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Bleeding after routine colonscopy - help!!

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Ulcerative Colitis
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Posted 5/11/2018 5:08 PM (GMT 0)
I've been on the name brand (entocort). I was only having pretty mild symptoms though and they may have been related to taking antibiotics. I got better after a week. I am not really sure if I was even flaring though. I hope it helps for you. I always feel like colonoscopies mess me up, even if I'm in remission when I go in. I had a rectal surgery to remove HPV lesions in 2015 and I flared following that. My rectal surgeon said it is common for IBDers to flare after surgery. I wonder if scopes also commonly induce flares...I have no idea, but I have always wondered. Good luck.
Posted 5/11/2018 8:20 PM (GMT 0)
I have had maybe 5 scopes, never had any issues until this one.

I would say my symptoms are "mild", so not severe, but concerning nonetheless and I'm always worried it will get worse before it gets better.

I'm on day 4 of the budesonide, I would say the last two days have been better, but there is still a little blood. Keeping my fingers crossed.
Posted 5/11/2018 9:17 PM (GMT 0)
You were switched from the mesalamine enema To this? For how long to be on it.......good to hear you are seeing some improvement .

q
Posted 5/12/2018 1:16 AM (GMT 0)
I’m doing both for now. The end of the third week for the enemas is tomorrow. Two more weeks on the budesinode.
Posted 5/12/2018 3:44 AM (GMT 0)
Good to hear. 😁
Posted 6/21/2018 5:03 PM (GMT 0)
Well, some time has passed since I last posted, so thought I'd provide an update. Still stuck a bit in this flare, the frustration continues.

After a round of prednisone (40mg for 2 weeks, then tapering) didn't work, the doctor wanted to go back in and take another look. Approximately 2 weeks ago I had another colonoscopy, and the verdict is ulcerative proctitis, bad inflammation just in the last 4-6 inches. He said everything was normal after that. I've been prescribed hydrocortisone enemas nightly for 2 weeks (almost through this), along with a Canasa suppository during the day, ramping up to twice a day when the hydrocortisone enemas are through.

The first week I didn't really notice improvement, but things have been quite a bit better the past week. I'm basically going 2-3 times a day, and the amount of blood, while still noticeable, is minimal (definitely less than before). I will also add I've really clamped down on my diet, drinking only water, and lots of chicken, fish, white rice, etc.

While I'm feeling somewhat optimistic, I'm also still concerned this continues to linger. It's been about 10 weeks in total since this first flared up.

I realize at this point we've tried basically everything aside from the harder core immunosuppressant drugs, which I would like to avoid at all costs if possible. I have another appointment next week with my doctor to discuss progress and next steps.

At this point, I guess my biggest question is.... how long do I continue to deal with what I'm dealing with, before going down the next path? To be honest, the worrying and emotional toll of thinking about that aspect are far worse than the actual symptoms I'm dealing with at the moment.

I know this takes time...... but at one point do you take it to the next stage? Are the immunosuppressant or biologics really frequently the course if your issue is limited to just proctitis?
Posted 6/21/2018 5:18 PM (GMT 0)
Sorry to hear you are still struggling. I'd give any new treatment 3-4 weeks time to work and then try something else.

Why are you afraid of immunomodulators and biologics and want to avoid them at all costs? The fact remains that proctitis/rectal inflammation is always our most severe, first to appear, and last to heal inflammation which can be darn stubborn. Having a proctitis doesn't mean you get an easy-pass at this whole UC thing. Proctitis patients do sometimes need immunomodulators and biologics, and at times they are unavoidable, and you might just be in denial and trying to avoid the completely unavoidable (a futility). Delaying treatment can result in a bad quality of life, making excuses for not doing things, and letting life pass you by in a blur while you resist what's needed. Quality of life is all we have with chronic illness, having a good QOL is essential, and something we have to fight for and that might mean an escalation in our treatment to keep pace with our disease progression in severity.

When treating an UC, you first try anti-inflammatories (the mesalamines/5ASA) and if that is not enough, then you take the immune system down a couple of pegs with some mild immunosuppresion (6mp/imuran/azathioprine and/or biologics: remicade/humira).
Posted 6/21/2018 5:30 PM (GMT 0)
Am I in denial? Am I wanting a "free pass"? Perhaps... but I'm also the type that has a tendency to blow things a bit out of proportion. It's hard for me to grasp because on a scale of 1 to 10, my symptoms right now are probably a 2 or a 3. I have no issues with energy. I have no real physical pain. I'm not having more BM's than usual, there is just a little bit of blood every time I go. To be truthful, most times I wouldn't even notice it if I didn't stand there and study it for minutes at a time (I know, such is the life of a UC sufferer).

I have read about the side effects of immunosuppression - increased susceptibility to infections, cancers/lymphoma, etc., and I'm just questioning..... is what I'm dealing with currently really that bad to go down that path?

I'm also aware that proctitis is very stubborn and takes quite a bit of time to clear up. Just trying to reconcile in my mind the point in which I decide to go down the immunosuppression path. As my doctor explained, once I go down that path, there is no going back and that will be a part of my life for as long as I will live.
Posted 6/21/2018 5:59 PM (GMT 0)
There's some who wait until they're in a hospital bed before going on immunomodulators/biologics, there's some who use them for mild symptoms, or anywhere in between. It always comes down to personal preference (bottom-up-approach, or a top-down-approach).

