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Self-treating w/out meds: foolhardy?

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Posted 7/24/2011 3:08 PM (GMT 0)
Hello everyone,

For various reasons (political and pragmatic) I've never been someone to immediately trust that medicine is always the best first course in treating an ailment.

I'm considering not using my Canasa at all, and simply trying to treat my ulcerative proctitis with radical diet (see below) alone, for starters.

Is that *necessarily* foolhardy?

Thanks so much—
Posted 7/24/2011 3:10 PM (GMT 0)
My signature is not displaying; no idea why not. Here it is:

Diagnosed with ulcerative proctitis June 2011
Strict SCD diet
Probiotics, fish oil caps, all local/organic/homegrown produce, multivitamin
Vegetarian, though now eating line-caught tuna for protein
Prescribed nightly Canasa suppositories, 1000mg
Posted 7/24/2011 3:23 PM (GMT 0)
I wish I could give you advice, but I can't because I'm pretty confused about my own issues. I was recently diagnosed with proctitis(April 2011). The Rowasa enemas seem to have put me in remission. But everyone else on this board who has proctitis stays on medicines even while in remission. My doctor doesn't do that.

I've been a vegetarian for over 20 years. I consider myself fairly healthy and I still wound up getting proctitis. I take Culturelle twice a day. I think eating well and taking probiotics helps, but at least with my experiences, it doesn't necessarily prevent any form of colitis from happening. In my experience, the things that bring any kind of illness out for me is stress. I've been trying to better manage my daily stress by consistently exercising and doing deep breathing and listening to guided imagery CD's. I figure it can't hurt. From what I've learned on this board, you have to watch how much fish oil you take. Excessive Vitamin E can cause more bleeding. I take Nordic Naturals Omega 3 fish oil and I have seriously cut back on it. I'm taking it a few times a week rather than every day.

The one thing I worry about with my diagnosis is not being on any preventive medicine and the colitis spreading further up the colon without me knowing. I may need to seek a second opinion on treatment.
Posted 7/24/2011 3:33 PM (GMT 0)
None of the natural approaches ever worked for me but I think if it works for you, great!

I do think there is a point where you have to accept you're not getting better and use medication. I knew right away that Canasa was helping me because the day after I used it for the first time, I saw no blood after months of having blood on each BM. I was trying slippery elm, diet and probiotics up until that point with no decrease in symptoms. Longterm inflammation is not good for your health, you definitely want to keep it to a minimum but if you're able to do so with diet, I would prefer to go that route as well.
Posted 7/24/2011 3:46 PM (GMT 0)
Thanks, you two. A question for you, NSSG: have you modified your diet?
Posted 7/24/2011 3:48 PM (GMT 0)
Not currently. I did try SCD in the past without any improvement. I eat healthy food, nothing processed, no low quality meats, lots of organic foods...
Posted 7/24/2011 6:33 PM (GMT 0)
UCinMI..I guess when you poo your pants enough times and suffering long enough through regimented diet, fear of straying, etc...you'll take meds.  Might be a struggle to have a continued control, however.

Let me add that since you have UC, you'll probably not ONLY have that...eventually something else will present.

I've not altered my eating habits believing it will control my UC symptoms. I tried to figure it out for almost 3 years before diagnosis and nothing fit. It was a relief to get on meds...which I haven't changed for over 22 years.

For clarification...it doesn't mean I'd continue to climb up the medication scale before I'd opt for surgery if the 5ASA oral/rectals stop working.


You're the only one to make the decisions....but you're making them out of misunderstanding what UC actually is.   A slow simmering of inflammation (and adjusted mental attitude that it's OK) can do more harm than good.

Change your diet for comfort and common sense. Eating well is a good thing, but not all foods agree with everyone no matter the accolades.

Keep us posted.

q
Posted 7/24/2011 7:06 PM (GMT 0)
"Let me add that since you have UC, you'll probably not ONLY have that...eventually something else will present."

What on earth does this mean?
Posted 7/24/2011 7:07 PM (GMT 0)
You call UC an ailment, when it's far more serious -- it's a disease. Maybe to you it's one and the same, but not to me.

You've been on the least toxic line of meds -- Canasa. Mesalamines are relatively safe and studies show they actually reduce the cancer risk.

