Can't quite get to remission

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SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 8/26/2007 12:25 PM (GMT -7)   
 I was diagnosed August 2006.  I was on Dipentum, Enotcort  and Mesalamine enemas for almost 2 months.  During that time my dad died and I ended up pregnant with twins.  I quit all the prescription meds and researched probiotics and alternatives.  I lost the babies in December.  In January I went full force with watching my diet, probiotices and alternative supplements. 
By April I was doing much better, no urgency, no d, no cramps, more energy. I still had blood in my stool once a day. I was hoping to have this under control by August, but I am not quite there.  I went to my doctor,  a Doctor of family practice and osteopathic manipulative medicine.  He is very open minded to alternative options that I have tried.  Since I still have some blood he suggested I try Asacol.   1 pill twice a day for 1 week then increase to 1 pill three times a day for a couple of months to see if it helps.  Well I have been doing this since July 25 and it really hasn't helped. 
Up until April/May I was doing vitamin E enemas and an occasional mesalamine enema, but with having a normal bm in the early morning I can't get the enemas in.   I don't have time to do an enema in the morning after my bm. 
 
So anyone else with similiar symptoms or any one with thoughts on what else can I do.  I am getting to the frustration level again and I was really hoping, praying, and believing that I could heal myself without the prescription medications. 
 I am going to schedule a colonoscopy in December with a GI doctor. I am looking forward to seeing what is going on in my gut.  Ane this time I will know what to expect and what to ask the doctor. 
 
Thanks,
Darlene
 
 
 Primal Defense, Digestive Enzyme, and FYI
I also take Glutamine Caps, DHEA, Slippery Elm ,  Capryl, Turmeric & Bromelain
Omega 3- Fish oil,  Cal-Gel, and BioK-plus Probiotics
multi-vitamin, vitamin k, Biotin, vitamin D, vitamin B
AloeVera juice & gel
Activia

First flare:  August 2006, diagnosed September 2006
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, Enterobiotics, vitamin E,
Omega 3- Fish oil, Colostrum Plus, Cal-Gel
Vitamin E enema
AloeVera juice
DanActive and Activia


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 8/26/2007 1:56 PM (GMT -7)   
2 or 3 pills of Asacol won't help much if you're flaring. That is considered a maintainance dosage (barely) not a treatment dose. Treatment dosages of Asacol is 8-12. When I was on the maintainance dose of Asacol, I could never get below 6 a day or I would start flaring again. Do you find that you feel better after the Vit E enemas or the Mesalamine?


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HNW
New Member


Date Joined Aug 2007
Total Posts : 16
   Posted 8/26/2007 2:51 PM (GMT -7)   
I was just diagnosed in August (been in a flare since June) and my GI has me on Asacol 3 pill 3 times a day and I have seen a huge improvement. I am also using mesalamine enemas every night. Basically I'm fighting the inflammation from both ends :) haha Maybe you should talk to your GI about upping your dosage of asacol?
Diagnosed with Ulcerative Colitis: August 7, 2007 at age 24
 
Meds so far: Asacol 3 pills 3 times a day
                 Mesalamine Enemas every night
                 Prednisone for 10 days (ending Sept 2) Starting with 50mg
                 and tapering off by 10 every two days  (pcp prescribed for
                 joint pain)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/26/2007 3:02 PM (GMT -7)   
Hi Darlene,

I understand your desire to avoid medications, but I think you're going to find them necessary - and at treatment levels as mentioned above - in order to achieve remission. The good news is Asacol is the lesser of many evils. If you can achieve remission without having to bring out the big guns - steroids and immunosuppresants - you'll be doing well. Perhaps once you're in remission and have been feeling well for quite some time, you might be able to taper off the Asacol, although every GI I've ever seen has urged me to stay on a maintenance dose.
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 8/26/2007 7:05 PM (GMT -7)   
I had a feeling that's what I would hear. Actually I feel pretty good. I am a little stressed with returning to school, I expected that. I just have that little bit of blood in my stool in the morning. Sorry if this is gross, but it is at the beginning of the stool and the end. Most of the time the rest of the stool looks normal. On the weekends I do an enema I don't notice as much blood a few days after. I just don't feel the prescription medications actually heal the ulcers. I think they just mask the symptoms because when you stop taking them symptoms start again. I want something that heals the sores. I just hate the prescription meds and yesterday I started to notice I was having that light headed, dizzy feeling like I did when I was on the medications last year.
Okay, so if I ask my doctor to up my Asacol to 3pills 3 times a day how long will it take before I am in remission? Will the Assacol actually heal the bleeding ulcers? I don't want to have to take prescription meds any longer than necessary.


