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Posted 10/12/2007 3:09 AM (GMT -6)
Urgh ok lol.  So a couple months ago my GI had put me on  Rowasa enema 2X day, Anusol suppository 2X day, and Sulfasalazine 500 mg 4X day.  Ok so I did that for 30 days and my symptoms basically stopped.  No blood or mucus.  So then I stopped everything and slowly but surely the symptoms started to come back.  Apparently I was supposed to go on the Sulfasalazine for a matinence but I didn't.  Anyways, so I am starting this therapy again tomorrow.  Any input or advice?  I mean what is the next step?  Predisone? What other options are out there. Has anyone honestly ever just had there UC go away with out having to stay on meds?  I am convinced I got UC from being on Doxycyline for 6 years for acne. The doctor said I have mild chronic proctitis but that's the same thing as UC correct? But just effecting the lower part of the colon? Oh well who knows.  Thanks for letting me share gang!
March of 07 ds mild chronic proctitis
-Rowasa/Sulfasalzine/hydrocortisone supossitories twice daily... did put into remission then I stopped and now it's coming back : ( 10/1/07
-Zoloft 100 mg
-Xanax .5mg as needed
 Non Rx: -Centrum multi-vitamin
-Chromium piclonate -Vitamin C-Calcium-B-12
 

Posted 10/12/2007 4:45 AM (GMT -6)

Hi Dentinn

Why would you want to go onto pred if the other drugs you were on put you in remission?  Hopefully, they will do the same this time round and you wont have to use pred. I am steroid dependent now and If i were you, I would avoid it all costs!

Yes, proctitis is the same as UC but I believe it only affects the rectum area.

Its interesting you mention you think doxycyclene caused your UC.  Well guess what - I took Doxycyclene for an infection 7 years ago and it caused my first ever UC flare! Landed me in hospital for 4 weeks and I almost lost my colon.

Im still suffering now, cannot get into remission.  Doxycyclene is a product of Satan

Back on Pred - 8mg - Steroid Dependent :-(
Azathioprine 150mg
Actonel 35mg
Predfoam Enema
VSL #3 with Activia Yoghurt
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
Prograf Tacrolimus 4mg
 

Posted 10/12/2007 8:53 AM (GMT -6)
stay on your meds!! as long as I took my meds I was fine and did not need to really do much else.........ahhhhhh those were the days!
Beth, 32
UC Diagnosed March 2000
Hydrocortisone enemas 1xday
Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 10/12/2007 9:01 AM (GMT -6)
A sulfasalazine dose of 500 mg 4x a day is considered to be a maintenance dose... a dose patients are put on indefinitely to maintain remission. Twice that dose, 1,000 mg 4x a day is a common therapeutic dose. I'd ask about increasing your sulfasalazine dose before trying pred or immunosuppresants. Sulfasalazine is relatively safe for long-term use in comparison with steroids and immunosuppresants.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Maintenance dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

Posted 10/12/2007 1:59 PM (GMT -6)
dentinn..did you taper the rectal meds or just stop them? They should be used as maintenance when tapered to a lower dosage.

proctitis..a clinical term for inflammation of the rectum. Proctitis doesn't mean it's UC.

Ulcerative proctitis is a diagnosis of ulcerative colitis that's limited to the rectum. Your doctor may discuss with you using the terms "proctitis"..but if you've already had the determination of ulcerative colitis or ulcerative proctitis..it's meant as that. If your diagnosis isn't determined as UC..it's just proctitis. It's always good to get that distinction rather than assuming it's UP.

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

Posted 10/12/2007 3:55 PM (GMT -6)
Quincy - I just stopped using them.  Yeah I checked with my GI and he said it is not considered an IBD.  I guess I just don't understand what even the difference is then between ulcerative proctitis and just proctitis.  Aren't they the same symptoms?
March of 07 ds mild chronic proctitis
-Rowasa/Sulfasalzine/hydrocortisone supossitories twice daily... did put into remission then I stopped and now it's coming back : ( 10/1/07
-Zoloft 100 mg
-Xanax .5mg as needed
 Non Rx: -Centrum multi-vitamin
-Chromium piclonate -Vitamin C-Calcium-B-12
 

Posted 10/12/2007 4:06 PM (GMT -6)
Proctitis is normally inflammation in the rectum and can be most times cured. If what I read is right, there also is no ulceration with proctitis. Proctitis can sometimes last weeks to years depending on the treatment. UP on the other hand is not curable and is part of the UC. Every Uc'er has UP when they are flaring. UP involves the rectum but damage is done at a greater rate including ulceration/inflammation. The symptoms are similiar but the damage is different. So the treatment is the same just like treatment for plain colitis is the same for UC. The meds we take is to reduce the inflammation/ulceration.

