I chewed my naturopath out, I don't mean to be a downer in this email

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therearemiracles
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Date Joined Dec 2006
Total Posts : 3606
   Posted 12/30/2008 7:48 PM (GMT -6)   
I have spent over $3,000 with this naturopath and told him that I feel he's NOT committed to me and getting me well. I met him once and other than that I have done numerous phone consults with him b/c he's out of state. I guess I've come to the realization that if someone had the "right" answer, doctor or otherwise, someone would know about it on this board and post it and we'd all be near remission or remission, right?  I have spent over $25,000 in 4 years on 13 doctors to have these professionals only "guess" at my treatment. I gave him a altamadum to either dedicate more time to me or reimburse me a whole bunch  of money.  It's so frustrating.  This is my third naturopath and they all seem to have the same cocky attitude, I will fix you, I have the answers, I know what you need, they all have said I've healed people with UC with my protocol. Yes they do testing, but they don't know how to treat the test answers I guess. How do we get our bodies to stop attacking itself and being on "high alert' all the time and no one has he answer for that. I just don't want people going out spending money like I have to find no one really has the answer, they are guessing at the treatment. Then the problem with MD's is they just treat the symptoms and don't look further than that. So who is better to see, I've tried them both, I've just broke down to have the meds once more :(
 
What about this G1L protein I read in another post about? I mean if they think this can help, how can we get in on the study do you know?  It's something with baby protein, I'm not to sure. How does one go about finding about the study and being a testie?
 
I started back on rowasa enemas two nights ago, the first day, I pooped my pants in the car. There is something in the mesmeline that doesn't agree with me. I got nausous, then pain like diarreah and I couldn't hold it. It's been a long time since I had this happen. Do you all know if there's a sufla liquid enema of sometime I can call and ask the doctor for? Asacol does the same thing, it makes me very anxious and then I poop my pants. When I say poop, I mean I get cleaned out my whole gut while driving my car. It's so riduculous, it's just funny to me now. I just don't shart, I really cleanse all my body and I have no idea why this happens with mesmeline for me.
 
What about this study, anyone, anyone? Bueller?  I'm just being punchy b/c I'm so ticked at my doc and all my docs who took my money and I haven't had any real results. Gosh every month I was driving 3 hours back and forth to one naturopath, then 2 hours back and forth to accupuncter, then I bought holy water off the internet, I just couldn't stop looking for the answer to the great mystery.
 
I'm going to be still for awhile and quit trying to find a answer for now. I need a break. Peace.
 
 
First scope 7/05 should no UC, but I was bleeding with urgency, was told I had IBS. Six months later, sigmoid showed UC at rectum, 2nd colonoscopy & Endoscopy 7/27/07, Left sided colitis and near cecum (mild) no UC at rectum. On and off meds, but the side effects are worse than the dis-ease itself. 5ASA's make me highly nervous, feeling on verg of panic attack all day,thence "accidents", especially when driving.
12/08 Olive leaf extract, probiotics, holy basil, whole food multi-vitamin. I manage on a daily basis, work out 4-5 times a week. I feel like a volcano during the day and erupt in the AM (bathroom for a hour), the it starts all over again. Try to eat gluten free and low sugar diet.


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/30/2008 8:46 PM (GMT -6)   
I guess I kinda undersand where your coming from. Have pooped myself a few times. And mainly in the truck. Once in the house only 5 feet from them bathroom, just couldn't get there in time. I mainly do it on the rowesa enemas. Doc keeps insisting that they are the best, but I just can't seem to hold them. even on good days. I actually held the canase supp's but he's saying they don't reach up far enough for my symptoms. Am trying to understand this disease and am just confused....
So I understand where your coming from
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 12/30/2008 9:39 PM (GMT -6)   
Been there w/ the pants loading....and true to that - when you unload, there is no holding back....I developed a pretty bad anxiety tick about pooping myself....still have it.... I have never done it in front of anyone - always been alone.....my greatest fear is a public explosion....
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics, Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


ElizaLily
Regular Member


Date Joined Dec 2008
Total Posts : 34
   Posted 12/30/2008 11:01 PM (GMT -6)   
therearemiracles,

I live in Canada and the meds are covered but I too sought out help from a naturopath and I was hugely disappointed. I've also tried reflexology - and no change. The reflexologist was so sweet and really tried to help. I could see the pain in in face when I told him I was still running to the bathroom and the bleeding hadn't stopped. The naturopath, on the other hand, was just so cold and spoke more about money than anything...so I spent a fraction of what you have spent and I was so angry too.
I wish you luck and good health soon. I don't know if you were refrring to the Golimumab study, but I'm in that - still early, but very little change. There is a thread on this site about it and you can also google Golimumab.
Take care.

Eliza

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/30/2008 11:19 PM (GMT -6)   
For others who are desparately seeking relief, remember it's always a good idea to avoid anyone of whatever professional group who talks about cures. The only exception to that is if you're speaking with a colorectal surgeon. At this time, the only "cure" for UC is removal of the entire colon. Anyone who says or implies that they have a non-surgical cure is really only there to collect your money.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


crazytrain411
Regular Member


Date Joined Nov 2008
Total Posts : 109
   Posted 12/31/2008 12:38 AM (GMT -6)   
I dont need a naturopath to tell me stuff I can read freely online. All the major studies and clinical studies are published out there for all to see plain and clear black and white - And draw your own colclusions as well about what you want to take.
Off of 5-ASA (6 years) and 1-day minor flareup since probiotics started.