A lot of gastereoenteroligists are proponents for the top-down approach, using biologics/immunomodulators much sooner to quell UC sooner, control it fast while it is limited in extent and severity, before it's a huge problem. Would you rather put out a fire when there's a small ember glowing or wait until the entire house is on fire? A swift, strong response early on can result in the least trouble, the best quality of life, and the least struggling and suffering.

There's merit and firm believers in the bottom-up-approach, always starting with mesalamines, and escalating slowly over time to use the least amount of meds first. There's benefits to staying on only mesalamines for those for whom that is sufficient for longterm remissions, lower risk etc.

In the end there's risk to everything, risk of uncontrolled, longterm UC inflammation causing a colorectal cancer, potential risk from a UC med, risk in doing nothing or something. I believe it is important to at least quantify what are the odds of side effects from immunomodulators and biologics. To put that risk into perspective, whether or not you need those medications today or not. Here's a good read/watch on it, that discusses the side effects and odds of them occurring from the Crohn's and Colitis Foundation of America:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

I've been on 6MP and Remicade since 2012, have experienced a remission, and have had zero side effects. Side effects are rare but serious when they do occur.

It always comes down to can you control your UC now with what you are doing. Give it more time and see. However, there's CRC risks associated with doing nothing longterm with inflammation being untreated.
Posted 6/21/2018 6:08 PM (GMT 0)
Thank you so much for your thoughts, reply, and the reference to the webcast item. I will definitely check it out...
Posted 6/21/2018 6:42 PM (GMT 0)
Can you try Rowasa enemas instead of the suppositories? Canasa never did anything for me, but the Rowasa enemas have helped me significantly over the years.
Posted 6/21/2018 6:55 PM (GMT 0)
I actually started with Rowasa enemas. I felt they were making the most progress, but even after 3 weeks there was mild bleeding. The week before I had my colonoscopy I was back on the Rowasa, but after the scope, my doctor switched me to the hydrocortisone.

For the longest time, I was just doing the enemas at night, nothing during the day. I felt like I needed an extra dose during the day, and that's what I'm doing now (just hydrocortisone at night, and Canasa during the day).

These have all helped, just nothing has cleared it up completely.
Posted 6/21/2018 8:00 PM (GMT 0)
Over the years I learned that it's not the scope that makes me flare it's the biopsies they cut out especially if they take them from my rectal area. I flare every time and it takes weeks to heal. So when I get a scope now the first thing I do after is a probiotic enema and it prevents it from getting very severe.
Posted 6/21/2018 8:27 PM (GMT 0)
Ah darn. I hope you find something that helps you get into remission soon. This is definitely a frustrating disease, to say the least.
Posted 6/21/2018 10:23 PM (GMT 0)
I wondered if the biopsies triggered my flare, or if it was just the prep. That prep seems harder and harder on my system every time.

I’ve never heard of probiotic enemas... is this an over the counter item or does your doc prescribe them?

I really do appreciate everyone’s thoughts. It helps to know I’m not alone (wish none of us were in pain or misery) and it’s always good to hear what works for other people.

I have had many ups and downs with this the last few months. I’m just thankful my symptoms are not too bad right now and I’m working very hard on the mental aspect. I just need to educate myself much more on the immunosuppressant drugs and/or biologics before I go down that path.
Posted 6/22/2018 12:30 PM (GMT 0)
"I’ve never heard of probiotic enemas... is this an over the counter item or does your doc prescribe them?"

Lots of things tried here are homemade. Just about anything that can be put up there has been tried here. I bet they just reused a fleet-enema, or reused a rowasa-enema bottle. Cleaned it out good after use, sterilized, mixed probiotics in a liquid suspension, and administered before bed. If you're so inclined, you can try making one. The caps screw off of most enemas bottles.

"I just need to educate myself much more on the immunosuppressant drugs and/or biologics before I go down that path."

Often the mental hurdle is the hardest to jump over when considering the next-level of treatment whether that is immunomodulators, biologics, or even a surgery. There's horror stories in everything, whether it is the black-and-white clips in infomercials of someone struggling to use a mop, reviews online for products, for medicines, and for everything out there. It's true that bad results happen, but healthy to ask what are the odds of it (if it's one in a thousand, and less than 1% then it's unlikely to occur)? Never easy decisions. Cheers and good luck, whatever you decide!

Post Edited (iPoop) : 6/22/2018 6:33:13 AM (GMT-6)

Posted 6/22/2018 5:41 PM (GMT 0)
cpaarchie....Do you have the results of your biopsies from that c-scope?

q
Posted 6/23/2018 2:28 AM (GMT 0)
Nothing of significance. Ulcerative Proctitis. My doctor is “not too concerned”. He wanted this current treatment (Canasa twice a day now, done with hydrocortisone) through the Fourth of July....
Posted 6/23/2018 2:40 AM (GMT 0)
Might live dangerously tonight. Throw a probiotic in a rowasa enema.... lol. I’m at the point of putting any concoction up there.
Posted 6/23/2018 3:02 AM (GMT 0)
Lol. I would try the Rowasa again before a homemade enema, but good luck if you try it
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