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Persistant " mild" Ulcerative Proctitis: Advice needed

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Ulcerative Colitis
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KV18
Regular Member
Joined : Aug 2014
Posts : 98
Posted 2/10/2021 11:24 AM (GMT -6)
Hey Guys,

I am posting on here again as I am not sure what to do. I have been flaring "mildly" since Feb 2020. I have had two flex sigs and a colonoscopy in between feb 2020-feb 2021. All is clear but the rectum, the bottom 5 cm, Ulcerative Proctitis. My symptoms are Loose stool, occasional cramping, occasional pain behind belly, some urgency, lower back pain, and some occasional mucous. Although minimal, after a year they get draining. Some days are great and others are very bad. I cant workout as much and have every few weeks some " bad days" of diarrhea. My diet is a more limited SCD (no dairy), all organic, I have also cut back on animal meat only have it once daily. I am taking probiotics ( Tristar naturals probiotic supremacy triple strength/quercetin, colostrum, Vit D, Omega 3, Vit B etc. I track everything I eat and all my bowel movements so I know it is not my diet or what I am eating causing issues.

Current UP Meds: Mezavant 2 pills twice daily
* I am not currently on any rectal meds as the mesalamine enemas and suppositories I react badly too
* I was on betnesol enemas twice for 2 month stretches back in the spring/summer couldn't fully knock out the inflammation but helped with stool formation
*I was also on Cortiment in the Fall for the full 8 week course alongside the Betnesol it also didnt knock it out fully, didnt get better or worse
* I have also tried the budesonide suppositories alone twice daily and with the betnesol, didnt fully knock it out

I have also tried the following:
-Turmeric/Curcicum, did nothing, bad stomach reaction
- Vitamin E enemas, did nothing
-Aloe inserted rectally morning and night, has helped reduce mucous ( currently still utilizing)
-Acupuncture
-Meditation ( currently still utilizing)

I pushed for a colonoscopy this week since I hadn't had one since 2012 and I thought maybe I had Chrons? It was again confirmed that I have mild rectal inflammation for 5 cm causing these symptoms, the rest all clear. I was told "leave it for now and revisit when it gets worse"... HUH?!!? My thought would be to treat it now while its mild and before it spreads, Am I right?! I asked to go back on something rectally and was told no...

My old GI (before he passed away) worked with me for 2 years from 2012-2014 to nip the inflammation through trial and error of drugs and we accomplished 100% remission ( the good old days)! My UP is super stubborn hence the 2 year flare and current 1 year flare I am still in.


My thoughts are now I need to find another GI doctor ( this is my second one this year) who will be patient and find something that works to knock out the inflammation? Or legit do I listen to both GIs and just leave it for now? WHAT DO I DO sad.

I extremely exhausted and defeated. I know I should be thankful for being mild, which I am. But my symptoms are draining I just cant stand for " leaving this till it gets worse". Any thoughts, comments ideas much appreciated.

Thanks
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MmeMulot
Regular Member
Joined : Apr 2006
Posts : 134
Posted 2/10/2021 11:50 AM (GMT -6)
There are people on here who are much more knowledgeable about the various treatments than I am to offer suggestions, but I wanted to say that I am so sorry you're going through this stubborn flare. It definitely is draining! I think it's terrible that your GI won't explore any other options and is just waiting for it to get worse. Knock on wood that I have a GI I love now, but I went through several not good ones before him. It's so important to have a doctor you trust and who listens to you and works with you.

What sort of bad reactions do you have to the rectal mesalamine meds? I take it the reactions must be worse than the flare?
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KV18
Regular Member
Joined : Aug 2014
Posts : 98
Posted 2/10/2021 11:59 AM (GMT -6)
Thanks for the kind words! Mesalamine enemas, gave me profuse consistent diarrhea, heavy urgency and the suppositories gave me mass globs of mucous, increased urgency and severe stomach pain and all around a bad feeling. I have been searching the forum high and low to find new ideas to try and I think I have done them all. I guess I just want to know that I am not crazy for wanting to get rid of the inflammation vs waiting for it to get worse? Seems outrageous.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1009
Posted 2/10/2021 12:28 PM (GMT -6)
You can go up to 4 mezavants....
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KV18
Regular Member
Joined : Aug 2014
Posts : 98
Posted 2/10/2021 12:35 PM (GMT -6)
I am taking 4 per day now!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 949
Posted 2/10/2021 1:41 PM (GMT -6)
My opinion is you should definitely look for another GI. I don’t understand why your current one would be happy with the effect your mild flare is having. Sounds like it is interfering with your daily life and that’s not acceptable. I know long term steroid suppositories and enemas can thin the colon lining ( or I should say I think I read/heard that).

I know it’s a pain to find a new GI but I think I would go looking if I were you.

Did you try the sulfur free mesalamine enemas? Seems others posters here say they were having a reaction to the sulfur in rowasa and not the mesalamine? I have no experience so just mentioning what I’ve read.

Good luck!!!!
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KV18
Regular Member
Joined : Aug 2014
Posts : 98
Posted 2/10/2021 1:50 PM (GMT -6)
Thank you for confirming my thoughts and affirming I am not crazy lol! Great tip on the sulfur free I did try them and also the foam, still no bueno. I am on the hunt, Thanks!
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tiredofallthispoop
Regular Member
Joined : Jan 2017
Posts : 218
Posted 2/11/2021 9:18 AM (GMT -6)
I really liked Uceris foam
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