Struggling with Proctitis!

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VSingh
New Member


Date Joined Dec 2016
Total Posts : 8
   Posted 1/9/2017 2:01 PM (GMT -6)   
Recently (Since before Xmas), i have been suffering really annoying symptoms. I had a sigmoidoscopy at the beginning of December to which my Colitis had now been diagnosed as "Proctitis" as it was only in the rectum.

This would explain the symptoms i am having which are of extreme Tenesmus, urgency in the mornings, passing mucous and blood in the mornings especially and generally struggling to control my bowels when i get to work in the mornings. (I have had 2 accidents since December!).

I am currently on a tapering dose of Pred (20mg), Pentasa Oral, Methotrexate (25mg), Entivyo, and rectal pentasa! Still after all this, i dont seem to be having any relief from these debilitating symptoms! I have also been eating a low residue diet, avoiding dairy products/spicy foods/fried foods and am slowly weening myself off wheat/gluten products to see if this makes a difference.

I am really at a point now where i do not know what to do with myself. I have exams coming up in the next few weeks and am struggling beyond belief to stop myself from worrying about having an accident during/before the exams!!

Please can anyone shed any light on something that can help? Its the urgency and accidents that are getting to me the most, the blood and mucous i can live with to a certain extent.

Regards,

Vik

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 9306
   Posted 1/9/2017 2:16 PM (GMT -6)   
Vik, you're a month in and some of these medications take many weeks to work (entyvio and methodextrate). Any improvement at all? The prednisone and Pentasa both should've helped by now...

Did you have a stool test to check for pathogenic causes to your symptoms?
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Mesalamine DR, 5mgs pred (tapering)

Tips for surviving UC: learn to laugh as it helps, get a good pair of running shoes for bathroom runs, and appreciate the small things.

VSingh
New Member


Date Joined Dec 2016
Total Posts : 8
   Posted 1/9/2017 3:12 PM (GMT -6)   
iPoop said...
Vik, you're a month in and some of these medications take many weeks to work (entyvio and methodextrate). Any improvement at all? The prednisone and Pentasa both should've helped by now...

Did you have a stool test to check for pathogenic causes to your symptoms?


Sorry iPoop, i should of said, i've had Colitis since May 2015, and been on Entivyo since September 2016... methotrexate since at least May of 2016 too... The pred did help when i started this course (but that was on a higher dose!) The pentasa suppositories i hope will do something soon.

I havent had a stool test. Is this something i should push for?

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 9306
   Posted 1/9/2017 3:40 PM (GMT -6)   
Whenever our symptoms worsen it's always a good idea to get a stool test. As pathogenic causes like, notoriously c diff, can mirror UC symptoms but only respond to antibiotics (standard uc meds have zero impact). Something to consider at least...
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Mesalamine DR, 5mgs pred (tapering)

Tips for surviving UC: learn to laugh as it helps, get a good pair of running shoes for bathroom runs, and appreciate the small things.

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3663
   Posted 1/9/2017 6:42 PM (GMT -6)   
given your upcoming exams, it would also be reasonable to go back to a higher dose of pred, maybe 40mg, and only taper when symptoms are controlled (or at least after exams)

Doggiedo
Regular Member


Date Joined Jan 2014
Total Posts : 426
   Posted 1/9/2017 9:13 PM (GMT -6)   
So sorry you're dealing with this! I completely feel your pain! I'd suggest calling your doc again. Maybe trying something new? Not sure what? I know others have said on here before that if you're still having symptoms you shouldn't be stepping down the pred. I'm sure the stress of the exams is not helping either. So sorry you're dealing with this.
Diagnosed 2003, hospitalization in 2006
Current mess: Flortistor 2 pills/daily & Entyvio (few months in and working well!)

VSingh
New Member


Date Joined Dec 2016
Total Posts : 8
   Posted 1/10/2017 4:05 PM (GMT -6)   
Thanks for the responses! I will ask for a test for c.diff on my next appointment. I think im going to ask my gastro if i can up the dose of pred at least for the meantime whilst i get my blasted exams out the way!

