I hope you find a system that works for you. It's still early days and, while I understand skin issues are annoying and uncomfortable, the consolation is life without UC. I used to change my...
I had the option of a j-pouch but I chose an end oleo because I wanted to have the least number of surgeries. I was an unorthodox case for the surgeon - I decided to have surgery before exhausting...
Thanks, Richard. My surgery was 4 days after yours. I have an end ileostomy. My stoma nurse was a source of help and comfort in the immediate aftermath of surgery. I haven't seen her for about 4...
Hi Richard. Thanks for your reply. I actually had my surgery at the end of June performed by Dr Mark Doudle at Pindara Private Hospital. He is a really good surgeon and I can recommend him highly to...
The ileus (basically the small intestine not working) that JayBee's son experienced is fairly common. I experienced it and my hospital stay extended to 12 days because of it. The nasogastric tube was...
It sounds like your friend is on one of the immunosuppressant drugs. It's not so much an increased risk of colds or the flu but more serious infections such as UTIs and pneumonia for which patients...
ByebyeUC is right .... The main reason many people put off surgery is fear. These fears generally revolve around concerns about complications from surgery or the stigma of having a bag when an end...
Good news that the problems have been found and solutions underway. What your boyfriend experienced are not uncommon. I did not have abdominal abscesses but four weeks after surgery one of the...
I had surgery at the end of June but have not yet worn a belt or any other support. The advice from my ostomy nurse was to wait 3 months before wearing a belt. It was the same advice in terms of when...
Let me be clear that my post about immunosuppressants was not intended to scare but rather inform. It does not matter what you call the drugs .... immunosuppressants, immunomodulatirs, chemo drugs -...
After hitting the bottom with UC, life with a bag is a huge improvement. It is worth qualifying that statement with the realities of surgery and the immediate post-operative period. There is the...
You asked what the side effects of prednisone (steroids) are .... below is a link to a really good website that gives reviews of drugs from patients who have taken it. The reviews include information...
When I was deciding between drugs and surgery, one thing I pondered was not so much whether I would have side effects from the drugs after a few years or so but what impact the drugs would have on my...
As others have said, one very important part to your decision making is finding out if you have UC or Crohns. I'm assuming your symptoms are indicative of colitis and if you did have Crohns it would...
I have not had the same experience as you but presumably you were started on mesalamine enemas because the Canasa to which you had a reaction was oral medication. If that is the case, then you are...
I had surgery about three months ago and my surgeon advised that the best position to be in before surgery was to not be on steroids, immunosuppressants or biologics. The rationale was these...
If you go to the website I link below, you can search under the name of medication and find reviews of that medication by people who have taken it. The review information includes how long the person...
I have an end ileostomy and the way I think of the smell when emptying the bag is this .... no shit smells pleasantly fragrant, whether it comes from an asshole or a bag! Try to keep a sense of...
Sorry to hear of your boyfriend's complications. I had an end ileostomy about 3 months ago and, whilst I did not have the complications your boyfriend experienced, it is important to remember that...
Mine started as very mild proctitis 7 years ago. For that period of time, the only symptom was mucus from time to time. Last year blood appeared but was controlled with enemas. Then earlier this...
I had exactly the same issue...
As others have said, it's not possible to determine if the hair loss is caused by the drugs or the disease. However, Imuran is an old chemo drug from the 1950s, so unfortunately hair loss, nausea and...
Like cupcakes, I also have an ileostomy and to ensure my electrolyte levels are okay I drink Gatorade at least once everyday. So, that's another option for you....
About 3 months ago I underwent a proctocolectomy due to UC. My partner and I have a one year-old daughter and have been considering a second child, so the risk of infertility was also a concern for...
The best (and only) way to find out for sure is to have a CT scan. A bulge around the stoma itself is suspicious of a hernia, so if that is what you see then it would be worth getting confirmation....
There is no definitive answer to how long you need to have UC before damage to the haustral definition of the colon is permanent. It is the old proverbial "how long is a piece of string" answer....
And don't drink to the point where you can't empty your bag - that could be rather embarrassing!...
The general advice for people with stomas is to drink alcohol in moderation. Beer might cause gas and loose stools. Apart from that there should be no significant impact....
Essentially the same answer as what the non-professionals suggested, which is good for you to have confirmation. Regrettably, posting a question here will only get you responses from the...
Regarding the haustral folds disappearing, this could be permanent or temporary. As ipoop previously mentioned, scarring (from long-term inflammation) can cause permanent damage to the structure of...
Hello Disneygirl. The Crohns and Colitis Foundation of America seems to have a support group at Berkeley. Here is a link to the contact info:...
If you have a predictable infliction of UC then that would be quite rare. Nonetheless, you are under the impression that "in theory a flare shouldn't be possible" because you are on medication....
It is a little odd that you were advised to take only steroids without some other medication. Normally steroids are used as a quick fix to get really bad symptoms under control and buying time until...
Globetrotter, you will not find another person more against medication than me which is why I had surgery two months ago - to avoid steroids, immunosuppressants and biologics. The first fact about UC...
Give it at least a decade to see the effectiveness of the titanium implant and perhaps more importantly the side effects. Bear in mind that steroids were heralded as the miracle cure for a range of...
As you probably know, UC can (seemingly) randomly move from remission to flare. One of the few - if not only - certainties about UC for most sufferers is a flare will happen at some stage. It sounds...
I was also underweight before surgery due to the effects of ulcerative colitis. I had lost 20kg in the space of three months in the lead up to surgery. As a male, I was a healthy 80kg before UC had...
Mayo Clinic categorises UC according to several systemic criteria, including number of BMs per day, quantity of bleeding, cramping pains, fever etc. In terms of BMs, mild UC = fewer than 4 per day;...
Hard to know what "minimal inflammation" means in terms of location of inflammation but it probably means the extent is limited. Even when you have no visible symptoms, UC (as a chronic disease) is...
UC555, surgery was a big decision to make and one I don't regret. I was housebound by UC due to the frequency and urgency. I couldn't work, couldn't go to the shops and all the small things in life -...
UC555 - you initially mentioned you were going to the toilet 15-20 times a day. That classifies your UC as severe. Going to the toilet that many times is ruinous for both your body (eg blood counts,...
Cool ... there was no way you were a scientist! And never say never about writing on the topic of poo!!...
I had surgery about 8 weeks ago but for me it was not a last resort. Enemas and mesalmine did not work, and I was not prepared to accept the side effects of steroids or immunosuppressant drugs. I was...
I'm not sure what these "beans" are that come out of your stoma but the red flag is the bleeding .... If that bleeding is coming from the inside of your stoma then you should call your doctor as a...
I'd say this is a rare occurrence when a Healingwell thread becomes an academic discussion! It's a cracking transformation!! Elias says something similar, suggesting better manners and self-restraint...
By the way, as you probably know, the sociologist Norbert Elias makes a similar point to Taylor about the transformation of manners, speech, bodily functions etc since medieval times. I was looking...
Two or three hundred years ago, living near a sewerage plant would have been a relatively nice experience I'd imagine! Perhaps it's not just living near enough shit for long enough that desensitizes...
I'll have to look up Charles Taylor ... sounds interesting. I wonder how many times holding a poo under the nose of your mate led to a fight! Perhaps it wasn't all that offensive .... a book called...
Albannach, good question and I suspect among a certain audience it did shape perceptions. Of course, medical science was also advancing ideas about the bowel and its mysteries. It was these mysteries...
Super, congrats on getting your doctorate ... That is a wonderful achievement, made even more wonderful given the challenges of UC....