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Anybody else on no meds?

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Ulcerative Colitis
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Posted 1/10/2010 11:37 AM (GMT 0)
I have been on this forum a while now, and have found it helpful to read about people with the same issues as me.

The thing is i seem different than everybody else, in that i can't take ANY medication for my colitis. I have tried a lot of things both oral and rectal and everything makes my colitis worse and makes me vomit and have severe pain.

Is there anybody else out there that CAN'T take medication, and if so, what do you do to help yourself?

I am at the point now where i have had this disease for 15 years, and it is ruining my life. Every month i have a flare with my period, or if i eat something different it makes me flare, stress, or change makes things worse, but not a lot or if anything at all can make things better.

I would love to hear from people in the same situation, if there is anybody out there! x
Posted 1/10/2010 8:20 PM (GMT 0)
I have crohn's colitis (CD affecting my colon), check out my sig...I am not able to use traditional RX to treat my IBD, except on occassion with rectal meds (cortifoam is the only rectal med that helps me).  I've had this disease for 19 yrs now.


see my sig below... :)

Posted 1/11/2010 1:40 AM (GMT 0)
Are you sure your vomiting is caused by taking medicines? And are you sure it is medicine you are taking that makes your colitis worse? I vomit occassionally due to UC itself, not medicines. Pain is a common symptom as well.
Posted 1/11/2010 2:39 AM (GMT 0)
Most of the meds make my symptoms worse. Recently went back to sulfasalazine and it seems to be working atm. That and the hydrocortisone enemas. If all you have tried is what is listed in your sig... you haven't tried alot.
Posted 1/11/2010 3:27 AM (GMT 0)
You could still try out a sulfa, 6mp or Imuran, and Humira. I imagine since you don't want to try Remi you wouldn't want to try Humira. But why not?

If none of those works, I'd see about surgery.
Posted 1/11/2010 10:41 AM (GMT 0)
Thank you for the responses.

Againstodds: I am 100% sure that it is the medication that is making me vomit etc I have never vomited due to having colitis. It is always made so much worse after taking meds.

Dr-A: No what is in my sig is not all i have tried. I have been battling this for 15 years, i have tried more or less everything, but i listed the ones that i had a very bad reaction to. As i said in my sig my doctors don't know what to do with me. I am in a flare right now, loose stools, bad left sided pain, urgency, mucus and gas, and i can take nothing to help.

Elephant pipe: I have tried 6MP but really not interested in trying remicade. I would opt for surgery over that.

I was kind of hoping that some of you out there may have been able to recommend some alternate treatments that have worked for you, that maybe i could try. I mean i don't really want to have my colon out at 28 years old. So if there is anything else out there in the HOLISTIC line, then please let me know. I should say that i have tried George's always active aloe vera juice which did not agree with me. I was thinking that maybe a probiotic would be good?
Posted 1/11/2010 7:13 PM (GMT 0)
As I have listed in my sig, I take a good probiotic (primadophilus reuteri made by natures way is excellent, so it one called Pro-Bio TX-11 made by Sangsters health food store) and a fibre supplement as well which will help bulk up your stool yet it will be soft enough to pass, both daily and indefinitely, flaring or not.

:)
Posted 1/11/2010 8:02 PM (GMT 0)
I'm not on any Rx meds at this time. I tried Lialda, Asacol and Colazal and they all made me sooooo sick! After that I lost a little faith in my GI and started researching alternative methods as I'm scared to take something that suppresses my immune system. Thankfully, so far I have been able to maintain remission taking fish oil and probiotics. I also take Standard Process supplements from a Dr. that does Applied Kinesiology. Reiki has been good for me as well. After my first session of Reiki my joint pain disappeared.
Posted 1/11/2010 8:27 PM (GMT 0)
I am on no meds.

I found that the medicines stopped working or do little, and I was not willing to go on harder medications.

Where medications have failed, alternative treatments have put me in remission. Fecal transplantation put me into remission immediately. Probiotics and diet have put me in remission, albeit more slowly. Probiotics and diet keep me in remission. Here is a list of my treatments:

1. Listen to self-hypnosis, healing MP3s before going to sleep at night.

2. Do yoga asanas, meditation, and breathing exercises sometime during the day.

3. Exercise.

4. Eat primarily anti-inflammatory foods, such as spinach, sunflower or macadamia nut butters, salmon, ...

5. Drink ginger teas. Ginger is highly anti-inflammatory.

6. Add turmeric powder to many of my foods. Turmeric is the best anti-inflammatory property in nature.

7. Avoid pro-inflammatory foods, especially during flares. I will eat pro-inflammatory foods when I'm in remission. I just balance them out with anti-inflammatory ingredients. For example, I'll add turmeric powder to tomato-based foods, such as pizza.

8. Avoid any foods in which I'm sensitive to, which for me is foods high in fructose and foods containing HFCS.

9. Take a variety of vitamins and supplements, which ones depend on my current condition.

10. Take a daily probiotic. If I'm flaring, I will mix the probiotic powder with warm water and use a syringe to put it up my butt.

