Hello
I am 33 years old and I was diagnosed with ulcerative proctitis last April while I was pregnant. I immediately started treatment with salofulk suppositories 1gr 2 per day. The treatment worked immediately and the few symptoms I had (minimal blood and mucus) stopped from the first week. The treatment continued with 1 suppository until last September when I had a colonoscopy and the conclusion was ulcerative colitis with localization in the rectum and cecal (cecal patch). The doctor told me to start Salofalk granu stix 3gr together with the suppositories. Because I was breastfeeding my baby I did not start oral treatment immediately. I got a second opinion from a doctor who insists that the cecal patch is not clinically relevant and that oral treatment is not needed.
I'm confused and I'm very scared...
Welcome to the forum.
You need the oral med...so get on it to treat the inflammation to keep that area and the rest of your colon calm.
There was no reason for you to not have started the oral while breastfeeding.
What are you on exactly at this point?
Stay with your original GI, the second one is an idiot.
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 (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
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
You need the oral med...so get on it to treat the inflammation to keep that area and the rest of your colon calm.
There was no reason for you to not have started the oral while breastfeeding.
What are you on exactly at this point?
Stay with your original GI, the second one is an idiot.
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 (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
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
Martina, first line treatment for proctitis is rectal meds and oral meds are only needed if you can't get remission on rectal meds alone. However, I believe you are saying you didn't hit full remission since colonoscopy in September showed ulcerative colitis with inflammation in the rectum and cecal, and your diagnosis changed to UC from proctitis. In that case, as Q mentioned, you'll need both oral and rectal meds. You want to treat early so you don't have to move to stronger meds like steroids etc. Those of us that can get better from mesalamine class of meds alone are considered lucky since this disease can get pretty severe.
UC, GERD/Acid reflex/IBS
Remission for 12 Years! (2005- 1/2017) due to SCD diet, fish oil, & ocassional low dose asacol. These were the best years!
NOW: apriso (lower dose), SCD Diet, fish oil, Visbiome, slippery elm, psyllium seed, D3, mesalamine enemas. 4/17 scope showed mild inflammation in rectum only.
*5-ASA's cause severe side effects (only tolerate low dose and enemas).
UC, GERD/Acid reflex/IBS
Remission for 12 Years! (2005- 1/2017) due to SCD diet, fish oil, & ocassional low dose asacol. These were the best years!
NOW: apriso (lower dose), SCD Diet, fish oil, Visbiome, slippery elm, psyllium seed, D3, mesalamine enemas. 4/17 scope showed mild inflammation in rectum only.
*5-ASA's cause severe side effects (only tolerate low dose and enemas).
It's not lucky (extremely insulting)...it's called good doctoring and a willing and committed patient regarding medications and symptoms. Some patients have horrible and arrogant doctors who undertreat. Thankfully, I didn't...I could have been referred to the idiot one.
Regarding oral meds not being needed for proctitis...uh, no. We've seen enough here whose doctors prescribed that very regimen...only to have continued and worsening symptoms till total hell. It's not a wait and see...it's cover entirety, treat and then maintain.
Not all are able to stay on mesalamine alone, but it is worth the full effort.
Dont spread that info Jane...it's remiss.
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 (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
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
Regarding oral meds not being needed for proctitis...uh, no. We've seen enough here whose doctors prescribed that very regimen...only to have continued and worsening symptoms till total hell. It's not a wait and see...it's cover entirety, treat and then maintain.
Not all are able to stay on mesalamine alone, but it is worth the full effort.
Dont spread that info Jane...it's remiss.
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 (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
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
Post Edited (quincy) : 12/30/2020 11:28:37 PM (GMT-7)
Thanks a lot for the answers
The truth is that from April until today I have never seen other symptoms staying only with suppositories. However, I recently stopped breastfeeding and started oral therapy. The first doctor told me that mesalazine passes into breast milk and it would be better to stop breastfeeding. This upset me a lot. Is it possible that at some point in the future and if a next colonoscopy does not show inflammation in the blind I would stop taking mesalazine orally?
