Hi all! I’ve been reading around the forum on this topic but am in a slightly different situation with my question than others who’ve asked about it.
I stopped bleeding, mucus, and urgency (that had been ramping up since Nov ‘17) by mid-Feb of this year using mesalamine enemas nightly and suppositories daily. I actually felt great for a week or two and then all of a sudden started having lower abdominal bloating, tenusmus, lower left sided pain, and broken stools on this regimen. My doc told me it might be IBS and he wouldn’t treat it, so I had to live with the brutal pain and bloating.
In March a weird series of non-colon related events led to stopping all mesalamine and going on 30mg of pred. I felt amazing almost right away — the bloating stopped, formes stools, no pain — not even the random reveal shooting pain I’ve always had from time to time. I tapered to 25mg just fine, but at 20mg I saw a trace of mucus and decided I’d reintroduce the mesalamine because I had no maintenance med to help me taper.
I’ve noticed that on days after using the mesalamine (enema or suppository) i have experienced yellow mucus passing alone, broken up BMs, more frequency, and the bloating accompanied by pain on the lower left side. Keep in mind I’m still on the prednisone. I tried one day off the mesalamine and had none of that. Is it possible that the thing that got the bleeding and mucus to stop initially is now causing these other symptoms?! Has anyone had mesalamine cause severe bloating and pain + the bad colores mucus? And if so, how did you proceed maintenance-med wise?
Unfortunately I have a conservative doc who doesn’t want to put me on stronger meds because my inflammation is limited. Of course I’d rather stay away from them too. But given the choice between that and feeling like an inflated balloon in severe pain on a daily basis, I’d take the meds!! Waiting for a referral on a new doc to come through...
Dx mild proctitis 2012; 25 cm moderate-severe inflammation Dec 2017.
Current meds: Salofalk suppository AM; Salofalk enema PM; Entocort enema PM (supposed to taper)
Suppléments: curcumin, Vit D, Calcium, B12
Diet: avoid gluten, dairy, red meat, alcohol, caffeine, sugar, and beans
Tough as you are simultaneously on pred and mesalamine.
Mesalamine intolerance are most common on initial, first use of it (about 5% of UC patients have to discontinue mesalamine due to adverse affects from it). It can happen at any time though, but is much more rare. So it's not impossible to develop an intolerance later on, just not common. Not sure you have one, but you are right that it is a bit suspicious and odd.
Can you try a different formulation of mesalamine rectal?
Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa
You might have UC if you leave the house wearing socks and return with none... emergency tp...
Mesalamine intolerance are most common on initial, first use of it (about 5% of UC patients have to discontinue mesalamine due to adverse affects from it). It can happen at any time though, but is much more rare. So it's not impossible to develop an intolerance later on, just not common. Not sure you have one, but you are right that it is a bit suspicious and odd.
Can you try a different formulation of mesalamine rectal?
Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa
You might have UC if you leave the house wearing socks and return with none... emergency tp...
Post Edited (iPoop) : 4/11/2018 7:10:50 AM (GMT-6)
I’ve onlt ever been on Salofalk so didn’t realize there were brand differences. Good idea. I’ll do some research and ask my doc about it. If you have any specific experience with different brands, is there anything you’d recommend looking out for in terms of formulations/ingredients? I’m in Canada, so I’ll see what we have here. Thanks!
Dx mild proctitis 2012; 25 cm moderate-severe inflammation Dec 2017.
Current meds: Salofalk suppository AM; Salofalk enema PM; Entocort enema PM (supposed to taper)
Suppléments: curcumin, Vit D, Calcium, B12
Diet: avoid gluten, dairy, red meat, alcohol, caffeine, sugar, and beans
Dx mild proctitis 2012; 25 cm moderate-severe inflammation Dec 2017.
Current meds: Salofalk suppository AM; Salofalk enema PM; Entocort enema PM (supposed to taper)
Suppléments: curcumin, Vit D, Calcium, B12
Diet: avoid gluten, dairy, red meat, alcohol, caffeine, sugar, and beans
You are taking about rectal-route mesalamine, which often has sulfite/sulfates as preservatives which is an allergen to some.
1.) You could try a mesalamine rectal foam instead of the meslamine enema/suppository? (sulfite-free)
2.) You could try an oral mesalamine, like pentasa/mezavant/asacol/colazal? (sulfite-free)
3.) Ask your pharmacist if there are other options besides salofalk? Like different brands? Is there a sulfite-free version available in Canada? Here we have sfRowasa which is sulfite-free...
1.) You could try a mesalamine rectal foam instead of the meslamine enema/suppository? (sulfite-free)
2.) You could try an oral mesalamine, like pentasa/mezavant/asacol/colazal? (sulfite-free)
3.) Ask your pharmacist if there are other options besides salofalk? Like different brands? Is there a sulfite-free version available in Canada? Here we have sfRowasa which is sulfite-free...
Post Edited (iPoop) : 4/11/2018 7:14:20 AM (GMT-6)
No rectal foam in Canada, but there is Salofalk 2g liquid and Pentasa 1, 2, and 4g. Don't know if there is sulphate free.
The issue could be the extra liquid in the sigmoid and rectum.
Stop using them and stick to the steroid till you heal more.
Or....you can try half an enema and see if that changes anything, or a lower dosage of mesalamine 2g salofalk.
The Pentasa is 100ml liquid compared to 60ml liquid Salofalk..
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!
The issue could be the extra liquid in the sigmoid and rectum.
Stop using them and stick to the steroid till you heal more.
Or....you can try half an enema and see if that changes anything, or a lower dosage of mesalamine 2g salofalk.
The Pentasa is 100ml liquid compared to 60ml liquid Salofalk..
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!
Post Edited (quincy) : 4/11/2018 10:23:03 AM (GMT-6)
Sorry if these seem like stupid questions but we may be getting ahead of ourselves here.
1. Do you expel all of the air from the bottle before using it?
2. Are you sure the liquid in the morning is actually mucus and not just liquid mesalamine mixed with whatever else is in your colon?
Medication intolerance can be tricky with UC since the disease has so many normal ups and downs.
In the a.m. I always pass liquid first when using enemas the night before. This is more urgent than a normal bowel movement. Stools usually come later in the morning and are also broken up since there is so much liquid from the enema.
I don't have the whole story but I find it odd that your doctor assumed you have IBS after only two weeks of treatment. Bloating and pain are signs of a flare for me. I wouldn't assume they are caused by the medication but you should keep a journal and try stringing together several days on then several days off the enemas.
Diagnosed Proctosigmoiditis (UC) February 2015
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, Curcumin, VSL3 occasionally, One a Day Multi-Vitamin
Did SCD for about 2 years but lost willpower. Want to get back to it at some point.
1. Do you expel all of the air from the bottle before using it?
2. Are you sure the liquid in the morning is actually mucus and not just liquid mesalamine mixed with whatever else is in your colon?
Medication intolerance can be tricky with UC since the disease has so many normal ups and downs.
In the a.m. I always pass liquid first when using enemas the night before. This is more urgent than a normal bowel movement. Stools usually come later in the morning and are also broken up since there is so much liquid from the enema.
I don't have the whole story but I find it odd that your doctor assumed you have IBS after only two weeks of treatment. Bloating and pain are signs of a flare for me. I wouldn't assume they are caused by the medication but you should keep a journal and try stringing together several days on then several days off the enemas.
Diagnosed Proctosigmoiditis (UC) February 2015
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, Curcumin, VSL3 occasionally, One a Day Multi-Vitamin
Did SCD for about 2 years but lost willpower. Want to get back to it at some point.