interstitial cystisis

posted 3 years ago in Wellness
Post # 3
Member
1535 posts
Bumble bee
  • Wedding: July 2015

Theres a girl who does a blog type thing who has ic and she has a bunch of links on there for extra info

icramblings.com

Post # 5
Member
263 posts
Helper bee
  • Wedding: July 2003

yes I have IC. I got diagnosed in ’91. It is awful. Much better though with proper meds. Email me if you have aver questions or need someone to talk to. 

Post # 6
Member
2076 posts
Buzzing bee
  • Wedding: July 2012

@marinewife4: I have IC too. I got it under control after 9 weeks of catheter bladder treatments twice a week (fun times, let me tell you) and now I take freeze dried aloe Vera powder supplements as maintenance. I have GI issues so I was worried about the side effects of Elmeron. Feel free to message me if you want. 

 

 

 

Post # 7
Member
444 posts
Helper bee
  • Wedding: August 2014

I have it too! You can send me a message, too, if you need someone to talk to. For me, Elmiron has been a lifesaver.

Post # 10
Member
2076 posts
Buzzing bee
  • Wedding: July 2012

@marinewife4:  the first time I had the treatment the catheter was really painful. For the rest of them, the nurse used a child sized catheter and it was much less painful.  Aloe Vera juice is actually irritating to the urinary tract but the powder is soothing.  I get mine online from Desert Harvest (wwww.desert harvest.com). Some people find that diet modifications decrease the symptoms. http://www.ichelp.org has some good info on there about diet. The only thing that decreased the urgency was the catheter treatments.  It took about 3 before I noticed a big change. 

As far as GI issues, I could write you a novel since I have Crohn’s disease. Best thing I’ve found for hemmorroids is cortisone cream applied directly to them (use your imagination about how to get it there…very similar to an enema). If they’re bad enough, they can be treated surgically, but that won’t prevent them from coming back. You’d need to modify your diet and make sure you don’t let yourself get constipated. Stool softeners can be your friend. 

Honestly ly though it sounds like you need a good gastroenterologist for the GI stuff and a gynecologist or urologist for the IC.  

Post # 12
Member
2076 posts
Buzzing bee
  • Wedding: July 2012

With stool softeners, make sure you get the non-stimulating kind. I recommend Colase brand. Don’t forget that stool softeners are different than laxatives. My GI doctor told me I cout take Colase several times per week without issue. The topical cortisone can cause tissue thinning so that’s not recommended for daily use, more of an emergency type of ting.  Regular old warm water enemas are safe and can be used regularly to help ease the constipation.  

Make sure you drink plenty of non-caffeinated fluids. It sucks when you feel like you have to pee every 15 minutes but staying hydrated is so important for GI health.

the aloe vera powder does help with the frequency, etc. I notice that if I forget to take it for a few days some of my symptoms come back. Another thing you can try is training your bladder. If you feel the urge to pee, try to hold it for a couple extra minutes before going. Try to increase the length of time you wait every couple of days. I had some success with this after I started the bladder treatments. It wasn’t easy but it was worth it in the end.  I honestly can say enough good things about the catheter bladder irrigations. Those really kick started my remission. It’s also comforting to know that’s an option if I have a bad flare again. 

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