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Proctitis and healing enemas questions

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Posted 8/6/2018 1:01 PM (GMT 0)
Hi iPoop! I am in Australia. Don’t think that’s the same option here! Name of the one I have is not uceris but same drug...cortiment...they haven’t included it in the pbs (public benefit scheme) yet. So it is around $170 a box of 30. Fingers and toes totally crossed!
Hitting it from every angle now! 😬
Posted 8/7/2018 11:44 PM (GMT 0)
anyone know how long it “should” take that combo to start showing it’s working? A few weeks? My head is swimming today! 😅
Posted 8/8/2018 4:49 AM (GMT 0)
Just go with using them....your butt will tell you, for it doesn't follow a time schedule.👍

q
Posted 8/8/2018 12:42 PM (GMT 0)
I'd give any change in treatment 3-4 weeks for initial signs of improvement, and then reassess progress then (When showing signs of improvement giving it another month is worth it, otherwise try different meds and dosages). Steroids are known to be faster can work within days, take a week or more (depends if the steroid is dosed appropriate for your current inflammation extent and severity). Waiting much beyond 4-weeks is pointless for mesalamines, steroids, if there's not at least some initial sign of improvement.
Posted 8/8/2018 2:32 PM (GMT 0)
I used steroid foam enema for two weeks (a year after diagnosis, and given by another doctor)....they worked well. But I was in a full flare, so improvement was vastly noted. I continued after that with nightly Salofalk once my doc got back to rx them again.

Keep us updated....😊
q
Posted 8/13/2018 11:11 AM (GMT 0)
Thanks folks. Defo sewing improvement but also still have some pink when I wipe so nowehere bear 100%. Been a week on budenoside and the mezavant for 7 days. Have to check in with my doctor in one more week. Keeping all things crossed!!
Posted 8/13/2018 1:17 PM (GMT 0)
Healing is a journey, much like in Lord of the Rings, it's going to take a long while ;-)
Posted 8/13/2018 1:21 PM (GMT 0)
Hahahaha! I love you humour John! I do think I am “healing” but my butt is not in a hurry this time to jump to symptom free. I am starting to feel like the never ending story may be my movie analogy! Thanks for making me smile!
Posted 8/13/2018 1:41 PM (GMT 0)
LOL John!
Slow increments of healing is frustrating. Hang tough and let it do its thing.

Are you on probiotics? Fibre supplements?

q
Posted 8/15/2018 12:08 PM (GMT 0)
Hey Quincy, neither atm. Have looked at some probiotics but no clue what to pick and when to take!
Posted 8/16/2018 2:11 AM (GMT 0)
Since yesterday my tummy is making VERY loud noises! Rumbles and growling like a jungle. Still blood and mucus but feel completely normal. Obviously still flaring but is rumble and growls a bad sign? Eek. Perhaps a lion moved in.

Post Edited (Mamatomypeas) : 8/16/2018 7:38:06 AM (GMT-6)

Posted 8/16/2018 6:24 PM (GMT 0)
Yep....lion syndrome has hit!
What is stool consistency like? And when and how much is blood and mucus?

I use what's in my signature as far as brands, but lately because of availability, I'm using the Advanced Gut Health Women's 50 billion.

Fibre supplements are psyllium capsules taken with meals. I started with one at breakfast for a few days, then added one to supper....increasing as such till taking 6 with each of both meals.

q
Posted 8/16/2018 11:05 PM (GMT 0)
At night it is little balls coated in a little red blood.
Morning first I have a bit of the enema and pinky when I wipe ( a few times drip blood). Then a big soft but formed poo.
It seems to be the last of the symptoms but obviously not a great one to have.
Not sure what the doctor will say Monday. He seemed to want it to be stopped completely by the next check up. Hopefully it is healing just really slowly!
Will hunt for the probiotics. Thanks quincy.
Posted 8/17/2018 8:43 AM (GMT 0)
I sometimes have snaky poop too but not too mushy and I can’t see blood in it. Average 2 times a day total output (BMs including the morning one) ...gosh it’s funny typing these things!
I just don’t know when to know if drugs aren’t working. Changed the orals 12 days ago...I am worried about what my GI is going to say next if bleeding stays but don’t think this is a worrisome flare. But then again, who knows! I think I may just have caught it well into the flare.
No one has done a look see yet so maybe that’s next!
Posted 8/17/2018 12:19 PM (GMT 0)
Sounds like there's some mild inflammation remaining, likely limited in extent to just the rectum: seeing mucus balls with hints of blood, and hints of blood on your tp when wiping. You're saying pink, so I'm guessing it's just a very limited amount of blood passed.

What's your symptoms aside from that (# of bms a day?, any urgency?)? I'd guess that other than the blood you're doing pretty well.

There's two courses of action: first, give it another month without changes or, second, up the rectal route dosages (i.e., two enemas a day).

