Ulcerative Proctitis...other symptoms?

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ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/26/2008 2:06 PM (GMT -6)   
Hello all,
 
I'm a Boxing Day newbie!
 
Nice to have found this forum. Hope I don't ramble on too long for you folks!
 
I was diagnosed with Ulcerative Proctitis via a colonoscopy in May. The procedure was done by supposedly the #1 guy in our fair Canadian city. So I left feeling pretty comfortable that in the big picture, this was about as good a diagnosis that I could have.
 
It's been 7 months and I'm not sure that things are clearing up the way they are supposed to via the meds. I was on Pentasa and never really had much luck (I don't do a good job with suppositories!) and I was not consistent enough....I'd miss days frequently. I went back to the specialist and without examination he prescribed me Cortafoam enemas. I've been more consistent with these but I don't think things are any better.
 
Fact of the matter is it almost seems like things are getting worse. Symptoms appear to remain, some bleeding, tenesmus, etc. but I also seem to have different symptoms as well. My gut seems to be "much" noisier/busier, some stomach discomfort (nothing real painful, just annoying). 
 
Another confession I have is that I'm a real worry wart and perhaps this is affecting me as well. The internet is great because of all the info out there, (this forum for example) but it is also a place where there can be too much info at hand for people who worry like me. My wife keeps telling me it's nothing (she's not a doctor) and to get on with life instead of being down in the dumps. It's a touchy situation around here.
 
I guess the point of my post is, anybody else have continuing issues with Proctitis? Any other symptoms beside the "standard" ones? 
 
I was thinking that having a colonoscopy done tells me that there is likely nothing other than Proctitis, but as time drags on, I start to think that maybe there's more to my problem than just simple Ulcerative Proctitis. I didn't think a Colonoscopy would miss anything...
 
Cheers

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/26/2008 3:49 PM (GMT -6)   
     Hello ZLSJ and welcome.  I have ulcerative proctitis, diagnosed back in 98.  Let me start by saying your wife is wrong...this is Something...not nothing.  I feel your pain.  Right now I am in remission and enjoying every moment of it but know this is also a chronic disease and a flare could be right around the corner.
     Ulcerative Proctitis is not simple.  It is a painful and annoying condition.  I had a rough year this year.  From April through October I suffered a flare and was hospitalized for ten days in May.  I really didn't think I would EVER get off the prednisone, but finally, as of Nov. 1st, I've managed to stay off it.  The prednisone, 6MP, Colazal and Cort enemas all aided in my reaching remission.
     If you are still bleeding, having tenesmus too ask your doctor if there is more which can be done for you.  Prednisone seems to be the only med that does the trick for me.  My GI doctor hates me being on it, but life without it was of poor quality for me.
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.


quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 12/26/2008 4:03 PM (GMT -6)   
Hi..welcome to the forum!

UP isn't simple...actually, it can be more difficult to heal than when one's UC is extended farther up the colon and then heals. I've had 20 years of succuss with both oral and rectal 5ASA meds...I do use my meds faithfully, but alas...I'm a med lifer, and need them to help keep inflammation to a minimum, and  when I flare I increase the enemas to nightly and then taper to maintenance.   It's an up and down continuum,,,,
Unfortunately, life always gets in the way.

Curious...what city in canada are you?

How many times a day are you having bms?

You could ask the doctor for dicyclomine...I started at a 10mg dosage 1 - 3 times a day depending on whether I was flaring or not...that stuff has been amazing for the past 20 years.

You could change your diet somewhat to help in comfort levels....what is your diet like on a daily basis?

How many Pentasa are you on at this time?

How often do you use the cortifoam?

OK, 'nuff questions...

Welcome again,
quincy


*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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) : 12/26/2008 2:11:29 PM (GMT-7)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/26/2008 6:06 PM (GMT -6)   
I've had to be on cortifoam for as long as a yr before tappering off when things finally improved so you cannot be impatient with your meds, the worse the disease activity the longer it takes to heal it.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/26/2008 6:47 PM (GMT -6)   
Hello,

Thanks for all the responses.