Darlene
First flare:  August 2006, diagnosed September 2006
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, Enterobiotics, vitamin E,
Omega 3- Fish oil, Colostrum Plus, Cal-Gel
Vitamin E enema
AloeVera juice
DanActive and Activia


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 8/26/2007 7:24 PM (GMT -7)   
You've definitely had a horrifically tough year.

It must be very frustrating for you..although it is for me to hear you're not willing to put in the time to use the 5ASA meds effectively. You should be using both oral and rectal meds to help get your flare under control...and to taper the rectal meds once you're feeling better (and maybe oral) to a maintenance dosage. The goal is to heal the colon and to help prevent further or more severe inflammation.  It takes a while to find how it all works...and as many say...5 ASA meds still have the least side effects for long-term use.  A good preventative/insurance if you can use them.

Having/treating/maintaining UC isn't an all or nothing deal. It's a process of learning how to use your meds faithfully and effectively.

I see you're on other preparations that haven't any proof of helping UC...please try the 5ASA oral and rectal meds fairly.
 
And if they don't work after than...go to step 2.  You do have options...
 
quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 8/26/2007 9:05:57 PM (GMT-6)


BOB59
Regular Member


Date Joined Nov 2005
Total Posts : 151
   Posted 8/28/2007 2:20 AM (GMT -7)   

SnookieBow

Having read your posts and assuming you have either UC or CD and being determined to try anything to bring you to (or as close as possible to) remission, I would suggest the SCD (Specific Carbohydrate Diet).  You probably have heard about it, but if you didn't and are interested, google SCD or "Breaking the Vicious Cycle" which is the name of the book that totally explains and describes this diet method.

Of course following the diet does not mean you can stop taking the meds prescribed by your dr. Most of us SCD followers keep taking meds along with the diet. Others after a while are lucky enough to stop all meds and just follow the diet. We are all different.

I must warn you that this method demands total adherence to the diet and only those totally comitted to it, with enough willpower may achieve good results. But if one can do it, I know it really works and - no side effects.

I am doing very well and know the diet was the most important thing I have done to achieve an amost-remission condition I presently have.

Bob59


bob59
 
UC (sigmoid) since 2002
B12, folic acid, magnesium and acidophilus
symptoms free since Feb 2007
on SCD since Dec 2005


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/28/2007 8:55 AM (GMT -7)   
Hi Darlene,

I am sorry to hear about all of your losses.

For the UC, I'd recommend going to see a GI, you need a specialist who is trained and who deals with this on a daily basis, I'm sure your other Dr. is wonderful.......however, it's like taking your car for transmission service at a place that primarly does oil changes.

I did not take my Asacol as prescribed, I took about 6 pills a day 5 days a week or sometimes less and I had a big flare b/c of that. I was supposed to be taking 6 pills two times a day 7 days a week and I started that 9 weeks ago and am doing much better, almost normal. Just started taking Lialda and haven't noticed any real difference yet.

HTH!
Beth
Beth, 31
 
UC Diagnosed March 2000
Lialda 1.2mg 1xday 8/24/07 (prev. Asacol 4800mg day)
Calcium and Vitamin D 600 mg 2xday
Simvastatin 20 mg 1xday
Diovan 80mg 1xday (dx: hematuria w/proteinuria): I have normal blood pressure, this is for my kidney - waiting for a dx.
 


