up. Gone! Just consider it , another thing is one of my best buddies almost died from UC, once he was under control , but still had symptoms, he started eating carrots, till this day hes been symptom free. Says hes cured.

[custardsucker]

hope it works out 4 u man i got the same probs good luck and thanks 4 sharing ur story

[tardis81]

Thank you for sharing your story. I've suffered with UC for over 10 years and fortunately I have had periods of little to no bleeding, but it seems like every year I have one or two major relapses in which I can eat little to no food and have to have a straight liquid diet. It's very discouraging when going through the symptoms and trying to explain to people what it's like, so I find it very encouraging to know I'm not alone. I hope the treatments work for you.

[undeadninja]

I'm going through the same things you are man, although my diagnosis is Crohn's disease. I just started taking Imuran, and will be injecting myself with this drug Humira, which is going to be a big hassle. It's the same class of drugs as Imuran (immunosuppresants). I'm taking 60mg of prednisone also. I just want get this in remission and keep it there. Have you ever gotten sick or infections from being on the Imuran? They said to be on the lookout for Tuberculosis and stuff like that.

[redwriter1]

How are you? My son had this when he was 17.. and we went on the SCD diet and it totally worked. He is 19 now and eats whatever he wants.

[timskinner23]

@redwriter1 I am doing ok. I am getting remicade infusions more frequently, and they are working but i can tell the effects wear off quicker. overall i would say i am ok. I have tried many different diets, with none giving me any noticable advantage.

[redwriter1]

Well we didn't try many diets, we just tried this one from the very beginning. The book was written by a biochemist who really knows her stuff. I would hate to take shots and drugs for the rest of my life. Just a thought.

[MsZiggi1]

oh yes...the insurance. I lost mine due to having to quit my job and NO ONE would take me, if they did it was 50% more a mo. Good luck to you and if you ever have questions about the surgery, before/after or whatever, please don't hesitate to ask. I couldn't have done it without knowing what to expect afterwards and I had found someone on FB who helped me out tremendously!! You will be fine, just know there is light at the end of this tunnel & to have insurance with ur parents is a plus!! =)

[wordey123]

"I wanta be normal again" I think thats all of us IBD suffers words.

[baahaba]

I was diagnosed with UC when I was 8 or 9. I was on many drugs including Prednisone, but it got so bad that I had my colon removed at 10. I missed most of 5th grade, and had a total of 4 major surgeries, one or two being emergency. Now I'm fifteen and living with a J-Pouch. It's been great; I feel so much better than when I had UC. Although it does often interfere with life, and I've had a J-Pouch for five years, I am still working on living normally, and trying not to let it control my life.

[wreichert]

I was diagnosed in May of 09'. It's now a few days before Christmas 09' and back in the hospital typing this with my iPhone right now because of a flare up. Averaging about three days in the hospital per flare up. I feel for you, and hope we can beat this somehow.

[hopesender2010]

God bless you Tim and I hope you feel much much better. Let us know please how you are progressing. You seem to be such a strong person. You can beat this !

[timskinner23]

So far the remicade seems to be working ok. I hope to do a follow up video soon but have been ridiculously busy with school but am on break now. I have noticed the affects are starting to wear off quicker between doses so i need to get my doses at every 6 weeks instead of 8.

[MsZiggi1]

timskinner23 Oh hun, ur story is my story! I'm in my mid 30's & was diag in 10/07. Steroids were the only thing that worked, til the last 4 months my body just was used to taking them. I was on remicade, it made me sicker. I had surgery 3 weeks ago, was scared to death and didnt want it, but had no choice. The swelling was too bad. I had a colectomy on 5/28/10 and feel revitalized!! I have a iliostomy bag now w/the choice to go back, get reconnected in 6 mos. Plz think about surg.

[timskinner23]

@MsZiggi1 I am definitely considering the surgery. I am not getting the same benifits with each infusion as I once was. Also another reason to do the surgery is because I am only on my parents insurance for another 3 years and have tried to get my own insurance but am constantly being denied because of ''pre-existing'' conditions.