I must clarify one thing though, my wife's comments about it being nothing were about my worrying that it is something more than UP. She understands my frustration with UP.

I'm from Winnipeg.

As far as my BMs go, it can be all over the place, but it is not uncommon to go 6-7 times a day and obviously with mixed results. i.e. running to get to the washroom and no results....10 minutes later back upstairs again...some results. Frustrating nonetheless, which I know you folks have all been through.

Meds...well I was only taking one Pentasa a day, and now am only taking 1 Cortafoam application a day because that is all Doc prescribed for me. I see him again on the 12th of January. Until then I sit and wait and drive my wife crazy while I worry.

Do many of you folks have stomach related symptoms or are your symptoms primarily rectum related?

Thanks again!

ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/26/2008 7:40 PM (GMT -6)   

Oh, and as far as Diet goes, I haven't modified anything as of yet, but am contemplating some changes....anyone have any suggestions as far as what I should steer clear of?

 

 


quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 12/26/2008 11:16 PM (GMT -6)   
Who is your doctor? You need only use first and last initial of the name if you're not comfortable of using the full name.

I'm from Winnipeg as well..glad you found HW.

Regarding the meds, your doc should probably have put you on the enemas or have you use the suppositories twice daily..but you mention you didn't use them regularly..you should have.

At least you're more compliant with the Cortifoam....

What is the measure/extent of the inflammation? You were diagnosed 7 months ago with not much progress....could have probably been because you didn't use the meds as required. I can understand, however, regarding the suppositories...I hate using them because they leak!

You really should be on both oral and rectal 5ASA meds..the retention enemas (Salofalk) are of a much higher dosage and work well (for me for 20 years) ....but if you're liking the Cortifoam, you should still also be on the oral med of Asacol or Pentasa...

For your stomach, you could try taking Zantac twice daily (I started out with the 75mg and then to the 150mg. You can get them at any pharmacy departments).....I used to get terrible stomach aches which were soothed by taking baking soda in water. Hmmmm...not until I had reflux induced laryngitis did I start taking Zantac. My stomach issues aren't any where as often...but I don't take the Zantac regularly..only as needed.

You should still consider taking probiotics. I really like the Natural Factors Protec. I take them at night on an empty stomach. I keep going back to them as one that totally agrees with me. I do add others, but the Protec is my staple.

Metamucil Orange Smooth is a good fibre supplement to take....I take it after supper to bulk up my stool. As well, it helps to soften a constipated stool...easier on an inflamed butt.

Regarding waiting for your doc....hang tough. You only have two more weeks..and we all know how fast that can go at the beginning of the year!
Make a list of questions and possible meds to help with discomfort...I suggest Bentylol (antispasmodic).

What does your daily diet consist of? What for breakfast/lunch/supper/snacks/drinks..etc. We can make some suggestions regarding possible comfort change.

Hope you're enjoying the weather...too bad it's snowing again!

quincy
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/27/2008 1:33 AM (GMT -6)   
     Ok...I understand now where your wife is coming from.  She probably knows that excessive worrying can contribute to your condition.  For me, it also causes an increase in blood pressure.
     I see Heather uses a fiber supplement.  Fiber is strictly a NO NO when I am flaring.  My condition worsens when I eat high fiber foods.  Best to stick to a low residue diet.  I was told to take the Cort enemas nightly and in the morning.  However, I had a problem keeping them in.  When I was hospitalized, the doctor put me on Canasa suppositiories.  They are pretty good too. At least I was able to retain them more easily.
     My ulcerative proctitis is more rectum related but my stomach does gurgle more frequently.  I had to take Nexium while on the prednisone.  Apparently, there is a chance to develop stomach ulcers while on prednisone.
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.


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/27/2008 1:50 AM (GMT -6)   
Nice to hear from a fellow Winnipegger! My doc is A.M.

I believe my inflammation was was termed as moderate, sure feels like it's moving up another level with the additional symptoms I seem to be taking on.
I've yet to take any oral medications, strictly bum medications. The Probiotics I assume can be picked up at any of our local Vitamin/Health food stores?

Right now 2 weeks seems like forever until I see the doc!