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 8/30/2007 8:24 PM (GMT -7)   
Okay, to answer some questions and respond to some of the post.  I have UC. Yes, I have seen 2 GI doctors.  The first one did my colonoscopy and put me on the Entocort, Depentum and Mesalamine enemas.  The second GI I saw wanted to put me on Asacol, but I was pregnant at the time and refused. 
Yes I have tried many of the suggestions on the SCD, except I believe Aloe Vera Juice has natural healing and detoxifying powers so I drink it. At least 4 oz a night.  I eat Stony Fields, Horizon or Brown Cow yogurt.  I decided to quit the Activia because I noticed the high fructose corn syrup.  Other than that I have not had a bread, wheat or pasta product in over a year. My diet has been a lot of yogurt, spinach, asparagus, sauerkraut, chicken, fish, turkey, Maranatha creamy peanut butter and raw honey, eggs, soy milk, the green vegetable juices, bananas and applesauce.  Yeah I know there are a few things, that don't go along with the SCD or the Vitamin E enema diet. 
 
I feel something must be working because I am feeling pretty good, just have the little blood in my stool.  January/February  I looked horrible.  Too thin, and I had the urgency, diarrhea, blood, no energy and mucas.  I have gained back 12 lbs and this was before I started on the 3 Asacol a day. 
I haven't had a chance to call my doctor, but I will.  I know we had discussed getting another colonsocopy and I will be going back to the second GI doctor to have that done. 
 
Thanks for all your opinions.  I really wish there was some other way to fight this disease with out the prescription meds. 
 
Snookiebow
 
First flare:  August 2006, diagnosed September 2006
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, Enterobiotics, vitamin E,
Omega 3- Fish oil, Colostrum Plus, Cal-Gel
Vitamin E enema
AloeVera juice
DanActive and Activia


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 8/30/2007 10:57 PM (GMT -7)   
SnookieBow said...
Okay, to answer some questions and respond to some of the post.  I have UC. Yes, I have seen 2 GI doctors.  The first one did my colonoscopy and put me on the Entocort, Depentum and Mesalamine enemas.  The second GI I saw wanted to put me on Asacol, but I was pregnant at the time and refused. 
Yes I have tried many of the suggestions on the SCD, except I believe Aloe Vera Juice has natural healing and detoxifying powers so I drink it. At least 4 oz a night.  I eat Stony Fields, Horizon or Brown Cow yogurt.  I decided to quit the Activia because I noticed the high fructose corn syrup.  Other than that I have not had a bread, wheat or pasta product in over a year. My diet has been a lot of yogurt, spinach, asparagus, sauerkraut, chicken, fish, turkey, Maranatha creamy peanut butter and raw honey, eggs, soy milk, the green vegetable juices, bananas and applesauce.  Yeah I know there are a few things, that don't go along with the SCD or the Vitamin E enema diet. 
 
I feel something must be working because I am feeling pretty good, just have the little blood in my stool.  January/February  I looked horrible.  Too thin, and I had the urgency, diarrhea, blood, no energy and mucas.  I have gained back 12 lbs and this was before I started on the 3 Asacol a day. 
I haven't had a chance to call my doctor, but I will.  I know we had discussed getting another colonsocopy and I will be going back to the second GI doctor to have that done. 
 
Thanks for all your opinions.  I really wish there was some other way to fight this disease with out the prescription meds. 
 
Snookiebow
 

Your diet could and should be tweaked more.
 
My suggestions would be to DROP GARDEN OF LIFE PRODUCTS-Waste of money. Garden of life founder shown to have degree from a degree mill university.
Drop oral glutamine-waste of money. Glutamine gets broken down to smaller peptides.  Better off using glutamine suppositories.  Don't try that by the way even though they are avail.
Drop DHEA and slippery elm. Don't mess with your hormones.  DHEA converts mainly to estrogen. Slippery elm is not calming to the colon and is actually irritating to it.
 
