Hey Quincy :-) I am not going to go ahead with the j-pouch surgery. I was considering it, but when I looked at it objectively with my family, friends and partner, it became apparent it was due to my...
AKM77 - Hey'ya. Been a while. Still catching up on how everyone's going. Colectomy was scary as all hell, but my life is amasing now. Judilyn - Thanks for the thoughts :-) I have been so busy since...
ps. My signature was a tad out of date....
Its been quite a while since my last post. Last time I wrote on this forum was about August last year. I had extremely severe UC and had landed in hospital; a few hours away from death. My UC was...
Thanks for the update, I really appreciate it as I was forced to have the surgery 11 days ago and now have a stoma. I got the good news today that the doctors all think that once I have healed and...
Thanks suebear and dakotagirl. I have posted to the Ostomies board and will see what response I get. God this sux, my emotions seem to be on a roller coaster. One minute I think I'm ready and dealing...
Hi all. I have been on the UC forum for quite some time now fighting ever-worsening Ulcerative Colitis, but it seems I have lost the battle to deal with it via medication and now require surgery. I...
Hi all, I was wondering if any of you have had, or know of someone who has had the UC surgery (Colectomy?) in Australia. I have been told that surgery is the only option for me and its to happen in 3...
Hey Paul L - I know exactly how you feel. I have just run out of options and surgery is pretty much booked in for a cpl of months from now. Though I have the opposite problem, they won't operate on...
Thanks seconder and summerstorm - thanks for the reminder. I know its true, I just have trouble giving up on anything. You are right, at least having the surgery will let me go out and do stuff and...
Kam - Yes, you need to toy with the prednisone quite a bit. Some weeks you can get away with tapering and some weeks you have to put it back up by a mil or two. Abatacept is the only reason I was...
Things have gone very sour for me. No drugs are working and my colitis is now so bad I am in hospital. Looks like I will be having to have surgery as there are no further options. Surgeon came today...
Kam - Sadly, the trial dose and frequency was not enough to really help me more then stopping me getting any worse. Abatacept is not an option as my GI can not control the dose and frequency of the...
suebear - I do understand that, it is still a very scary prospect for me. I am 28, single and having a bag is going to make it even harder to find a partner... I am also deathly afraid of surgery as...
Basic jist of the story is that I came in on Tuesday to see my GI at 8:30am. By 9:10am, he had me in emergency, severe dehydration, malnourishment etc and have been in hospital ever since. I am now...
The Flagyl can in many people cause quite a bit of D (diarrhoea) and may well be masking the effects of the Prednisone. Be aware however that most people only respond to Prednisone a couple of times...
Its very hard to say what it could be without a colonoscopy. That is pretty much the only definitive way to know for sure. If it is colitis, it could also be caused by the bacterial infection C.Diff,...
Although the Abatacept trial I was part of (for 16 months) was interesting, my personal advice would be to avoid it. For UC, it is not that fantastic as the chances of getting a dose that will be of...
quincy - I got a shock when I went to Thailand, cuz that is EXACTLY what it was like. You had to pay to go to the toilet, they were rarely clean and you only got 5 squares of toilet paper, unless u...
I always get cramps and pains. I find its worse depending on the number of biopsies they take. I try to be really gentle with my colon over the next few days. Only drink water and eat soft, low...
Sami22 - Humira, although a biologic like Remicade, is not the same thing. These are protein based therapies, and the reaction your daughter had was most likely her body's reaction to the appearance...
I am very much also chasing info on those using Humira. I really think my GI's optimism that I should feel better within 3 days is a bit over the top. Everything I have read on this forum in the past...
Well, to be honest I can't answer for sure as the chances of me marrying a "girl" are pretty limited, but in general it wouldn't bother me. Though I will also admit that I have changed and grown a...
Hi All, I need to know two things: - How long did your Remicade/Humira take to work? - What dose were you on per Kg of body weight? Really need to know both of these things as I am on a Humira like...
ComedyDork - Yes, thats right. When your body produces antibodies to Remicade, those antibodies are specific to that particular protein. If you switch to Humira, it is a different protein and as...
I was lucky and got to enjoy most of my late teens and early 20's in blissful non-medicated remission. I was diagnosed at 16yo, in remission within 3 months and then didn't have any problems till I...
Sadly we don't get Metamucil wafers in Australia. Our only choices are the powder you have to mix in a glass of water or Metamucil pills....
ComedyDork - The mab set of drugs are all monoclonal antibody's used to inhibit the action of the pro-inflammatory signalling protein TNF-Alpha. Remicade (Inflexi mab ) was the first one to be...
Aye, another bloke here....
For those that are interested, the antibiotic Cipro has been added to the FDA's warning list ....
For me, the only fibre supplement that has worked has been Metamucil. I have tried 3 others without success. Seems Metamucil is one of the few made of Psyllium seed husk. The others tasted better,...
Aye, I am on Golmumab. I have passed the first part of the trial and it helped amazingly. Sadly, I ended up on placebo for part 2, but have since been re-randomised and am now back on drug as of late...
ComedyDork - Remember, Remicade isn't the only drug out there. Many people find greater success with drugs such as Humira or Golimumab as they are much newer/advanced drugs, and also have the bonus...
Yup - sinus issues here as well. The best thing I have found for it is a twice daily saline wash called Fess. It comes as a bottle and sachet's of saline mix. You combine warm water and the stuff...
I got the numb thing quite a bit when I was tapering off of prednisone....
The longer between doses of a medication, often the more time the body has to flush it out. As such, its action happens in larger "waves". Also, remember Azathioprine is a bone marrow poison. It is...
Just a quick update. The current randomization of 50 or 100mL of drug was injected yesterday morning. Now I just have to hold out until it starts to kick in. Things have degraded pretty badly and I'm...
Sea salt all the way. Its great. And yes, I too am a salt-a-holic! LOVE my salt :-)...
Call the doctor and TELL him you are taking her back to hospital. The doctors need to be more thorough this time round....
Sorry that you've had to join our bunch of UC'ers, but welcome to HealingWell kjea74! I hope that the posts here will be informative and also help you feel more confident that you can live a full...
So long as the request is approved, I will defiantly get either 50mL or 100mL of drug....
Haven't slept a night through for over 3 years... These days it happens on auto-pilot. Never found a way to stop or reduce it....
Ok, quick update. In this case, it looks as if my initial treatment in part 2 of this trial was most likely placebo. Things have been deteriorating since my last post and have become really bad. A...
That is AWSOME news Anna, thankyou so much for letting us know. You have given me hope that the drug I am on (which is very similar to Humira) will work for me. Glad you are enjoying life and feeling...
Eva Lou - Wow, I'm impressed, I had never even *heard* about IvIg until your post and I spend a great deal of time scouring medical Journals for the latest and greatest new treatments for auto-immune...
checkerjane91 - You will probably find a pattern in not the type of softdrink/soda you drink, but the fact its a carbonated drink. If you hunt back through the healing well UC posts, there have been...
Lisa - I would strongly suggest that you kick your GI and your Urologist to talk to one another. Prednisone CAN be a useful tool. If you have never used it before, it will probably work for you...
Lisa, unless you are SERIOUSLY immune compromised, you can eat sushi to your heart's content. I eat it a lot, its great for UC people in general - very healthy, rice is great for you and the fish of...
I have looked into this, but have not tried it yet. I found some info on Kefir for those interested......
Yup - I found that it was the dust in my house and at work that made me extremely vulnerable. Got a HEPA filter for home, got a HEPA vacuum cleaner and wear a 3M doctors mask at work when the air-con...