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proctitis what have you done

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Posted 3/2/2017 4:46 PM (GMT 0)
Hi All

I have posted before but this is my situation. I have mild proctitis which was in remission last summer (dx last year after a bout of C diff) due to 1 Canasa per day. I started having issues this past fall and doubled the Canasa. I also tried Lialda and 1 Canasa but neither combo put me completely back in remission. I still only have 1 Bm a day but my issues are more bloating/left side pain and gas. I do see blood when things get out of hand. I had a repeat sig scope in December which showed mild proctitis limited to rectum. I had a scope in August that was proctitis but so mild that my doc had to really look hard for it. So despite the double Canasa in the fall the proctitis had worsened. I had been on Cortifoam for 8 weeks until last week until my doctor told me to wean to every other day for a week (using 2 Canasa per day instead) and then just use Canasa. I didn't see bleeding on cortifoam but the bloating and gas pains never really disappeared. This week my morning Bm;s are now liquid w/blood and mucous. I placed a call out to the doc and used Cortifoam this morning instead of Canasa. I had asked about ASA enemas but he said they work slower than cortifoam. Is this a bad sign that I cannot knock this mild proctitis into remission? What other things have you done for proctitis? I don't know what the GI will say but he mentioned entyvio as a future possibility if I don't respond to meds. I cannot tolerate oral Lialda.

T
Posted 3/2/2017 5:22 PM (GMT 0)
If you can't tolerate Lialda, ask for Apriso. No biggie if the mesalamine enemas take longer.....ask for the 4g enemas. That shouldn't be a reason for not prescribing them for you.

Have you had stool sampling done?

Liquid bms means your inflammation is now higher...unless there's something else going as well.

Are you on probiotics?

q
Posted 3/2/2017 7:47 PM (GMT 0)
I guess I should say loose BM but I've had this before and have had a colonoscopy and 2 sig scopes since last April and all have confirmed rectal involvement only. In December the inflammation was between the 5cm and 20cm area. My sigmoid and up looked normal. I am getting a test for SIBO next week due to the bloating and gas but somehow I feel that is related to the proctitis. My doc thinks its 2 separate things but he also was convinced that the cortifoam would be plenty strong for my mild proctitis. I had multiple pinpoint superficial ulcers in December but a better scope in August. I have tried probiotics in the past and they caused more gas and pain for me. I have had +pcr tests for C diff but negative for toxins with this type of liquidy BM. I am just getting discouraged that I cannot get back to remission. I will ask about the enemas too if he calls me back. I am also going to see a therapist because its really getting to me. I've had GI issues since September of 2015 now. Quincy.. I see you take antidepressants... do they help? Also how long have you been in remission?


T
Posted 3/2/2017 11:56 PM (GMT 0)
Having proctitis doesn't necessarily mean you get an easy pass on UC. As the rectum is often the most stubborn area to heal. I would try 4.0 gram meslamine enemas (also known as rowasa or pentasa enemas) and 4.8 grams of oral mesalamine (asacol, lialda/mezavant, delzicol, or pentasa). These are much higher doses than what you are taking with Canasa. Try them and see if they help you.

Yes, mesalamine takes 2-3 weeks to work, sometimes quicker. Steroids, such as Cortifoam, work much faster but are a temporary relief and your symptoms will likely return when you discontinue it. Mesalamine can be used indefinitely, so it is definitely worth the wait to see if it will work it's magic and put you into a remission.

It's a bit premature to talk entivyo. I'd consider immunomodulators (imuran/azathioprine or 6MP) at a low dosage if the increased mesalamine dosages do nothing after 2-3 weeks.
Posted 3/3/2017 12:18 AM (GMT 0)
Thanks well I got the doctor to order the Rowasa to use in the PM and cortifoam in AM for now. He mentioned Uceris but then changed his mind. I had horrible cramping and urgency with Lialda and I am not sure why. I asked to try a different oral mesalamine but he mentioned a sulfazalide (not sure I spelled that right but its the old type of med) as a possibility as well. For now I am going to try the 2 rectal meds Rowasa /cortifoam and if they don't work then try something oral. He said he would not advance my treatment unless we did another scope and he saw actual ulcers etc. Thanks for mentioning the easy pass on UC because sometimes I feel as if he assumes I should responding better due to the mild condition of my scopes. He also doesn't think I should have the bloating and gas that I have with just proctitis. He suggests the fodmap diet and I'm getting an SIBO test next week.

T
Posted 3/3/2017 4:15 AM (GMT 0)
Let us know how how you're doing on the mesalamine enemas.

q
Posted 3/3/2017 4:27 PM (GMT 0)
Can you please send me tips on the rowasa administration? Also is it better to use in the AM after my only BM? I do work from home so this is possible. Is there cramping involved?

