Mine was also laparoscopic. I have been practicing eating every 3 hours something very small...just today, but it seems to be helping. I think I had been eating too much at a time....
Awesome! I love hearing all of the encouraging success stories!...
That makes me feel so much better! I am only 3 weeks out from surgery. I'll be having a reversal hopefully about 6-8 weeks out so I guess it is just something I may need to tolerate. I usually empty...
I think dairy may be part of my problem...and carbs. I'm not even sure what to eat. I love my carbs!!!...
I am new to having an ostomy. I have noticed that I tend to get a lot of air in my bag, especially during the night. It seems like a lot to me. I do not like how often it seems to get poofy with air....
Thanks for the encouragement and the replies!...
are leaks pretty common, or do most get by ok?...
Hey everyone! I am usually on the Ulcerative colitis forum, but headed here due to recent events. I had step 1 of 2 part j pouch surgery May 22. My surgeon says if there are no leaks I can have step...
Thanks for the encouragement! I went to jpouch.org, but honestly a lot of stories that I happened to first read were not so positive and I wanted to stop reading. hah!...
Thanks! My surgeon says I may be going #2 several times a day, but thats really all he said. I tried to get an idea what that meant, but I am not sure I'm prepared for that as I haven't been SUPER...
Hey everyone! Is there anyone here who has a j pouch? I am having surgery next Friday May 22. 2 steps. My surgeon thinks I can have my takedown surgery as soon as 6 weeks post op. From other things I...
I have been on entyvio 8 months! at 5 months I was in clinical remission and at 6 1/2 months a colonoscopy showed no active disease. Things were looking up! What the heck happened!? I did see a...
Meds I have tried:Asacol/Delzicol Remicade Imuran/6-mp- both cause severe vomiting within a few hours of first dose simponi rowasa prednisone- doctor has cut me off canasa - currently using entyvio -...
Thanks everyone! My last scope was the best one in a long long time! It was so hopeful, but it seems I am flaring mildly again and it is so frustrating! I do not want to give up on entyvio!...
Hello! I am on Entyvio and my GI says I am the only patient who seems to have had any success with it. This took a long time..about 5 months to start noticing! However, I have just started reversing...
Thanks! I get paid Friday at which point I will buy the 14 mg patches and try them out. I may put them on in the evenings after work initially in case I do start feeling sick again....
I did not smoke before and yes I started by cutting it up, but was careful about the sizing. I think I did bump up to much too quickly this time. Thanks Bananagirl, I remember reading your posts...I...
Thanks! That's what I figured it was. I did a few days at less than 5mg, then up to about 7, then now I am at about 15mg. I took it off at lunch time and ate and I feel much better. I think I am...
Ok when you say overdosing... Im ok though right? Like I don't need to seek medical treatment?...
I read several posts about people using the patch. Last week I bought some and have been using them. My symptoms have been improving ( no bleeding for 3 days now ). I have been cutting the patch....
I have had the same thing going on the past month too! I finally think I am better, but now I think I have a respiratory infection that I caught from my daughter!...
Please try to stay positive. I know it is hard. I was in the same place all last year ups and downs but I was so ready for them to just take my colon out. I finally got to simponi after trying...
I tried Remicade first and it didn't work well enough. Ended up in an even worse flare by the end of the year facing possible surgery if Simponi or Methotrexate didn't work. I went with simponi and...
I feel like I have the opposite type of disordered eating. After coming out of a flare, once I feel well for a month or so, I usually start getting to where I binge eat often. I have no idea if it is...
I hope it works for you!!!...
I have been prednisone free for 3 whole days now! I tapered by 5mg. For the past year everytime I got below 20mg of prednisone I would start bleeding again. I tried lots of things since last January....
So nice to hear stories of others using this med! I am doing really well so far! I am down to 5mg of prednisone as of today. I haven't had much symptoms...have had a few minor (mucous, light light...
I was on prednisone off and on pretty much my whole pregnancy because everytime I tapered off I got sick again. However, I tapered at 10mg each time. My daughter turned out 100% healthy, but I never...
Indycat23, are you planning to just maintain 5mg of prednisone? Or are you trying something additional to try to wean off of it completely? I am so afraid I will still not be able to wean off of the...
I have to say it led to a big, bad flare for me! I wish I would have been more diligent with my meds! When I was feeling well I would forget to take them or I didn't think it was huge deal if I...
When I was really inflamed I could not retain the enemas. I started by using only about 1/4 of the enema and I couldn't retain it very long, but as inflammation lessened I went up to a half of the...
I get so excited to hear about new possible options for us! I hope they consider it for ibd as well!...
I am feeling so optimistic about simponi. I really can't say weather or not it is working yet. First dose was just over a week ago and I do my next shot next week. It was so easy to do and didn't...
Thanks! I appreciate the advice/comments!...
Ok thanks! The more I have thought about it I realize that if the meds weren't doing the trick before, they likely won't do the trick again, atleast not for long. I think I was just feeling extra...
Yeah i do realize i need to start sometging now, but i guesd i just was hoping maybe simponi would not be necessary afterall. My previous gi wouldbt give me more than 20 mg of pred ...if i taper...
Thanks! That is what I was hoping to hear. I guess I should call and discuss this with my GI. I really would prefer to go back to a 5 ASA if that works for now. I worked for a long time before! I...
Ok..call me crazy or uninformed if you will.. I had been in a flare since January 2013...lost lots of weight, bleeding a lot, no energy at all. I tried remicade with only some response, which did not...
I would say for me it is usually stress. My first major flare was after death of a close friend. I had small flares off and on. Now this current flare started over a year ago when I was battling Post...
Thanks everyone. I talked to GI yesterday. She told me to stay at 30mg of pred until atleast I get started on Simponi (waiting for insurance approval). She also approved me to use the enemas again....
Yes. I have tried Asacol/Delzicol and remicade. I also did enemas for a while, but I could not retain them when inflammation got so bad. I was planning to call Doc today and ask if I could start...
So I started 40mg of pred early this month. I am now down to 30mg and tapering to 20mg tomorrow. the past few weeks I have been having solid BMs and less urgency, but when I have BM there is still...
I feel your pain! I had been doing that for months! I started back on Early this month and it took a week or 2 to kick in good. I am now tapering down and still bleeding a lot and occasionally feel...
I was curious how long simponi took to kick in and work too. I am tapering pred right now. I am on 30 mg and bleeding has picked back up quite a bit. Makes me awfully nervous....
thanks bananagirl! It helps to hear of a positive experience! I did well on remicade for just a few months and it stopped working pretty quickly. by the end of the year I was in a terrible flare and...
Thanks for the response. odds do not sound very promising with either drug. Does anyone have personal experiences with either? I know everyone is different....
So nervous! My doctor has discussed both of these meds and is pretty much letting me choose which one I'd like to try next. I am leaning toward simponi, but nervous because remicade failed. I am not...
The good thing about my new GI is that she seems to think surgery would be a bad idea for me at this time. ..like I have too much hope of remission to consider that an option right now. That was the...
We did do test for C diff already which was negative. I am pretty confident the result was accurate because I have done a few tests. I have not tried any other rectal meds. The rowasa used to help,...
Thank you! Simponi sounds promising! From what I have read, Methotrexate doesn't even seem to be very statistically beneficial....