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Proctitis Help

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Ulcerative Colitis
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 6/26/2020 7:12 AM (GMT -8)
Hi,

I was recently diagnosed with ulcerative proctitis in April, originally given Saloflak suppositories 1g they then upped the dose to Saloflak enema 4g as the bleeding was still there. My main symptom is bleeding and sometimes diarrhea. I bleed most times when I have a BM, sometimes quite a bit, I feel fine have no cramps etc but can’t seem to shift the bleeding. He also prescribed saloflak granules which I started taking today.

Any tips on how to reduce the bleeding or does the bleeding take a some time to heel?? It can definitely bring you down when you feel nothing is working..

Appreciate any help,
Thanks!
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Michelejc
Forum Moderator
Joined : Jan 2011
Posts : 2899
Posted 6/26/2020 8:53 AM (GMT -8)
Welcome. I know for me it took awhile for the bleeding to stop. I never had cramps or pain either.
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2620
Posted 6/26/2020 9:41 AM (GMT -8)
Time is just about the only option we have. Since you don't have urgency or pain, I think just stay the course and see what happens with the oral meds. If it really doesn't improve you could ask for a rectal steroid med to alternate with the rectal mesalamine, but I don't think you are there yet.
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 6/26/2020 10:29 AM (GMT -8)
Thank you both for your help. I suppose I just need patience, you just assume after a week or two you should see your symptoms get better.

I am trying to remain stress free aswell as we had to postpone our wedding a few weeks back as a result of the ongoing virus, I think stress definitely triggered it. I’m taking vitamin D and a probiotic also.

Is there anything you would recommend with diet for ulcerative proctitis? My consultant says it’s nothing to do with diet but I wonder.

Thanks
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Michelejc
Forum Moderator
Joined : Jan 2011
Posts : 2899
Posted 6/26/2020 10:38 AM (GMT -8)
In my opinion, diet will effect the flare you already are in. Diet does not cause the flare. When I was flaring I ate very light but food is different for everyone. What I eat with no issues might effect someone else.
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The_Swan
Regular Member
Joined : Jan 2019
Posts : 139
Posted 6/26/2020 12:51 PM (GMT -8)
For me with the Mesalamine enema it usually takes about two weeks for the bleeding to stop.
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 6/26/2020 1:30 PM (GMT -8)
Thanks @The_Swan I’ve been on the enema’s for just over two weeks and the bleeding is still bad. I thought last week there was an improvement but the last two days quite loose stool with dark red blood but I’m not experiencing cramps thank god.

My doc sounded confident these would work after 2/3 weeks if not he told me to take the oral Saloflak also but I can’t see that helping.

Thanks
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The_Swan
Regular Member
Joined : Jan 2019
Posts : 139
Posted 6/26/2020 3:26 PM (GMT -8)
I forgot to mention that usually my doctor puts me on enema twice a day untill the bleeding stops then once a day.
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quincy
Elite Member
Joined : May 2003
Posts : 33635
Posted 6/26/2020 8:22 PM (GMT -8)
Hi...welcome to the forum.

You also need to get on oral mesalamine as well. I don't agree it's a one or the other...full coverage throughout your rectum and colon. It can take months for bleeding to stop depending on how high and severe the inflammation is. Once bleeding stops...inflammation is still there that needs healing. As wdll....at this point, you can also add a suppository during the day.

Stay the course fairly...it takes as long as it takes. Easy for frustration and the feeling of no hope in sight to set in.

Keep in contact with us. Lots of info available for any questions you might have.

q
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 6/26/2020 11:17 PM (GMT -8)
Thank you so much for your reply! I’ve moved from the suppositories to the enema’s and yesterday I started taking the oral Saloflak also so I will take both enema and oral. Will the oral help if my inflammation is limited to the rectum??
The bleeding has been ongoing since March.

Good to know these things take time and definitely can be frustrating but nice to know I’m not on my own.

I’m fortunate that I don’t have cramps but the bleeding can be quite severe sometimes so hopefully after time with these meds they should clear up.
I have no problem retaining the enema so I hope that’s a good sign. My first BM this morning I did get the urge and it was loose-ish stool but no blood. The bleeding seems to be appear after the morning it’s like the medication wearing off.

Thanks so much 😊
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quincy
Elite Member
Joined : May 2003
Posts : 33635
Posted 6/27/2020 6:26 AM (GMT -8)
Firstly...were you diagnosed via colonoscopy or sigmoidoscopy?

Retaining the enema is awesome! It's much less of a struggle mentally and physically.

