Question - Starting Culturelle - Update and more questions

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PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/1/2008 3:14 PM (GMT -6)   
Again looking for advice. . . .

I have heard so much good about Culturelle that I've wanted to try it. I called my GI 2 weeks ago several times to see his opinion and he wouldn't get on the phone, finally after the 4th call in 5 days he told the nurse to tell me to schedule an office visit. The first available "non-urgent" appointment they could give me was October 22. I wanted to get started sooner so I could go to the parks this summer and ride roller coasters without fear of having an urge while in line or even worse on the coaster. If it went really well I would maybe get a little spunky and have a hot dog at the park instead of walking out to my car to eat what I bring that I know won't have me in the bathroom several times before the day is over.

Would I be foolish to try Culturelle without having talked to him first? I just want to have a little fun this year since I haven't been able to ride them in the past 3 years because of health (flare 3 yrs ago pregnant 2 yrs ago and nursing last year) It's the best I have felt in a long time and I was hoping to tweak that last little bit so I could enjoy it (I go 4-6 times a day depending on the morning.)
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36
"The List "
- UC 1997 currently unmedicated was on Colozal from 2001-2007
- Stage 3 CKD (Chronic Kidney Disease) 2007 taking 7.5mg lisinopril
- Anemic - Ferolicit IV bi-weekly
- Allergies - skin hives when exposed to water - Zyrtec 10mg
- haven't been tested officially but pine is also suspected

Post Edited (PeanutMom) : 7/9/2008 1:46:15 PM (GMT-6)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/1/2008 3:22 PM (GMT -6)   
Kim, most GI's here in the US won't tell you a probiotic is a good idea. They just don't mention it, we learn from one another. After being on a probiotic for a year, I mentioned to my GI that I had ridden out a course of antibiotics by increasing my probiotic dosage. He said, well a probiotic can be helpful to prevent C. diff. infection when you're on antibiotics.

I'm not sure how much most docs really know about probiotics. Most of us just take them because we know they've helped others. There's no way I know of that a quality probiotic can cause you problems. It's just adding to the healthy bacteria strains in your colon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/1/2008 8:48 PM (GMT -6)   
Judy,

Thanks for the advice, I have talked with my family and they agree that with his lack of input and the information I've looked up and printed on probiotics in general it's worth giving it a try.

This is not the first time my GI has literally blown off my questions but it's quickly looking like it may be his last chance because I'm seriously thinking of replacing him. . . he said some really not professional things to me after I gave birth while I was nursing that had me in tears for days. Problem was he waited until my mother (there to help me with the baby) and the nurse had left the room to say these things so it's really my word against his . .. not a battle I think I would win unfortunately.

Thank you for the input. . .I'm starting first thing tomorrow morning. I'll let you know how it goes
Kim ~ Mom of Nathaniel aka "Peanut" 18months old
========================
I'm a married 36 yr old mom and here's "The list "
- UC 1997 currently unmedicated was on Colozal from 2001-2007
- Stage 3 CKD (Chronic Kidney Disease) 2007 taking 7.5mg lisinopril
- Anemic - Ferolicit IV bi-weekly
- Ashermans Syndrome - no treatment
- Allergies - water - haven't been tested officially but pine suspected


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/9/2008 2:46 PM (GMT -6)   
Update July 9, 2008

I started the Culturelle July 1st and haven't noticed a change in frequency but have noticed a change in consistency and urgency. I still have to go as often but instead of pain I get a pressure kind of feeling. . . I'll take that as a bonus (o: I also have more of a thick baby food consistency instead of mostly watery.

