My doc questions my need to hold on to enemas in my treatment. He's gotten me to go down to once every three nights. I was happy at every other night.
He doesn't know why someone would tolerate sticking something up their butt if they didn't have to all that much.
Ellen
In remission! diagnosed pancolitis mild to mod 9/19/09. Now have to take 7.5 mg. prednisone and 2 mg alternating, indefinitely because of loss of adrenal function due to being on pred the past 7 of 9 months)
12 400 mg. Asacol daily, 1000 mg. Canasa daily
Rowesa enemas every third night, 1 tbs. psyllium husk powder daily, Mutaflor probiotic
multi-vitamin; calcium plus D, Biotin, turmeric. Eliminated dairy, caffeine, alcohol, fried, greasy, citrus and artificial sweeteners. For sleeping, Melatonin 4 mg, Zinc Magnesium and B6 compound- 2 cap and Zyprexa. (.25 to .5 mg Klonopin if all fails).
For insufficient adrenal function, vitamins C, B6,B Complex, pantothesic acid and vitamin e
I would love to stop using all types of medications but I am like you, if it's not hurting, what's the big deal? I feel like it is usually helpful to continue using rectal meds even if I am doing well. When I was in a year remission, I continued to use Canasa every other night just to keep things at bay. I am not sure if it was necessary but it mentally made me feel better.
March 07: DIagnosed with Mild Proctitis - Canasa as needed.
March 07: DIagnosed with Mild Proctitis - Canasa as needed.
August 08 - December 08: FLARE & Anemic - Started Asacol!!
January 09 - December 09: REMISSION!! Asacol (9) + Canasa 1g AM/PM
January 09 - December 09: REMISSION!! Asacol (9) + Canasa 1g AM/PM
December 09 - January 10: FLARE!! Asacol + Prednisone + Canasa
February 10 - April 10: Colazal + Prednisone + Canasa
May 10 - June 10: Lialda + Cort Enema + Prednisone
Current: Mild / Moderate Active Pancolitis: Prednisone, 6mp, Canasa, klonopin
Current: Mild / Moderate Active Pancolitis: Prednisone, 6mp, Canasa, klonopin
Ask him if he takes the scenic route everywhere he goes?
Proctitis DX 1999, Pancolitis DX 2008
Remicade, Sulfasalazine 3g/day, Rear meds as needed
Psyllium (palm full twice daily)
Probiotis/VitD3 5000IU+Ca/1000mg DHA
Proctitis DX 1999, Pancolitis DX 2008
Remicade, Sulfasalazine 3g/day, Rear meds as needed
Psyllium (palm full twice daily)
Probiotis/VitD3 5000IU+Ca/1000mg DHA
hahhaahhaahahah
Ellen
In remission! diagnosed pancolitis mild to mod 9/19/09. Now have to take 7.5 mg. prednisone and 2 mg alternating, indefinitely because of loss of adrenal function due to being on pred the past 7 of 9 months)
12 400 mg. Asacol daily, 1000 mg. Canasa daily
Rowesa enemas every third night, 1 tbs. psyllium husk powder daily, Mutaflor probiotic
multi-vitamin; calcium plus D, Biotin, turmeric. Eliminated dairy, caffeine, alcohol, fried, greasy, citrus and artificial sweeteners. For sleeping, Melatonin 4 mg, Zinc Magnesium and B6 compound- 2 cap and Zyprexa. (.25 to .5 mg Klonopin if all fails).
For insufficient adrenal function, vitamins C, B6,B Complex, pantothesic acid and vitamin e
Ellen
In remission! diagnosed pancolitis mild to mod 9/19/09. Now have to take 7.5 mg. prednisone and 2 mg alternating, indefinitely because of loss of adrenal function due to being on pred the past 7 of 9 months)
12 400 mg. Asacol daily, 1000 mg. Canasa daily
Rowesa enemas every third night, 1 tbs. psyllium husk powder daily, Mutaflor probiotic
multi-vitamin; calcium plus D, Biotin, turmeric. Eliminated dairy, caffeine, alcohol, fried, greasy, citrus and artificial sweeteners. For sleeping, Melatonin 4 mg, Zinc Magnesium and B6 compound- 2 cap and Zyprexa. (.25 to .5 mg Klonopin if all fails).
For insufficient adrenal function, vitamins C, B6,B Complex, pantothesic acid and vitamin e
I'm at once every other night. I don't want to go down to once every three nights.