Probiotics 18 strains (vsl#3 + N.F. Ultimate multi probiotic + Trophic Acidophilus Plus + Nature's Way P. Reuteri + Florastore S. Boulardii) - 500 billion per day. No sugar, Oatmeal in the morning.
L-glutamine, elm powder, vit b & folic acid, 5 g vitamin C, vit D, vit E, Calcium+Magnesium


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 12/31/2008 7:53 AM (GMT -6)   
     I would try to find a GOOD GI doctor.  Mine never beats around the bush.  He knows there is NO cure for this and never sugar coats the disease.  I believe I get the best treatment available.  I have been to see a colorectal surgeon during my last flare which lasted seven months.  He told me my UP is not bad enough for removal of the colon.  It is confined to my rectal area and therefore easier to treat and that it was considered mild to moderate.  Well, if my condition is mild to moderate my heart goes out to people with severe UC.  It is extremely hard to deal with and yes, I have had the poops and couldn't make it to the john in time too.  Thank God it has happened while in the home and NOT in a car or in public.  I have had some pretty close calls though.
     Another thing I noticed while reading your post.  You seem very anxious (and I can understand where you are coming from).  Maybe some anti-anxiety medication could help somewhat.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/31/2008 7:57 AM (GMT -6)   
I understand your bitter frustration. I've been there myself and actually I'm still there. Some people just can't tolerate mesalamines. I am one of them. It makes things so much harder for me with control, I get abdominal pains and an overall feeling like I have the flu. Have you tried Colazal yet? That is what I take and I found that it works much better then any the mesalamines. I also can't do the rectal mesalamines. So when I flare, I am stuck using a steroid enema.

But I agree with Judy 100% - no one - naturopath, MD or DO - should say that they can cure your Uc. That is just not possible. Sure they may be able to HELP you but never cure or "fix" it. If you hear anyone say they can cure you, run as fast as you can and don't waste your time with them.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
To help Healingwell - click here: DONATE
 
 
 
 

 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/31/2008 9:20 AM (GMT -6)   
I get so angry when I hear that alternative med practioners or laymen, or even bad MDs take advantage of UC patients.  I have a hard time believing that these people are well intentioned--especially when they talk about cures.  I feel badly that you have been taken advantage of and I know how we all want to believe that there really is a curative potion, a magic food, a supplement or herb that will cease our suffering.  Good for you for standing up for yourself and seeing this for what it really is.
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Chester_Lampwick
Regular Member


Date Joined Dec 2008
Total Posts : 53
   Posted 12/31/2008 4:01 PM (GMT -6)   
Naturopaths are Not Doctors (ND). They aren't the worst alternative medicine practitioners out there, but their ability is really limited. Doctors go to university for seven years. NDs can get a diploma from the back of a match book. The treatments that a doctor will give you have been proven in randomized double-blind placebo controlled clinical trials. NDs will take their best guess, and offer what sounds good or plausible. Look up a book called "Trick or Treatment". It doesn't beat up on alternative medicine, but rather shows what has been proved, disproved, or not sufficiently tested to date.

There are some herbal remedies I may try based on that book. Not so much for UC , but for anxiety. Maybe some meditation too.
Male, Age 36
UC since July 2006 - entire large intestine
_____________________________________________________________
Current Meds:
2x500mg Salofalk three times daily
 
 

 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/8/2009 5:04 PM (GMT -6)   
The benefit I got from the Naturopath was more information about the disease that I never got from my GI, who just served to change dosages of the same drugs and confirm how much inflamation I had. From the Naturopath I learned about my wheat sensitiviy, which had made a huge difference, and finally started religiously taking probiotics, which I had before only experimented with a little once based on an article I read in the news.
Because he made me think more about the disease and what is happening down there, I stumbled upon this message board! And there is even more knowledge here, I agree.
And I too think I have pretty much got all the advice he had to give, he's done all he can do, so I haven't felt the need to make any new appointments. I spent only a few hundred on appointments.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 1/9/2009 2:03 AM (GMT -6)   
It seems everyone has different experiences with both naturopaths and MD's. I think that is just people in general. I would recommend finding a good GI doc as mine is also open to some natural treatments.

---------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily to remain in remission

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/9/2009 5:59 AM (GMT -6)   
My GI saved my colon. He has a great reputation for being skilled at giving colonoscopies. I've been told he is a really good surgeon too.

However... He knows nothing about what foods I should and should not eat. I researched the Internet, kept a food diary, and figured that out myself. I've have been thinking about taking herbs to clean my liver, kidneys,... I haven't yet though.

My GI is there for when all else fails. I will always be thankful that he saved my colon. However, I didn't see him during my last flareup. I knew exactly what he'd do--prescribe prednisone--and I wasn't ready to go back on prednisone.
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06
Currently in remission

-------------------

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 1/13/2009 1:48 AM (GMT -6)   
subdued, did you see a naturopath or homeopath during your last flare, or just wait it out?

----------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily to remain in remission

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/13/2009 9:05 AM (GMT -6)   
As someone else said, you should be wary of anyone who claims they can cure you, particularly when they haven't yet met you, examined you or run any tests. IMHO, I think a complimentary medicine physician is the best choice - a doctor who uses a mix of traditional, allopathic methods, alternative therapies, dietary recommendations, lifestyle changes and common sense.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 1/13/2009 12:27 PM (GMT -6)   
Any doctor to says he can cure Colitis and claims to have done so in the past, should be considered a liar. Believe me, if he found a cure for Colitis he'd be on TV telling the rest of the world about it. Doctors should not try to guess what your treatment should be, that's dangerous; the only way to know what's wrong with you is to run tests; blood tests, urine tests, hair analysis tests, hormone tests, genetics tests, etc. and then make decisions based on those results. Some doctors can take those results and run them through a computer program to get a detailed analysis of your condition and then use those findings to treat you. Basically, if they're honest they will admit that you will be their guinea pig because they've never cured Colitis before...they have only treated it.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Mesaamaline (sp) Retention Enemas, herbal meds in the search to regain full health.

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