The Salofalk oral wont "treat" the rectum, but it will help curb further spreading upward.
The enemas will treat the rectum and sigmoid (and possibly further).
If you have possible dreams to get off meds...I suggest you change that for now. Make the oral a continual, stay on the nightly enemas till your flare is done... and symptoms do vary, so bleeding is not the only one, then taper to every second night. If all is good, then every third night....then stay st twice a week maintenance. I suggest this based on my own experience over 31 years.

Should things get stubborn, steroid enemas and suppositories can be added. There are lots of options and mixes with the topicals. I've only used steroid enemas once for 2 weeks in 1989. I know I'm fairly biased regarding 5ASA oral/rectal.

If the topicals fail...then you will have to step up into another tier of meds as addition.
The point of this treatment is to keep your UC as limited and best controlled as possible.
In saying that, some with limited proctitis have had colectomies because of its unrelenting stubbornness.

Are you in Canada...I ask because you're using Salofalk.

q
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 6/27/2020 7:29 AM (GMT -8)
Hi Quincy,

Thank you so much for your help.
I was diagnosed via colonoscopy in April. On my report I received back my colon is normal, inflammation was limited to the rectum.

Sometime before March I was only going to the toilet maybe twice a week and had a tiny bit of blood on TP the odd time I put it down to a cut as I used to strain a lot but looking back I presume this was the start of it? Didn’t think I was constipated as I had no pains and felt good.

No I’m actually in Ireland 😊 My consultant here prescribed Saloflak. Maybe the enema’s can take some time to work? It’s just frustrating because I have a fear it will get worse hoping it won’t.

Thanks,
Suzanna
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 6/27/2020 9:20 AM (GMT -8)
Also just wondering I have quite loud rumbling sounds going on aswell with my stomach when taking Saloflak did you notice that? Does it mean anything?
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16461
Posted 7/6/2020 4:18 PM (GMT -8)
Loud rumbling gas is common for us during flares. Sounds like a jungle down there for me sometimes, even hear monkeys and pumas if you listen closely. Totally normal for us, should get better as you heal.
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quincy
Elite Member
Joined : May 2003
Posts : 33635
Posted 7/6/2020 9:47 PM (GMT -8)
Susie...I apologise for missing this thread and not answering quickly. It's good you had a c-scope done.

Regarding the loud and grumbling...it does lessen as you heal, but many times during a flare and after using the enema, it has caused me discomfort through the night.
Dicyclomine definitely helps me.

Hang tough, it takes time for 5ASA meds.

q
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 7/6/2020 10:15 PM (GMT -8)
Thanks so much Quincy and ipoop for your help!

I now have a new dilemma since last week unfortunately, I’ve been having quite a lot of diarrhea out of nowhere I actually felt the Saloflak was really working for a few days then diarrhea and spasms/discomfort started happening before I had a BM.
Still experiencing it nearly a week on, struggling with it a bit as I thought things were looking up. I also am now finding it difficult to hold in the enema’s to which as I advised earlier had no prior issues. Do you think the enema’s are just not working now? I also take an oral Saloflak.

My GI prescribed me Pred if the diarrhea doesn’t get better. Should I take this or hang tight??

Appreciate any help as I’m totally new to this thank you 😊
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16461
Posted 7/7/2020 3:29 AM (GMT -8)
I really wish I could give you a simple solution to solve this for you. Unfortunately nothing is super simple and cut and dry with this illness. Its often confusing and you need to go with your gut feeling.

You can (in no particular order of emphasis):

1.) Change nothing and wait a week or two and see if it improves, giving the mesalamine longer to work. These aren't fast acting meds, results take weeks.

2.) Lower dose or cease the mesalamine for 48 hours to see if you are having an adverse intolerance to it causing the diarrhea and spasms. You should get dramatically better fast in this test, if an intolerance was present. Only 5 percent of us experience this, so not super common.

3.). Add the Prednisone now. Your narrative sounds like a flare getting progressively worse, like being able to retain the enemas now. Prednisone is fast acting sometimes working within days, can take a week or two.
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 7/7/2020 7:22 AM (GMT -8)
Hi ipoop,

Thank you so much for the detailed info! It’s extremely hard to know what to do as everyday my symptoms change with this disease. I’m going to try and do another enema tonight and see how I get on and may add the Pred (I’m hesitant to add).

Can your flare get worse even though your already in a flare and treating it?
My gut is telling me the enema’s are making the stool watery but maybe I just need to wait for it to heal again!

This is my first flare and finding it impossible to get out of 😔

I will keep you all updated how things go!