11. Do fecal transplantation to get out of a serious flare.

12. Minimize taking antibiotics. Use alternative treatments instead of antibiotics whenever possible.

I've had three flares, one of which was very severe. I've been in remission for a year now. I got my last flare after having to take antibiotics for a bladder infection. I now take cranberry supplements to reduce the chance of getting another bladder infection.
Posted 1/11/2010 8:38 PM (GMT 0)

subdued said...
I am on no meds.

I found that the medicines stopped working or do little, and I was not willing to go on harder medications.

Where medications have failed, alternative treatments have put me in remission. Fecal transplantation put me into remission immediately. Probiotics and diet have put me in remission, albeit more slowly. Probiotics and diet keep me in remission. Here is a list of my treatments:

1. Listen to self-hypnosis, healing MP3s before going to sleep at night.

2. Do yoga asanas, meditation, and breathing exercises sometime during the day.

3. Exercise.

4. Eat primarily anti-inflammatory foods, such as spinach, sunflower or macadamia nut butters, salmon, ...

5. Drink ginger teas. Ginger is highly anti-inflammatory.

6. Add turmeric powder to many of my foods. Turmeric is the best anti-inflammatory property in nature.

7. Avoid pro-inflammatory foods, especially during flares. I will eat pro-inflammatory foods when I'm in remission. I just balance them out with anti-inflammatory ingredients. For example, I'll add turmeric powder to tomato-based foods, such as pizza.

8. Avoid any foods in which I'm sensitive to, which for me is foods high in fructose and foods containing HFCS.

9. Take a variety of vitamins and supplements, which ones depend on my current condition.

10. Take a daily probiotic. If I'm flaring, I will mix the probiotic powder with warm water and use a syringe to put it up my butt.

11. Do fecal transplantation to get out of a serious flare.

12. Minimize taking antibiotics. Use alternative treatments instead of antibiotics whenever possible.

I've had three flares, one of which was very severe. I've been in remission for a year now. I got my last flare after having to take antibiotics for a bladder infection. I now take cranberry supplements to reduce the chance of getting another bladder infection.

Incredible...many of the steps you are following, I am following as well...it can't just be coincidence? Some steps are so easy to follow like exercise, taking a good probiotic, taking vitamins and avoiding foods that you are sensitive to...

What I will say is that in my case it took time for my symptoms to dissipate; it was a gradual process that took weeks. I also believe that in most cases we don't need to remove our colon because it can be healed if we give it the chance and time it needs.

NBT
Posted 1/12/2010 1:50 AM (GMT 0)
subdued
You are not on any medicines, are you?
I am curious about the 'tomato-based foods'. You think tomato is pro-inflamatory food? I believe some ingredients of pizza are pro-inflamatory.

by "probiotic powder with warm water", do you mean self-made enema?
Posted 1/12/2010 2:46 AM (GMT 0)
Hi Against Odds,

I probably should have reworded that. I'm not on any colitis medications. I do take Lexapro, but that's for social anxieties. I have severe performance anxieties, which I'm learning to overcome. In fact, yesterday, I gave my first yoga class :) and it went well too!

Tomatoes are nightshades; so, yes, they are pro-inflammatory. Cheese is also pro-inflammatory. In fact, all diary is. Sausage and pepperoni are processed meats. They are also pro-inflammatory. And certain peppers are also nightshades; so like tomatoes, they are pro-inflammatory.

All-in-all, pizza is very pro-inflammatory. I don't eat it often, and I sprinkle turmeric powder on it when I do. Turmeric, being very anti-inflammatory, helps to counteract the pro-inflammatory effects of pizza. I also get plain pizza with spinach. Spinach is also anti-inflammatory, and it tastes good on pizza.

--

I guess it's a self-made enema. I use a syringe though. It came with a long, removable tip.
Posted 1/12/2010 2:48 AM (GMT 0)
subdued, I just wanted to say congrats on giving your first yoga class! I think that is so cool! scool
Posted 1/12/2010 3:07 AM (GMT 0)
Mercury- Have you tried 6mp or imuran? How about flagyl? I wouldn't be so fast to dismiss the biologics (Humira, Remicade) either.

As for holistic treatments...eat omega-3's. Lots of them. And take probiotics. Those two are a must.

Have you considered helminthic therapy? Basically you swallow nematode (parasitic worm) eggs. The worms are basically harmless unless you're unlucky enough to be allergic to them, and they have a very high success rate in Crohn's patients. It's slightly lower in UC patients though. The most commonly used species is trichuris suis, pig whipworm, but you can also use human hookworm (not recommended if you're already anemic though.) I'm actually looking into this for myself.

Some people also get relief from smoking or nicotine patches.

As for diet, that's highly individual. I find avoiding foods that are too fibrous when I am flaring to be very helpful. So I'll stick to lean protein, cooked veggies with no seeds or skins or fibers that may bother me, melons and tropical fruit, avocados, canned peaches, cooked apples, and lots of oats. I have found oats to be the best grain for me to digest and others on this forum find oatmeal to be mild on the intestines.

(edit due to rule #2)

Post Edited By Moderator (fruitgirl) : 1/12/2010 9:41:29 AM (GMT-7)

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