Hi All, I have an ileostomy (almost a year) and I am currently flaring. The next step is probably a permanent stoma for me. I'm bleeding a lot. The suppositories used to help, but now, not so much. I...
I'm more concerned with how your insurance works with regards to how many stoma bags you get per month and whether you have to pay per box. I want to better understand the range of options. I...
Have you ever walked into a hospital to ask for stoma bag samples? I need samples. I have spent more than 2 weeks on near daily calls with my doctors, brand representative, insurance company, medical...
Any suggestions on where to go to get insurance advice? I had a collectomy earlier this year and now have an ileostomy. I'm guessing that I might get a permanent stoma surgery some time next year....
Hi All, Whether you're trying to call your doctor, your insurance, your medical supplier, your pharmacy...how much time do you spend on hold or talking about your medical issue on the phone to an...
There should be a retailer in every country. Check with a local hospital....
I am a 33 year old very social female and I comfortably wear suits, dresses, shorts, shirts - everything. I generally use the wraps from ostomy secrets or spanx. No need to cut a hole in your shirt,...
Have you been to this conference before? Did you find it informative? Helpful? I'm trying to decide if I should go....
Hi Camilla, I'm a 33 year-old Peruvian-American living nearby in Denmark. You will be fine. You will probably have to go to a general doctor first and the general doctor will refer you to a...
I'm one of the 25% that needed surgery. I am a 33 year old female with no children. I started playing sports at the age of 6 and have led a very healthy life. I was diagnosed with UC about a year ago...
Hi All, I've been losing a little more hair than usual for the past 3 weeks/month. I finished tapering off the prednisone in early May. The doctor said to take more zinc, the pharmacist gave me some...
Could also be eating a lot of chicken which was fed antibiotics. That's just speculation on my part. I am now trying to eat more meat that's antibiotic-free. I've been reading Jonathan Safran Foer's...
Thanks! You too Ben!...
I have an external pouch. They mentioned leaving the rectum in so that I could possibly get the j-pouch surgery in the future. Hopefully the suppositories stop the bleeding....
I had an ileostomy as well - 6 weeks ago. I had a colectomy so I have no large intestine. It was a laparoscopic surgery, so I had 4 small incisions plus one that was a bit longer - like a c-section...
Anyone else start bleeding from the rectum a few weeks after a colectomy/ileostomy due to UC? I guess the UC is still in the rectum even though I no longer have a large intestine. The doctor...
2 eggs scrambled and fried in coconut oil....
What kind of surgery are you getting? You're in your hospital gear when the anesthesia kicks in and you're in it when you wake up. It was strange to me to lay on a metal table instead of a bed. I...
Inconsistency. Stress from travel back and forth between continents and being on different time zones. Switching back and forth between weeks of eating healthy and weeks at conferences or other...
Whether you stay together or break up, the IBD will not be the cause. Relationships are bigger than IBD. It sounds like one of the issues is that he was "harboring his impatience." Perhaps it would...
My follow up appt is in a week from now on April 11th. Yeah, I was thinking about starting off with 1 or 2 miles and then working my way up slowly once I had a chance to talk to the doctor. So far,...
How long did it take you to recover from your ileostomy surgery to where you started working out again? I'm 5 weeks out and thinking about doing some light running this week. I did a half marathon at...
Great to know! Thanks Bania....
Great to hear that there are youtube videos about crusting the stoma powder. I'll check those out now. The doctor appointment went well thanks. The spot is going to be ok....
Thank you VeganOstomy and Cupcakes! This is great information! With regards to the underwear that I got at Target, the brand is Assets. It says spanx underneath. It says that it's a shaping panty....
Great to know! I have the same scissors :)...
Anyone ever had trouble from airport security for carrying the ostomy scissors in the hand held luggage?...
Hello All, I'm doing some research on ostomy wraps and would love your input. I'm looking for ostomy wraps for running and for holding the wafer in place throughout the day. So far, I found some...
Lots of luck and happiness to you as well Vicki! Clo, thanks very much for sharing your experience! I think that I still need to learn when it's "sleeping." For now, I'll just continue to shower with...
Thanks to all of you for the tips about the free samples! I just reached out to a few websites. Clo, good to hear that the redness has gone down. I will try the powder. My stoma nurse is in Denmark...
Thanks. I haven't heard about those products yet. I'll ask about them. I've just been using wet cotton wipes and dry ones. Yes, I have the SenSura Mio 1-piece pouch and I change it every day....
Hello All, I was just wondering what your experiences have been with taking care of the skin around the stoma. I had surgery almost a month ago. I have some redness on the side of the stoma...
I had surgery 3 weeks ago. I only had one day to decide. I'm a 33 year old female. I had a 2cm UC issue for approximately 6 months since July 2016 and started flaring up in mid-January 2017. I only...
I live in Denmark and I change it every day....
Thank you all! Doctors said that the surgery went well. Had it on Saturday, Feb. 25th. It's now Monday, Feb. 27th. I ate solid foods today and all is going well. The stoma is working and hopefully...
I will start the surgery in the next couple of hours. I didn't get the specific score, but the surgeon said that inflammation levels were very severe based on the colonoscopy and that it was uncommon...
Thanks Beave. I'll ask about the severity score. The next Remicade infusion is currently scheduled for March 3rd. I'm trying to ask and do all I can to understand/postpone this, but they also told me...
I'm mixing my dates up. It's currently Saturday morning Feb 25th in Denmark. I had my colonoscopy yesterday, Fri, Feb 24th...
They decided to do a colonoscopy yesterday, Feb 23rd. The fever got up to 38.5 degrees celsius or 101.3 degrees fahrenheit, but then it went down before the colonoscopy and hasn't gone back up. It...
Thank you Jane. I'll ask if they can rule anything else out, but I know they checked for c diff and other infections and there were none. The fever went away and hasn't come back. I was kind of...
At least 1 or 2 of the doctors are IBD specialists....
It does seem rushed. It's a team of doctors here and they all seem to agree that this is the best result. I sent my case notes to two other GI doctors, spoke with 3, and they seem to agree that this...
Surgery it is. They say there's no time to wait because I had a fever this morning and a colonoscopy showed ulcerative pancolitis and that a protective mucus layer was gone in 50% therefore putting...
Chicken broth or beef broth...
The worst that the ER can do is turn you away. I would go....
Thanks Beave. Good reminder to drink lots of water. I'm definitely trying to do that....
Thanks for clarifying. Yeah, UC can be a bit confusing. On a side note, I should probably mention that another "symptom" is that I lost 15 pounds - from 130 to 115 since I started flaring. I've been...
Thank you Eddie. I forgot to mention that the first set of prednisone pills did seem to work for a week, but then they stopped working. Good to know that if they stop working, it doesn't necessarily...
Thanks CCinPA. Didn't know that about inflammation levels in other parts of the body. I will ask about that. I haven't felt any joint pain but I wonder if there could also be inflammation could be...
Thanks beave. That's right. They never did a full colonoscopy. They confirmed UC with the sigmoidoscopy biopsy. They've done stool tests and ruled out all infections. I asked for Cipro just in case,...