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Proctitis healing process. Are my meds working?

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Posted 12/7/2015 6:09 AM (GMT 0)
Hey everyone. I was diagnosed with Ulcerative Proctitis on November 12th and my doctor prescribed me canasa 1000mg suppositories (take 1 nightly) and delzicol 400mg oral capsules (2 pills taken orally twice a day).

I started taking these meds as prescribed on November 19th and saw a great reduction of blood and mucus within 5 days.

A few days ago I noticed a small amount of blood in my stool (a lot less than before I started meds) that worried me a bit and then the next couple of days I was producing stools without blood (as far as I could see) but right now I just had a BM with more blood in it. The amount of blood was still less than before the meds but a lot more than what I saw the other day.

I just used my Canasa and also noticed a little blood on my insertion finger.

I'm on day 19 of 45 for Canasa and I'm starting to worry that I'm not healing? Does anyone have any experience/insight into this?

This is making me anxious. Could my doctor have made a faulty diagnosis after my colonoscopy?
Posted 12/7/2015 8:03 AM (GMT 0)
Healing takes time. Don't worry too much about it right now. If you are doing better than you were before your diagnosis without the aid of prednisone then I'd say you are right on track. UC has ups and downs, you can't really expect every day to be an improvement upon the last. There are so many factors that can come into play such as stress or diet. If you are showing improvement this quickly then you are faring a lot better than a lot of people.
Posted 12/7/2015 11:39 AM (GMT 0)
Here you go this was just approved in the not to distant past,also known as Uceris.

There are also other rectal enemas and foams.

Old Mike

http://www.ncbi.nlm.nih.gov/pubmed/25644096

Sandborn WJ1, Bosworth B2, Zakko S3, Gordon GL4, Clemmons DR5, Golden PL6, Rolleri RL6, Yu J6, Barrett AC6, Bortey E6, Paterson C6, Forbes WP6.

Abstract

BACKGROUND & AIMS:

Budesonide is a high-potency, second-generation corticosteroid designed to minimize systemic adverse consequences of conventional corticosteroids. We performed 2 randomized, phase 3 trials to evaluate the ability of budesonide rectal foam, formulated to optimize retention and provide uniform delivery of budesonide to the rectum and distal colon, to induce remission in patients with ulcerative proctitis or ulcerative proctosigmoiditis.

METHODS:

Two identically designed, randomized, double-blind, placebo-controlled trials evaluated the efficacy of budesonide foam for induction of remission in 546 patients with mild to moderate ulcerative proctitis or ulcerative proctosigmoiditis who received budesonide foam 2 mg/25 mL twice daily for 2 weeks, then once daily for 4 weeks, or placebo.

RESULTS:

Remission at week 6 occurred significantly more frequently among patients receiving budesonide foam than placebo (Study 1: 38.3% vs 25.8%; P = .0324; Study 2: 44.0% vs 22.4%; P < .0001). A significantly greater percentage of patients receiving budesonide foam vs placebo achieved rectal bleeding resolution (Study 1: 46.6% vs 28.0%; P = .0022; Study 2: 50.0% vs 28.6%; P = .0002) and endoscopic improvement (Study 1: 55.6% vs 43.2%; P = .0486; Study 2: 56.0% vs 36.7%; P = .0013) at week 6. Most adverse events occurred at similar frequencies between groups, although events related to changes in cortisol values were reported more frequently with budesonide foam. There were no cases of clinically symptomatic adrenal insufficiency.

CONCLUSIONS:

Budesonide rectal foam was well tolerated and more efficacious than placebo in inducing remission in patients with mild to moderate ulcerative proctitis and ulcerative proctosigmoiditis. ClinicalTrials.gov ID: NCT01008410 and NCT01008423

Posted 12/7/2015 4:34 PM (GMT 0)
If you're seeing more blood then contact your gastroenterologist. By the sounds of it, you're backsliding and your flare is getting much worse. Uc can aggressively spread, especially within the first 5 years after diagnosis. So, keeping on top of it early, is the best way to keep a minor case of ulcerative proctitis in check, and not become pancolitis (entire large intestine involvement).
Posted 12/7/2015 5:40 PM (GMT 0)
What exactly is the extent of the proctitis location?

You should be on a higher dosage of rectals...best would be to request 4g mesalamine retention enemas.

q
Posted 12/7/2015 5:44 PM (GMT 0)
Hey Quincy,

After my colonoscopy last month my inflammation was mild and limited to the first 2 inches of my rectum. I had experienced symptoms on and off for a little over a year and a half before I got my diagnosis because I always attributed it to piles (so I've had this disease for a little while now).




Thank you all for the feedback.

I called my doctor's office to speak with my gastro and he's out of the office today. I left a message with his nurse but now I'm feeling pretty anxious about everything.

I was doing so well with the meds and now I'm scared that's all about to change and my proctitis is going to spread.