I know I HATE doing Canasas. A real pain. However, I've come to trust the meds and modify diet and lifestyle when symptoms do crop up. Bad diet and stress can exacerbate an existing flare up (for me).
Posted 7/24/2011 7:12 PM (GMT 0)
My nomenclature ("ailment") was off the cuff, and not at all meant to signify I don't know this is a disease. But thanks for the reminder to be careful about what I type.

What do you hate doing Canasas?
Posted 7/24/2011 7:21 PM (GMT 0)

UCinMI said...
"Let me add that since you have UC, you'll probably not ONLY have that...eventually something else will present."

What on earth does this mean?

 

Most of us don't have only UC...since it is autoimmune, there are more than likely other issues that will present....eventually.  Especially if there's distress on the body where it's working hard to maintain balance with continual inflammation.  The use of medications is to maintain the status quo where the body doesn't have to do it all itself.  If the mind is fighting the body...meaning (I refuse to go on meds due to whatever reason and it's not improving but I'm distressed because I'm not well, something will give).  It's like doing extreme exercise while in a flare...you won't heal if you put the body in constant full tilt mode as you will when you take it easy or make changes...or take meds.   It's more of a mental issue than a physical one, but the psychosomatic results are real, not imagined.  Once the body starts the reaction, it will take less and less time, just adding to the frustration of dealing with stuff.  Been there, and I'll tell you it's no freaking walk in the park).

Posted 7/24/2011 7:33 PM (GMT 0)
I was also a vegetarian when UC came to stay in me, what is it about so many of us eating healthy foods and getting UC? And smokers who quit and get UC? So not fair.

Anyway to answer your question: are you foolhardy to quit meds and use natural methods?

After 10 years with this disease and quite faithfully taking every Rx prescribed to me I never got any better until diet modification (finally) worked 18 months ago. I've tried many natural treatments and they did nothing or made me worse, other people here have had success with alternatives. Generic Rowasa enemas did help bleeding but only temporarily, like a bandaid on a major wound.

I continue to take Balsalazide which is relatively inexpensive and no side effects. My theory: if it ain't broke don't fix it. If there were side effects it would be stopped but I have no other meds left to try due to not wanting biologicals like Humira/Remicade.

I believe in throwing the kitchen sink at UC with whatever works and doesn't hurt. 95% of supplements have never helped me, kinda like Rx meds, however I am a VSL#3 believer. YMMV.

Are you foolhardy? Only if you continue doing it while getting worse and not allowing for a change of mind.
Best wishes.
Posted 7/24/2011 7:38 PM (GMT 0)
Thanks, Ima. (I'm a gardener, too) . . .
Posted 7/24/2011 7:45 PM (GMT 0)
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.

So, I think it's my own strong anticorporate streak that's got me frustrated with Standard Medicine. I thought that if this illness is like other things I've done in my life (my partner and I had our baby via totally natural childbirth, which was wonderful. And had all the doctors we visited basically telling us we were either A) silly B) misguided C) utopist or D) making a huge mistake.

On the other hand, I've been reading through this forum for a full week now, and I can see that many (the majority, I suppose) of you take some form of medicine.

So I'll start my Canasa tonight, and assume that using it, in conjunction with excellent nutrition and diet, will be the best I can do.

Is there anything I should know about the Canasa. Should I sleep in my own bed, or lay a towel beneath me?

Thanks all.
Posted 7/24/2011 7:53 PM (GMT 0)
MI, no, you do not need to sleep on a towel, Canasa does not leak out. I use them in the morning a lot and go out and run errands. It's soooo simple, I would love to just use Canasa, unfortunately my UC became too severe for that.
Posted 7/24/2011 8:26 PM (GMT 0)
Thanks, NotSo. I'm sorry to hear about the severity of your UC.
Posted 7/24/2011 8:33 PM (GMT 0)
Actually, Canasa can leak if you have extreme gas. Just remember before you let one go that you do have a suppository in.

The doctor's not going to commit you to any suggestions of food...actually, I'd have been ticked if mine did.
I don't nor would choose to consume some/much of what others on here do. It's subjective..get over the insult of that and do your own research and find what works for you regarding comfort, excessive gas, pain, cramping, etc.

I personally don't think Canasa is the best treatment, but it's much better than nothing.

Do you at least know the extent of your UP? such as how much of your rectum is involved? If your symptoms are bleeding, increased bms or constipation, pain upon bms, etc...you really should use them more than once a day.