[edwardtang1977]

oh sorry ..just saw that you've tried remicade...how is it going now? Are you better? My ulcers are killing me too

[thepatient403]

Like you i was diagnosed with severe UC, failed everything including remicade and had the surgery, although they initially thought i had crohns colitis, so they basically took out everything and hooked up the rectum to my cecum. Post op is a nightmare, but now 9 months later its like i never had UC...i'm pretty much 100%. Currently on imuran and salofalk. Like you I fear judgement day where it comes back and i have to go thru hell again. Stay strong brother, strength through wounding.

[zxcvbnmmasdfghjkl]

I feel for u man, Im on the exact same boat. I'm in college now living wtih uc, I was diagnosed when I was about 14 took asacol and these enemas and different pills too. I was in remission for about 5 yrs then just like 2 months ago i was starte again on asacol to help, it hasant. But my symptoms weren't as severe as yours seemed, it's virtually impossible to live a normal life. I'll pray for u man, good luck!!

[exitxi111]

I feel we are living the same life... I was diagnosed with UC last January and since then life has been a terrible nightmare. I know exactly what you are going thru. I've taken Lialda, Asacol, 6-MP, etc. but they didn't work for me. 6-MP did work great for about 6 months, but killed my white blood count. I got my first Remicade iv today, so hopefully this drug is the answer. I wish you the best of luck. I know how you feel...

[timskinner23]

I took vancomyacin when i was first diagnosed and had c-diff. it didn't help me then and they had to give me flagyl

[EastAfriKinG1]

May Allah(swt) guide you to Islam and give you health inshallah ameen.

[Bellatone]

Ask your doctors about the medication vancomycin....Its a very strong antibiotic..Worked for me so far for keeping my UC in remission with out having to use steroids . I had a really bad flare up that landed me hospitalized as well...Good Luck...Peace & Love~~xo

[melonmanhart56]

I just finished watching your three videos.. I hope you get feeling better soon. I was diagnosed with Crohns Disease and UC 14 years ago and after being on prednisone, sulfasalazine and pentasa for a year, I went into remission for 12 years. The UC came out of remission and have now been diagnosed with Wegeners Granulomatosis. I am back on prednisone, and am starting Imuran next week. Don't give up! My doctors at Mayo Clinic in Rochester, Mn are the best! Good luck and feel better buddy!

[burgmail]

In case you're not checking the comments on previous videos, have heart! I CONQUERED UC without surgery, and after a year I was hardly using any drugs. Check out my video ("Conquering Ulcerative Colitis WITHOUT SURGERY : Prologue") and join in the discussion!

[timskinner23]

Thank you all for the comments. I will try to post a follow up video in the near future. I had a pretty severe flare from feb to may, and will start Remicade next week. I was in the hospital for a week about a month ago and had to get 3 blood transfusions because my hemoglobin level was so low. I will let everyone know how the remicade is working after my 2nd infusion.

[batman1002e]

thanks for taking the time to post this man. iv had UC for year now and needless to say its been the roughest time of my life. im 22 years old so im a astrapping young lad like yourself. had just graduated from airforce BOOTCAMP and then i was diagnosed and was discharged. UC has ruined my life. i try to keep on goin but its so hard. but again hearing other peoples stpries really helps me so again i wanna thank you for sharing with us your curse.

[jones013]

Hello, I have UC too...since I was 11 actually. I'll be 23 this year. I am thankful to say, however, that my condition has never been as bad as yours. I was on Asacol for the beginning proportion of my battle with UC. I was recently switched to Colazol about a few years ago. Did really well on this drug, but have recently been having flare ups for long extended periods of time. Just wanted to tell you that your story is touching and I wish you the best.

[smutekface]

I just watched your videos, I have really aggressive UC and like you it was diagnosed early in 2007, it still isn't under control. It really does take your life away, so much time wasted in bed and in hospital.

I really don't want surgery but its looking that way for me at the moment.

Your videos made me realize that I'm not the ony one whos in agony all day, feel sorry for you dude.

[PENWESTERN]

Today is 12/31/2008. I sincerely hope that 2009 is better. I am not a candidate for surgery because crohns can never be cured. The inflammation returns at the resection. I understand that ulcerative colitis is cured with surgery. Perhaps there is a type of surgery for you that will make you better.