Doggiedo your right! Thats completely what im thinking. The stress from the exams must be a contributing factor to my symptoms. Once they are over i will hopefully see an improvement. Until then i suppose its having to suck up and deal with it i suppose! confused

climbsnowgirl
Regular Member


Date Joined Nov 2016
Total Posts : 46
   Posted 1/11/2017 2:06 PM (GMT -6)   
Hi VSingh,

Seems like Entyvio isn't working a 100% yet. From what I heard it does take a while to work, not like Remicade...
I second the idea that you should not taper pred if your symptoms are that heavy. That's how my GI works : when blood come back, he makes me stay to the dose where I am blood free and I try to taper again the week after. Sometimes, I just need an extra week at 30mg for example.

Also, your rectal pentasa doesn't seem to work as well as it should, especially because you have proctitis. Have you ever tried other enemas? The good one should helps with mucus and blood.

So i'm gonna throw some ideas here to help with the accidents and maybe you already know all that stuff!!! ;)

I would say it depends on the nature of your accidents/poop...
If it's mainly poop:
- Yes, have a c-diff test ASAP, don't wait for the appointment
- If you haven't tried yet, think about adding eventually a probiotic to your treatment. Probiotic is like lottery for us, the good one will help a ton and the bad one will make you feel bad for a few days or more... For me, Align is a trigger, but now I can't live without RenewLife ColonCare that helps me so much with diarrheas. (Little trick, try one before a GI appointment, so he could fix you if you choose the wrong one... It's scary I know, but when I did found the right one for me, my only regret was that I havn't tried them in 12 years of disease because I was too scare)
- Try slippery elm, helps to slow down diarrheas (approuved by my father and brother who have Crohn's)

If your accident are more mucus/blood (which in my experience is hard to hold):

Focus on healing your gut mucosa:
- Don't skip enemas
- Try L-Glutamine powder : morning (10g) and night (5g) on empty stomach
- Try to have more liquid meals (bone broth soups, pottage, protein shakes (buy a good one! something like Vega or SunWarrior) and smaller meals more often. Be patient, it may gives your gut the rest needed to heal the ulcers!

And one last thing, have you cut completly added sugar? Could help a lot!!!!

Good luck with your exams! Trust yourself, you'll do well smile
Marie, 28 yrs old

Dx 2005. Flare frome 2005 to 2009. Remission from 2010 to 2015. Prev. med : Imuran, Pentasa, Mezavent, Enemas.
September 2015 to today : 2 salmonella and 2 c-diff
Current medication : Vanco, Salofalk, Prednisone, Remicade (10mg/kg every 6 wks)
Probiotics : Renew Life Ultimate Flora Colon Care, BoulardiiMAX
Others : Calcium, Vit D, L-Glut, Digestive enzymes

VSingh
New Member


Date Joined Dec 2016
Total Posts : 8
   Posted 1/14/2017 4:07 PM (GMT -6)   
climbsnowgirl said...
Hi VSingh,

Seems like Entyvio isn't working a 100% yet. From what I heard it does take a while to work, not like Remicade...
I second the idea that you should not taper pred if your symptoms are that heavy. That's how my GI works : when blood come back, he makes me stay to the dose where I am blood free and I try to taper again the week after. Sometimes, I just need an extra week at 30mg for example.

Also, your rectal pentasa doesn't seem to work as well as it should, especially because you have proctitis. Have you ever tried other enemas? The good one should helps with mucus and blood.

So i'm gonna throw some ideas here to help with the accidents and maybe you already know all that stuff!!! ;)

I would say it depends on the nature of your accidents/poop...
If it's mainly poop:
- Yes, have a c-diff test ASAP, don't wait for the appointment
- If you haven't tried yet, think about adding eventually a probiotic to your treatment. Probiotic is like lottery for us, the good one will help a ton and the bad one will make you feel bad for a few days or more... For me, Align is a trigger, but now I can't live without RenewLife ColonCare that helps me so much with diarrheas. (Little trick, try one before a GI appointment, so he could fix you if you choose the wrong one... It's scary I know, but when I did found the right one for me, my only regret was that I havn't tried them in 12 years of disease because I was too scare)
- Try slippery elm, helps to slow down diarrheas (approuved by my father and brother who have Crohn's)

If your accident are more mucus/blood (which in my experience is hard to hold):

Focus on healing your gut mucosa:
- Don't skip enemas
- Try L-Glutamine powder : morning (10g) and night (5g) on empty stomach
- Try to have more liquid meals (bone broth soups, pottage, protein shakes (buy a good one! something like Vega or SunWarrior) and smaller meals more often. Be patient, it may gives your gut the rest needed to heal the ulcers!