Notsosickly is right, I feel more comfortable on the "on" days as opposed to the "off." It's good for peace of mind.
Notsosickly is right, I feel more comfortable on the "on" days as opposed to the "off." It's good for peace of mind.
I don't get the doctors comment. Enemas are really not a big deal to me.
The issue I see is one of safety in using high dosages of a drug and unintended consequences of long term use. Most mesalamine drugs have only been tested short term(8-10 weeks or less). The long term studies are only out to one year. Lower level oral and I believe Canasa have been tested long term. I haven't found a clinical trial combining enemas, suppositories and pills. Basically you counting on any adverse problem such as increased heart disease, cancer etc being noticed by doctors prescribing these off label regiments or a study of patient records after the fact. It is possible that long term use builds resistance to the drugs effect and higher dosages do this faster.
There are a lot of much more commonly used drugs that years down the road were discovered to cause or greatly increase risk of disease. Prilosec, ibuprofen, vioxx ....were all considered fairly safe drugs.
Basically you really don't know the real benefits or risks...so probably a good idea to use the least amount of drug possible. Life is great as a test monkey
Diagnosed with proctosigmoiditis as my 50th birthday present Dec 2009
4.8 grams Asacol HD plus 1000mg canasa daily for 8 weeks
Now on 1.6 gr Asacol HD daily,fish oil, homemade yogurt, pscillium husk,glucosamine sulfate,turmeric and Mutaflor(e. coli nissle).
Will begin fazing in boswellia,s. boulardii, and bromelain for both UC and/or back/joint inflammation soon.
The issue I see is one of safety in using high dosages of a drug and unintended consequences of long term use. Most mesalamine drugs have only been tested short term(8-10 weeks or less). The long term studies are only out to one year. Lower level oral and I believe Canasa have been tested long term. I haven't found a clinical trial combining enemas, suppositories and pills. Basically you counting on any adverse problem such as increased heart disease, cancer etc being noticed by doctors prescribing these off label regiments or a study of patient records after the fact. It is possible that long term use builds resistance to the drugs effect and higher dosages do this faster.
There are a lot of much more commonly used drugs that years down the road were discovered to cause or greatly increase risk of disease. Prilosec, ibuprofen, vioxx ....were all considered fairly safe drugs.
Basically you really don't know the real benefits or risks...so probably a good idea to use the least amount of drug possible. Life is great as a test monkey
Diagnosed with proctosigmoiditis as my 50th birthday present Dec 2009
4.8 grams Asacol HD plus 1000mg canasa daily for 8 weeks
Now on 1.6 gr Asacol HD daily,fish oil, homemade yogurt, pscillium husk,glucosamine sulfate,turmeric and Mutaflor(e. coli nissle).
Will begin fazing in boswellia,s. boulardii, and bromelain for both UC and/or back/joint inflammation soon.
journey2health said...
My doc questions my need to hold on to enemas in my treatment.
My doc questions my need to hold on to enemas in my treatment.
I would question your doctor's competence. Maybe the doctor should have a couple of flares and then decide what they are willing to do. There are plenty of studies that demonstrate the efficacy of doing maintenance enemas.
Here is a fragment from the article "Crohn’s and Colitis: Treatment of 5-ASA Responders And Nonresponders" by ELLEN J. SCHERL, MD:
Scherl said...
Because of the predominance of left-sided disease, the combination of oral and topical aminosalicylates is critical in inducing and maintaining remission. Safdi et al elegantly demonstrated that although topical mesalamine was more effective than oral in left-sided UC, the combination of 2.4 g of oral mesalamine and mesalamine enemas produced earlier and more complete cessation of rectal bleeding. For maintenance of remission for patients with UC, D’Albasio et al found that the combination of 1.6 g of oral mesalamine with twice-weekly mesalamine enemas was superior to oral therapy alone (61% vs 31%, respectively). Topical mesalamine (enemas and suppositories), used as infrequently as twice per week, is effective in maintaining remission in patients with distal colitis.
In another study, Biddle et al established that 75% (9 of 12) of patients randomized to receive mesalamine enemas remained in remission at 1 year, whereas 85% (11 of 13) of patients on placebo had relapsed by 16 weeks. Similarly, mesalamine suppositories maintained long-term remission in patients with ulcerative proctitis. By 12 and 24 months, respectively, 86% and 89% of placebo-treated patients had relapsed, compared with 32% and 46% of patients treated with mesalamine suppositories. A meta-analysis established that in patients with left-sided UC and ulcerative proctitis, topical mesalamine showed greater efficacy and fewer side effects than oral therapies and topical steroids.