Thank you so much
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KV18
Regular Member
Joined : Aug 2014
Posts : 98
Posted 7/7/2020 7:46 AM (GMT -8)
Welcome to proctitis...although minimal as some have noted it is insanely stubborn, my first flare lasted 2.5 years and now in my second one I am currently in is coming up on 5 months still not in remission. I understand your frustration. Definitely try a steroid enema, what you are describing with diarrhea, happens to me on all 5ASAs...they make me way worse and give me insane diarrhea, its so bad. I would stop the meds and see if your stool go back to normal, altho people say its rare, I have seen so many people in these feeds like myself very in tolerate to those meds. Try a steroid enema, those helped me with some symptoms.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16461
Posted 7/7/2020 8:23 AM (GMT -8)
"Can your flare get worse even though your already in a flare and treating it?".

Yes, under treatment of a flare results in the inflammation spreading in extent and severity, which produces worse symptoms.

And just remember that healing isn't a linear path from flare to remission, with daily, stead improvement. Rather healing is like a rollercoaster ride full of surprise ups and downs. Normal to have a really good day immediately followed by a really bad day. Infuriating but normal. Looking at bm to bm or day to day comparison is meaningless a there's such wild variation. What you need to do is take a week to week look at your progress, ask yourself: "on average are my symptoms better, the same, or worse than last week?" If you're heading in the right direction you can say there was a sign of improvement, maybe less pain, blood, bms, or better consistency. Attaining a remission is going to take a month or three, no knowing for sure. Patience is key, being pragmatic about where you're at and what's working or not is key. As is contacting your gasteroenterologist to let him/her know about your progress or lack thereof (check in every 4-8 weeks at least).

If you're up crap's Creek without a paddle, pred will make you feel great again rocketship fast. Pred's colloquially called the devil's tic tacs for able reason, as most of us get side effects on it. It might give you temporary mood swings, increased appetite, insomnia, nightsweats, moonface etc. We all have a love/hate relationship with the dreaded pred. When I've taken pred it's been because my flare is worse than anything my pred side effects can do.

Steroid enemas or the budesonide oral pills (Uceris, Entocort EC) are a lot better on side effects. Maybe worth about asking about if pred worries you.
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quincy
Elite Member
Joined : May 2003
Posts : 33635
Posted 7/7/2020 11:32 AM (GMT -8)
Susie...how many times a day diarrhea? You just started the oral...how many mg total daily?

You did a stool sample kit? If not, request one.

q
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 7/9/2020 12:23 AM (GMT -8)
Hi Guys,

The diarrhea has been 2/3 times in the morning and 2/3 times around 8/9pm also I was getting up a few nights with it. I spoke to my GI yesterday and she advised me to start the Pred to try and get to calm down the flare as she said it sounded like it could be getting a bit worse and it’s being ongoing since April.

Weirdly enough I did start adding in the suppository during the day and felt during mg the day I was good. I also used it last night instead of the enema and I slept straight through and had more of a loose stool than diarrhea. I don’t know why but I feel like the suppositories work better than the enema, I know it doesn’t make sense.

I’m taking 3G oral Saloflak, my GI did say sometimes it can take up to 8 weeks for the orals to kick in, I’m only on them two weeks! When I look at the bigger picture I feel worse the last two weeks than I did back in April/May when I just started medication.

So I’ve started the Pred today wish me luck 😊
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quincy
Elite Member
Joined : May 2003
Posts : 33635
Posted 7/9/2020 8:23 AM (GMT -8)
Yes on the orals...at least a month to show some improvement. How many enemas left? You can ask for asacol foam to see if thats better. Lower dosage mesalamine.

I would hold off on the prednisone just because you will have to taper off over many months...
As well, steroid enemas are an option.

q
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susie far
Regular Member
Joined : Jun 2020
Posts : 65
Posted 7/9/2020 8:29 AM (GMT -8)
Hi Quincy,

I’m on my 5th week off enema’s and they seem to be worsening my symptoms, I did see an improvement for a few days after three weeks initially then I started getting diarrhea and pains. I’ve been on suppositories since the end of April also.

They’ve prescribed me two months of the Pred, every week I taper off a tablet. My GI thinks I should start it as I’m getting up in the middle of the night with BM’s and finding it hard to hold the enema’s where originally I had no issue for weeks with them.

What you think?

Thanks for your help..
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quincy
Elite Member
Joined : May 2003
Posts : 33635
Posted 7/9/2020 8:33 AM (GMT -8)
Your decision. And you've had stool testing done?
Covid test?

q
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