Diet wise? I am generally all over the place because I've yet to pay any attention to what I eat. That is going to have to change . I don't hold back on breads, dairy, which I understand are 2 things that could be my enemy. I do eat a fair bit of fruits and veggies. Likely don't drink enough water, but at the same time don't drink a lot of pop or anything like that.

I'm finding my first day as a member so benficial already! Thanks so much everyone.

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 12/27/2008 4:03 PM (GMT -6)   
Ah...AM has been around for a very long time. He dealt with my sister's gastro issues and now her husband's. They really like him, but neither have IBD. Theirs are upper gastro issues.

I would suggest you to eventually see one of the UC specialists, however if you're not feeling you're being cared for enough....either DD or JW (who is my doc). Please don't take pred unless you've fatigued the other options of topical orals/rectals.

Probiotics can be purchased just about anywhere...I purchase from Nutrition House...but other good places are Aviva and Vita Health.

I don't consider any food enemies...I eat fairly normally, having cake and eating it too. I do eat well balanced, I eat protein with every meal and limit my milk intake during the day. I realised eating cereal or fruit (except oranges) made for the most uncomfortable day. Once switching to an egg and toast..I could go endlessly with little discomfort.

I do drink coffee, tea sometimes, rarely soft drinks and definitely do drink water..although some days doesn't seem enough.

Remember that most of us are lactose intolerant. Save your milk product for what you want most....for me, a bowl of cereal as a snack at night causes me more discomfort than ice cream or cream in coffee. There is Lactaid milk if you're finding milk causing you discomfort.

Glad you are finding the forum helpful....

Keep us posted and make usre you use the butt meds nightly at least until you see the doc in 2 weeks (now less one day).

q


*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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) : 12/27/2008 7:08:51 PM (GMT-7)


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/28/2008 1:07 PM (GMT -6)   
I haven't heard too many bad things about AM...He likely does the most colonoscopies in the city from what I've heard. The 2 docs you mention by initials...any other hints namewise?
 
I don't know that I'm not being cared for enough...just frustrated that there doesn't appear to be any change in my condition and as mentioned previously, seems like things are getting worse.
 
Is there a specific brand/quantity of Probiotics I should be asking for?
 
Is your stomach pain more like cramping? Mine seems to be more like a nuisance than anything...just kind of gnawing, never has me doubled over or anything like that. And I never seemed to have this issue up until a week or so ago, hence my thinking that things are getting worse, perhaps turning into full blown UC. This waiting period drives me crazy! 

ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/28/2008 1:10 PM (GMT -6)   

One other thing...and sorry if it seems like a dumb question.

What "exactly" is Flaring?


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/28/2008 2:22 PM (GMT -6)   
Flaring is when there is disease activity and you're feeling the symptoms of it, urgency, D, blood, pain, ect...just know that there are varying degrees of flaring and remission is when all your symptoms are gone and you feel as good as you did before you got sick...flares and remission can last a short to medium to long time (days, weeks, months, yrs).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/28/2008 2:44 PM (GMT -6)   
Thanks for the clarification pb4. I assumed that's what it was but just wanted to confirm.

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 12/28/2008 3:49 PM (GMT -6)   
Early flaring symptoms can also be constipation, excess gas, cramping, hard stools with lots of mucus and the good old rectal pain.

It all depends on what stage of inflammation one is having and how high or limited (can mean the same thing) the extent of the inflammation.

Some patients don't have symptoms that match their degree of inflammation or activity....meaning it's subjective to the extreme.

Add IBS...it can confuse matters, especially since IBS has NO inflammation...plus certain foods can increase the discomfort or improve comfort.

Experience is definitely the teacher....unfortunately....and the healing process can be the same of early symptoms, only backwards.

Say what??? lol!


Oh...my doc is in the WC. The other is in St.B in a gastro "group".

Are you still using the cortifoam nightly? There are many GIs who do the c-scopes, but AM does both upper and lower GI/gallbladder/liver scopes where some don't. I also think he does surgery..I must check with my sister who did hers. He's definitely a busy man, but with a good reputation.

