Introduction:
My name is Debbie. I’m 26 and live in Baton Rouge, Louisiana. I own a children’s entertainment business (I’m a professional clown, face painter, and balloon artist). I was diagnosed with UC in 2005 just after graduating high school.
Some more about me:
I love yoga, hiking, and all types of art. I am a creative and silly soul, and have a hard time taking anything too seriously (which is why I make balloon animals and paint children’s faces for a living).
I am determined to live life to its fullest and enjoy every single day!
Symptoms:
Fatigue and some mild urgency. THAT’s IT! WOHOO!
Looking for Advice on Natural Remedies and Support Groups
UC turned my life upside down. I had just graduated high school as a confident, athletic, ambitious teenager. Over the summer I had extremely painful stomach aches that eventually lead to a colon so inflamed I couldn’t take a sip of water without running to the bathroom. I was diagnosed with Ulcerative pan-colitis. I honest-to-God didn’t know the definition of a “bowel movement”. I started college 20 pounds underweight, with a handful of pills, and a fear of food. You could say it was not my ideal college experience.
That was 8 years ago. Since then my colitis has been kept in check with azathioprine and 5-ASA drugs. Every once in a while I would have a huge flare, be put on a really high dose of prednisone, then switched to a different 5-ASA drug. After 5 years I switched doctors, and starting managing flare ups with mesalamine enemas instead of prednisone. That worked for 3 years! Until one year ago…
I had a very bad flare up in just the last few inches of my colon and resorted to Remicade. I have been on Remicade for 9 months now, and I feel like it is not effective. It is, however, effectively suppressing my immune system. So much that I keep getting infections that require antibiotics! (talk about a vicious cycle!!)
My doctor told me that having the last few inches of my colon give me so much grief is common. That by the time your medication gets to the end of your colon…well, there is nothing left to be absorbed by the end of your colon! And then patients doubt they are controlling their UC at all because every time they use the restroom they see blood. That is exactly how I’ve felt the last 9 months – doubtful.
I just told my doc that I am done with Remicade, and I do not want to replace it with the next drug. I think I can find more effective ways to naturally treat the last few inches of my colon. He told me not to be surprised if I have a bad flare up in about 10 weeks, so I am preparing myself!
During my last antibiotic-induced flare-up I juice fasted and it was FANTASTIC! I felt no cramping, no gas, no pain. I stopped bleeding in less than 2 weeks. So I am prepared to do that again (with lots of cabbage, which I read is great for ulcers). I also purchased IntestiNEW, a powder with L-Glutamine (like Bev suggested!!) :) I have yet to research her other suggestion of Astaxanthin, but I will probably buy that or Turmeric pills (also a natural anti-inflammatory) to have ready as well.
I also want to try a probiotic enema. I already take a great oral probiotic, but I want to target that problem spot in the last few inches of my colon. I asked my doc if I could just use my probiotic like a suppository but he looked at me like i was crazy (I’m thinking, “you asked me to stick all sorts of things up my butt!! enemas! suppositories!! your hands!!! a camera!!! And now that it’s my idea to stick something up my butt,*I* am the crazy one? Mhmmm.”) So I bought a probiotic in powder form, and I am going to buy an enema kit :) Has anyone ever tried something like that? What was your experience with it?
Also, I think I would like to start a support group in my area for teen-30 year olds with UC. When I was first diagnosed my mom took me to a support group and the youngest person there had to have been in their late 40’s. Honestly, it was depressing and I had a hard time relating to them. I would have really appreciated some advice on how to talk to teachers and employers when I was flaring, and how to deal with frustrating responses from peers.
Any advice on how to start a support group would be great. Like, how do I spread the word – put flyers in the Gastro clinics? Tell my doctor to hand out my phone number?? maybe make a website? I feel clueless.
Thanks for this website. I generally avoid researching and reading stories on the web because it’s overwhelming and depressing, but not here. Everyone on here is amazingly supportive and positive! So thank you. I would also like to add that I have been very blessed with a VERY supportive family and friends, and I like my current doctor. He surprised me with his…well, I don’t know that it was support, but more like…lack of criticism/objection to my decision to stop Remicade and focus on diet and natural remedies :) He pretty much said “Go for it, and let me know what happens!” :) So I’m going for it!
Medications:
I have been on Azathioprine since I was diagnosed. I have gone through Asacol, Lialda, and have now been on Apriso for a few years (I feel like I left one out?). I am very happy to be seeing a doctor who is against using prednisone for flare ups. I find that mesalamine enemas work pretty well for me when I use them at the first sign of intestinal upset.