And one last thing, have you cut completly added sugar? Could help a lot!!!!

Good luck with your exams! Trust yourself, you'll do well smile


Hi climbsnowgirl,

First of all thank you soo much for taking the time to write that out. Its brilliant information of which im sure myself if not others will also benefit from!

I have been also told that the Entivyo takes time to work. I would be keen to know how long it took for others to notice an effect with this. Also does the ulceration need to have been healed prior to the medication taking its effect?

The main issue for me at the moment is as you have said with the "accidents" which consist mainly of blood and mucous im afraid! sad

I will take what you have suggested into account and try the aforementioned tricks. I have tried the L-Glutamine but really did not get on well with it at all! Another idea that has been tossed around my head is that of Tumeric? After reading up online, it seems to have a lot of natural healing properties. So shall give this a try! I havent cut out sugar as i think id find it really hard to but again, in my current situation i am willing to try anything!

Thanks for the exam wishes, hopefully i will report back by the end of this week with some sort of success with both exams and tummy sucsess! (Fingers crossed!)
Male, 23 years old. Diagnosed with Ulcerative Colitis in June 2015.

Current meds (as of 26/12/16):
- Vedolizumab (Entivyo)
- Methotrexate
- Prednisolone (Tapering down)
- Pentasa (Oral and Suppositories)

Hoping to be Colitis free soon. Stay positive!

climbsnowgirl
Regular Member


Date Joined Nov 2016
Total Posts : 46
   Posted 1/16/2017 11:42 AM (GMT -6)   
Hi VSingh,

Your question was : Also does the ulceration need to have been healed prior to the medication taking its effect?
My answer : I can only repeat what I've been told (not a doctor!), but my GI (who's kind of famous for IBD research in my country) thinks there's more chance for biologics to work and to put Crohn's/UC asleep for a long time if there's not much ulcers/inflammation at the beginning of the treatment.

I'm disapointed you cannot handle L-Glutamine, my hollistic doctor told me that some patients don't react well to it sad I havn't propose before, because L-Glutamine powder is so easy to take, but something else has worked for me for bood : Cabbage juice. You can read about it online, I take only 1oz (so it's just 1 big cabbage leaf) on empty stomach and I follow with veggies/fruit. Juicers are a really great accessorie to have when you have UC (good birthday gift to ask :P). It allows us to have fresh and raw veggies/fruit without any fibers. The only thing is that you have to clean it, but I used it since a year and my only regret is that I should have buy one before !

For turmeric, you've got nothing to loose by trying it! There's some great recipes with almond milk online : the Golden milk. Personally, I tried it, but for me, it's more the ginger than the turmeric that really helped me.

Oh and my hollistic gave me those others tricks for healing gut mucosa that have work for other patient : marshmallow root and butyrate supplement. Butyrate is also in ghee that you can use everywhere when you cook.

Give a real try on cutting refined sugar and anyway it's not healthy in general smile I found that riped banana substitute really well sugar in a few recipes.

We are all different, but for me, sugar is my biggest ulcers trigger. I never thought that for the 5 first years of UC. I had those mucous/blood accidents all the time, I was in pain and couldn't do anything physical. I cut sugar accidently (I was living in my first appartment and had no money for dessert! So I keeped the money for nutritive food only) and it put me in remission for 6 years. Since then, if I have sugar once it's okay-ish, but if it's a few days in a row, the blood come back...
And yes, I still have dessert from time to time (always feel the guilt!) but the days after, I manage to cut sugar completly and if the blood had came back, it goes away quickly.

I'm shure you'll go through it. You're so positive! Continue to listen to your body, he knows what's best and most important, be patient!
Marie, 28 yrs old

Dx 2005. Flare frome 2005 to 2009. Remission from 2010 to 2015. Prev. med : Imuran, Pentasa, Mezavent, Enemas, Pred.
September 2015 to today : 2 salmonella and 2 c-diff
Current medication : Vanco, Salofalk, Pred, Remicade (10mg/kg every 6 wks)
Probiotics : Renew Life Ultimate Flora Colon Care, BoulardiiMAX
Others : Calcium, Vit D, L-Glut, Digestive enzymes

Casey_LB
Regular Member


Date Joined Mar 2015
Total Posts : 123
   Posted 1/18/2017 7:47 AM (GMT -6)   
Suggestion:.