Drop bromelain. It is not anti inflammatory contrary to what sales literature will have you believe and will further irritate the irritated colon as it is so high in proteases.
DROP DROP DROP DROP vitamin K unless your doctor says so.  That is a HORRIBLE vitamin as it will mainly clot your blood instead of thinning it.   You don't need to CLOT your blood.   You are not bleeding because your blood is thin.  You are at increased risk of a a heart attack or clot on that vitamin.  I speak from experience.
 
Drop the aloe vera juice and gel.  Aloe was never intened to be drank and it's quack medicine to take it that way.  Plus it actually speeds up the bodies reaction to infection and you don't need your immune system ramped up.
 
Forget the SCD diet mostly.  Yes avoid straight out sugar.  Yes avoid wheat.  However, you must start including resistant starches into your diet to get the anti inflammatory benefits of butyrate formed from the starch.
 
Quit eating applesauce.  You'll be like a baby who is colicky.  The acid conversion from eating applesauce is highly irritating.
 
Be careful with how much spinach you eat as it will make you have the runs because of the high amount of chlorophyll in it.  But spinach is good.  Just don't eat it close to eating calcium as you will get kidney stones.
 
Instead of eating peanut butter, eat walnuts.  Walnuts are rich in omega 3's and peanuts are not.    Get creamy walnut butter if you can find it raw.
 

Post Edited (Horus) : 8/31/2007 12:00:03 AM (GMT-6)


Eric704
Regular Member


Date Joined Jan 2006
Total Posts : 261
   Posted 8/31/2007 1:05 AM (GMT -7)   
Since you've been off starches and flour for so long, I wouldn't recommend adding it to your diet out of nowhere when you've clearly improved by not eating them. That includes resistant starches.

I would suggest stopping the peanut butter and trying walnut butter as mentioned above. Stick to your diet though, it's obviously helping, just tweak it a bit more.

Also if you REALLY want to see if you have anything going on in your gut you should do a parasite testing. It's only $125 total for the whole thing. You need to do it from a good lab though, because most labs don't know how to test properly. They can find anything from worms, bacteria and yeast build up (the bad kind). I did mine from http://www.parasitetesting.com/ however there is also http://www.gsdl.com/

It could reveal something you're missing. Don't rely on your doctors local labratory. Those labs above will fax him the lab results.

AKB
Veteran Member


Date Joined Mar 2006
Total Posts : 992
   Posted 8/31/2007 2:21 AM (GMT -7)   
hey horus, curious how you came to your conclusions about slippery elm being an irritant? It's just a mucilagen, so where/why do you think it hurts? I've seen no impact with or without it-- it does seem to help if one is out drinking.

Also, vitamin K is a huge component of wheatgrass juice, which has one study showing it to be beneficial for UC.

Aloe also has studies showing it to be beneficial in colitis. Anecdotally, it has definitely helped me, so I find it somewhat in contrast to your usual rational approach to dismiss it as 'quack' medicine based on your opinion.
Dx:

Left-sided UC, Jun 2005. Flex-sig only... clear for first 20cms, then inflamed through next 30cms.

Therapies:

Pharmaceutical: Pentasa 3G/day, hydrocort 1x every 7 days
Probiotics: Acidophilus Pearls, Primadophilus Bifidus
Naturals: Caprylic Acid, Methylated B-12, Vit ACDE, Zinc (w/copper), Selenium, Turmeric, Bromelain, Luteolin
Killer Foods: Soda, Fried Food (especially french fries!), Beer, Red Wine, Pepperoncinis


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/31/2007 7:09 AM (GMT -7)   
SnookieBow said...
I just don't feel the prescription medications actually heal the ulcers. I think they just mask the symptoms because when you stop taking them symptoms start again. I want something that heals the sores.
I wouldn't say they mask symptoms... more that they reduce inflammation and irritation which is a roundabout way of healing or at least preventing ulceration. Web MD says this:
 
"Mesalamine is an aminosalicylate anti-inflammatory drug. It is believed to work by blocking the production of certain natural chemicals that may cause pain and swelling."
 