Of course I know that the condition could get worse and I need stronger drugs but I try to think positive
The truth is that from April until today I have never seen other symptoms staying only with suppositories. However, I recently stopped breastfeeding and started oral therapy. The first doctor told me that mesalazine passes into breast milk and it would be better to stop breastfeeding. This upset me a lot. Is it possible that at some point in the future and if a next colonoscopy does not show inflammation in the blind I would stop taking mesalazine orally?
Of course I know that the condition could get worse and I need stronger drugs but I try to think positive
Post Edited (Martina) : 12/31/2020 12:38:59 AM (GMT-7)
You should do what's best for you and experiment with only rectal meds to see what happens if you don't want to be on oral meds. The American college of gastroenterology clinical guidelines for managing proctitis recommend only rectal meds in mild cases of proctitis. I don't know if your disease is mild so you'll have to see. Here is the recommendation:
16. In patients with mildly active ulcerative proctitis, we recommend rectal 5-ASA at a dose of 1 g/d for maintenance of remission (strong recommendation, moderate quality of evidence).
You can look at all the guidelines here: https://journals.lww.com/ajg/Fulltext/2019/03000/ACG_Clinical_Guideline__Ulcerative_Colitis_in.10.aspx
UC, GERD/Acid reflex/IBS
Remission for 12 Years! (2005- 1/2017) due to SCD diet, fish oil, & ocassional low dose asacol. These were the best years!
NOW: apriso (lower dose), SCD Diet, fish oil, Visbiome, slippery elm, psyllium seed, D3, mesalamine enemas. 4/17 scope showed mild inflammation in rectum only.
*5-ASA's cause severe side effects (only tolerate low dose and enemas).
16. In patients with mildly active ulcerative proctitis, we recommend rectal 5-ASA at a dose of 1 g/d for maintenance of remission (strong recommendation, moderate quality of evidence).
You can look at all the guidelines here: https://journals.lww.com/ajg/Fulltext/2019/03000/ACG_Clinical_Guideline__Ulcerative_Colitis_in.10.aspx
UC, GERD/Acid reflex/IBS
Remission for 12 Years! (2005- 1/2017) due to SCD diet, fish oil, & ocassional low dose asacol. These were the best years!
NOW: apriso (lower dose), SCD Diet, fish oil, Visbiome, slippery elm, psyllium seed, D3, mesalamine enemas. 4/17 scope showed mild inflammation in rectum only.
*5-ASA's cause severe side effects (only tolerate low dose and enemas).
I have the exact same diagnosis as you.
I did both oral and rectal meds together which didn't tackle my flare, I added steroid foam to the equation and still no luck so I ended up on Biologics which up until 3 weeks ago were working a treat but then I started flaring again so I'm back using the suppositories and steroid foam (never stopped the oral meds) to try get things back on track, if not it'll be back to the drawing board.
Not saying that that is where you will end up but if I were you I'd throw the kitchen sink at it, mild can go to out of control very quickly.
Meds: 2g Pentasa Grannules Twice Daily
2g Pentasa Suppositories Daily
20mg Prednisolone Rectal Foam Nightly
40mg Idacio Adalimumab
I did both oral and rectal meds together which didn't tackle my flare, I added steroid foam to the equation and still no luck so I ended up on Biologics which up until 3 weeks ago were working a treat but then I started flaring again so I'm back using the suppositories and steroid foam (never stopped the oral meds) to try get things back on track, if not it'll be back to the drawing board.
Not saying that that is where you will end up but if I were you I'd throw the kitchen sink at it, mild can go to out of control very quickly.
Meds: 2g Pentasa Grannules Twice Daily
2g Pentasa Suppositories Daily
20mg Prednisolone Rectal Foam Nightly
40mg Idacio Adalimumab
Jane974 the link you sent me helped me a lot! Thank you!
I wish everyone strength and health.
I wish everyone strength and health.
Definitely do as fits your needs, but don't lose sight of experience and common sense...no matter the info you read.
Keep us updated how you're doing.
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 (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
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
Keep us updated how you're doing.
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 (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
~Sjogren's (secondary)...symptomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!