I take Garden of Life’s Primal Defense Probiotic, and Calcium (to make up for years of aggressive doses of prednisone)
I am quitting Remicade after 9 months of treatment. I hated it more after each treatment because I had to take IV Benadryl in case of allergic reactions, yet I still experienced mild allergic reactions every time! Also because every cold I got turned into a sinus infection. And did I mention the blood in my stool every other week? Yeah buddy.
Over the years, I have gotten better at noticing the signs indicating the start of a flare up, and acting immediately. I’ve saved myself a lot of grief by nipping them in the bud. Over the last year I’ve opened myself up to the ideas of more preventative measures, like giving up alcohol completely, stricter diet, and now – natural remedies and supplements. For the first time, I am excited (and hopeful) about trying new things.
written by Debbie
submitted in the colitis venting area
I’m 26 and live in Baton Rouge, Louisiana. I own a children’s entertainment business (I’m a professional clown, face painter, and balloon artist). I was diagnosed with UC in 2005 just after graduating high school.
Hi Debbie!
I’m 25 and also live in Baton Rouge! I don’t have the slightest clue on how to make a support but I bet we could figure it out!
Hi, Debbie. I have done probiotic enemas and I can attest to their value. There is also an herbal enema that I can recommend that can be very helpful for inflammation: http://tinyurl.com/HealingEnema
I laughed at your comment about your doc looking at you like you were crazy with the enema- you’re so right!
I would highly encourage you to check out the SCD & GAPS Diets. If juicing agreed with you, it’s an integral part of the GAPS protocol. I’ve been in durable remission without meds since 2010 . Coincidentally, I will be posting an update of my story today or tomorrow. In the meantime, you can learn more here if you’re interested: http://www.crohnsbabe.com/about/
I know and believe it’s very possible to treat with alternatives. I’ve seen success with it over and over but you do have to seek it out and learn- it’s not something your doctor will know of. I have a friend who was in remission with Remicade but chose to go off it voluntarily and treat with the GAPS Diet instead. She did go through an adjustment period but she is now doing well for over a year, without meds. :)
Also, http://www.Crohnology.com is an excellent social networking site for finding out what others are doing and comparing notes.
You’re on the right track, keep going!
Hey Debbie,
Thanks for the story! I can attest to the last few inches of the colon being a nightmare! Had the worst years of my life with 8 cm inflamed. Now I have pan colitis and symptoms are actually better. Last week was my last Remicaide infusion I’m producing antibodies. Now they want to start Humira. WTF ! Hang in there! I got great news from my docs at the University if they are correct. They claim a new drug coming out in 2014 will change the face of UC. They claim great results and side effects are almost 0. Lets hope they are right and 2014 is a new life for all of us. The best of health
That is great news! Which university is researching on this?
I will get more info when I see them again. It’s another drug by big pharma still in the testing phase due to be out sometime in 2014. Most GI docs should know about it . Ill post when I get the name
http://lajolla.patch.com/groups/schools/p/studies-identify-potential-new-drug-for-crohns-disease-and-ulcerative-colitis
Hi Debbie, thanks for sharing your story.
I am going to try the intestinenew and the turmeric.. I would like to recommend an homeopathic medication the name is :
Podophyllum Compositum (You can buy that in Amason) I ve been taking this drops in the morning and before bed time. They help me a lot for the cramping, gas and the running. I hate that!
Iam taking IMURAN and ASACOL before bed time because If I take them during the day I will spend my life in the bathroom and lose my Job.. this pills are so strong and move all my intestines.. it is horrible… I had one dose of the Remicade, that is the worse thing I ve done to my body. I feel so guilty . I could not breath well, I was tired all the time, no energy and many symptoms more. Not anymore..
I still trying natural herbs and medications and I very confident that one day I will find the correct one.. I wish you the best of luck in your life and I hope you feel better soon.
Best wishes
Marie :)
A probiotic enema is a good idea, and I think that’s the next generation of colitis treatments are headed, given the success of FMT(stool transfer). Researchers are looking for the right combo of bacteria from stool to create a perfect probiotic enema to balance the gut.
I have tried probiotic enemas with Kefir and mixing in whatever commercial probio’s I had around. I found they provided temporary relief. One problem I can think of is that the gut becomes imbalanced with to many lacto-bacteria, this is not as bad as having to many pathogenic bacteria such as c.diff, but it is also a problem.