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/29/2008 11:22 AM (GMT -6)   
I am going back to AM on the 12th and I'll see what results I get out of our discussion. The last follow-up I had with him did not have me feeling "warm and fuzzy" but I will give him the benefit of the doubt because I felt his caring/nurturing nature that many of his patients rave about on my previous 2 visits. (both colonoscopies) My last visit was on a Friday afternoon @ 5:30pm so he likely just wanted to get out the door. I told him my symptoms hadn't really changed through the use of the Pentasa and that's when he prescribed the Cortifoam and the discussion didn't go too far from that.
 
I have to confess some stupidity on my part which is likely why I continue to have issues.
The little Cortifoam container is supposed to be good for 14 or so applications from what I've read. Well I've gotten much more out of it and just the other day realized why. The plunger/applicator has a fill line on it. I push the blue plunger down to that point and just the other day realized that I've never/ever filled the applicator to that point!! I've always just filled it to the top of the piece that you insert in your bum. So the likely reason I'm seeing no change and experiencing what I feel are worse symptoms is that I haven't been giving myself even a fraction of the dosage of Cortifoam that I'm supposed to be getting. I'm hoping that perhaps the reason for my extended "flaring" is only my stupidity.
 
I'm still curious as to why I seem to be having more stomach related pains than I ever had previously, though I think I'm more cognizant of the stomach issues because the bum issues continue to haunt me. 

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 12/29/2008 3:51 PM (GMT -6)   
Interesting observation regarding the dosaging...eventually we, as patients, read the instructions..lol!
I won't comment that it could be a man thing from what I hear regarding some friends' husbands and my own on occasion..that would be sexist on my part.

I used proctofoam (or corti/colifoam once, can't remember) 19 years ago..don't remember much except that it did help. I like the idea of foam, wish the 5ASA meds came in foam on this side of the ocean.

Regarding the stomach issues....it was confusing to me as well when I was getting those very symptoms when I was improving after the 20 times a day explosive bloody diarrhea. My doc explained that lower in the colon inflammation seemed to have more stomach symptoms. Could be the spasming, more gas, messages to the rectum/from the rectum compared to the quicker emptying of the colon if inflammation is higher..etc.

Bentylol helped amazingly....and if reflux is an issue, which could very well be for you (as is for me), purchase Zantac 150mg and use it (as directed ;-)
If it helps, it's reflux or excess acid.

Well, even my doc would be in a bit of a state Friday at 5:30....he's on the reserved side anyway, but it seems he's more jocular with males than females.

I have to share that when my BIL was having lots of gut issues, I suggested he see my doc and push for a c-scope. When he went for the appointment, my doc looked at him and asked "and you two get along well?"
LOL!

What time do you see AM on the 12th? Hope he'll still be warm and fuzzy after the holiday season.. Do make a list of a few things to make the appointment more efficient.

Hang tough..do consider the Zantac...without the feelings of stomach discomfort, comes a more calm mind.

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 12/29/2008 5:09 PM (GMT -6)   
Too funny...but honestly I did read the directions!! Something just did not "click in" with respect to the Fill Line.
 
Not that the UP is nothing to be concerned about, I'm just hoping that it doesn't escalate to something else. Hence my concern about newly appearing stomach pains.
 
I did purchase the 75mg Zantac and it seemed to simmer things down a bit, but have only taken 2  so far.
 
Yeh the Friday @ 5:30 wasn't going to grab me a lot of attention. Unfortunately I have another 5:30, but it's on a Monday.  The list is a great idea, because without fail, I will forget something.
 
Thanks for the Cheer!

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 12/29/2008 7:36 PM (GMT -6)   
Glad to hear the Zantac is helping. My GP is the one who put me on them, and suggested that after the pack is finished to get the 150mg and use them.

As your flare improves, so should your stomach discomfort....unless there is something else going on, which is always possible,,oops, don't want you to worry, but at least you're in with a doc who does those tests..

Don't forget to write down to ask for a copy of c-scope report. It'll be good for you to know what was written even for research to understand how they're graded, etc.

Has he done any blood tests for you? Good to get copies of those too.

Hope you improve daily..keep us updated.
q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 12/29/2008 8:12 PM (GMT -6)   
Welcome.....