Basically, it has the same anti-inflammatory effect of the omega-3 fish oil supplements you're taking.
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


Eric704
Regular Member


Date Joined Jan 2006
Total Posts : 261
   Posted 8/31/2007 7:55 AM (GMT -7)   
I've had better results off medications that dampen your immune system. Just saying.. It's not always the case that everyone should be on medications no matter what.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 8/31/2007 3:05 PM (GMT -7)   

I'm wondering if a dose of something like diflucan or nystatin might get you there...(remission). I see you are taking natural antifungals, but some peeple need a prescription antifungal to get rid of all the symptoms, if they do have a fungal condition. Just a thought. I would definitely continue staying away from grains and sugar, at least for now. Just my opinion..

Kim


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 9/1/2007 7:31 PM (GMT -7)   
Eric704.  What do you mean that you've had better results off medications that dampen your immune system.  Are you talking about Asacol, prescription meds in general or the supplements I'm taking?
 
 
Kim-  I am assuming the diflucan or nystatin is a prescription.  How do you know if it is a fungal thing?  Certain symptoms to look for? 
 
Horus-  I have read many books on supplements and healing foods. I have found many sources that support the products I am using.   My doctor suggested the DHEA and it is only 10 mg.  Because my count was way below normal. He also suggested the Glutamine.  I have consulted with the experts at the Whole Food Market.  I have communitcated with other UC'ers.    After reading your post I felt pretty discouraged. Although  I thought I must be doing something right because I am not feeling horrible.  As AKB states how do you come to these conclusions?  Where are the studies that say these things are not good for individuals with UC?  Every thing I have read has shown these products to be of benefit to many with UC.  I need proof or testimonials  before I stop or start taking a product. And what exactly are resistant starches? As far as my diet goes, is there something else that  would be good to eat to help with the healing? 
 
 
 
 
Darlene
 
 
 
 
 

Eric704
Regular Member


Date Joined Jan 2006
Total Posts : 261
   Posted 9/1/2007 8:03 PM (GMT -7)   
I mean off all UC based medications. Supplements aren't medications.

I would read my first post though, about the parasite testing.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 9/2/2007 5:43 PM (GMT -7)   
SnookieBow said...
Horus-  I have read many books on supplements and healing foods. I have found many sources that support the products I am using.   My doctor suggested the DHEA and it is only 10 mg.  Because my count was way below normal. He also suggested the Glutamine.  I have consulted with the experts at the Whole Food Market.  I have communitcated with other UC'ers.    After reading your post I felt pretty discouraged. Although  I thought I must be doing something right because I am not feeling horrible.  As AKB states how do you come to these conclusions?  Where are the studies that say these things are not good for individuals with UC?  Every thing I have read has shown these products to be of benefit to many with UC.  I need proof or testimonials  before I stop or start taking a product. And what exactly are resistant starches? As far as my diet goes, is there something else that  would be good to eat to help with the healing? 
Darlene, please don't let anyone discourage you. You alone know what works for your body and your specific situation. Others can certainly share their experiences, but what works for some of us, doesn't work for others. From the book Optimal Digestion: "Restoring the normal balance of cortisol and DHEA will help the body produce more immunocytes and therefore improve secretory IgA levels. Measuring cortisol and DHEA can also identify adrenal dysfunction, and treatment strategies can be developed to restore normal function, optimizing health and immunity."
 
There's also plenty of information about the benefits of l-glutamine and aloe and testimonials in support of their use. The only caution I've read about is to be sure you choose an aloe that has the laxative component (aloin) removed and has no carrageenan or other additives.
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 9/2/2007 9:02 PM (GMT -7)   
I am drinking the Natures Request Aloe Vera Juice.  I get it at Sam's Club.  $6.00 a gallon.  It is actually another division of Lily of the the Desert.  All the aloin and aloe emodin are removed.  At the Whole Food Market I bought the Lily of the Desert Aloe Vera Gel and it has the the Carrageenan in it. 
I will continue to take the supplements as I am doing.  Something is working.  I am going to research Horus' comments on the diet before I change anything.  I dearly love Maranatha Creamy peanut butter and raw honey.  I feel that is what has helped me to put the weight back on. 
 