Does the doctor know what caused your proctitis?

http://www.mayoclinic.com/health/proctitis/DS00705/DSECTION=1
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 

Posted 10/12/2007 4:20 PM (GMT -6)
Well I have bleeding so wouldn't that mean I have ulcers? No he does not know what caused it. The official diagnosis was non specific Mild Chrnic Proctitis. Like I said in an earlier post I think it was being on an antibiotic for 6 years. I'm wondering if I don't just have a bacterial infection that could be resolved with antibiotics. Im thinking I need a second opinion. In fact I would just like to get a whole new colonoscopy and start from the begining. Thanks for the link to the article, great read!
March of 07 ds mild chronic proctitis
-Rowasa/Sulfasalzine/hydrocortisone supossitories twice daily... did put into remission then I stopped and now it's coming back : ( 10/1/07
-Zoloft 100 mg
-Xanax .5mg as needed
 Non Rx: -Centrum multi-vitamin
-Chromium piclonate -Vitamin C-Calcium-B-12
 

Posted 10/12/2007 4:49 PM (GMT -6)
Bleeding could be hemorrhoids or anal tears.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Maintenance dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

Posted 10/12/2007 4:50 PM (GMT -6)
Bleeding can be coming from irritation in the rectal mucousa not necessarily from ulceration. But I think that if you're not happy with your doc or need more clarified answers then it never hurts to get a second opinion. I can tell you this though, when I was first diagnosed, I had only UP and slowly over the years it had progressed to left sided UC. The pain that I got from the UP was more intense then what I experience with a more advanced form. So I can sympathize with anyone that has either proctitis or UP.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 

Posted 10/12/2007 6:10 PM (GMT -6)
When you are on antibiotics for a while both the good and the bad bacteria are obviously diminished, but the bacteria not affected by the treatment has a chance to grow.  Even yeast, like candida, that is not kept in check by your flora also has a chance to develop.  There should be specifics on what you can take, but one thing that often helps is taking probiotics.
Pancolitis '04
Yet to go into remission, Flare-up since Aug 12th and still atempting to work in the midst of it
On Lialda (2/dy), probiotics, Oriental Medical Tea & Prescribed Diet, Greens+, Fish Oil

Posted 10/12/2007 6:14 PM (GMT -6)
dentinn..did the doctor do a swab to see if you have an infection? Recently, there's been a bit of information regarding Fusobacterium Varium...maybe discuss it with your doctor to see if you could have that happening.

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

Posted 10/14/2007 4:48 AM (GMT -6)
No I dont think he took a swab. Gosh could it possible that I have had an infection since March?
March of 07 ds mild chronic proctitis
-Rowasa/Sulfasalzine/hydrocortisone supossitories twice daily... did put into remission then I stopped and now it's coming back : ( 10/1/07
-Zoloft 100 mg
-Xanax .5mg as needed
 Non Rx: -Centrum multi-vitamin
-Chromium piclonate -Vitamin C-Calcium-B-12
 

Posted 10/14/2007 10:45 AM (GMT -6)

Please, please try to use steroids as little as possible. I was steroid-dependent, on Prednisone for almost a year, then changed to Entocort (another steroid) because "it doesn't cause so many side effects." In addition to the usual weight gain in my face and abdomen, facial hair growth, thinning hair on my head, irritability and inability to sleep, I got the bad side effects. I got osteoporosis and broke both of the bones in my lower leg, developed diabetes and got a disease called anoxic necrosis in both shoulders (requiring two surgeries so far.) All of this was after four years on steroids, because before Remicade it was the only way my disease could be controlled enough for me to function.

For short term use to zap a flare, they're a miracle. For long-term use, they're from the devil.

Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."