Have you noticed you get tummy gurgles after eating yeast products? I eventually made that connection and realized I have an intolerance to yeast products...breads, sauces, crackers, pretzels, soups...and the list goes on. A lot of processed foods have some form of yeast extract. For me, after 8 years of UC (started as proctitis), it was a diet/lifestyle change that helped me get well again, now no symptoms or meds. I experimented with an antifungal diet after learning UC symptoms can have a fungal etiology. It is pretty well eating only whole, natural unprocessed foods like veggies, meat/fish/poultry, berries, green apples, nuts (no peanuts) and limited dairy such as butter and plain yogurt. No grains or sugar. I also took natural antifungals like olive leaf extract and caprylic acid. Don't think the diet alone would have made a difference, at least not with the great results I had.
I now eat everything I used to eat before I got UC symptoms, but in moderation. I still limit yeast foods and sugar. Actually, not a bad thing, as I feel so much better overall.

So, if you have a week or two to spare, maybe try something like that to see if you find improvement in your symptoms. Others on this forum have contacted me to say they have tried this and their symptoms improved and/or disappeared. It is a lifestyle change. There are no guarantees, that's for sure, as everyone is different with varying degrees of symptoms. Just something to consider, I guess............

All here have given you good information and advice. I am blessed each time I visit here :)

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/29/2008 9:29 PM (GMT -6)   
kim123

your story is amazing : )

what does your GI doc say about your recovery?

pb4, how many times per week were you using the cortifoam when flarring?

zlsj, i'm a worrier too...try to distract yourself when not feeling well...it really helps
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 12/29/2008 10:18 PM (GMT -6)   
bbc,

First, he chastised me for weaning myself off my meds (he was the professional after-all, with the degree hanging on the wall!), and told me my results were all coincidental. He had never heard of such a thing before (even though he kept taking random private notes from time to time about what the diet entailed)...... He told me I would need to be on the meds (colozal, rowasa and one other I have forgotten) regularly for at least another 6 months and then, "maybe" we could discuss weaning off them, but I would probably need maintenance drugs the rest of my life. (My previous scope had shown my colon to look like raw, ground beef). And, on the way out the door, he handed me more prescriptions to have filled. Oh bother.........

I was due to come back for a follow-up 3 months after that, but as fate would have it, his office had to cancel the appt., and I never bothered to re-book. I didn't feel like paying another co-pay for nothing. That was 3 years ago. Since then I have started taking beta-glucan (an immune booster) as well as Primadophilus Reuteri probiotics (thanks pb4!), and have never looked back. So far, so good. I still eat carefully. I know for me, my UC symptoms were fungus related. As grains (including corn) and peanuts are commonly contaminated with mycotoxins, and fungus loves and craves the grains and sugar to feed and grow, I try to limit them.

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 12/30/2008 2:27 AM (GMT -6)   
Hi Kim..nice to see you. What brand of beta glucan do you use and how much do you take. Some interesting info out there, considering once again to add it to my supplements considering the 3 colds I've had as of late. Also wanting to get my husband on it.

Sorry for the slightly off-topic posting, but maybe others will find it helpful regardless.

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 12/30/2008 9:30 AM (GMT -6)   
ZLSJ - My UC started with Proctitis and got progressively worse over the next several months.  When I had a second colonoscopy (9 months after my first colonoscopy and diagnosis), it revealed that the inflammation had spread.  I now have Pancolitis which affects the entire colon.  If you don't feel like your meds are helping and that you're, in fact, getting worse, it would be worth the effort to ask for another colonoscopy in the next few months.  I hope that's not the case and that you just needs some stronger meds, but its something to consider.  I hope you see improvement soon.

Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/sunflower diet, Acidophilus with every meal, Zoloft 25 MG daily (tapering off).
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron.
Status:  Near total remission
 
 
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/30/2008 10:35 AM (GMT -6)   
kim123,

Were you bleeding etc when you went off the meds and how long after you stopped the sugars/yeast did it take for you to stop bleeding etc? I just started Primadophilus Reuteri yesterday.

tnx


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

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