Any recommendations on what to do while I wait for him to call me back? Should I maybe up my dosage on my oral mesamaline or suppositories? Can you overdose on mesamaline?
Posted 12/7/2015 5:59 PM (GMT 0)
Just the first 2 inches? Your oral med won't touch that area....a dosage of just 1600mg is low, however. You could ask to up it to at least 6 daily.

Did you have any inflammation at all as per the biopsies pathology above that area?

You can double the dosage, but you do need your prescription to state that or you might not get refills if you're using more that the prescription. Ask the doctor if he'll call in another one once you run out of this one.

You're no where in the realm of overdosing on mesalamine. I've used it for almost 27 years, increasing/decreasing rectals but a steady dosage of the oral. Longest I was on the 4g rectals at one time was 4 months. Then I was tapering slowly....no effects at all except improvement.

Unless you have side effects that are serious to get off the medication or to have a worsening of symptoms...let it do its thing. It's a slow process, and you have a good ladder to climb should you need it.

Start with upping the orals to 6 daily (asking the doc), and double the supps.

q
Posted 12/7/2015 6:11 PM (GMT 0)
Quincy,

Yes. I had 7 biopsies taken from my colon and all of them came back normal showing no signs of inflammation.

Thank you for the speedy response I really appreciate your insight. It definitely calmed me down.

I'm going to up my usage to 2x Canasa 1000mg suppositories today while I wait for my doctor to get back to me. I don't want to add to my oral capsule prescription just yet, my doctor told me that the oral medication was to help keep it from spreading past the rectum and I'm kind of running low on them already so I'm going to hold off on that until I speak to him.

Also an important thing to add is I'm 22 and a senior in college. This week was extremely stressful with finals weeks and battling anxiety, the past 2-3 days I've also been eating fast food more than usual because of my limited free time to cook. I know that all of these are factors that contribute to an increase of symptoms so I'm hoping that this is the reason for seeing some blood show up again.

Crossing my fingers!

Post Edited (dp7) : 12/7/2015 11:21:37 AM (GMT-7)

Posted 12/7/2015 6:25 PM (GMT 0)
Update:

This may be a little TMI but I just had a BM without any signs of blood or mucus! Phew! Thank god. Yesterday when I noticed blood in my stool I also noticed my stool was a little bit harder than usual (it was hard to push out) so maybe this scraped against fragile tissue causing minor inflammation/blood again?

Should I wait to see what my doctor says about adding to my medication dosage or should I just wait it out until he calls me tomorrow?

Thank you all for the support!
Posted 12/7/2015 6:32 PM (GMT 0)
I can respond quickly because I'm on the computer at this time. If there's no responses back to threads once I'm done...I leave, lol. You've responded, so I will as well.

You need to realise that you're new to the game and learning while in a stressed time of your life. It'll take a while.

The oral meds won't fully keep the UC from spreading past the rectum since the sigmoid won't be fully covered. That's where the enemas come in.

Unless you had a patch in the cecum and some changes in the biopsies throughout....the dosage you're on can help keep the rest of the colon quiet while you're healing. It's not going to skip the rectum inflammation and spread downward or separately.

But....your symptoms will give you insight if there's any changes, especially regarding the type of stool you'll have. If it becomes looser....then the area will probably have encompassed the entire rectum and if diarrhea, it's up into your sigmoid.
But, keep in mind that food can have an effect on the functioning of the gut....and some will cause you loose stool and diarrhea. But, once it's out, it wouldn't continue...if things continue, then it warrants a second look on what's going on via recto/sig scope and/or stool samples to make sure it's not an invader (since they pass from hand to mouth).

Deal with what you have at this point. Since it's very low in the rectum...it can sometimes respond slower.

Your food intake...try to keep it as balanced as you can, and wash your hands before you eat and often throughout the day. Don't forget to clean your cellphone periodically. I clean mine once I get home with lense wipes by Zeiss. I'm not saying get obsessive, however....just be aware.

You could start a probiotic to take at bedtime. It won't affect the mesalamine.

Other than that...create a plan to discuss with your doctor and go from there. Extremes aren't warranted at this point. If the mesalamine isn't enough then there are steroid supps that could be added or alternated with the mesalamine to give an extra boost.

Hang tough....
q scool
Posted 12/7/2015 6:52 PM (GMT 0)
Thanks Quincy!

I've been drinking yakult probiotics in the morning on an empty stomach but I doubt they're potent enough to help me out. I'm going to research some natural supplements (probably bowsellia) and other probiotic types to help me strengthen my gut.

I can't help to think that this all started after I was prescribed way too many antibiotics. When I first started college I was diagnosed with eczema and my dermatologist never told me to stop using my steroid cream after 14days (I was using it every day for 2 months wherever I saw even a minor itchy rash). The steroid cream weakened my skin and I got a staph infection. Instead of waiting for a culture I was prescribed 2 weeks worth of antibiotics that didn't kill off the bacteria so I was then prescribed another 2 weeks of antibiotics back to back for another 14 days. I spent the whole month of mid November- mid December on antibiotics and then noticed my first UC symptoms around January/February.

