Stubborn Proctitis - HELP!

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GoDawgs2159
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 11/8/2017 10:00 AM (GMT -7)   
I have been using Rowasa pretty regularly since the middle of June when I had some blood tinged mucus on my stool.

Fast forward to last Thursday I had a flex sig which found moderately active colitis in the rectum (0 - 3 cm). Doctor recommended 1 steriod supp and 1 canasa a day... instead of the steriod supp due to cost ($400 for 12) the doc prescribed cortifoam. I couldn't get the cortifoam until Monday so prior to I was taking 2 canasa/day. Well after each night of the cortifoam I have had significantly more blood than with the canasa - any thoughts why this is occurring?

Prior to the scope I was having 1-2 formed BMs in the mornings with some blood on the tail end of the stool. Now I'm having movements that are only blood.

There is the potential for me to move up the medication ladder (even though its such a small section) to imuran or a biologic.

What would you do in my shoes?

My signature isn't updating but I've been taking 4 lialda/day since May 2016 and Rowasa/Canasa as needed.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/8/2017 10:33 AM (GMT -7)   
Proctofoam is another option if cortifoam isnt available. You might be scratching it with the nozzle tip, but Im suspecting this flare needs more continual care and has progressed and will settle with continual use of the change in meds. As
As well, if you were on nightly enemas 4g, and dropped to a different lower dosage med, that could be why the change in symptoms. As well, the scope might have caused a slight worsening.


Were you off the rectal meds when you were on holiday?

Did the doc say you had inflammation higher than the 3cm....but more severe at the 0 - 3 cm?

Where your flare is limited...it can be the most difficult to treat and heal. I would say give this regimen a fair go and decide whether or not going up the med scale if it doesn't improve.

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/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 15 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) : 11/8/2017 10:36:08 AM (GMT-7)


GoDawgs2159
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 11/8/2017 10:52 AM (GMT -7)   
The doctor suggested suppositories because my inflammation is only at 0-3cm (just above the anal canal) and thought these might hit it better than the rowasa.

I was not off the rowasa on holiday. I broke my tibia and fibula at the beginning of May this year so my health has been a bit of a roller coaster since.

I am confused at the worsening of symptoms since starting the cortifoam.
Diagnosed with Ulcerative Proctitis on March 25, 2016 via colonoscopy and biopsies.

4 Lialda/day
Rowasa/Canasa as needed

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/8/2017 10:55 AM (GMT -7)   
You're still on the canasa during the day?

Try not to judge it quite yet. Give it a bit longer till at least monday...if you still increase, call your doc. If you see some improvement...continue with it.

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/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 15 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 !!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10818
   Posted 11/8/2017 12:00 PM (GMT -7)   
Patience, I'd give it longer. You only started the current treatment on Monday and it is now Wednesday.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Urgency Roused "Oh the places I've pooed from culverts to shady bathrooms" the memoirs of a UC patient. Run, don't walk, to you local bookstore...

quincy
Elite Member


Date Joined May 2003
Total Posts : 29771
   Posted 11/8/2017 12:15 PM (GMT -7)   
Oooooo, yep.....patience!! The hardest part of it.
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/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 15 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 !!

VeroMom
New Member


Date Joined Nov 2017
Total Posts : 9
   Posted 11/8/2017 3:01 PM (GMT -7)   
Hi! I'm new to all of this. I was diagnosed with proctitis and colitis. I started sulfasalazine 5 weeks ago but about 4 weeks in I noticed a change in taste. I also started this sodium butyrate supplement I found on Amazon at the same time as the taste change. I thought it was the butyrate so I stopped after 5 days of it. But it's been 12 days and I still have no taste. My dr thinks it may be the sulfasalazine after all and he switched me to lialda yesterday and I started today. My concern is sometimes I feel like I have canker sores in my rectum. So painful. Should I ask for a suppository or enema prescription? My stomach never hurts and I've never had blood but there is this constant pain in my rectum. It seems like such a small area to heal but it's been terrible for 9 months. I finally was diagnosed in September and the sulfasalazine wasn't working that great anyway so I'm sort of glad I'm switching. Now it's this canker sore pain down there and no taste I'm getting very depressed and frustrated. I just need to believe it will get better. So basically as of now I'm only on lialda (day 1) 2 pills a day. Any other suggestions? Im so glad I found this community. I've been so depressed and alone about all of this. I've had to take some anxiety and antidepressants. Now I'm just on the anxiety when I can't sleeep. Thanks for any help. Ps. Do sitz baths or Epsom salts ever help?