Thanks
Posted 3/3/2017 4:47 PM (GMT 0)
Sure here's sone from our Resources thread at the top of this forum.

Tips for using meslamine/rowasa enemas:
  • When you first start using enemas, use them in the bathroom very close to a toilet as they can come up very quick and unexpected. As you get better at them, and more confident, you can administer them in bed.
  • Add extra Vaseline (petroleum jelly) to the tip of the enema.
  • Warm the enema up to body temperature before administering. Put it in a pocket for a while before using, or warm it up under an armpit.
  • Squeeze all of the air out of the bottle before administering. You do not want to inject any air into your bowel as it will both be uncomfortable and make it likely you will need to urgently evacuate the enema fluid.
  • Lay an old towel down as any drips of the enema fluid can stain clothing, carpet, etc.
  • Use one of the positions described in the instructions.
  • Administer the enema slowly, too quickly and you will be less successful. If you wish, you can do one half the bottle first, wait a few minutes, and then administer the rest.
  • Stay reclined on your left side for about 20 minutes to allow the enema fluid to be absorbed. Retire for the night.
  • It takes practice to hold the enema in for 7 hours. Do not get discouraged, and keep trying. Even if you evacuate part of the enema, some will likely remain and heal you. As you heal, it will be easier to retain them for longer lengths of time.
Posted 3/4/2017 2:48 AM (GMT 0)
I have a question about the enemas. Never tried the Rowasa. But I had to do the 2 saline enemas before my sigmoidoscopy, and I couldn't take more than maybe 1/2 of the first one. So much cramping and pain I couldn't stand it, so I thought maybe if I go ahead and release that and relieve myself, I could then try to do the rest. OH NO! sayeth my butt! Absolutely could not stand it the pain and the burning. Ended up with cramps so bad I had to get in the bathtub and sit in the hottest water I could stand for about 30 minutes. So naturally I am hesistant about trying another enema. I'm assuming the part of the pain and burning was from the saline solution? Is the Rowasa gentler?
Posted 3/4/2017 3:24 AM (GMT 0)
do you have rowasa enemas on hand FG ?
Posted 3/4/2017 5:26 AM (GMT 0)
No don't have Rowasa nor has dr. prescribed it. Canasa seems to help when symptoms are really bad (doesn't take away inflammation though, but does stop the blood), but everyone here swears by the Rowasa as being so much better, I've considered asking for them. I'm just curious.
Posted 3/4/2017 6:29 AM (GMT 0)
FG.....don't confuse a purging enema with a retention one.

q
Posted 3/4/2017 2:24 PM (GMT 0)
certainly FG i would ask for them - the likelihood is that you will have the usual minor problems associated with the enemas, not what you had before - those saline enemas as quincy said, are an entirely different deal -

most problems with the rowasa are the learning curve to using them, and keeping them in - both usually alleviated with time and practice -

give them a go - your butt will thank you smilewinkgrin
Posted 3/4/2017 2:30 PM (GMT 0)

FlowersGal said...
I have a question about the enemas. Never tried the Rowasa. But I had to do the 2 saline enemas before my sigmoidoscopy, and I couldn't take more than maybe 1/2 of the first one. So much cramping and pain I couldn't stand it, so I thought maybe if I go ahead and release that and relieve myself, I could then try to do the rest. OH NO! sayeth my butt! Absolutely could not stand it the pain and the burning. Ended up with cramps so bad I had to get in the bathtub and sit in the hottest water I could stand for about 30 minutes. So naturally I am hesistant about trying another enema. I'm assuming the part of the pain and burning was from the saline solution? Is the Rowasa gentler?

Saline enemas contain ALOT of liquid and are meant to purge quickly. Rowasa contains a comparatively small amount of liquid and are therefore a lot easier to retain. It's like comparing tangerines to watermelons.
Posted 3/4/2017 6:45 PM (GMT 0)
I used the Rowasa for the first time last night. It felt nothing like the saline enemas that are used for sig scope prep ( I could barely hold those). I held the Rowasa without a problem and it was easy to use because I followed the tips given to me. I don't know how well I slept however because of the full bowel feeling. I took something for sleep knowing that I might have a gurgly bowel during the night but it was more of a full feeling than gurgly. Does this get better with time? I did not see any blood this am and was surprised there was no urgency to get the content out this morning. I got the 4gms prescribed as suggested on here and am hoping this is finally my ticket to some peace. I feel like the enema hit the spot if you know what I mean. I will keep you posted as to my progress so it may help others. I am using cortifoam in the AM so the true success won't be known until I wean off the foam.
Posted 3/4/2017 8:25 PM (GMT 0)
Good news. Fall asleep on your left side if you can. If you remain in that position 20 minutes or more then the most possible enema fluid will be absorbed.
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