 I will check into the parasite testing.  I had a stool sample done in March and they didn't find anything unusual.  Said I had a lot of good bacteria.  At the time I was worried about the smell.  It smelled like dead.   Is that smell typical while in a flare? 
I looked up the resitant starches so I know what you are talking about and no I don't think I want to include them yet. 
 
 
Thanks for your information and advice.
 
Darlene
 

DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 9/6/2007 11:47 AM (GMT -7)   
Darlene, I too wanted to have a baby drug free.  I was able to do it with a combo of the SCD and vit e enemas.  It got bad, so I had to be on prednisone to get it under control and as I came down off it, I got sick.  I started the SCD diet (100% strict) and enemas full force and was better in 3 days.  I did the enemas straight for a few weeks.  I got pregnant a month after getting off all my drugs (high dose asacol worked for a while and then just stopped one day).  I did the vit e enemas on and off throughout the pregnancy since I didn't see the harm in a "topical" application, but nothing else.  He came out perfect and not only that, he had NO digestive problems, etc.  He's mild mannered, never had a single moment of gas pain, no discomfort, etc, that babies normally have (I have two others too, so I know how they can be).  I 100% blame the diet for that!!!  Anyway, by the time he was born I was off the enemas.  I took them about 3 days when he was about 2 months old, but was afraid it would upset his tummy (paranoid mom b/c it wasn't really).  When he was 9 months old I was getting a bit sick again and of course paranoid me didn't prevent with the enemas so now I'm up a creek.  Been sick a few months and can't kick it.  I think this all works WONDERFULLY as a preventative, but if it's super bad, I don't think it can get you over the hump.  BUT, it sounds like you are almost there and if you did find the time to do the enemas each day then you would get better within a week or so.  Can you do them at night?  I do them before bed so I don't move around too much and have to use the bathroom for a good long while. Also so I can lay on my side and hopefully get it up in there more. 
I hope you find your answer.

Oh yeah, on whole it worked for over a year and a half for me before I blew it by not maintaining.


dx late April 2005 with UC after birth of my son with pancolitis (though my first doc never told me that!)
meds didn't work
Started SCD and vit e enemas 12/9/05...that and meds, remission 12/11/05, off meds 12/20 (were on the way out before that), stopped enemas 3/23
 
*In Remission* - almost 100% anyway
 
Pregnant, due Oct 20th or so...  not scared...just...unsure
 

Post Edited (DeniseW) : 9/6/2007 12:50:13 PM (GMT-6)


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 9/7/2007 9:03 PM (GMT -7)   
Denise
 
Thanks for your reply.  It is hard to do the enema at night, because my bm is in my colon and I can't pass it  at night. 
My routine is shower in the morning and then my gut wakes up and then I can go.  My bm's are formed.  No diarrhea. I have to leave the house by 7 a.m. so it is impossible to do an enema in the morning.    
I called my doctor and he suggested upping the Asacol to 2pills 3times a day.  I really don't want to, but may try and see if it helps.   
 
A question for you, if you have active UC do you automatically have to have a c-section when pregnant? I probably shouldn't get pregnant again, but the thought is there. 
 
 
Darlene  
 
 
 
First flare:  August 2006, diagnosed September 2006
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, Enterobiotics, vitamin E,
Omega 3- Fish oil, Colostrum Plus, Cal-Gel
Vitamin E enema
AloeVera juice
DanActive and Activia


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 9/9/2007 8:28 AM (GMT -7)   
I really really don't think so. And from what I gather pg will probably change what happens anyway. And each pg is different too. I knew someone (in person) who had triplets with no symptoms, than about a year later she got pg with a singleton and was flaring from then on (I lost touch with her when he was almost a year and she was still sick). I just think that's crazy b/c you'd think 3 would stress your body out more right? But maybe she was too busy making babies to attack herself? Anyway, it will probably change when you're pg anyway.
But everyone poops on the table anyway.
Honestly though, I think out of everything I do, the enemas are the best. But then, I have water, not solid stuff coming out. I have no idea how things change when you have this with solid stool. I've never been one of those people.
Don't underestimate the power of your body to do amazing things either.
dx late April 2005 with UC after birth of my son with pancolitis (though my first doc never told me that!)
meds didn't work
Started SCD and vit e enemas 12/9/05...that and meds, remission 12/11/05, off meds 12/20 (were on the way out before that), stopped enemas 3/23
 