Question here is, should I be waiting longer to see if the frequency slows or since I am having a slight improvement should I actually be taking more than the 1 pill a day? Not all that familiar with probiotics and the pharmacy knows even less than I do. . .GI won't see me until October 22nd unless I go into flare which I don't think I am so I'm at a loss where to go from here other than give up trying to improve this situation on my own which I'm not about to do.
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36
"The List "
- UC 1997 currently unmedicated was on Colozal from 2001-2007
- Stage 3 CKD (Chronic Kidney Disease) 2007 taking 7.5mg lisinopril
- Anemic - Ferolicit IV bi-weekly
- Allergies - skin hives when exposed to water - Zyrtec 10mg
- haven't been tested officially but pine is also suspected


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 7/9/2008 3:05 PM (GMT -6)   
I take two a day and it could take a couple of weeks for some people to see a difference.

ps.
You might feel bloated for a few days at the beginning.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30687
   Posted 7/9/2008 3:37 PM (GMT -6)   
PM.....I would never ask the advice of my GI regarding probiotics let alone set up another appointment to find out. Remember that your GI thinks that 10 bms a day is good enough....I'd hate to hear the response and for you to be shut out because of it.


I started probiotics and then told him I was using them. He asked which brand ....and said they're good ones to take. I'd consider myself proactive. I don't try everything out there because I know my meds work, but I think EVERYONE should be using probiotics regardless, considering what's in the food supply and what we pick up hand to mouth. It's a protection we need.

Now, in saying that.....there are a large number of probiotics and different strains available and in many combinations. Do the homework and seek what can work best for you if the Culturelle isn't what you feel you need. Do give them a fair try...they seem good to me.

I take mine at night before bedtime....all of them at once. I do get gas during the day from them but I have no discomfort.

That's an option for you.

Urgency won't probably be helped by them, but rectal meds will help. Have you never been on them or offered them?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/9/2008 4:28 PM (GMT -6)   
I have been taking probiotics for over 35 years and long before I was diagnosed with UC. I agree that you don't need a doctor's appt to get started on them, but just see how you do. I rarely take more than one per day but you can if you feel you need to.

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


UC Mom
Regular Member


Date Joined Jun 2007
Total Posts : 146
   Posted 7/9/2008 5:03 PM (GMT -6)   
Hi Peanut Mom. Have you read the posts on Immodium for "special occasions"? Maybe that would help you before going to the park. My son's GI dr. said he could take 2 every 6 hours because he was traveling to PA from SC on a big van with his summer lacrosse team. I believe it gave my son the peace of mind to get on the van.
UC Mom
Son diagnosed 10, 2006 at age 15
6MP 75 mg. per day
Vitamin Supplements


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/9/2008 8:05 PM (GMT -6)   

Hi!  I am pretty new at this but learning a lot and the Nurse P I saw today helped me a lot.  First of all, my gastro doctor gave me my first probiotics in my life right after diagnosis. I take Align but someone said you should find the one that helps you - they are different.

Also, I have IBS and have taken Imodium for years when I had to go out and would not be near a bathroom, etc.  Like someone said "special occasions".  Today the NP said it is fine to take Imodium as prescribed!  She also said that the medication I am starting - Colazal - should reduce my symptoms of urgency, gas, etc. in time so I won't need the Imodium. 

ElaineNY


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Canasa 1000mg. once a day - added Colazal 3X2 for a month
Probiotic Align (after trying primal defense)
Prilosec for GERD
Inderol for hypertension
Xanax and Lipitor
 
 
 
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/10/2008 7:24 AM (GMT -6)   
Thanks I'll try 2 a day and see if that helps more, I do see a slight change and I'm happy about that. The urgency issue is better that's for sure, I just wanted to curb the frequency issues too.

I didn't think about Imodium, I've done that in the past, not sure why I didn't remember it. . . thanks so much for the reminder.

I'll keep you posted I appreciate all the advice.
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36
"The List "
- UC 1997 currently unmedicated was on Colozal from 2001-2007
- Stage 3 CKD (Chronic Kidney Disease) 2007 taking 7.5mg lisinopril
- Anemic - Ferolicit IV bi-weekly
- Allergies - skin hives when exposed to water - Zyrtec 10mg
- haven't been tested officially but pine is also suspected


quincy
Elite Member


Date Joined May 2003
Total Posts : 30687
   Posted 7/10/2008 2:51 PM (GMT -6)   
Don't use too much of the imodium...it would be better to ask the doc for a 'script of dicyclomine or whatever antispasmodic.

I would be better to use a fibre supplement than the imodium...save it for special occasions.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/10/2008 5:28 PM (GMT -6)   

Of course, not too much Imodium.  And it does not "work" good for everyone.  My case it works great - 1/2 or whole 2 hours before going out and no problems.  And next day back to normal.  Not everyone has the same results. 

As my NP told me Imodium only helps the "symptoms" but does not cure the problem which is why we take the other meds - Asacol, Colazal, etc. - then we won't need the Imodium.  Elaine


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Canasa 1000mg. once a day - added Colazal 3X2 for a month
Probiotic Align (after trying primal defense)
Prilosec for GERD
Inderol for hypertension
Xanax and Lipitor
 
 
 
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/14/2008 8:45 AM (GMT -6)   
I took the Imodium about 1 every 4-6 hours while at the park, we had a good day. I took breaks for the bathrooms as I was near them but never had any urgency. It was nice to be able to choose when I went instead of standing there in pain waiting for a stall to open up.

I haven't tried doubling the Culturelle yet, I thought I'd give it more time to see if the frequency got better with time. I was back to normal the day after the park so the imodium didn't mess me up too much.
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36

"The List "

- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (good folic acid level and the only iron supplement I can manage to take)Colozal from 6/2001-7/2007 Asacol 8/2000 -5/2001 no effect - (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) dx 9/2007 with FSGS - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV bi-weekly for now (re-evaluated every 16 weeks)
- Allergies - Zyrtec 10mg  - skin hives when exposed to water (not kidding)(haven't been tested officially but pine alergy is also suspected)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/14/2008 9:10 AM (GMT -6)   

Kim, glad you enjoyed the park.

You know I am 68 years old and the gastro doc thinks I have had UC for years but never so bad that it caused bloody stool.  That is why I went for a colonoscopy and gastro help.  I was diagnosed when about 35 with what was called "spastic colon" then.  I have been taking Imodium for years in small doses only when necessary and the gastro doc said it has not done me any harm.  Like I said before - it does not cure or heal UC but it is a good temporary help for the symptoms when you need it most.

ElaineNY


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Canasa 1000mg. once a day - added Colazal 3X2 for a month
Probiotic Align (after trying primal defense)
Prilosec for GERD
Inderol for hypertension
Xanax and Lipitor
 
 
 
 
 


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 7/14/2008 12:49 PM (GMT -6)   
My GI told me I should try some Pro-biotics because there were some studies that suggested they may have a beneficial use to some people. Or something like that..
Male 36yrs old. Indeterminate Colitis 6 yrs.


Fish Oil
Lialda
Protonix
multi vitamin


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/15/2008 7:46 AM (GMT -6)   
Elaine, What part of NY are you from I'm in the eastern side of the state kind of near Albany. The reason I ask is that I'm looking for a new GOOD GI. The more and more I learn the more I'm not liking mine and after the crap he dished out to me when I was a nursing mother I can barely stomach being around him without mouthing off to him.

**Please limit signature to 10 lines or less (including blank lines). Thanks!!!**

Post Edited By Moderator (tjf) : 7/15/2008 7:05:31 AM (GMT-6)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/15/2008 9:36 AM (GMT -6)   

Sorry - don't know any in the Albany area.  I live West of Utica/Rome - near Syracuse. 

I go to Oneida for gastro and not sure I like mine so much either although I have only seen him a couple times.  Right now Canasa and Colazal have not changed anything and today it is worse. 

My husband is from Albany - born there and he has a few relatives there - nieces, etc.

Hope we both find what we need to fight this horrible disease.  I am 68 and too old to be doing this - I need to be enjoying my "golden years"  hee hee!

ElaineNY


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Canasa 1000mg. once a day - added Colazal 3X2 for a month
Probiotic Align (after trying primal defense)
Prilosec for GERD
Inderol for hypertension
Xanax and Lipitor
 
 
 
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/15/2008 3:27 PM (GMT -6)   
Elaine, yes you should! You've earned that.

Good luck with the GI search, I'm going to give mine one more chance to be humanly civil to me and not a snippy childish brat. If he's unwilling to talk to me like a person and snips at me like he did the last time I was there then I will be on the search for a new GI. I've been with him and his practice since I moved back to NY in 2001 so I have most of my UC history with him. I don't travel 1 hour up to Albany to be treated like dirt, I can call my rude brother for that and save the gas money! LOL
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 7/19/2008 11:27 PM (GMT -6)   
Elaine,

I agree most everyone else. It is hard to find a doctor that will recommend probiotics, but if you want to start taking them, go ahead and try one. It might be good to do a Google on probiotics to find out more info about them first. While there isn't much research on them, there is plenty of info about the different strains of pro-bacteria, sometimes even with a description of what they help with. I was taking Florastor for close to 2 years (started taking it after a c diff infection on the recommendation of my doc at the time) before the cost made me want to try some cheaper ones. One thing to be careful of, it seems that every time I try a different probiotic, I get gassy, bloaty, and very irregular (more so than normal) for the first few days. My current GI, who not only believes in probiotics, but adamently tells his patients to take them, gave me some samples of Flora-Q2 and Align. The Align didn't agree with me, but the Flora-Q2 worked wonders. Unfortunately it costs more than the Florastor, and I'd like to find one that I don't have to purchase online. I've combed through the message boards for UC and Crohn's to find out what others are taking, mainly by looking at their signatures. If you do a site search, you'll find a number of discussions about what pro-bs people are taking. I generally wind up taking more than the required dosage, so I try to stay away from the ones that tell you to take 3 a day, or anything that says pearls (they only sell pearls in boxes of thirty, so if I double the dosage, I double the price). I want something that only requires one a day that I can increase dosage to my liking without breaking the bank.

Post Edited (beartooth) : 7/19/2008 10:38:47 PM (GMT-6)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 7/19/2008 11:36 PM (GMT -6)   
One thing I forgot to mention. It seems to me that the pro-bs that contain more than one strain of bacteria are more helpful. The Flora-Q2 contained 4 or 5 strains, which is why I think it helped me so much. I looked up Culturelle, and it only has one strain, but is extremely reasonably priced. Give it a whirl, and if it helps, great. If not, try a different one.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/20/2008 10:14 AM (GMT -6)   

beartooth - I was given Align samples from gastro doc even before the colonoscopy and diagnosis.  I took it two months and it certainly helped firm up my stool.  Then a friend who has Crohns recommended Primal Defense - I order some and took it a couple weeks but could not adjust to the gas and bloated feeling so went back to Align.  She swears by PD.  WE are all different no doubt and our systems have to "find" what works best!  Staying on Align now for another month and all is well in that department - now if I could get rid of cramping and blood!!

ElaineNY


68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Canasa 1000mg. once a day - added Colazal 3X2 for a month
Probiotic Align (after trying primal defense)
Prilosec for GERD
Inderol for hypertension
Xanax and Lipitor
 
 
 
 
 


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/21/2008 11:22 AM (GMT -6)   

Hi PeanutMom,

My son is 2 and diagnosed in Apr this year he's had problems since he was born. he has not had good reactions to any of the meds he has been on. The last med Sulfasalyzine was horrible so his GI took him off everything and put him on Culturella for kids. He is doing fantastic now it's been about a month from his last flare up( he normally would have them every 3 weeks) I'm still holding my breath. As for your GI I would say find another to not even get on the phone with you he sounds pretty full of himself. You need someone who will be there whenever to answer your questions and help you through. My son's GI is awesome no matter when he's there, unfortuatly he's in another town 2 hrs away but he's worth it. He communicates very well with my son's Ped. I hope the probotics work for you. I've also read about the use of Aloe Vera juice has anyone out there used this, read about or heard anything?


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/21/2008 11:46 AM (GMT -6)   
Rocal,

My heart goes out to you, I wouldn't wish this on anyone and least of all a baby... I have an 18month old and can't imagine how I'd deal with him having this same disease. I am finding out that it's more his office staff that's inept than he is. They were the ones telling me he wasn't going to get on the phone. He heard about it finally when I lied, told them I was in flare and demanded to get put through to his nurse. He got them to shuffle some appointments around and they are seeing me this Friday to discuss the changes in my medical history (kidney disease discovered 9/07) and talk about a new course of action from here forward. I'm going to talk to them about the probiotics and about trying LDN so hopefully things will go well.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 

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