Kinda feels like way too odd of a coincidence that my UC symptoms started a month a part from my antibiotic ordeal.

Hopefully a good probiotic helps me restore some bacterial balance in my colon.

Post Edited (dp7) : 12/7/2015 11:56:31 AM (GMT-7)

Posted 12/7/2015 7:18 PM (GMT 0)
Only 2 inches of your rectum is affected. If the antibiotics were the total culprit, I'd assume more would have been affected.
You have no choice but to use antibiotics for a staph infection. Imagine the alternative. Plus, you have no idea if inflammation was already brewing...who realises? I think it was more of a push into the more obvious. Not everyone who uses antibiotics gets UC...and many are on it often or for very long periods of time.

Since you do already have eczema (nicely has a connection with asthma...anyone in your family with either?), autoimmune doesn't like to party alone. Welcome to the crap club. Stress does exacerbate eczema and all autoimmune. There are different kinds of skin conditions that can mimic it...so should it become worse, make sure you see a specialist to make it definitive.

I have no idea about bowsellia, but others here use it. Maybe put out a separate question about that specifically.
The probiotics I use are in my signature. The one that I'd suggest to add would be the Primadophilus Reuteri capsules. Take it at night on empty stomach.

Hope you sail through your exams and take advantage of the time afterward to regroup and heal.

Keep us posted how you're doing,
q
Posted 12/7/2015 8:19 PM (GMT 0)
Unfortunately I'm the only one in my immediate family that suffers from a chronic illness. My little brother has psoriasis but not too informed about what that is.

Thanks again Quincy! I'll keep you guys in the loop.
Posted 12/10/2015 6:44 AM (GMT 0)
Just wanted to update this post in case someone googles something like it because they are in the same spot I was in.

I haven't had any bleeding since that one time. Normal stools hooray!
Also I spoke to my Gastro surgeon on the phone and he told me basically what you all said: the healing process takes time, especially in the rectum. He told me not to worry to much about it and to finish my meds + continue taking them (via refill until our next appointment).
The only time I should worry is if I notice blood again for consecutive days in a row.

Hope this helps!
Posted 12/10/2015 3:10 PM (GMT 0)
Keep us posted. Good you have refills.

Take this experience for next time. Bleeding isn't an only flare symptom.

q
Posted 12/10/2015 3:47 PM (GMT 0)
dp7 -

"We've got a lot of new posters, welcome! As a reminder, we can best answer your questions if you add a signature to your profile. Go to My Profile --> Edit Profile. Include your current medications. Thanks!


Moderator Ulcerative Colitis
John, 37, UC in clinical remission
Rx: Remicade @5mgs/kg/8wks + 6MP @50mgs
Did you know diarrhea runs in families? It runs in your jeans."
Posted 12/10/2015 4:05 PM (GMT 0)
Sorry. Forgot to mention that this is of course, relative to me and my situation.

Bleeding is the only symptom I've ever experienced within the past 2 years (knock on wood) and my Gastro knows this hence his logic.
Posted 12/10/2015 5:38 PM (GMT 0)
I have been dealing with what has been diagnosed as proctitis for 3 and a half years now. I tried everything or well thought I have. My GI and surgeon don't know how why the meds aren't working. My underlying cause after doing more research I found could be a flora imbalance. So take probiotics if you're not. I am taking hyperbiotics pro 15 5 billion and I feel like after sampling several this one to be the best and most comprehensive. Also, look up cortifoam. It is a steroid foam that attaches to the rectal wall and stays there longer for a more soothing relief. Canasa did nothing for me what so ever.
Posted 12/10/2015 5:48 PM (GMT 0)
Hey duelling Carl,

Canasa has been working for me. I'm on day 21 of 45 of taking it (as prescribed by my doctor) and haven't had any symptoms really.

I plan on slowly tapering off my oral Delzicol capsules and the Canasa soon. Hopefully I can get to the point where I'm only taking Canasa twice a week and I'll probably try staying on the capsules for the rest of my life.
Posted 12/11/2015 4:18 AM (GMT 0)
Don't taper off the oral...1600mg is a maintenance dosage already.

Regarding the Canasa...taper eventually to a maintenance dosage of hopefully twice a week.

q
Posted 12/11/2015 12:27 PM (GMT 0)
Quincy is right. Uc requires maintenance medication for life, that's your Delzicol. UC is caused by your immune system attacking the lining of your large intestine. UC is an incurable disease, our medications treat our symptoms. Without your medication, your uc symptoms will return. So, tapering off of those maintenance medications is a terrible idea.
Posted 12/11/2015 10:51 PM (GMT 0)
Agree with above....don't taper. My first doc was a moron and told me it was ok to stop my meds once I felt better. He didn't teach me about maintenance meds or rectal meds and therefore I was poorly managed in the early years.
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