*In Remission* - almost 100% anyway
 
Pregnant, due Oct 20th or so...  not scared...just...unsure
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 9/9/2007 10:28 AM (GMT -7)   
Wait wait wait....You don't have time to DO the enema, or you don't have time to lay down after the enema? It takes me like 5 minutes to DO the enema (cutting open the pills to cleaning up so it never happened), so that's why I ask. I take them twice a day now since I'm sick and I still reap the benefits when I don't lay down (which is almost never during the day ones). All that seems to matter is that it's in there.
dx late April 2005 with UC after birth of my son with pancolitis (though my first doc never told me that!)
meds didn't work
Started SCD and vit e enemas 12/9/05...that and meds, remission 12/11/05, off meds 12/20 (were on the way out before that), stopped enemas 3/23
 
*In Remission* - almost 100% anyway
 
Pregnant, due Oct 20th or so...  not scared...just...unsure
 


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 9/9/2007 1:53 PM (GMT -7)   
Exactly, I don't have time in the morning to lay there and wait for it to work. I'm also worried it will run out of me. And I hate wearing a Depend. I don't even know if it would help to get up an hour earlier. I will try, but it is goiing to be hard. 4:45 in the morning! UGGH!
Also wondering how you do make vitamin e enema. I had a compounding pharmacy create mine.
Darlene
First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, , vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Vitamin E enema & occasional Rowasa enema
AloeVera juice


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 9/9/2007 5:19 PM (GMT -7)   
I've never had mine run out of me. I was afraid at first, but it's never happened and I've been doing it on and off for 2 years almost. I try and do mine at night so I can lay down, but like I said, it still helps (maybe as much, maybe not) if you just have it in there.
I have no idea how a compounding pharmacy would make it. Never thought of having someone else do it. I use a rowasa enema bottle (a child or infant enema bottle will work too) that I washed out. I get the NOW brand of 1000iu Vit E with the -ol not -yl (natural, not synthetic). I cut the end of the pills with some scissors and empty them into the rowasa bottle. I use about 20 of them just to try and get it as far in as possible. They aren't THAT cheap, so I also don't want to waste them. I just wash the end of the bottle in super hot water and soap(not the inside) and reuse it. I have the bottle of vit e, the scissors, and a tiny little vasaline thing all in a plastic bag and in the cabinet. I set the bottle somewhere else b/c it leaks on it's side (and vit e doesn't come off of anything). Takes no time at all now, and it's all there together. I used a tablespoon of boiled water with it in the first week or so, but stopped that b/c it was too time consuming and seemed pointless to me.
I've come to the conclusion over the past almost 3 years that if something is going to work, it's going to do it within 2-3 days. All this crap about mesalamine taking 6w to see any difference is crap. I've taken it twice and been better within 24 hours (the thrid time it did nothing). Same with the vit e, same with the licorice (shouldn't take that if you're trying to get pg though). Everything I've ever used has shown an improvement quickly. I don't buy into all this taking pills forever when they aren't working.
Sorry, side frustration rant. Anyway, I'd try it a week and see if you've improved. I think you said up there somewhere that you were better when you did it, so I'd just give it a try in the morning.
I wouldn't want to get up an hour earlier either. I'd try not laying down first. :P
dx late April 2005 with UC after birth of my son with pancolitis (though my first doc never told me that!)
meds didn't work
Started SCD and vit e enemas 12/9/05...that and meds, remission 12/11/05, off meds 12/20 (were on the way out before that), stopped enemas 3/23
 
*In Remission* - almost 100% anyway
 
Pregnant, due Oct 20th or so...  not scared...just...unsure
 

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