Posted 10/14/2007 11:31 AM (GMT -6)
90% of proctitis is limited to rectom, not get into the Ulcerative Colitis.  Proctitis can be cured most of the times. This is what I read on line.
Posted 10/14/2007 12:27 PM (GMT -6)
ulcerative proctitis is ulcerative colitis.  no cure.
 
but....
Proctitis is a general clinical term for inflammation of the rectum. The proctitis that's cured as per your reading would not be of the ulcerative colitis form  from whatever...bacteria infection or sexually transmitted disease, etc....depending on what's actually going on.

Never assume, because from what I've read on this board in the 4 years...more than not have had their's spread to pancolitis...that's waaay beyond limited.

I will say the probability is because of ignoring symptoms and not being on the proper meds..both oral and rectal ...my opinion on that.

Never, ever, ever assume or take any stats for gospel. They just aren't true...because a state that's not in our favour doesn't do us any good.

quincy

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

Post Edited (quincy) : 10/14/2007 11:43:53 AM (GMT-6)

Posted 10/14/2007 7:27 PM (GMT -6)
I have proctitis, there is no cure and is considered UC as per my GI and it does return.
 
 
Dx:  2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 

Posted 10/15/2007 1:11 PM (GMT -6)
sad  I have been dx with ulcerative proctitis 3 days ago and am freaking out.  My GI gave me cortiform & canasa suppositories and said he'd see me three months.  He acted like this life long chronic illness I now have is no big deal!  I am so depressed and feel terrorized by the thought of my future.  I have a demanding job, a beautiful, active 2 year old to raise and a husband that depends on me as well.  How am I going to be alright?  I am curious as to why I was not prescribed pills v.s suppositories?  My GI said that the ulceratice protitis ( which is the same as UC) was contained to my rectum 4- 5 inches so far.  I have no diarrhea, just blood and mucus in my stool.  So why do I have no appetite and am losing weight?  I am 5'6'' and down to 115lbs.  I normally weigh around 122-125lbs.  I have never had stomach or diagestive problems until july 2007 when I first notice the blood.  Can a person have UC for a longtime before the blood comes?
Posted 10/15/2007 1:26 PM (GMT -6)
Hi Maddi, welcome to Healingwell :) Most oral medications don't reach the rectum which is why your doc probably didn't prescribe any. And why you are on rectal meds instead. Yes, someone can have Uc before they notice any bleeding. Not all Uc'ers bleed (but they're the minority). I don't have insight as to why you're losing weight. It maybe because you're not eating because of the loss of appetite? Welcome once again and please know that yes, this can be scary and it can get frustrating, but with the proper maintanence, you can still have a normal life. Hang in there and ask any questions you have no matter how gross you may think it sounds.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Allergies - Singulair, Allegra, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 

Posted 10/15/2007 1:28 PM (GMT -6)
Hi maddi, welcome to healingwell. I know how overwhelming this all seems but you have come to the right place. Our docs don'thave this disease so they don't understand,, everyone here does. Chronic illness is a big deal no matter what your gi says. It will take time to get used to the idea that this will be a part of your life.

This disease is cyclical. There will be bad times and good times.

Your GI prescribed you suppositories instead of pills becuase since you have UP (ulcerative proctitis) the suppositories and foams can reach the area directly and be more affective. Pills would have to disolve into your system and very little would affect the bottom portion of your colon.

Look around the site and try the google search at the top. Post new threads for any questions you don't see answers for in the search. Take a deep breath. This will get easier
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07
Prontonix once daily for acid reflux, zofran twice daily for nausea

Posted 10/15/2007 2:23 PM (GMT -6)
:-)  thanks kelly & sherry for responding.  I feel depressed and embaressed about his right now.  I have been reading what others have said about Doxycyelene and i was on that for a short time and 3-4 months later I noticed the rectal bleeding.  It is interesting to hear what others living with the disease have to say.  I am planning on taking vitamins and supplemets.  What kind should I get because my doctor never mentioned it.
oct 2007 dx ulcerative proctitis. on canasa suppositories & cortifoam

Posted 10/16/2007 1:21 PM (GMT -6)
Hi maddi!

Yes, this disease can leave you feeling super embarassed, depressed, miserable, etc. However, now that you've found people who understand, it's not as hard! Nothing you can ask is going to be too much! Chances are - someone has asked it - or wanted to ask it - before.

I take Forvia for a multi-vitamin. It's specially formulated for IBDers. You can only order it online. If you google it, the site should come up.

Many people her also use a probiotic - there are several posts about them if you look through the forum.

Rectal meds aren't fun, but they really do work!

Hang in there!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate

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