Introduction:
So, I’m a CPA, but don’t let that stop you from reading. I was diagnosed with UC in August 2008. Most of my job is speaking and training, so I’m on the road a lot and in front of the classroom a good deal of the time. Ulcerative Colitis has caused me to get really creative in coming up with a reason we’re taking a 10 minute break right after we get back from lunch. I’ve had my fair share of really embarrassing moments with this stuff, but I won’t go into much detail for you now just in case you’re eating.
Anyway, since my diagnosis, I’ve been in a study for Humira that pretty much controlled the disease, but I’ve never really been in full remission. The GI for the study was great and all, but not much into diet (no surprise). So, my wife googled and googled and we stumbled on this site.
Some more about me:
Something interesting about myself – hmm…well, I tried to be an actor for a short time before deciding on the whole accounting thing. My dream was to be a SNL guy, but that quickly came to a close when I realized that, funny as I can be sometimes, my main job was as a waiter at the Macaroni Grill. I was able to be in a few things that I’m proud of over the years, but just couldn’t scrape together a living from it. That said, if any of you know Lorne Michaels, I’m happy to give it another shot.
Symptoms:
I’ve recently come off Humira and my symptoms are still mild. I’ll visit my porcelain buddy about 3-4 times each day and usually in a hurry. Bloating, gas, some abdominal pain, it’s all there, but in mild form. There is still some blood from time to time as well.
Untreated UC kind of Freaks Me Out
Way back in 2004, I was at a conference for work. We were all eating lunch and all of the sudden, I felt my stomach turnover. I made up some excuse and RAN to the bathroom. Didn’t quite make it, but I was close enough to not be seen by anyone. I stayed in there for about 30 minutes trying to clean everything up and come up with a story to tell my coworkers so they wouldn’t ask any questions. I wasn’t sure what exactly happened, but I just chalked it up to bad Mexican food or something. The next few years, that situation turned out to be just the start. I had many instances like that, and many were worse. I got married in 2005 and my wife begged me to go to the doctor. I didn’t. Finally, after a fight about my health, I complied (like a good husband). The doctor I saw was HORRIBLE. All he did was tell me to start taking Immodium and stop worrying about it. Then he charged me $300. I was done with doctors.
3 years go by. It’s 2008 and I’m playing in a charity golf tournament. Before we arrived at the course, my boss and I stopped and got a White Chocolate Mocha at Starbucks. This was a bad idea. I’d angered the almighty Bowel Gods. It was the last White Chocolate Mocha I’ve had. By the time we reached the second hole, I knew this was going to be a bad day. I told my group that I was feeling sick and needed to go to the clubhouse really quick. Didn’t make it. Same thing happened on the 5th hole. Then the 8th hole. And on and on. I tried to hide it from my group. Luckily it’d rained the night before so the course was pretty muddy…if you know what I mean.
So, I texted my wife that I was having a less than great time. She called the doctor and I was scoped about a week later. About 6 months after my diagnosis, my GI suggested going into a study for Humira. I ended up doing that and saw my symptoms get cut in half with the occasional flare. That study ended in August 2013. The quote I received for Humira was about $1,000 per shot…just a bit out of my price range. I mean, $900, sure. But, $1,000, c’mon.
As I was exiting the study, they tested me for TB and guess what? Yep. Positive. So, that’s cool. I’m now taking INH medication to kill the TB for the next 9 months. No Humira or any other drug.
So, my question, fellow UC’ers is this. What should I do? I tried the SCD for about 2 months and went nuts! I felt like a drug addict that just needed one more breadstick fix. I’m thinking about scaling up to it again since now I don’t have a drug as a safety net. I’ve also heard about this guy – http://www.drdavidwilliams.com/ulcerative-colitis-natural-treatments#axzz2h62FayYw. Anyone heard of him or is he a quack?
My GI wants me to go on 6MP or Remicade. I really don’t want to get on these medications that just seem like black holes. I’m kind of freaking out. My symptoms are fine for now, but I feel like I’m just waiting for the other shoe to drop.
Should I just suck it up and do the SCD or the alternative stuff Dr. David Williams is suggesting (see link above)? Or, should I get on some real meds that will cost me pretty good, but have a little more science behind them?
Medications / Supplements
I’ve taken a bunch of these things, but have the most experience with Humira. It cut my symptoms in half, but my GI was never really happy with the results. Asacol, Enticort, Apriso all didn’t do much for me either. Prednisone did, but I looked like Grimace, so that was short lived.
I’m currently in the hunt for something new and kind of nervous about being untreated.
written by Jonathan K
submitted in the colitis venting area
Diagnosed with ulcerative colitis in 2008
Hi Jonathon,
I couldn’t imagine all that public speaking while being symptomatic! That’s rough! The thing with UC is that no treatment is effective for everyone and you really just need to figure out the best treatment for you. For some people paleo and SCD will fix a lot, for others only medication can help. That being said, even if you’re stuck taking meds you should still introduce some sort of a special diet to hep manage the UC symptoms (you might be able to at least lower the doses!). Diet alone won’t work for me, but I still manage my diet (just not as extreme as SCD or paelo). I still eat salads and breads and pastas but limit my intake and just try to avoid highly refined items…I agree with you that I’d be like a crack addict if I completely stopped those things!
