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Left sided colitis - looking for advice on mesalazine

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Ulcerative Colitis
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Left sided colitis - looking for advice on mesalazine  
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loulou82
Regular Member
Joined : Feb 2014
Posts : 76
Posted 3/21/2017 2:41 PM (GMT -7)
I have UC up to the splenic flexure diagnosed recently via colonoscopy. The Doctor wanted to start me on oral mesalazine the same day but when I explained the reaction I had to the mesalazine enema (diarrhea worsened and severe abdominal pain) he said I might not tolerate the oral mesalazine either. I am still waiting for my follow up appointment with a GI Consultant to start a proper treatment plan and my GP is concerned about the length of time this is taking. I have been taking predsol enemas for several weeks and recently the Dr who did my colonoscopy switched me to the budesonide enemas which I've had some difficulty with.

In the meantime my GP has contacted the IBD Nurse at my local hospital who is going to give me a phone call tomorrow. Apparently she wants me to stop the steroid enemas now, which I'm really nervous of doing because they have worked really well in stopping bleeding etc. And she wants to start me on Asacol orally but wants to check what my reaction was to the mesalazine enema first.

Just wondering what the best type of mesalazine is for left sided colitis and maybe that would have the least side effects?

From what I've learnt on this forum there are quite a few different types ie asacol, pentasa which I have been trying to read up on but cannot find any information on what the differences are between all the different types.

Sorry I am asking so many questions recently but this is all very new to me and I have received such excellent advice on here which I am very grateful for smile smile
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14285
Posted 3/21/2017 3:41 PM (GMT -7)
The mesalamine enemas contain sulfa as a preservative which is an allergen to some. The pills do not contain sulfa. You might very well have had a reaction to the sulfa than the mesalamine. After all, Sulfa allergies are more common then mesalamine allergies. So, I'd try the asacol or pentasa at a low dose as a precaution. Take one pill a day for several days, then take 2 and so on.
Moderator Ulcerative Colitis
John
, 38, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Mesalamine DR, and rowasa

UC causes complicated relationships with colons :::: we have trust issues ::::
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4348
Posted 3/21/2017 3:50 PM (GMT -7)
with left-side, later release, like lialda, might be a little better, but the one to try 1st is not clear-cut
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C
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Trixy's Got Butt Trouble
Regular Member
Joined : Jun 2007
Posts : 356
Posted 3/21/2017 4:25 PM (GMT -7)
I have an allergy to sulfa, I bet that's why the enemas aren't working for me anymore. Here I thought it was the generic brand that I was getting. Rowasa does come in a sulfa free formula - at least I remember seeing it one time. I have yet to get my hands on it.
UC, moderate-sever
4800 mg Asacol & Rowasa-stopped working
Remicade-Caused Drug Induced Lupus
200mg Imuran
40mg Nexium
Prednisone @ 20mg/day
LDN - 4.5/day
Vitamins D, B12, C
Probiotic 2x's/day/10billion CFU's
Iron Pill
Supplements by Standards Process prescribed by Chiro based on weekly testing
Gluten egg dairy soy corn free diet
Homemade Fermented Foods
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Fletch10
Regular Member
Joined : Feb 2017
Posts : 253
Posted 3/21/2017 5:04 PM (GMT -7)
I've recently reacted to both the enemas and oral 5-ASAs, so it was the mesalamine that caused my reaction, but for what it's worth, balsalazide (Colazal) is supposedly very effective for treating the left side.
--
F, 39. Diagnosed Feb. 8, 2017 - mildly active UC through sigmoid colon
Prednisone currently tapering, at 25mg (tapering 5mg every 7 days). Cortifoam 2x daily.
Previously tried Rowasa and Balsalazide with bad reactions - evaluating next steps re: meds.
Norethindrone (mini-pill)
Diet: modified low-residue, strict gluten-free/dairy free - daily multivitamin and D supplements. Considering VSL#3.
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loulou82
Regular Member
Joined : Feb 2014
Posts : 76
Posted 3/22/2017 5:47 AM (GMT -7)
John and Trixy, yes I'm hoping it's the sulfa I had a reaction to and not the mesalazine. Good idea to try a low dose initially to see if I can tolerate it and then build it up, I'll mention that to the IBD Nurse when she calls later. DBwithUC thanks, I'll ask the IBD Nurse about Lialda.

Fletch10 sorry to hear you reacted to mesalazine. Do you mind me asking what reactions you had? For me with the enema it made my UC worse. I will ask the IBD Nurse about basalazide. I'm a bit gutted they want me to stop the steroid enemas because they really help. I've only been taking them for 3 weeks.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14285
Posted 3/22/2017 6:03 AM (GMT -7)

Trixy's Got Butt Trouble said...
I have an allergy to sulfa, I bet that's why the enemas aren't working for me anymore. Here I thought it was the generic brand that I was getting. Rowasa does come in a sulfa free formula - at least I remember seeing it one time. I have yet to get my hands on it.

