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Ulcerative Colitis
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Posted 7/22/2021 2:33 AM (GMT -7)
So, now on Rowasa enemas for a while at home. Um, started this in the hospital this weekend and well, have a question since this is new for me. Didn’t give me much information to begin with. Yes, know how to administer the med and know you need to lay still on your left side at least 30 minutes. My thing is, I have to pee a lot…is this the enema I am getting rid of or the enema strictly stays in your colon area? Dumb question, but still asking. Also, tried to hold it in but had to go about 6 hours in and did notice a light brown watery liquid assuming just got rid of what was in the colon? Supposed to keep it in 8 hours, yeah right! LOL. Heck, lucky to get a couple hours of sleep at a time then u guessed it, pee time. (roll eyes)

What are some tips, advice anything from the Rowasa veterans. Does this med make you pee? Any side effects? Don’t want to mess this up. TU!
Posted 7/22/2021 7:17 AM (GMT -7)
It stays in your colon or gets absorbed overnight. You wouldn't pee it out. Maybe it's somehow putting pressure on your bladder? Or it could be totally unrelated. I don't know. I've not experienced that. Six hours is good. Don't worry about it.
Posted 7/22/2021 9:37 AM (GMT -7)
6 hours is a great start! Only steroid enemas make me pee more, and I think that 's from the steroid itself. I agree with Sara that it is likely putting some odd pressure on your bladder. Once your colon heals a bit more you will be able to retain it for longer.
Posted 7/22/2021 10:02 AM (GMT -7)
Thank you!! Have to pick up the rest of my month’s supply along with the Proctoform. Thank GOD for insurance! They paid $164 for it and my part will be $30! Sheesh!
Posted 7/22/2021 12:02 PM (GMT -7)
6 hour retention of Rowasa is a great start, congrats! Keep in mind that a healing colon will draw off more fluid from your waste, more like a healthy colon's performance. That fluid then gets eliminated thru your urinary tract. *** Also great news that your insurance chips in for this med, yippee!!!!! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 7/28/2021 3:51 AM (GMT -7)
So, I have some ulcers per the colonoscopy and wondered how long does it takes for them to heal? Never had them before and actually, the worst outcome of a scope for me. Major inflammation, ulcers along with a 20 cm stricter, no blockage. Omg! And wasn’t in any pain! Just that I had symptoms of a mild flare. Anyhoo, by using the Proctoform and Rowasa plus the Flagyl and Prednisone they have me on, hoping the inflammation and the ulcers are healing. Again, no pain but some tenderness in spots (comes and goes), sore lower back at times, just tired a lot are my symptoms. No urges and my BM = “soft serve” guessing because I am not eating a normal diet right now. Don’t go back to the GI till August 24th, and have to follow a low residue diet till then. Waiting for approval for Entivyo. Sleep…what is that? LOL Get about 4 hours maybe a night. How can they tell if the stricter is opening up back to normal? No way to tell unless you have another scope, correct, which I know is in my future obviously. Oh, and had an MRI done and don’t have the results of it yet. Before I left the hospital which I had to stay for 3 days, my blood work showed 17 down from 286 in a CRP test and normal is 10 and under. Yes, that was a huge improvement since my body was responding to all the meds/foam/enema. So, going forward, guessing more blood work, maybe a stool sample test for inflammation when I go back to the doctor, dunno. So, that’s my update and questions. And…life “MOVES” on. LOL
Posted 7/28/2021 8:19 PM (GMT -7)
What you must have at 20 cm is a "STRICTURE". With CRP falling a lot, you seem to be on the right track to healing, but it sounds like you need to get more rest and sleep, wherever you can fit that in. Don't feel guilty about it. Ulceration can take a couple months to heal fully. At next check-up ask doctor why you got Rx for Flagyl, which really is an amebicide. My feeling is that it is now overprescribed to IBDers. I wouldn't recommend it to anyone except to kill an amoebic infection; it's really a vile drug that can make food taste metallic. Be sure to drink plenty of water daily to flush it out ASAP. (Kind of like taking insecticide.) Wishing you steady improvement! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 7/28/2021 9:47 PM (GMT -7)
Old Hat-The Flagyl is a 10 day prescription 3 pills a day, so almost finished with it. Yes, nasty tasting if you don’t put the pill in a bite of food, super bitter. Whew! LOL

