HealingWell
Search Close Search
☰

Thank you, forum buddies!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/15/2009 2:11 AM (GMT 0)
I just wanted to say - I've dealt with this for more than 2 decades. When I was first diagnosed I read all the ccfa had on hand (3 books, total, at that time) and I asked questions... no Internet then.... but since finding this forum and hearing from you all I have learned so much more, have had great experiences with supplements, and know so much more!

Especially I want to say thank you to Quincy for explaining the benefits of mesalamine enemas better than any doc ever explained to me - so I have stuck with them this time (other times over the years that gas the first few days had discouraged me and I'd stopped them) - These have changed my life!

Over the years, the best I'd ever been was to poop 4 times a day, and now I'm down to 2 times, some days (more other days, depending on what I've eaten.)
Thank you, you wonderful folks who are ready to challenge the medical world and take charge of your own health! I really appreciate you!
Posted 11/15/2009 2:26 AM (GMT 0)
"DITTO"

Posted 11/15/2009 2:26 AM (GMT 0)
Well, I can credit my doc for prescribing them over 20 years ago. Just a bit of an aside, I had the other doc in the practise (when my doc was called away) tell me that if I were his patient, he'd have had me on pred from the start.

I told him I was grateful he wasn't my doc!

I'm happy they're working for you....of course, the commitment is a huge thing if you can use them.

quincy
Posted 11/15/2009 3:10 AM (GMT 0)
Yes, I am thankful for everyone here as well. I am newly dx and it is so great to be able to talk to people who have lived it. Docs are great and all but sometimes you have questions and you don't want to call the doc everytime. And honestly, I would not have been so quick to try the enemas if it had not been for you Songlady...and quincy of course! And also fruitgirl and Rio in Maryland I believe also were on the rectal meds bandwagon.
Posted 11/15/2009 4:04 AM (GMT 0)
Yeah, I was pushing the rectals! ;)
And I'm incredibly glad I found the forum, too. quincy suggested the rectal meds for me, and I would have gotten into remission using them and Asacol alone, but then a tummy bug threw me back into the flare. If I'd had time, I would have given those two a bit more time, but I had an interview coming up and HAD to be well ASAP. So, on to pred it was. Luckily, it worked really well and I had no problems tapering (or problems with side effects).

I know that HW helped me deal with my diagnosis in a more healthy manner, so I'm incredibly grateful for it. So, thanks, Peter (the admin) for starting HW way back when, and thanks to the mods for keeping it running, and thanks to all the members for their contributions!
Posted 11/15/2009 6:06 AM (GMT 0)
I also really appreciate this forum. Living as an expat in a country where the locals have a REALLY low incidence of this particular disease means that while my doc is very smart and up with the latest in treatments and has been awesome, in real life, he doesn't have that much experience treating UC in real patients, so I'm something of an experiment for him. :-) It's been great to be able to read the collective wisdom and support on this forum.
Posted 11/15/2009 11:38 AM (GMT 0)
Yes, I'm on the rectal meds bandwagon -- whether it's using prescription drugs or alternative treatments. But Q definitely drives that bandwagon...and for good reason too.

Oral therapies have a long way to travel before they eventually get to the target (if at all), whereas rectal meds offer a much more direct way to treat the inflammation.

Doctors do not have all the answers for UC. And I've come across more thoughtful ideas on the forum than I would have gotten from visiting several doctors (which I already have done). Whether an idea will work for you is obviously a judgment call, and should be a well educated decision, but we need to throw out these kinds of ideas so that more success stories are shared...and you never know, maybe people like us will find a cure for UC through our own discussions and trial and error, before big pharma comes up with something.
Posted 11/15/2009 7:53 PM (GMT 0)
LOL, Rio, we know what big pharma is interested in-- profits! That's what makes this forum such a blessing. Real UCers discuss how they cope with real problems. I've been in treatment with a very knowledgeable gastro for 2/3 of my tenure with UC; still, I find that patient input offered on the forum by dedicated, thoughtful, sincere members like Quincy is invaluable. We can sign on feeling tired and even discouraged, but then Paul L gets us to laugh with mention of something comical he experienced related to UC ... it makes a big difference being able to share our observations & emotions. / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 11/16/2009 2:33 AM (GMT 0)
Yep im glad i found this forum as well. thanks to all, and thanks Quincy for answering my dumb questions :)
Posted 11/16/2009 2:41 AM (GMT 0)
Quincy--I see how you often recommend rowasa enemas or similar. So far I have tried canasa and hydrocortisone foam, but neither has helped me get into remission. Do you think trying rowasa enemas would make the difference? Either way, I am probably calling my doctor to try to get these this week...
Posted 11/16/2009 3:59 AM (GMT 0)
It never hurts to give them a shot! (well, unless you can't toerate mesalamine, but that doesn't seem to be the case)
Posted 11/16/2009 4:42 AM (GMT 0)
It CAN hurt to give them a shot. Happened to me during flare last March-- generic Rowasa made me worse so gastro advised to get off it & stay off. (This after 14 yrs of successful use off & on.) An example of the unpredictability of UC & heterogeneity of patient response ... that makes it a bugger to treat. / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 11/16/2009 4:49 AM (GMT 0)
Weird response, Old Hat. I guess I was also thinking along the lines of not knowing if it'll help or not until one tries it!
Posted 11/16/2009 5:20 AM (GMT 0)
Yep, I thought it wouldn't hurt to try precisely because it had always helped! Lo & behold, I soon felt like a hole was opening in my left side! Very unpleasant. The gastro did a flex-sig that turned up an angry patch of ulcers in sigmoid colon, with lesser inflammation the rest of the way down. If brandname Colazal had not worked on that we would have added Xifaxin, but no more enemas. My gastro subspecializes in IBD treatment & was not at all surprised by this turn of events against mesalamine enemas. Things can stop working so we just have to psych ourselves for that, but, having it HURT besides was really a bummer. My mucosa has worn thin, though, after decades of fighting off UC ... that's what can happen, too & it can change reaction to meds. / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 11/16/2009 6:52 PM (GMT 0)
I totally agree that long-term fighting of UC will cause the permanent changes in the mucosal layer of the colon/rectum. Eventually, the rectum can become spared...meaning it's become fatigued to reacting, but the permanent changes are obvious from chronic inflammation on a visual and microscopic level.

I truly think that the 5ASA meds should be tried initially....low dosages at first and increased, plus the retention enemas rather than the suppositories unless the supps are used for support rather than treatment.

I say, yes....ask for the Rowasa if you're in the US.....

You don't know how you'll do with them unless you try them. As well, one should be on the oral topical meds such as Asacol, Colazal, Pentasa or the newer once a day meds.


quincy
✚ New Topic ✚ Reply