Yes there is a sulfate-free version called "sfRowasa" but I often read about people having trouble getting their hands on it. Specialty pharmacies and mail-order pharmacies often have much better luck than our local, brick-and-mortar pharmacies.
Moderator Ulcerative Colitis
John
, 38, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Mesalamine DR, and rowasa

UC causes complicated relationships with colons :::: we have trust issues ::::
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Fletch10
Regular Member
Joined : Feb 2017
Posts : 253
Posted 3/22/2017 6:28 AM (GMT -7)
Loulou - the enemas caused significant abdominal discomfort, pain and nausea/bloating - I was having a very difficult time sleeping while taking them. On two occasions (when I was able to retain them) they caused more bleeding and also diarrhea (not a normal symptom for me).

The Balsalazide started with bloating and discomfort which I felt I could tolerate. But then the bloating got bad enough that nothing could touch my abdomen without pain and it became a major struggle to eat enough to even take medication. Finally, after I'd been on it for two weeks, I had a very sudden worsening of UC symptoms - 10 trips per day up from 1-2, bleeding and constant tenesmus. We think I could have also been reacting to birth control at the same time but difficult to tell.
--
F, 39. Diagnosed Feb. 8, 2017 - mildly active UC through sigmoid colon
Prednisone currently tapering, at 25mg (tapering 5mg every 7 days). Cortifoam 2x daily.
Previously tried Rowasa and Balsalazide with bad reactions - evaluating next steps re: meds.
Norethindrone (mini-pill)
Diet: modified low-residue, strict gluten-free/dairy free - daily multivitamin and D supplements. Considering VSL#3.
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Trixy's Got Butt Trouble
Regular Member
Joined : Jun 2007
Posts : 356
Posted 3/22/2017 7:56 AM (GMT -7)
Thanks, Ipoop! I can't even get Rowasa anymore. They only have generic at all the pharmacies I check, even Cigna Home Delivery can't get it. UGH!!
UC, moderate-sever
4800 mg Asacol & Rowasa-stopped working
Remicade-Caused Drug Induced Lupus
200mg Imuran
40mg Nexium
Prednisone @ 20mg/day
LDN - 4.5/day
Vitamins D, B12, C
Probiotic 2x's/day/10billion CFU's
Iron Pill
Supplements by Standards Process prescribed by Chiro based on weekly testing
Gluten egg dairy soy corn free diet
Homemade Fermented Foods
profile picture
loulou82
Regular Member
Joined : Feb 2014
Posts : 76
Posted 3/22/2017 1:04 PM (GMT -7)
Fletch10 definitely sounds like you had a bad reaction to mesalazine. I am nervous to start the oral mesalazine after my reaction to the enema but will give it a go starting 1 tablet a day as Ipoop suggested.

The IBD Nurse called back and said to wait until I have my follow up appointment with the GI before starting the oral tablets and to try and taper off the steroid enemas to see what happens which I am really nervous about doing because I'm worried the bleeding will start again. Will have to see how I go.
34, Left sided colitis. Diagnosed 10/03/17
Hashimotos thyroiditis & acid reflux

Currently taking:
5/03/17 entocort enemas
20mg Omeprazole
100mcg levothyroxine

Prev tried:
01/17 reaction to pentasa enema
02/17 predsol enemas

Waiting follow up with GI to start oral meds.
Diet: Gluten free, limited dairy
Supplements: lglutamine, glycine, biotin, Omega3 & vitD
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Fletch10
Regular Member
Joined : Feb 2017
Posts : 253
Posted 3/22/2017 1:39 PM (GMT -7)
LouLou, good luck and smart to try the cautious approach. Just be vigilant about your symptoms and if your UC seems to get worse, stop smile I'm starting Remicade sometime this week and though I didn't expect to be thinking about a biologic so soon after diagnosis, I am at peace with our decision.

Regarding the steroid enemas, I have been on prednisone (now 25mg) since diagnosis in early February, and just added Cortifoam this week. Is there a reason they're pushing to get you off the steroid enema so soon? I understand the rectal steroids can be used for a longer period of time more safely than oral prednisone?
--
F, 39. Diagnosed Feb. 8, 2017 - mildly active UC through sigmoid colon
Prednisone currently tapering, at 25mg (tapering 5mg every 7 days). Cortifoam 2x daily.
Previously tried Rowasa and Balsalazide with bad reactions - evaluating next steps re: meds.
Norethindrone (mini-pill)
Diet: modified low-residue, strict gluten-free/dairy free - daily multivitamin and D supplements. Considering VSL#3.
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loulou82
Regular Member
Joined : Feb 2014
Posts : 76
Posted 3/22/2017 2:31 PM (GMT -7)
Thank you for the moral support Fletch10 smile I don't know much about Remicade other than its a stronger medication. Will you be able to take that long term to get into remission and stay there? I know what you mean about making decisions re medication, sometimes it takes a long time debating what to do but once you've made that decision it's kind of a relief because you know what the plan is going forward.