Because of the predominance of left-sided disease, the combination of oral and topical aminosalicylates is critical in inducing and maintaining remission. Safdi et al elegantly demonstrated that although topical mesalamine was more effective than oral in left-sided UC, the combination of 2.4 g of oral mesalamine and mesalamine enemas produced earlier and more complete cessation of rectal bleeding. For maintenance of remission for patients with UC, D’Albasio et al found that the combination of 1.6 g of oral mesalamine with twice-weekly mesalamine enemas was superior to oral therapy alone (61% vs 31%, respectively). Topical mesalamine (enemas and suppositories), used as infrequently as twice per week, is effective in maintaining remission in patients with distal colitis.
In another study, Biddle et al established that 75% (9 of 12) of patients randomized to receive mesalamine enemas remained in remission at 1 year, whereas 85% (11 of 13) of patients on placebo had relapsed by 16 weeks. Similarly, mesalamine suppositories maintained long-term remission in patients with ulcerative proctitis. By 12 and 24 months, respectively, 86% and 89% of placebo-treated patients had relapsed, compared with 32% and 46% of patients treated with mesalamine suppositories. A meta-analysis established that in patients with left-sided UC and ulcerative proctitis, topical mesalamine showed greater efficacy and fewer side effects than oral therapies and topical steroids.
44 - male - Diagnosed with pancolitis in 1998
Status: Remission since December 2009
Vitamin D3 - 10000 IU three times per week (Status: 49 ng/ML);
Psyllium Seed Powder (2 teaspoons) - twice per day;
Asacol - 2 400mg pills 3 times per day; Mesalamine Enema with 4000 IU Vitamin E - twice per week
FUnny you brought this up, I have been using the enemas nightly for 3 months and I Was starting to question this myself and so was my doc..he said the other day it was a "waste" for me to be using all these rectal meds as when it took a look inside the rectum looked normal ..I am flaring now somewhere above the rectum not exactly sure where so Im scared to stop them..I will probably continue until this flare is over at nightly before I go to every other night..
28 yr old female
28 yr old female
Pancolitis since Aug 2006
Pentasa 500mg tablets 12 per day
Salofalk 4g Enemas nightly, started March 9/2010, Salofalk suppositories in the mornings , started May 5 2010
Current Status: FLARE
FUnny you brought this up, I have been using the enemas nightly for 3 months and I Was starting to question this myself and so was my doc..he said the other day it was a "waste" for me to be using all these rectal meds as when it took a look inside the rectum looked normal ..I am flaring now somewhere above the rectum not exactly sure where so Im scared to stop them..I will probably continue until this flare is over at nightly before I go to every other night..
28 yr old female
28 yr old female
Pancolitis since Aug 2006
Pentasa 500mg tablets 12 per day
Salofalk 4g Enemas nightly, started March 9/2010, Salofalk suppositories in the mornings , started May 5 2010
Current Status: FLARE
I did them nightly for right at five months, then two nights out of three for a few weeks before every other night where I am now...
I'm not surprised.....but, my reading experience here has me believing that some UCers just want to hurry it up and have NO symptoms. The doctors also want patients to have no symptoms, but with the prednisone withdrawl, they'll certainly give all the empathy in the world and deal with that for even YEARS??? I don't get it.... Not that pred doesn't have its place....I still say, please know what you ask for. The patience part is very subjective. I also think some GI doctors are butt-phobic, which is weird.
I'd take the slow healing of the 5ASA meds over the pred anyday....UC is lifelong, and then emotional trauma hits and our colons are out of control, it's easier to deal with the most tangible than the emotions. They take a long time to heal....no meds for that.
q
I'd take the slow healing of the 5ASA meds over the pred anyday....UC is lifelong, and then emotional trauma hits and our colons are out of control, it's easier to deal with the most tangible than the emotions. They take a long time to heal....no meds for that.
q
Seems like a weird thing for your doctor to say. If you are willing to take them, then what's the problem? It's not like he has to take them for them to work for you.
Female, 43, Vancouver BC
Female, 43, Vancouver BC
DX: UC (Pancolitis) as of Jan2009. Symptoms first began June2008. Currently in remission.
