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Self-treating w/out meds: foolhardy?

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Posted 7/24/2011 6:41 PM (GMT -5)

notsosicklygirl said...
Oh yes, passing gas while using any rectal med is like playing a game of russian roulette. I probably should have mentioned that. It is possible but you never know what the outcome will be, sometimes nothing, other times, worst case scenerio.

LOL. That's exactly how I feel about it haha. Nice analogy.

Anyways, just be wise. I tried natural treatments for two years(rejected any conventional UC meds) and I ended up with VERY narrow narrow intestine... due to prolonged inflammation.

If natural treatments work for you then it's fantastic though.
Posted 7/24/2011 6:51 PM (GMT -5)
I meant anything might come out if you use those muscles. It's best to pass gas on the toilet until you are a little more experienced. I've been using these rectal meds for 4 or 5 years and I still to this day have had some strange experiences while passing wind and having used one recently. Of course, you can pass gas, just not for a period of time immediately following insertion of a rectal medication. Pass gas 5-minutes after inserting at your own risk!
Posted 7/24/2011 7:05 PM (GMT -5)
UCinMI,

While I applaud your wanting to remain med free, and going it solo via healthy alternatives, I think it's going to be tough for you down the road. 

Canasa  suppositories are so easy to do, and have few if any side effects, and IMO are a good "insurance policy" you can combine with the healthy alternatives.

As for your GI, well, he/she sounds pretty typical: throwing meds at you, without even a discussion as to diet possibilities, or natural supplements which might help. Maybe it's time you shop around for a better GI who is more compassionate and can  listen to your concerns?

My suggestion is you stick to the canasa AND do your probiotics, SCD diet, organic homegrown produce, etc....

And as long as you're at it, a few other thoughts: have you had your vit. d levels checked? You can also add organic slippery elm powder - that is nature's mesalamine, and L-glutamine powder (15 grams at least) for colonic repair too.

Bottom line is, as  everything in life, you have to follow your inner voice...

Good luck, and feel free to come back and ask any questions of us. We don't bite, and are pretty open minded as BabeintheWoods said. :-)

 

Posted 7/24/2011 7:09 PM (GMT -5)
Here's what I would say: Keep the Canasas around, at least, and if you see any decline in your symptoms as you try to treat them holistically, use the meds to get yourself at least out of what could end up being a very scary situation.

To agree basically with what some others have said: Canasa is about as low-maintenance and problem-free a UC med as you could imagine having to take. I am sure most people on this forum look fondly back to the days when all they had to take was something like Canasa. The danger is, as Eva Lou suggests, getting yourself in a place where you no longer have that option, and have to take things like prednisone or biologics, or face surgery. That is what we are all, obviously, trying to avoid. I agree with you about the medical establishment in many respects-- I've had drs. push pred on me and always pushed back-- but this is a case where there is a class of drugs that can work for years that do not do awful things to your body, without which we'd only face ones that do. So I would be cautious.

It also seems to me after reading this forum for awhile that most cases of proctitis eventually turn into full-blown UC-- just based on what many say in their signatures. I was one of those. Worth considering also...
Posted 7/24/2011 10:44 PM (GMT -5)
UCinMI,
You asked why I don't like doing Canasas. I don't like sticking something up my butt with my finger (although I put a covering on it). With enemas, I'm not putting my finger up there. Also, sometimes I drop them on the floor and I have to throw it out and start over. A Pain!

Also, when I'm doing Canasas I do them in the a.m. and inadvertently I'll pass gas and it comes out.

Enemas at night are so much easier. But sometimes I'm doing enemas at night so I can't do Canasas til the a.m.
Posted 7/24/2011 11:43 PM (GMT -5)
I am self-treating w/out meds.

Am I foolhardy?

No. I'm in remission.

And for those who say I'm foolhardy and will have a serious flare do to self-treating w/out meds, I had a serious flare with meds. So I'm doing much better w/out meds than with them.

But if I were at risk of flaring w/out the meds, then I'd use the rectal suppositories. Heck, grossness, inconvenience, whatever, is far better than flaring.

Post Edited (subdued) : 7/24/2011 10:46:48 PM (GMT-6)

Posted 7/25/2011 12:10 AM (GMT -5)
As already said, it is a personal choice whether to continue meds or not. Many here have purported that stopping your meds when you have achieved remission will likely result in a stronger, more severe flare up. Based on this advice (and because I still have persistent IBS symptoms which act like a motivator for me) I still continue my suppositories and oral meds, however that is just me, partly because I am so anxious. However, I do not know how faithfully this UC forum represents UC's true course because, I would assume, that the more severe cases come to these boards whilst the ones who have achieved a solid remission without meds don't since there is no need to.