Then, as far as the stricter, does it take months for it to open up and go back to normal, assume the colonoscopy is the only way to see this? Just super concerned about this “issue” since the rest of the colon will heal..eventually. Nothing yet about my approval for Entivyo. Going to call the doctor’s office tomorrow, still don’t know about my MRI results. Should have come in by now, been a week and a half since I was in the hospital. (Roll eyes).

Thank you for your replies! Hope you are having a great day!
Posted 7/29/2021 6:35 AM (GMT -7)
Not to be a spelling ****, but the word is "stricture" not "stricter" smile I don't know much about them other than that they are caused by inflammation.

What is the extent of your UC? Is it pancolitis, left side only, something else?

Are you on any other UC meds? It can take Entyvio a while to work so you need something to help until it does.

Doctor's offices can get really busy so sometimes a little poke to check on the progress of getting Entyvio approved can go a long way. What meds were you on previously? Insurance often requires step therapy before authorizing Entyvio, meaning you would need to have tried other immune suppressants first.

If you make a signature on your Profile page listing meds and diagnosis it's helpful for people who can offer advice for you.

Hope you feel better soon!
Posted 7/29/2021 7:08 AM (GMT -7)
Lecithin or phosphatidylcholine (PPC) was originally extracted from egg yolks and is used as an emulsifier in cooking and as a food supplement to lower cholesterol. It obviously won't cure your strictures but perhaps PPC can help to make them less likely in the future.

I used to take PPC to lower cholesterol and later for my UC and for the first couple of years it seemed to help. Then all of a sudden it made things much, much worse. I think it might be that phosphatidylcholine is no longer derived from egg yolks but from soybeans, and about 95 percent of soy is GMO saturated with Roundup (glyphosate).

BTW don't trust getting PPC from “organic” soybeans since our USDA has allowed GMO corn and soybeans imported from Eastern Europe and China to be labeled 'organic'.

"Bowel strictures, abnormal temporary or permanent narrowing of the bowel, are characterized by excess deposition of collagen in the intestinal wall. A study was conducted to determine the effect of PPC in the prevention of bowel strictures. Three groups of rats were assessed: a control group, a confirmed colitis group, and a group of rats diagnosed with colitis, but receiving phosphatidylcholine. In conjunction with the study, collagen deposition and collagenase activity in colonic tissue were measured in all of the groups. None of the control rats, but 12 of 16 rats with colitis, developed colonic strictures.

"In contrast, only two of 15 phosphatidylcholine-fed rats with colitis showed strictures. Collagen content was much higher in the rats with colitis than the phosphatidylcholine-fed rats with colitis and the control rats. Collagenase activity in colonic tissue was, also, much higher in the phosphatidylcholine-fed rats (Mourelle et al. 1996). Phosphatidylcholine appears to enhance collagen catabolism, restricting collagen buildup in inflamed intestinal tissue and the resulting stricture formation."

BTW with questions about Rowasa I would defer to Quincy.
Posted 7/29/2021 9:01 AM (GMT -7)

IamCurious said...


.....BTW with questions about Rowasa I would defer to Quincy.

Always a good idea!

What is the practical expiration for (Rowasa), Mesalamine Rectal Suspension, enemas?

I have some stored in my dry closet, date of issue was 9/19, and the expiration on them is 4/22

Two and a half years seems a long time. If the suspension color is still white, I'm guessing it's safe to use. Any advise before I 'insert and squeeze'?
Posted 7/30/2021 8:52 AM (GMT -7)
Regarding retention...6 hours is awesome!

Garyi...Yes...fine to use them.
q
Posted 7/31/2021 9:51 AM (GMT -7)

quincy said...

Garyi...Yes...fine to use them.
q

Thanks, Q....

Gary
Posted 7/31/2021 9:55 AM (GMT -7)
👍😊
q
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