Current Meds: None
Previous Meds:
-Asacol 800 mg (1 pill x 4 daily), Jan-Mar2009
-Ferrous sulfate, Jan2009-Apr2010
Supplements: Probiotic, cod liver oil, Multi-vitamins, Calcium-Magnesium
Quincy,
Not sure what the first part of your post having to do with prednisone is referring to. Is it my other issue. That I can't get off prednisone because my adrenal gland is insufficient?
Ellen
In remission! diagnosed pancolitis mild to mod 9/19/09. Now have to take 7.5 mg. prednisone and 2 mg alternating, indefinitely because of loss of adrenal function due to being on pred the past 7 of 9 months)
12 400 mg. Asacol daily, 1000 mg. Canasa daily
Rowesa enemas every third night, 1 tbs. psyllium husk powder daily, Mutaflor probiotic
multi-vitamin; calcium plus D, Biotin, turmeric. Eliminated dairy, caffeine, alcohol, fried, greasy, citrus and artificial sweeteners. For sleeping, Melatonin 4 mg, Zinc Magnesium and B6 compound- 2 cap and Zyprexa. (.25 to .5 mg Klonopin if all fails).
For insufficient adrenal function, vitamins C, B6,B Complex, pantothesic acid and vitamin e
Not sure what the first part of your post having to do with prednisone is referring to. Is it my other issue. That I can't get off prednisone because my adrenal gland is insufficient?
Ellen
In remission! diagnosed pancolitis mild to mod 9/19/09. Now have to take 7.5 mg. prednisone and 2 mg alternating, indefinitely because of loss of adrenal function due to being on pred the past 7 of 9 months)
12 400 mg. Asacol daily, 1000 mg. Canasa daily
Rowesa enemas every third night, 1 tbs. psyllium husk powder daily, Mutaflor probiotic
multi-vitamin; calcium plus D, Biotin, turmeric. Eliminated dairy, caffeine, alcohol, fried, greasy, citrus and artificial sweeteners. For sleeping, Melatonin 4 mg, Zinc Magnesium and B6 compound- 2 cap and Zyprexa. (.25 to .5 mg Klonopin if all fails).
For insufficient adrenal function, vitamins C, B6,B Complex, pantothesic acid and vitamin e
Quincy, since these seem to be your "thing" (sorry, haha, I think it's great you are so knowledgeable), is this something I should ask for? I assume they're still used for Crohn's, right? With My old diagnosis of supposedly UC, I did not have inflammation in the rectum area, so I was not offered any rectal meds. Now my pouch is affected and probably in the rectum, too. Should they be used even if I am on entocort?
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease
Lomotil 2 Tsp. (4/day), Flaygl 500 mg (2/day), TPN 14 hrs/day, IV fluids 4 hrs/day, Prednisone 5 mg (1/day), Florinef .05mg (1/day), Culturelle (1/day), Entocort 3 mg (3/day)
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease
Lomotil 2 Tsp. (4/day), Flaygl 500 mg (2/day), TPN 14 hrs/day, IV fluids 4 hrs/day, Prednisone 5 mg (1/day), Florinef .05mg (1/day), Culturelle (1/day), Entocort 3 mg (3/day)
It's an option Pam....maybe worth trying now? or at the very least suppositories maybe twice a day.
There are hydrocortisone supps as well as 5ASA...definitely something to discuss with the doc. Will you be having Humira soon?
q
There are hydrocortisone supps as well as 5ASA...definitely something to discuss with the doc. Will you be having Humira soon?
q
They are keeping me here on the IV hydrocortisone throughout the weekend and then want me to see my GI to see what he wants to do, but he had already said Humira is the next option and the GIs here agree. I have a call into my GI and they will call me back today to schedule an appointment for probably next week. His secretary said his note mentioned Humira, so, yes it sounds like I will be on that soon
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease
Lomotil 2 Tsp. (4/day), Flaygl 500 mg (2/day), TPN 14 hrs/day, IV fluids 4 hrs/day, Prednisone 5 mg (1/day), Florinef .05mg (1/day), Culturelle (1/day), Entocort 3 mg (3/day)
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease
Lomotil 2 Tsp. (4/day), Flaygl 500 mg (2/day), TPN 14 hrs/day, IV fluids 4 hrs/day, Prednisone 5 mg (1/day), Florinef .05mg (1/day), Culturelle (1/day), Entocort 3 mg (3/day)