To show just how confusing your question can be (and to show you how ultimately the decision is based on how you feel), in my (roughly) 1 year stint with UC, I have seen about 5 G.Is in total (2 of which act as my 'primary G.I'). The 1st G.I (who diagnosed me) said to never stop my meds regardless of how well I was doing. The 2nd G.I (who is one of my 'primary G.Is') also told me never to stop my meds (but supports tapering them down to a very low dosage). The 3rd (also one of my 'primary G.Is') told me to continue with my meds till I see no more symptoms then taper them down over the course of 2-3 years till I eventually stop them. The 4th told me to continue on my meds forever (BUT he told me he has a few proctitis patients who took suppositories for 1 month after diagnosis and against his advice stopped them once the bleeding stopped and their symptoms have not resurfaced for a long time). The 5th told me literature says not to stop the meds but he personally believes that we can IF we have achieved a very long remission. He told me he has one patient who was diagnosed with proctitis, started the supps and everything cleared up within a few days. He has not had any relapses for 7 years but he continues to take the suppositories against his G.Is advice.

Personally I will probably take my meds (at least my supps) for a very very long time in conjunction with a healthy diet mainly because I will always have the nagging thought that "I am not cured, I am only in remission". I think the only time I will stop my meds is when I 'believe' I have actually been cured of my colitis, either via FT or antibiotic therapy or something else that 'appears' to possibily cure colitis.
Posted 7/25/2011 7:27 AM (GMT -5)
journey2health,

I have the opposite problem you have, haha: i hate the enemas because I can't seem to retain them for more than 15 minutes and then it's the mad dash to the toilet, before it all comes out confused .  Canasa suppositories I do at night and can retain them all night. I use a a plastic zip baggy, which I turn inside out, hold the suppository with it and slather in in lube, then push it up my rectum, then turn the baggie inside out and throw it out. It's pretty clean that way.

But whatever works for you is good. We all have to find our way....

Posted 7/25/2011 10:39 AM (GMT -5)
I wish Canasa had some kind of an applicator. I need to get a huge pack of finger cots.
Posted 7/25/2011 1:08 PM (GMT -5)
Max...and then there are those such as I who will continually remind you that with cecal involvement, oral meds should be included in your maintenance.

q
Posted 7/25/2011 5:57 PM (GMT -5)

quincy said...
Max...and then there are those such as I who will continually remind you that with cecal involvement, oral meds should be included in your maintenance.

q

haha you're right Quincy. You take good care of me :)
Posted 7/25/2011 6:33 PM (GMT -5)

UCinMI said...
So, just to have a bit of closure on this topic:

When my biopsies came back, my gastro diagnosed ulcerative proctitis. She had someone from her office call me: when I saw who it was, on the caller ID, my heart beat painfully for a split second (I have a friend in her early 40s who's just survived colorectal cancer). The receptionist from the gastro's office said: "Dr. X has diagnosed you with Ulcerative Proctitis. Take Canasa suppositories every night for a month, and then come in and see Dr. X again." And that was it.

Did this person say, "Also read all you can about diet, supplements, exercise . . ." No. Not a word.

I am not on anything right now and my diet is helping ( includes curcumin and boswella and l-glutamine and yogurt ), however at the FIRST sign of trouble I will apply VSL3DS, Sulfasalazine, spinach, fish etc.

Tough to get out of a flare without some help.
Posted 7/25/2011 7:38 PM (GMT -5)
I'm in similar boat to Eva Lou.  I should have maintained.  Now I am in the worst flare of my life and praying remicade works becuase I can't even get below 35 mg of pred :(.  When you get as sick as some of us, you lose all inhibition of what you won't try and swear you won't do.. becuase when you are desperately sick options suddenly become much fewer.  Don't want to scare ya and trust me I know how anxiety can add to the mess.. but not sticking to working meds was my mistake.   But this is a great community and as someone also said very diverse so you really will get many options from here you wouldn't get even from the alleged best medical minds(doctors)..  

Vin

Posted 7/25/2011 8:12 PM (GMT -5)

aguywithuc said...

I am not on anything right now and my diet is helping ( includes curcumin and boswella and l-glutamine and yogurt ), however at the FIRST sign of trouble I will apply VSL3DS, Sulfasalazine, spinach, fish etc.

Tough to get out of a flare without some help.

LOL, If I even start to think things are going south I start opening up the cans of spinach...

Post Edited (Dr-A) : 7/25/2011 7:15:33 PM (GMT-6)

Posted 7/27/2011 7:52 PM (GMT -5)
Like Eva Lou, had I not tried to wean myself off of Lialda I don't think I would have been in this flare for what is now going on three years.

Going back on Lialda along with 2 rounds of PRED, Imuran, and numerous enemas, has not been able to get me into remission. mad

So, since no meds are really working for me, and at this time I am not willing to try Humira or Remicade, I am trying DIET for the first time -- no RX meds at all. I am currently following the Makers Diet and if this does not help I will tryt he SCD.

You do have to find what works for you and you should not be afraid of the lower level maintenance meds. In fact, hope that that is all you will ever need.
Posted 7/27/2011 8:10 PM (GMT -5)
Canasa is a very safe long term drug. I'm using it now for pouchitis. In fact I take 3 1000 mg nightly.