I'm not sure why the IBD Nurse is so keen for me to stop the steroid enemas because when I had my colonoscopy the Gastroenterologist told me to carry on taking them for 2 more months at which point I should have my follow up appointment. I've got an appointment with my GP on Friday so might ask her if I can carry on taking them.
34, Left sided colitis. Diagnosed 10/03/17
Hashimotos thyroiditis & acid reflux

Currently taking:
5/03/17 entocort enemas
20mg Omeprazole
100mcg levothyroxine

Prev tried:
01/17 reaction to pentasa enema
02/17 predsol enemas

Waiting follow up with GI to start oral meds.
Diet: Gluten free, limited dairy
Supplements: lglutamine, glycine, biotin, Omega3 & vitD
profile picture
Fletch10
Regular Member
Joined : Feb 2017
Posts : 253
Posted 3/22/2017 2:37 PM (GMT -7)
Thanks, LouLou! Yes, this is a long term medication - for remission (hopefully!) and then maintenance. My understanding is that I may/will develop antibodies to it at some point, at which time they will increase dosage or switch to another biologic. There are several of them being used to treat UC right now, and more medications coming through clinical trials, so hopefully there will be many options to choose from before surgery - hopefully, though, Remicade will work! My fingers and toes are all crossed.

Smart to double check about your steroid enemas. I think it's good to be a strong advocate for yourself, especially if you think something doesn't sound quite right!
--
F, 39. Diagnosed Feb. 8, 2017 - mildly active UC through sigmoid colon
Prednisone currently tapering, at 25mg (tapering 5mg every 7 days). Cortifoam 2x daily.
Previously tried Rowasa and Balsalazide with bad reactions - evaluating next steps re: meds.
Norethindrone (mini-pill)
Diet: modified low-residue, strict gluten-free/dairy free - daily multivitamin and D supplements. Considering VSL#3.
profile picture
loulou82
Regular Member
Joined : Feb 2014
Posts : 76
Posted 3/22/2017 3:23 PM (GMT -7)
Fingers crossed for you with the Remicade, if it's a stronger medication hopefully it will get you into remission quickly. Let us know how you get on smile
34, Left sided colitis. Diagnosed 10/03/17
Hashimotos thyroiditis & acid reflux

Currently taking:
5/03/17 entocort enemas
20mg Omeprazole
100mcg levothyroxine

Prev tried:
01/17 reaction to pentasa enema
02/17 predsol enemas

Waiting follow up with GI to start oral meds.
Diet: Gluten free, limited dairy
Supplements: lglutamine, glycine, biotin, Omega3 & vitD
profile picture
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14285
Posted 3/22/2017 4:38 PM (GMT -7)

loulou82 said...
DBwithUC thanks, I'll ask the IBD Nurse about Lialda.

In some countries lialda is known as mezavant. Same company makes them both, essentially the same med but named different.
Moderator Ulcerative Colitis
John
, 38, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Mesalamine DR, and rowasa

You know you have UC when you walk the dog and both end up pooping in the bushes.
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loulou82
Regular Member
Joined : Feb 2014
Posts : 76
Posted 3/23/2017 5:55 AM (GMT -7)
Thanks John, the Nurse knew about Lialda but said it is called Mezavant here in the UK. I've basically got to wait for my appointment with the gastroenterologist before staring oral medication so I am collating a list of questions/options. So far I want to ask them about mezavant and basalazide whichever works best for left sided colitis and also if I can start on a low dose initially ie 1 pill per day. I also want to ask how long I can stay om the steroid enemas for, is there a time limit and should I taper off them etc
34, Left sided colitis. Diagnosed 03/17
Hashimotos thyroiditis & acid reflux

Currently taking:
03/17 entocort enemas, 20mg Omeprazole, 100mcg levothyroxine
Prev tried:
01/17 reaction to pentasa enema, 02/17 predsol enemas

Waiting follow up with GI to start oral meds
Diet: Gluten free, limited dairy
Supplements: lglutamine, glycine, biotin, Omega3 & vitD
profile picture
TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8432
Posted 3/23/2017 6:25 AM (GMT -7)
until you get something oral figured out, please ignore the nurse and continue with the enemas -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !
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loulou82
Regular Member
Joined : Feb 2014
Posts : 76
Posted 3/23/2017 7:46 AM (GMT -7)
Soynomore thank you for that advice smile something just didn't feel right about the Nurse saying to stop the enemas when I haven't been given anything else to take. Going to pick some more up tomorrow, I've only got a couple of predsol enemas left.
34, Left sided colitis. Diagnosed 03/17
Hashimotos thyroiditis & acid reflux

Currently taking:
03/17 entocort enemas, 20mg Omeprazole, 100mcg levothyroxine
Prev tried:
01/17 reaction to pentasa enema, 02/17 predsol enemas

Waiting follow up with GI to start oral meds
Diet: Gluten free, limited dairy
Supplements: lglutamine, glycine, biotin, Omega3 & vitD
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