Talk to your professors ahead of the exams. Most are reasonably understanding about genuine medical problems, and they might make some accommodation if you are unable to sit through the exams.

Better to do this upfront that have to explain later why you missed an exam or had to leave in the middle.
Male 54
Dx'd w/ UC 2013, flare since 4/14
Asacol HD 800mg, 6/day
Start Remicade 12/24/14, nonresponsive, DC'd 3/15
Start Humira, 8/1/15, nonresponsive, DC'd 12/1/15
Hydrocortisone enemas helped, regressed after stopping,

Start Entyvio 12/4/2015.
Restart hydrocortisone enemas 12/8/2015
Start UMass IBD_AID diet 12/1/2015
Improved, not full remission w/ Entyvio, hydrocortisone, IBD-AID

Bloom93
Regular Member


Date Joined May 2012
Total Posts : 286
   Posted 1/25/2017 4:57 PM (GMT -6)   
Resistant starch diet could be helpful for proctitis . Google and figure out your best food choices for this.

Fecal transplant is also a good option if you are interested in alternate treatment . Browse this forum or google or check into power of poop website.

Best wishes...
Daughter 22 yrs- UC Pan colitis.-In Remission achieved by 5 home fecal transplant in 2011.
Diagnosed in May 2011
SCD diet (2011-2013)
Occasional sugar , milk and outside foods(2013- 2014)
Normal diet - 2015
Current meds- Lialda- 2 tabs a day.
5 Home fecal transplants for C.diff in dec 2011.

KV18
Regular Member


Date Joined Aug 2014
Total Posts : 65
   Posted 1/26/2017 1:52 PM (GMT -6)   
I feel your pain man, proctitis although just at the end of the colon, is SO STUBBORN! i flared for 2 years with the blood mucous and urgency, it took alot of trail and error with drugs all the while I was extremely strict on the SCD diet alongside probiotics/vitamins... i would recommend starting the diet and taking a probotic especially while in a flare... and if the meds haven't improved you at all after a week or two, go back to your doctor... The meds that finally put me back into remission was steroid enemas and orally taking mezavant. The other meds inserted rectally were not powerful enough to do anything ( sounds like you right now), it took a powerful betnesol enema along side orally mezavant. I'm in Canada BTW, drug names may be different wherever you are. Anyways, change your diet, take vitamins and keep trying different drugs until they hopefully work. Proctitis is god darn stubborn.
27 female diagnosed dec 2012 Proctitis
flared aug 2013 till april 2015 finally in remission after dealing with and insanely stubborn proctitis
SCD strict diet, vitamins galore, acupuncture, vitamin e enemas

VSingh
New Member


Date Joined Dec 2016
Total Posts : 8
   Posted 2/3/2017 12:48 PM (GMT -6)   
Hi everyone. First of all thanks to all for an overwhelming response! You guys are the best resource of knowledge when it comes to dealing with symptoms!

Just a quick update on the situation. So i managed to get through my exam period with minimal interruption from the proctitis. (I had to make sure i had left plenty of time each morning for the exams etc. Didnt eat or drink anything that i knew would worsen my symptoms the evenings before and also took Psyllium husk - I find this helps with the blood and mucous in the mornings!).

Since the exams, i have been tapering off the pred only to find my symptoms returning and becoming worse. They have reviewed my situation and are now starting me on Humira! I hope this works and is the medicine that finally puts me into remission!

I did find that the "Low fibre diet" given to me by the dietician has helped me no end to ease symptoms. Eating things like sweetcorn makes me 100x worse and i pay the price the next day!

I thank you all again for your responses. Does anybody have an reviews on Humira? Has it worked for their proctitis? I am hoping for the best and going in with a completely open mind to this treatment. Fingers crossed!
Male, 23 years old. Diagnosed with Ulcerative Colitis in June 2015.

Current meds (as of 26/12/16):
- Vedolizumab (Entivyo)
- Methotrexate
- Prednisolone (Tapering down)
- Pentasa (Oral and Suppositories)

Hoping to be Colitis free soon. Stay positive!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 9306
   Posted 2/3/2017 1:58 PM (GMT -6)   
Some have had luck with humira and others not. Side effects are rare.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Mesalamine DR

You know you have UC when you're confident you don't have to poop, hop in the car, get 1/4 of a mile down the road, and have to stop and poop at a dunkin donuts.
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