10 years ago I did everything right for my UP. I was even off meds for a year but guess what, this disease has a mind of it's own, came back fast and furious and look where I am now. In fact, even with a pouch I have been on meds for the last 10 years. My GI decided I was doing so well that she took me off maintance meds and 6 months later I was so sick again that I had to have remicade. I will never stop taking canasa as long as that and diet and vitamins keep me well. I learned my lesson twice.

Posted 7/28/2011 4:33 AM (GMT -5)
I think a good part of the "always taking your meds" warning is due to the pharmaceutical industry. They make a lot of money from maintenance medicine. I don't doubt it though. There probably is a higher chance for most people that they will flare more frequently and more dramatically if they don't take the 5-ASAs. However, the 5-ASAs aren't good for the health. And there are other alternatives. Where are the studies that compare taking 5-ASAs every day with using suppositories at the very first sign of a flare? Were are the studies comparing reduced health from 5-ASAs and increased likelihood of flares? Where are the studies that compare the 5-ASAs with alternative treatments such as turmeric, probiotics, FT, etc?

For me, I know the answer: the 5-ASAs didn't work for me. Turmeric, probiotics, and FT do. And then even using suppositories at the very first sign of a flare has helped me.
Posted 7/28/2011 9:07 AM (GMT -5)

Jeez, seems like a fair amount of us here have quit the meds after doing great for 2-3 years, then all hell breaks loose. It's unfortunate... hindsight is indeed 20/20, huh! Maybe "foolhardy" is too strong a word, but you'd hate to wind up NEEDING the big gun meds, when you could've kept things under control using a mild med. Like Vin said, you get to the point when you're so ill that all caution goes out the window, you'll basically do anything if someone says it could help. Odd too, seems like for those of us who quit maintenance meds, we've wound up in these flares that just keep going & going & going.... you wonder what exactly happens in the colon, you know?

Posted 7/28/2011 11:05 AM (GMT -5)
I'm either allergic or non-responsive to traditional oral RX (cortifoam is the only rectal med that helps when needed) so I had no other choice than to try the natural route and diet change...still no full remission for my crohn's colitis but definitely alot better than what I have been through over the last 20 yrs of having this DD.

It's an individualistic disease and there is still much to learn...BTW my mom had UC and went from her 60's to her 80's with it completely med free because she was more concerned about taking meds for her heart...sometimes her UC gave her issues and most of the time it didn't so again, it's individual and stats don't always mean everything because not everyone with IBD is necessarily "the majority"...they don't even have oral meds specific to IBD, they are all cross-over drugs designed for other types of inflammatory diseases...the medical field has a long way to go yet.
Posted 7/28/2011 12:59 PM (GMT -5)
You've heard plenty of opinions from all across the spectrum, so I won't add mine to it. I will say the majority of GIs are not going to talk to you about diet or alternative supplements. It's up to YOU to do the research and experimentation. There are several excellent books I could recommend, but probably the most helpful and comprehensive one is Optimal Digestion: New Strategies for Achieving Digestive Health.

www.amazon.com/Optimal-Digestion-Strategies-Achieving-Digestive/dp/0380804980/ref=sr_1_1?ie=UTF8&qid=1311875964&sr=8-1
Posted 7/28/2011 3:45 PM (GMT -5)
You need to see a Functional Medicine doctor for diet and supplement advice.
Posted 7/28/2011 7:14 PM (GMT -5)
I'm so glad I had a relapse into a second flare. I think, if not, I might have thought I could taper off my meds.
Posted 7/28/2011 7:14 PM (GMT -5)

Eva Lou said...
Jeez, seems like a fair amount of us here have quit the meds after doing great for 2-3 years, then all hell breaks loose.


But was it because you stopped taking the meds or because you were taking them for 2-3 years? I know it was difficult for me (except when I did fecal transplantation) to get off the meds. Every time I reduced my pred dosage, the bleeding came back. And before I did FT the second time, I kept getting very mild flares every time I stopped the Canasa suppositories. Heck, I even don't take Tylonel unless I have a really, really huge headache because I get rebound headaches. I bet some people are always taking medicine for headaches because once they stop, they get another headache. Sometimes I feel the pharmaceutical industry goes out of its way to create medicines that will cause you to be dependent on them. It happened to me with antibiotics. It happened to my boyfriend with his high blood pressure medicine... He eats so much better now and has lost weight, and yet, he still has to be on his high blood pressure meds.
Posted 7/29/2011 11:37 PM (GMT -5)
Even though I have found relief through diet, I don't think you should give up meds right away. At least stay on your meds after you change your diet and see if you improve or stay the same. If so, reduce your dose a little and check again. Keep doing this until you are med free. To me, a 22 year old, it feels great to not be on any meds. I could improve from 95% to 100% if I take my asacol, but I don't want to. I know it feels great to not be on any meds, but don't let that get in the way of proper healing.
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