The oral/rectal combo route should always be used rather than one or the other...

q
Posted 7/24/2011 8:40 PM (GMT 0)
I have the same reservations about RX medicine and trying to stay natural. I have come to the conclusion that not taking 5ASA at low dosage is more dangerous to my heath than stopping them. I take the minimum maintenance dosage of Colazal and keep enough around along with Canasa in case things go south for more than a few days.

You get bias against 5ASAs here because they don't work well in most people with severe disease. You also get bias that 5ASAs are a miracle drug which they are not.

Canasa for UP and mesalimine Enemas for procto-sigmotis both have A ratings for maintenance. That is looking at both safety and effectiveness backed by research. You have to look at danger to your health from more frequent and/or severe flairs. You have to look at the danger of having to use oral/rectal steroids and/or biologicals. I am going to ask to switch to enemas in the future. There is good research evidence that using them alone just a few times a week is more effective than oral 5asa for proctosigmoiditis(which I have).

I would comment that some GIs in the past would not use maintenance meds for UP. Many patients did fine with treating flairs and some never needed meds again. UP can be nearly curable or much easier to control than UC. You can read about people with UP on this board that had an awful time though.

If I were you I would be inclined to use canasa at least a few times a week unless insurance was a problem. It is very expensive without it. I really think it is pretty safe though.

I have link to GI guidelines for UC/UP with supported studies if you are interested. Pretty easy reading and you can make an informed decision.

My signature has my cocktail of supplements that I use for insurance.
Posted 7/24/2011 8:46 PM (GMT 0)
Oh and for some good news. UP doesn't increase colon cancer risk on average for 4 decades after diagnosis and then only minimally.
Posted 7/24/2011 9:27 PM (GMT 0)
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.
Posted 7/24/2011 9:45 PM (GMT 0)
Self-treating w/out meds: foolhardy?

Each person's answer will be largely determined by their personal experience. Quincy has thrived on 5-ASAs for 22 years so that is one response. Imagardener2 saw no help from meds for 10 years, so that is a different answer. I am allergic to mesalamines so that colors my attitude. One thing we all seem to agree on is that we definitely do not not not want to escalate to the more dangerous biologics unless absolutely necessary.

The moderator has not personally experienced any improvement thru diet modification, but she is still receptive about its possible therapeutic benefit for others. Each forum on HW seems to have its own tone or culture, probably set by the moderators. I dare someone to ask this question on another forum. I suspect most of the responses will not be as open-minded.
Posted 7/24/2011 9:47 PM (GMT 0)
I don't follow (the Russian Roulette/worst case scenario part)—?
Posted 7/24/2011 9:49 PM (GMT 0)
Babe, are you suggesting (I'm fine with it, if so) that there are other UC forums out there that pursue healing more holistically, or open-mindedly?
Posted 7/24/2011 9:52 PM (GMT 0)
I think this UC forum is one of the most open-minded in the HealingWell family of forums, with a wide diversity of views.
Posted 7/24/2011 9:58 PM (GMT 0)
Well... a tough question, am I foolhardy? I think yes, indeed you are, & I will explain why. I too was diagnosed with ulcerative proctitis & given a script for Rowasa enemas to use nightly, follow-up in a month or so. I did them faithfully & pretty much got near instant relief from the urgency, mucous, & numerous bathroom trips. At my follow-up visit, we switched to oral Asacol at my request- was tired of doing an enema a night! 8 pills a day, also worked great, I continued in remission for 2-3 years. Then, I was feeling so good, I thought I'd quit the meds & keep myself healthy thru diet & alternate supplements. A month into this, I went into the worst flare of my life, which still to this day (4 years later) is pretty active. I've since gone thru all the UC meds out there, aside from the nasty ones (methotrexate). 3 courses of high doses of pred helped, & gave me all the lovely side effects too. Remicade failed me after a year plus at the highest dose. Imuran helps somewhat, again at a high dose. My current biologic du jour, Humira, is alright- although I had to throw my soiled undies in the wash yet again today! Soo... yeah, foolhardy indeed. I firmly believe if I had not stopped the Asacol those years back, my solid remission would've continued. My GI has been pushing surgery the past 2+ years. Maybe you'll be one of the lucky ones, & do ok. But if you're not, well then.. prepare yourself for a lifetime of stronger & stronger meds, worsening symptoms, & possibly surgery. This is just my personal experience.
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