That being said, don’t complete rule out some of those drugs especially in case those diets don’t work, you do need a back up plan. I’ve been on remicade for 10 years (full remission for almost all of them) and it was probably the best decision I’ve made. Just remember to find what works for you (even tweaking those diets so they work for you)!
Good luck!
I’ve had good experience with Remicade. I didn’t want to go on it, but now I’m sorry I waited so long. It’s a personal choice.
Hi Jonathan!
I totally agree with Angela and its the truth – no one thing works for everyone. I’ve learned through this site and other support groups: that to achieve the elusive remission, this diseases’ treatment has to be totally customized for you! Not only do you have to have and find a great GI, you also have to do homework and find what helps YOU keep symptom free. Be it meds, diet, stress therapy, yoga, acupuncture or WHATEVER it takes to be symptom free. And believe me, having a sense of humor helps tremendously and you’ve already got that covered! So I’d say, though you don’t want to be on meds, you may need to do it just get in a solid healthy state because you’ve been flaring too long and thats hard on your body, and also keep trying all the other non-med stuff. So finding this site should help you navigate this whole UC adventure!
I’ve had UC for @ three years and it took two and a half of those to finally find a great combination that works. Along with the usual meds and supplements, and because i couldn’t achieve remission, Remicade & 6MP. I’ve had therapy and acupuncture along the way which has given me a whole different outlook and have been able to focus on my diet which I’m doing the FODMAP diet. So far so good! Im hoping to ask my doc to try reducing some of my meds soon! Oh, and my 23 yo son also has UC so were UC-buds and have totally bonded even more over this and we compare notes constantly.
Get a good probiotic into yourself as soon as possible!
I have had UC for 17 years, severe pancolitis, and am now in FULL remission for the very first time, for two years now…get this…med free!
I take one ULTIMATE FLORA CRITICAL CARE probiotic capsule every morning upon waking, completely empty stomach (this is very important), and then no eating or drinking anything other than water for at least half an hour after.
About an hour before lunch, again on an empty stomach, I take fermented L-glutamine powder in a tablespoon or so of juice, for taste. You can take it in water, but I don’t like the taste of it so much.
The probiotic will repopulate the good bacteria in the colon, that is seems all we UCers need to do…and the L-glutamine actually heals the mucosa (thus the ulcers) of the colon!
I am floored that it worked for me. I was freaked out about taking no meds because I really believed that I HAD to as per the doctors telling me that I did. What a crock! Meds are not the way to treat UC…that’s why they either don’t work at all, or stop working. That’s in 100% of us, by the way. I’ve learned that from this site.
It can take a few weeks to work, but for me, I felt better in mere days! I went off the 12 asacol pills that I had been taking (and were actually doing nothing but making me feel worse) forever and I will NEVER (yep, I’m saying it) go on any med for UC again. I’ll get my colon out before I ever take another med. I believe that fecal transplants are the only way to ‘fix’ our colons, and they will be available to us all soon, I’m sure. Until then, I’ll take this wonderful probiotic.
Cheers, and good health,
Bev
Bev is right . The Probiotic Garden of life Primal Defense ultra has put my 22 year old
colitis in complete remission. It has been more than 3 years now. Sometimes i even forget i had colitis. But if my stock of the probiotic runs out i become real nervous until i get one. I do not know if this works for every one but no harm in trying as it has no side effects. It is so god for the gut health. I have been through all that you have mentioned and i think every UCer has. But now totally UC free.
Good luck.
That’s fantastic, Uma.
I am really wondering why a GOOD probiotic does not work for everyone…it’s so frustrating…is it because they are not taking it on an empty stomach and not eating for half an hour…is it because they are not taking it faithfully every single day….is it because they are not giving it enough time…OR could it be that we all acquire UC under different circumstances and different reasons, therefore, treating it and knocking it into remission requires different methods?? If only we knew!
Some of us may get UC from lack of good bacteria, for whatever reason, some are predisposed genetically, some get it from taking other medications (like Accutane), some get it from a nasty bug or food poisoning…can a good probiotic help everyone, no matter how we got UC?? Is it just that people are not taking it properly, not taking the right one, not waiting long enough to see if it works? Do all of us with UC NEED good bacteria because we have all lost it??
I, for one, want all the answers! Like, yesterday, if you know what I mean. I’m hoping for some answers in the near future from the science research and/or medical community…
Bev I completely agree with you! I think we’re going to find that with more research UC is going to be broken into subcategories once we figure out what actually caused it for everyone. I’m one of those where probiotics aren’t of use (I luckily have pretty healthy and happy lil bugs). My UC is linked to an autoimmune liver disease (that type of disease always presents with a secondary autoimmune condition). I never had a single stomach issue before being diagnosed and was rarely on antibiotics…but half my family has one kind of autoimmune disease or another (awesome genetics I guess). But from what it sounds like from a lot of people on here my case is pretty rare. It seems a lot of people have had problems for a long time or seemed to be drug induced. I can’t wait for someone to finally get that definitive link so doctors stop over prescribing antibiotics and some of those unnecessary drugs! Imagine how many people we can save from getting UC!! Doctors should really use this site to help them understand what this disease really is!
Yes, Angela, the longer I have UC, the more I seem to be ‘getting’ it, if you know what I mean.
Since there are so many different ways to actually end up with UC, it stands to reason that we would all respond differently to various treatments.
I so agree with you on the antibiotic front…too many are prescribed, even in this day and age! You’d think doctors would have learned by now that they can really do damage to some people, especially when they are over used.
Bev