Are you still on the steroids (budesonide oral and budesonide foam)? And if so, for how much longer? Often they're limited to 8-weeks...
Posted 8/17/2018 12:32 PM (GMT 0)
Hi ipoop, I am still using the steroids. Not sure about the oral (think it was for three months) and the rectal I am at 6 weeks but about to refill the script for another box of 2 x 14. He wanted me to taper hem when blood stops but check in on Monday. I asked about thinning tissue and my GI said not to worry about that right now...
It’s pink in the morning and reddish at the end of the day (there were a few drops of red last night though)
No urgency (other than the first one when I get up in the morning but I can hold as needed) usually 2 a day for BM.
I am feeling quite anxious about it all. Was not worried for a while there but as things drag on I feel down about it and a bit scared of the what now part of things. In fact a little scared to go to the toilet before bed as I don’t want to see blood.
Posted 8/17/2018 1:04 PM (GMT 0)
Sounds like you're doing well.

Chronic illness is great on keeping us guessing, we all worry about the "what if's," and therefore UC causes our anxiety to spike. We read our toilet bowl like a fortune teller with a bowl of tea leaves, with little accuracy but anxiety. My day was often made or ruined after my first couple morning bms, when flaring. Healing is never linear, we have good poops, bad ones, and it is truly random and frustrating to us. So, what you're experiencing is something 99.9% of us can relate with and is to be expected. Best advice there is focus on right now rather than worry about 100's of possible outcomes. Right now you're doing well.

In the end, only time will tell whether what you're doing will work. Try and be optimistic and hope for the best, but also be pragmatic about it all with a backup plan B. I'd expect your doctor to say: stay the course. However, you should be asking what is my "Plan B," should this not work. Know your options, what is an appropriate treatment for your symptoms and have a plan. Much like a game of chess, the best players are planning many steps ahead of now. To that end, beginning to think about stronger medications can't hurt, if you are unable to get off the steroids without returning to a flare (nothing to be afraid of but rather be realistic about, understand, and wrap your head around). You may not ultimately need them, but no harm in knowing, asking, and coming to terms with.
Posted 8/17/2018 4:52 PM (GMT 0)
So.....just to clarify, when did you start the salofalk?

q
Posted 8/17/2018 11:25 PM (GMT 0)
The enemas? I am just finishing my 7th box so 7 weeks of enemas.

Post Edited (Mamatomypeas) : 8/17/2018 5:56:05 PM (GMT-6)

Posted 8/18/2018 5:17 AM (GMT 0)
Still early in the treatment....this is the most difficult part to treat.
q
Posted 8/18/2018 10:34 AM (GMT 0)
Thanks Quincy. Yes I suppose early but just so much quicker my first flare. I need to stop comparing!

iPoop, great advice. Thank you friend.
Posted 8/18/2018 4:56 PM (GMT 0)
Nice analogy John!

Mama....You're also more into an established disease...so comparing first flare will only frustrate you more.

My experience was that my doctor pushed for me to stick with the mesalamine.....his most encouraging word was "patience".
I had lots of tears and mega frustration through that symptom phase.

There are many options of rectal meds and all can be used in combo. Plan B is good.....but I say stick this one out till you see what it does, because you arent getting worse.

I strongly suggest you request that your GI take an in-office look-see, and have that assesed visually. Then you can understand what's happening better.

Add a fibre supplement to meals and definitely probiotics.

Keep us updated for sure. Hang tough....patience ☺

q
Posted 8/19/2018 11:22 PM (GMT 0)
So I had a great weekend with a lot less blood. None on toilet paper and just a speck on the end of one movement. Then today I wipe and it’s there. Roller coaster loop de loop.

It still seems positive (ish) that this weekend was the best yet but I HATE the letdown of seeing it again despite all the positive self talk I am doing.

I see my GI again mid september and absolutely will ask him to have a look up there.

I have an appointment to check in with my GP today...just to see how I am travelling on new meds I think...

Quincy, with combined rectal meds, you mean different from enema/foam pm/am I am currently doing? That sounds promising.

X

Post Edited (Mamatomypeas) : 8/19/2018 8:13:54 PM (GMT-6)

Posted 8/20/2018 5:32 PM (GMT 0)
The learning phase is the worst......and I'm with you regarding the let-down. Positive self-talk regarding what? It is what it is, so acceptance might be your best bet.
You have a plan regarding meds and you're healing. Let me emphasise.....healing the slow method is what you're doing now, and it's a process you will understand as it goes on. Think tortoise and hare.....

Remember it all, for once you are doing well...tapering or finally in remission (and remaining on maintenance meds)....first symptoms of a flare in progress will be the last symptoms of what you went through to get to said remission. The bleeding is certainly NOT the last symptom, you have more healing yet to go.

Be ticked, have your emotions up and down, and don't expect one improvement to be static and life is all rosy afterward (not a bleeding pun) because you will just be disappointed in the end (pun intended).

Yes, there are different formulations of steroid and mesalamine rectals, and combinations depending on symptoms can be used.

You are improving.....yay!
hugs,
q
Posted 8/20/2018 9:57 PM (GMT 0)
Oh yes, that was worded funny! I meant of acceptance, keeping positive and not getting hung up on a single bowel movement.
Your advice on here has been a lifeline! It’s not something that you share with mates over dinner and it’s no nice to have pros who have been here before!
Will update soon and thanks again Q! X

Post Edited (Mamatomypeas) : 8/20/2018 6:03:29 PM (GMT-6)

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