Post Edited (VeroMom) : 11/8/2017 3:06:53 PM (GMT-7)


hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2270
   Posted 11/8/2017 8:25 PM (GMT -7)   
Darn bottom is the most stubborn piece of *!@$ ever!! I like the steroid supp for this part--it stays at the bottom and melts there. See if you could get a coupon on-line-- I have had luck with goodrx, however there are others (just google coupon and anucort hc) I would combine with Rowasa, Canasa and Anucort. Yup alot of stuff going up your butt however that is where it needs to be. I hate the bottom, troublesome, persistent and annoying. Hopefully you will be one of those people who can get it under control and taper to maintain. I however seem to need Rowasa nightly (years now) and Anucort 2x/week as maintenance and I pick it up when flaring. (I can't use Canasa--allergic)

I like Cortifoam, but for me and the very bottom, I still like the supp. You can stick with the Cortifoam for a bit but if it is really making things worse...back off and see how things go. Experimenting until you find your magic formula.

Anyway, good luck and let us know how it turns out.
B

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10818
   Posted 11/9/2017 6:39 AM (GMT -7)   
VeroMom said...
Should I ask for a suppository or enema prescription? So basically as of now I'm only on lialda (day 1) 2 pills a day. Any other suggestions? Do sitz baths or Epsom salts ever help?
Yes ask for a prescription for an enema (rowasa) or suppository (canasa). A typical dose is 4 lialda a day, ask for an increase. Sitz baths help if you have an anal fistula or abscess, but not otherwise.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Urgency Roused "Oh the places I've pooed from culverts to shady bathrooms" the memoirs of a UC patient. Run, don't walk, to you local bookstore...

Yossarian
New Member


Date Joined Nov 2017
Total Posts : 2
   Posted 11/10/2017 2:16 PM (GMT -7)   
Every case is different, and there are too many variables to control for, but I will say that my doctor once switched me to mesalamine suppositories to specifically attack inflammation at the very bottom of my colon, because steroid foam was not getting it done. It worked.

VeroMom
New Member


Date Joined Nov 2017
Total Posts : 9
   Posted 11/10/2017 2:51 PM (GMT -7)   
Thanks everyone for your help! I asked for the canasa suppositorities. And got them last night and started this morning. I hope they will really help! I'll keep you posted. Thanks again for the advice. Nice to know you're not alone. smile PS Has anyone heard of those butyrate supplements or LGlutamine? Are any of your doctors suggesting supplements? What about George's Aloe Vera Water? One more question. Are you all gluten free? I'm still not sure. My dr says just to eat normal but healthy. I've lost 30 pounds and am now underweight. I developed an anxiety about food when I read about how most food causes inflammation. Now I barely eat. I did see an allergist whose tested me for 80 food allergies and I tested negative for everything. So confusing. Thanks again. God bless! smile

Post Edited (VeroMom) : 11/10/2017 2:55:12 PM (GMT-7)


VeroMom
New Member


Date Joined Nov 2017
Total Posts : 9
   Posted 11/12/2017 6:41 PM (GMT -7)   
Hi again ! Quick questions. Has anyone tried Wild Oregano Oil capsules? I've thought about it. I'm going to try the VSL-3 probiotics and maybe slippery elm powder I found on another chat. I tried the canasa suppositoryand it really hurt! It helped a little but all day long I felt like I had jabbed a metal pipe up there. I didn't do it today and the inflammation is back. I am currently only on Lialda twice a day. I did sulfasalazine for 5 weeks and lost taste so now I'm on Lialda. I hope I get my taste back before thanksgiving. Thanks everyone!

GoDawgs2159
New Member


Date Joined Sep 2016
Total Posts : 7
   Posted 11/14/2017 3:17 PM (GMT -7)   
Update from me:

Still struggling and I've been on various rectals (rowasa, canasa, cortifoma) along with my lialda for the better part of 5 months and we still can't get rid of the blood... so meeting with the doctor next week to discuss immunosuppressant options.
Diagnosed with Ulcerative Proctitis on March 25, 2016 via colonoscopy and biopsies.

4 Lialda/day
Rowasa/Canasa as needed

VeroMom
New Member


Date Joined Nov 2017
Total Posts : 9
   Posted 11/14/2017 6:21 PM (GMT -7)   
Hi GoDawgs! I'm sorry for your pain and struggle. I totally understand and I hate that anyone struggles with this. I just read a thread about butyrate suppositories. I'll try to copy/paste the link. Not sure where your located but it sounds like they're all in NY. My GI hasn't even heard of butyrate. But I may ask about it. Let me know what you find out. Good luck!!

https://www.healingwell.com/community/default.aspx?f=38&m=1870342
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