Good luck i hope it works buddy
might go doctors tomorrow and see if he can do anything but i doubt it :/ i have a endoscopy on the 10th so just as well i guess lol
when i first started using them i saw a major improvement and i ate everything but now i doesn't do anything for me lol i feel anyway :s and hes upped my loperamide to 4x2mg a day and i'm still taking the disgusting yet useful questran although at this point its doing nothing at all lol, safe to say im not in remission.
I always had to stop in the morning and didn't eat anything heavy the day before soups and stuff. I always suck on butterscotch or other hard candies to get me through the solution.
well i'd have posted yesterday but i had a day of sitting on the toilet acting like a pressure jet washer lol :rof:
but hes having a sit down with a few other doctors to discuss further treatment so we will see.
I've had the one week prednisone before which was intense but worked. Sounds like what mine was, am so glad I had my terminal ileum removed. I am doing so much better. Prayers to you.well i'd have posted yesterday but i had a day of sitting on the toilet acting like a pressure jet washer lol :rof:
but i did have a flair up at the time and it says on the slip to not go ahead if you have a flair or something but my GI knew about this and was prepared to go forward so i did too
i didn't follow any guidelines i ate whenever :lol: i though because i was going so fast it wouldn't matter and it didn't to be honest he put on the results sheet it was crystal clear in there (not those exact words) lol :eek2:
but i was pretty ulcerated here and there but the join was the worst they couldn't pass through the resection but i think that was due to me being in a flair up but all in all i wasn't really pleased with the result
that was my 2nd and last endoscopy lol its such an awe deal.
Also my local GP gave me prednisolone and only gave me one week of 6x5mg is that normal? because in the past i've always had to reduce them eventually to 1 a week :confused2:
Edit:
he put
Findings:
patchy colonic disease in the ascending colon and sigmoid colon-mayo III (deep ulcers)
Anastomosis shows an element of narrowing and unable to enter with colonoscope but deep ulcertaion could be seen at the anastomosis and beyond in the neo terminal ileum (ruttgerts i3)
about an hour for the infusion. plan for around 2 hours though, as it takes time to get the IV set up, and then they monitor you for 30 mins afterwards. Reactions are very rare to Stelara. I had nothing.
yeah i've previously been on vedolizumab and they made me wait 2 hours after the 30 minute infusion and it took them a while to prepare so i was in the hospital all day :mad2: but thanks for the reply
all the best!yeah took them around 30-40 minutes to set the IV up then the infusion took 1 hour and i had to wait an hour after it. Practically in the hospital all day :yfrown: AGAIN lol yeah i didn't have a reaction so all went well so fingers crossed
I hope everyone has an enjoyable festive season. Cheers!
how much cheese do you have to eat and how many hours before :ylol2: and that's great to hear, glad you're doing well. Personally i think I'm in remission just this Bile acid :thumbdown:
Not great but doing better with the stomach since the blood clots appeared.
can try look for a solution online but that's all hear say stuff :/ goodbye driving lessons lol oh and i can now bench 90kg lmao which is irrelevant but that's my 3 months in a jar haha.Good to see you, Edgey. I hope things get better soon.Heyo people
I've put some weight on which is always a good sign, the bowel is operating as it should (for now) but my toilet frequency is still there although my stool isn't so bad just lately (it has fazes) i still can't go out for my house for long periods of time i think I've developed a nervous thing for it too which makes it worse and I've been to see the Gastro today and he said he hasn't got any treatments for the toilet frequency just the Colesevelam which I'm currently already on along with the Loperamide, so it looks like I'm jailed in my house forever it seems
Hope all of you are doing better <3
Once again thanks for reading
Ya the only thing that helps me slow the flo is Oxy, even half a tab will work sometimes. For me going back on the RICE diet helps too....just gets so boring....any oils or lactose kills me too. My go to is childhood PBJ which works for me. Well almond butter a lot of the time. Take care it's so ebb and flow with this disease.Heyo people
I've put some weight on which is always a good sign, the bowel is operating as it should (for now) but my toilet frequency is still there although my stool isn't so bad just lately (it has fazes) i still can't go out for my house for long periods of time i think I've developed a nervous thing for it too which makes it worse and I've been to see the Gastro today and he said he hasn't got any treatments for the toilet frequency just the Colesevelam which I'm currently already on along with the Loperamide, so it looks like I'm jailed in my house forever it seems
Hope all of you are doing better <3
Once again thanks for reading
oxy? whats that is there a proper longer name for it?
I have been taking pantoprazole for years every day and it is the only thing that has worked great for me, plus maybe Extra Strength Gaviscon added to that occassionally. Recently I went off my pantoprazole ( a family nurse practioner suggested the change ) for 3 days and took Zantac and Extra Strength Gaviscon each day and I felt so sick that I went to the ER ( but they did not do much for me at the ER anyhow. ) Tomorrow it is back to my pantoprazole.
I DID NOT have to parallel park for my driving test ! I had a late afternoon appointment and the Motor Vehicle Department was running behind that day ! I drove my parents car to the driving test and it was a "tank", a big, green Ford Galaxy 500 ( 1970 ? ) My dad taught me how to drive an automatic and sticK shift, he must have done a pretty good job because I have been driving for 40 years with no accidents. I have been driving a stick shift for 40 years, I almost don't know what to do if I drive a "fancy" automatic car ! My first car was a used 1972 Chevy Vega and I drove that poor little car for over 8 years. Oh, I'm rambling once again. :rof:
I agree that "BRATT" diet works but so boring ( Bananas, Rice, Applesause, Toast, Tea. ) PBJ agrees with me normally. :sun:
Yes, I would get a second opinion. Never give up. It does get frustrating. I have enormous stress. I take Clonazepam for anxiety, but life-style changes are probably a safer way to manage stress.How do people live going to the toilet 10 - 20 times a day, i mean i used to go 10+ and life was absolute rubbish i can go up to 6 now like and still can't go out anywhere unless there are toilets, i wanna start driving and stuff and have so many ambitions but i can't do nothing lol im a detriment to everything at the moment.
I spoke to my gastro doctor about my toilet and he said if it is bile acid malabsorbtion (which im already being treated for) and the current meds youre taking arent working theres not much we can do, so what do i do sit in my house for the rest of my life
quick opinion and rant lmao sorry
this is already my second opinion and ive seen private doctors but theyve been naturopaths lol i've tried codeine and i take 2 immodium twice daily currently, before i had crohns when i was younger i used to go to the toilet 3 times a day but obviously i could hold it then so there was no issue so i think i need something really strong tbh lol yeah ive cut most fatty foods out and thats helped a lot tbh yeah and i do stress about it alot and i think that contributes a lot to it but i wouldnt know where to go about that issue
lolyeah i find i can go out if i eat then wait for myself to go to the toilet a few times then im fine to go out for a few hours if that lol but i have no food in my body but i dont feel like im going to drop as ive ate a few hours ago but ive been having lots of appointments lately and lost a stone in weight lol (14lbs) is so annoying yeah im gonna go for my driving lessons i think and just not eat i have to sacrifice that much to improve my life.Yes, I would get a second opinion. Never give up. It does get frustrating. I have enormous stress. I take Clonazepam for anxiety, but life-style changes are probably a safer way to manage stress.
Right now I am also on the toilet about 6 times a day. But, hoorah, today I was outside my apartment running errands and an appointment and I did not have to run to a bathroom at all during that time. ( Wow, I had a boring 1 1/2 hour wait for a blood draw. )
You have to become assertive when battling these diseases, because after all it is your body, your health and your life. :hang:
Take Care. :rosette1:
ika:
