too many bm's again

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lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/22/2008 10:43 PM (GMT -6)   
Just when I thought I was doing so good I'm right back to square number one.  I went three months without a flare.  That's the longest I've gone.  Now I'm back to the cramps all day and 10 to 12 bms a day.  It's not D, I just go a little a lot of times.  I'm on Asacol.  I don't know if I should start on my Entocort.  I usually go on the entocort and canasa when I get bloody D.  This is not bloody. Sometimes I think I'm not on the right meds.  Maybe something else would work better.  Doc is on vacation until the 9th of June when I have an appointment.  I feel so tired all the time.  I just want to feel good.  I started taking Nexium for ulcers in stomach and small intestines a couple of weeks ago.  I was wondering if maybe the Nexium is bothering my colon problems.  The last time I saw my doc he told me that we just have to find the right meds.  My husband is very supportive but even he is saying that maybe we should see another doc.  I would love to see a group of doctors that specialize in this.  Anyone know of any place in Central Florida.  Thanks for your support.   
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


quincy
Elite Member


Date Joined May 2003
Total Posts : 30676
   Posted 5/23/2008 2:06 AM (GMT -6)   
Hi lenie...are you not using the Canasa?

If not...start very soon. You're flaring, and do not wait until you bleed. I don't bleed with flares because I treat very, very early symptoms.

Can you use the enemas? I'm sure I asked you this before.

The Nexium could probably give you some gastro symptoms but not how you describe...sounds still rectal to me.

Can't help with the doc choices, however.

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 !!!


GangGreen
Regular Member


Date Joined Apr 2008
Total Posts : 44
   Posted 5/23/2008 2:07 AM (GMT -6)   

I, like you, used to use the Canasa only when flaring or feeling close to a flare.  I decided after my last flare about a year ago to use it every night.  I've been fine since.  I have little or no trouble keeping it in all night comfortably so it doesn't affect me sleeping.

Canasa, at least for me, also has the added benefit of also being a good warning sign for me.  Usually I expel it first thing in the morning and it's the same color as it went in.  But if I felt a little bit off the day before or ate something I shouldn't have, it comes out a kind of blackish-purple as if something was amiss and it was doing its job.  Then I take it really light on the food and it seems to heal everything quickly.

Anyhow, while getting to a doctor is always a good idea, you might want to use the Canasa nightly no matter what, especially if is doesn't give you diarrhea in and of itself.  This is especially important because you're not bleeding yet and you can cut it off at the pass.

Good luck and FEEL BETTER!!! :-)


dx UC Dec. 2001
currently in remission
 
Meds: asacol 6(400mg)/day
         entocort 3(3mg)/day
         canasa 1(1000mg)/day
         looking into probiotics
 


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/23/2008 3:07 PM (GMT -6)   
Thanks guys for your replies...I know now that I'm making a mistake not jumping on the Canasa right away. I tend to wait until I see blood so I think then this is really a flare. I will start using them tonight. quincy, you asked about enemas. My doc never prescribed or spoke of them. It's nice that GangGreen has been doing good for the past year using the Canasa. Maybe it will do the same for me. Thanks for your support. I really appreciate you being out there.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/23/2008 3:41 PM (GMT -6)   
You might also try supplementing with l-glutamine to reduce the number of bathroom trips and help your colon heal.

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.
 
 


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/23/2008 8:10 PM (GMT -6)   
I'll have to read up on this l-glutamine. I take a one a day vitamin and an extra vitqmin D because blood work showed D was too low. I noticed that a few people take aloe vera also. I'll have to look into that too. I read a couple of days ago about spinach working wonders for someone. I love spinach. I should give that a try. Can't hurt and maybe will help. Thanks for your support.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/23/2008 10:09 PM (GMT -6)   
Be careful with Aloe Vera. It can cause diarrhea for some, it did for me. When I was on Asacol, when I would stary flaring, I increased my doseage to up to 12 pills a day... I don't recommend anyone do this without asking their doctor first. I agree with using the rectal meds, whichever one works for you. I hope you feel better soon.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/23/2008 10:34 PM (GMT -6)   
Thanks for the info on the aloe vera. Diarrhea is not on my wish list. That's the last thing I need. I'm getting on the Canasa tonight. I just have to learn to use these meds better. I wait too long before I start them. I'm a slow learner but I'm getting there. You have all been so much help to me. Thank you!
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/23/2008 11:08 PM (GMT -6)   
Are you close to Jacksonville? If you are, you should look into the Mayo Clinic. I would love to go there but it's just too far:

http://www.mayoclinic.org/jacksonville/

They have GI specialists out there and from what I understand the doctors at Mayo are usually the best of the best.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30676
   Posted 5/24/2008 1:08 AM (GMT -6)   
lenie...it takes us all some time to "get with the program"....but it's important to use the meds if you can without any side effects. Not wanting to use them isn't a side effect...lol!

The pay-off of compliance is for the rest of your life...you won't just have one flare or two..

Remember, you can use the Canasa up to 3 times a day. REgarding the retention enemas....some doctors don't suggest them based on a variety of reasons possibly because they don't think the patients will use them as reliably as the supps.
There's not as much med in the suppositories, that's possibly why the suggestion (as per the med dosaging) to use them more often during the day and at night before bed.

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 !!!

Post Edited (quincy) : 5/24/2008 7:50:14 PM (GMT-6)


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/24/2008 5:04 PM (GMT -6)   
Regarding the Mayo Clinic..I live about 4 hours from there. My husband keeps telling me I ought to go there. A friend of mine went there with medical problems and she was so pleased. They scheduled 3 different dr. appts for her. She did have to stay over one night in a motel right there. But all her test results were back in an hour. When I have a test done with my doc. I have to wait a week for results. It's something I'm thinking seriously about now. Meanwhile I have to get my husband through prostate cancer first. I'll keep taking my meds. Quincy always puts me on the right road with my meds. My doc never told me I could use the Canasa more than once. I'm getting with the program quincy. I learn so much from this site. Love you guys.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


quincy
Elite Member


Date Joined May 2003
Total Posts : 30676
   Posted 5/24/2008 8:54 PM (GMT -6)   
lenie...is there a med info insert with the Canasa? It does state on the searched info on dosaging that it can be used 3x daily.

Consider that the enema is either 2g or 4g, the Canasa is 1g..no reason why it can't be used more often.
But they do leak in kind of an oily mess if I have any gas, so I'd much prefer to use the enema at night.

I think going to the Mayo will be beneficial for you.

Hope your husband's treatment goes well.

Keep us posted.
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 !!!


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/24/2008 9:36 PM (GMT -6)   
hi quincy...just finished reading the dosage info on the insert. Never seen anything printed so small, had to get a magnifying glass. It's saying one at bedtime. But I understand what you're saying, it makes sense. I got to tell you something real interesting. My colon problems started after I got salmonella. So I'm always searching and reading up on anything about foodborne illness. I found this organization called S.T.O.P. (Safe Table Our Priority). They said to email them if you ever had a foodborne illness, so I did. They phoned me and said I would be a perfect candidate to write my story. They want to put it in our local paper or magazine. They asked that I write to Congress and ask that that they become leaders on food safety issues. Sounds like a good idea. I complain alot about my illness and this gives me a chance to do something about it. Maybe it will help someone else. Just thought I'd share that with you. Thanks quincy.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/24/2008 9:40 PM (GMT -6)   
quincy....Husband goes for his biopsy results this coming Wednesday. He had a biopsy before but this was a 3-d biopsy. Hopefully they do the surgery soon after that, he wants to get this behind him. He thanks you for your get well wishes.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 5/25/2008 12:27 PM (GMT -6)   
lenie,

Just a suggestion...try cutting out all sugars (sodas, cakes, biscuits, milk, etc.) and see if there's an improvement after a week. Some benefit from doing this, some don't.

ps.
also cut back on breads and starches.

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 : 30676
   Posted 5/25/2008 3:08 PM (GMT -6)   
You're welcome! I truly hope all goes well.

Didn't realise your husband had a 3-D biopsy...will have to look that up.
Does treatment hinge on the specific results?

I guess the biopsies are easier to have done than the treatment. How long does one usually have to wait for treatment?


Wow Arlene, you'll be a celebrity!!! From what exactly did you get salmonella?

It's difficult for most of us to remember the initial trigger of UC....I thought mine was food poisoning after I ate raw egg batter (habit I used to have) a few years before the bleeding started and then was diagnosed. I think if my doctor had taken stool samples, at least I would have known if it was something that could have been treated at that point. Not that it wouldn't have triggered UC anyway.

It's good to have the opportunity to have a voice, isn't it?

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 !!!


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/25/2008 6:44 PM (GMT -6)   
quincy...I got my salmonella from eggs at a local restaurant. Had D, fever, vomiting, real bad for 2 days, so sick had to call ambulance. Hospital gave me so much antibiotic that I then developed c-diff. From c-diff I got IBS and then colitis and then UC. The latest are the ulcers in my small intestines and stomach. Doc says ulcers are the result of UC. This all started on June 9, 2005. I'm coming up on my anniversary of 3 years. I haven't burned down the restaurant YET!!

Kevin came through his biopsies real well. We know that one side of gland has to be frozen and we're hoping other side isn't so bad that the doc can spare the nerve. It all depends on the results we get on Wed. We're hoping for the cryosurgery soon after we see doc.

We usually go up to the north east for about 6 weeks to get out of Florida heat for a little while. We're both trying to get to feeling good so we can do that.

NBT mentioned cutting back on sugars and starch. I don't drink sodas, but I do enjoy a glass of milk and a couple of cookies. I do have a sweet tooth. I did stop eating the Hershey bars. Spagetti is another thing I enjoy. Dang !! all the good stuff might not be so good. Since I've lost weight I'm always looking for foods to put it back on and the pasta I thought was a good thing. You're taking all the fun out of eating. One never knows what will help unless you try it. Thanks for the info.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 5/30/2008 9:13 PM (GMT -6)   
omg i think.. haha. I have a hemmroid and my GI gave me these suppositories. I was thinking it was just for the hemmie.. so I quit taking it after a few times.... I think I just found out that's actually Canasa!!! noooooo way have I had that all this time.. I'm gonna start taking it again.. specially cuz I think I'm flaring.
Kara, 20
Diagnosed with Ulcerative Colitis March, 07
-Left sided all the way up
-Was on Colazal..it didn't do anything for me. Had horrible flare up...been on lialda and pred since. Seems to be working!
Medications: Colazal 3 pills 3x a day
                   Prednisone
                  Lialda - 2 pills in the morning w/ food. Proctofoam once before bed


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/31/2008 3:26 PM (GMT -6)   
sweetmelody...I found the Canasa really works well for me in a flare.  quincy will let you know how important it is to take the meds and more important is how to taper. 
 
quincy...Hubby has cryrosurgery this Tuesday.  That 3-D biopsy showed cancer just on one side.  That was great news. I'll let you know how it goes.  I'm still crampy, havings about 4 bm's a day but it's not D. but find myself with nausea.  But I can live with this as long as it's not D.  Hope this finds you well. 
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


quincy
Elite Member


Date Joined May 2003
Total Posts : 30676
   Posted 5/31/2008 4:55 PM (GMT -6)   
sweetmelody...definitely start taking them and taper once you're "normal"..go every second night for a few weeks, then every third night..etc.
It'll help you find a maintenance dosage.



Arlene..Happy to hear that the cancer is only on one side and that the cryosurgery is the method chosen. Seems treatment has improved immensely in the years for prostate. Healing thoughts sent his way!

As for how you're feeling, call the doc and ask for a 'script for dicyclomine. I started out with 10mg for over 15 years, and it helped immensely for the stomach/gut cramping and nausea...well, it took the edge off which is at least helpful. Lower in the rectum can cause such symptoms. How often are you on the Canasa? Sounds as though you are improving...plus I'm sure the worry of your husband's pending surgery is a factor.
Do you find you're more hungry when you're nauseated? I am, in an effort to stop the feeling...works for a while.

I'm doing well...have the week off which is great after a very busy stint of clients (mobile hairdresser).
The weather is kind of cloudy, muggy and balmy...ugh...low pressure and I loathe it..lol! I'm in for the day anyway, so no matter. Hoping for an improvement by tomorrow.

Hope you feel better soon,
quincy xx
*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 !!!


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 5/31/2008 7:12 PM (GMT -6)   
quincy...Boy you hit the nail on the head when you asked if I felt hungry when I was nauseated. It's starts about 3 PM. I feel hungry, nauseated and my abdomen feels sore. Not crampy, just a constant soreness. I even starting eating crackers after lunch to see if that would head it off..but no, that doesn't work. I go back to the doc a week from Monday, he's on vacation now. I'll ask him about the dicyclomine. Right now I'm on just a Asacol. If I wasn't hurting, I'd consider myself doing pretty good. Hope you enjoy your week off. Weather here is HOT, 94 degrees today. We need rain sooooo bad. The small ponds in my area are all dried up. I feel sorry for the fish. You enjoy your time off. Put up your feet and relax and stay well.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety
Nexium


quincy
Elite Member


Date Joined May 2003
Total Posts : 30676
   Posted 5/31/2008 10:49 PM (GMT -6)   
Hi...were you not doing well on the Canasa? I would suggest you take them asap...that advice gets stale I know...;-)

When do you take the nexium...for some it can cause discomfort, maybe you could consider another? You have a lot going on, difficult to pinpoint one cause. Oh, were you tested for h.pylori?

I'd die in 94F...ugh...I love winter, haha..but we've had a great spring this year. I don't mind a non-humid summer, even if it did get up to 94F.

You could call your doc's office and see if there is another doc taking some of his calls...maybe he/she'd prescribe dicyclomine.

Hope you get some rain...poor fishies!

Looking forward to the week actually.

Keep me posted as to how you and your husband are doing (after the surgery).

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 !!!

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