My face is a little puffy now from Prednisone as I write and can't wait to taper this stuff.

Best to You

[Lonkert]

had a chance to watch your videos, i have had UC since i was 17, i am now 29 currently in a flare up. i will be doing a video response to your videos within thwe next couple of days. thanks for sharing!

[sambozze]

I just started minor flare ups of UC. This is my third one ever and stomach pains are present. I have had two colonoscapies and UC runs in my family. I am absolutely scared to death of and do not want to take ANY pills. Is this crazy? Is this possible? Does anyone have any suggestions? Thanks to everyone on the battlefield and we will win this war!

[athlonier]

i found that most people use sulfasalazine it works the best

[briansparker]

thanks for all the info tim, it nice to hear it straight from the horses mouth. not that you are a horse. i hope your future kicks your past's ass! see you soon bro!

[GISGuy31]

Your UC was severe like mine. I wanted to be off all the pills...up to 20+ a day. Do you how much damage they are doing to your other organs? The j-pouch surgery was the logical choice for me and I have no regrets. I feel 100% normal, have my energy back and live normally again. The surgeries suck, but life is a million times better without the defective colon. My GI said "even in remission, your colon is still under attack, which leads to you having 30x the colon cancer risk 20 later."

[timskinner23]

thats awesome that the remicade is working for you guys, hopefully the imuran works for me and i dont have to go to that step, but i will gladly take it if it comes.

[sfmichale]

it's funny that my doc did just the opposite of yours starting me on remicade first, he said because it starts working faster when it works and my previous year had been so hellish. they so clearly don't have a handle on this disease, it really needs so much more research. each infusion i get, my symptoms get better, so i'm really hoping one of these times it's gonna be no symptoms again. because like you, i really dread the idea of the surgery, but i'm ready if it comes to it. peace! mike

[sfmichale]

good luck, man. i was diagnosed with uc when i was 25, and had mild/moderate symptoms for three years, then 15 years of remission during which i took no medication. then bam, a year and a half ago, it came back and this time it was severe like yours. none of those first line medications worked for me, not even 80 mg. prednisone. in april i started remicade infusions, just had my 5th one two weeks ago. it started helping right away, but only now am i feeling close to normal again.

[timskinner23]

Thank you.. yeah it's extremely disappointing, the fact its taken them so long to figure out, plus everything else thats gone on. I've gone down another 10 MG since the video on prednisone, and its getting harder to deal with stuff. bleh.

[1llipsis]

Sorry you've had to endure such a rough experience with UC so far, it sounds like it took WAY too long for your doctors to properly diagnose you, especially since your symptoms are pretty textbook for severe UC...I just got diagnosed in June too, having similar symptoms, but I was fortunate enough to have a doctor that pegged it as UC after a little more than a week...hang in there, hopefully the Imuran does it's job...I know it sucks, but hopefully there is a light at the end of the tunnel

[timskinner23]

Thats awesome that the imuran is working for your crohns! I'm waiting for it to kick in for me. I tried all the yogurt and everything as well, i also have tried going vegeterian and staying away from dark meat, but that really didn't change anything, spicy i definitely have to stay away from! Thanks for teh encouragement, if it comes to the surgery, i'll be ok with it, it will just take a huge chunk of my life away from me, but its not like it hasn't already done that!

[iloveperkins]

Sounds like you had it really rough. Sorry to hear your awful story. I was diagnosed with Crohn's early last year after finally being admitted to hospital. By that time I'd lost so much weight and muscle I could barely walk. Similar to you, my symptoms returned as soon as I came off steroids. Currently on imuran and pentasa, and that's working pretty well for me - the best I've felt for a long time. It's an odd feeling to realise that you don't have a pain in your gut all day long!

[iloveperkins]

I hope that your new medication works for you- took a good month or so for Imuran to start working when I was first put on it. I've tried all the yoghurt, aloe-vera and proboitic stuff as well and it didn't ever seem to help much. I just try and avoid acidic/spicy things, although I've no idea if that actually helps me or not! Hope that things start to turn around for you really soon. And people with UC I have spoken to/read about, none have ever regretted surgery, if it gets to that stage.