If I was doing it again(not in a flare up right now), I would keep the kefir as a base as it is a good diverse source of bacteria but also try to find the weirder probiotics like, saccromyces boulardii, mutaflor(e.coli), e.feacalis, bacillius stublis, sauerkraut water. As far as the gut is concerned bacterial diversity is key, IBD patients consistently show lower bacterial diversity than normal patients.
Wow! Looks like I missed the memo my story got posted :)))) thanks for all the encouragement. Brittany-we should totally meet up sometime! Every once in awhile I share with strangers that I have UC and I hear about a young person being diagnosed and how lost they were, and I feel for them.
Tara- thanks for the link! I will def check out the GAPS diet
Matt- idk where to start!! How about the last few stupid inches of our colons?? I was used to pan-colitis, so when just the last inch became an issue I was convinced I just had internal hemorrhoids, and took my sweet time getting to my doctor. BAD IDEA! I eventually got an anal fissure. That’s right. I literally tore myself a new one.
Good luck trying Humira! I’ve decided to save that option for later
Marie- don’t feel guilty for trying Remicade! You never know if something might work for you until you try it. Heck! I’ve had UC for 8 years, and I’m starting to wonder why I didn’t think to put in more effort and research. But our bodies can do amazing things if we just treat them right
Andy- thank you for your insight. I don’t really know anything about Kefir or the diversity of our gut’s bacteria. Time to go study I guess! Looking at the powder probiotic I bought, and it only contains lacto and bifido cultures.
The success of FMT was the base of my thought process as well. I thought, “what about those of us without toxic mega colon that could still benefit from better gut flora?”
P.S. I caught another cold. That would be a cold, staph infection, cold, flare up from staph antibiotics, cold…all within a month and a half. I’m so ready for Remicade to be out of my system!!!
I love you, Debbie! The doctor looked at you crazy when you talked of probiotic enemas, when he has wanted you to stick all sorts of other things up ‘there’…LOL!! Good one! Right??
I think the probiotic enemas are a marvelous idea, and perhaps the next ‘wave’ of future UC treatment. Go with your instincts. Everything you said about meds not working…well, you know you’re right. You’ve been there! They all DO stop working eventually, when they work at all…
I think natural is the only way to go. How can they keep on prescribing immune suppressors for UC I always wonder??? It just does not seem right to suppress one’s immune system, no matter why they tell us it’s somehow a good thing. Then, like you said, you get infections…then antibiotics are necessary…duh!! Obviously, the medical community is grasping at straws…the try anything approach…even to our detriment.
Great post! Thank you Debbie…give that L-glutamine a go. At least it won’t HURT you in any way. Keep up the probiotics forever. Do whatever works for you NATURALLY, and then you won’t damage your body in other ways. We all have to stop taking these harsh meds…THE DOCTORS ONLY WANT TO STOP YOUR UC IN THE SHORT TERM BECA– USE THAT’S THEIR JOB…BUT IN DOING THAT, YOUR BODY CAN BE DAMAGED IN OTHER WAYS!! SOMETIMES PERMANENTLY.
Sorry to yell, everyone. This is a life long condition. We have to learn to manage it safely and effectively…that’s all I’m saying. We only have one body. We only go around once…
Cheers,
Bev
Well said, Bev. I completely agree with you! There is a place for integrative medicine in certain instances and situations but long-term, I believe it’s important to get to the root cause and look to safer, more effective solutions where possible. There’s a lot of new evidence that there are viable solutions emerging and personally, that’s the wave I’m interested in surfing!
:)
Hi Debbie.
Glad to hear that your symptoms are somewhat mild. Hopefully you can get that support group started. I definitely think UC can affect a younger person’s life differently than it might affect someone who is 40 or 60 years old.
I’m also a bit younger (29) and had to have surgery earlier this year, about 14 months after being diagnosed with pancolitis. So right now I have an ileostomy but can have the j-pouch done if I decide to. But surgery turned out to be great for me and now I have almost no symptoms.
I was also on prednisone and remicade and tried some diet changes, probiotics, and natural-type remedies, but I guess my UC was just too severe, so I didn’t respond to anything except prednisone, but it caused me to have terrible acne all over my arms and upper body and caused some bone loss. So I was never too excited about being on prednisone or remicade because of the side effects and risks.
Best wishes to you!