That's about how much I go. It's a huge improvement from the 15-20/day, so I'm grateful for that. But the Remicade just hasn't quite gotten me into remission. I'm also on imuran, lialda, vsl3 and immodium. I've had 5 infusions.I had my 3rd remicade treatment about 10 days ago and it hasn’t helped at all.
I called my doctor and told him how I was feeling so he prescribed me antibiotics and ran a CT scan. CT showed my small/large intestine was inflamed but no blockage. I can’t find anything to help control my diarrhea.
I am averaging 5-6 bowel movements per day and it is exhausting. The only thing to date that has worked has been some pain meds which suppress/relax the gut.
Any insight on what else i can try? i even did a gluten-free diet for 6 months along with a ton of natural supplements.
The only negative was seeing the people in worse shape than me although it certainly reminds me how lucky I am.:allright::allright::allright:
Thanks Judith for your info. Are you able to eat cooked vegetables? I'd love to be able to eat raw fruits and veggies since that's what my diet consisted of before getting dx'd with Crohn's.Hi Niklovely, I'm still very careful about my diet and my tummy certainly lets me know if it disapproves. But now I can eat almost normally, still no raw fruits or vegetables, but can manage all other foods quite well. I'm French and love to cook with onions but Ohhhh they do give me awful gas for a few days. I am now recognizing most of my sensitive foods and it's been nearly 6 months on Remicade for me. Yes, you will be able to add new foods slowly, just keep notes on which ones bother you so you can stay away from that for a while. Good luck Glad to hear the infusions are going well.
You are definitely right, it does seem everyone reacts differently to things.Yes Nik, I do eat cooked vegetables, but am careful about items with a skin, such as peas. It seems in small amounts it's ok. Careful though, through this chat area I've learned that each of us has a tummy that deals with Crohn's in it's own individual way.
I'm smiling Nik, because I think the confusion is part of the illness, at least it is for me. Good grief, where do we turn next? Perhaps you should call your Dr. and ask if he/she thinks you're ready to add other items to your diet. Carrots and asparagus are some of my favorites and do ok with me. Just make sure they are very well done.
There is a section in this forum that deals with food and diets. Go ahead and take a peek there. You may find some interesting information in that area.
All the people here are just so great at helping each other out. Glad you found us.
I'm patiently waiting for responses and appreciate any that come in.Wow, Salads? Really? I haven't had but a few bites of salad in a very long time. I suppose I'm just scared to try it at this point.
Seafood is good with me, almost any kind, but not fried. And chicken is not a problem at all. Your Dr. is right about the dairy, but it doesn't keep me away from my ice cream, just in small amounts. I've learned to chew my food really well.
Tonight we're having broccoli quiche, which does have some dairy, but then again, everything in moderation.
I'm sure others will pipe in soon with their thoughts on 'good eats'.
Combo, maybe so. I wish we could really tell what was going on there because its so frustrating not knowing!LOL Nik, baby steps, baby steps. Yes try them one at a time and then see what happens. Perhaps it was the combination.
hey laurajh,Hey I had my 1st infusion yesterday and I was wondering if anyone has ever been in any pain afterwards because last night I couldn't sleep as my bones were aching and the same all day today especially in my upper legs, shoulders and arms. Been back for a blood test today at the hosp to check my immune system but my doc doesn't seem to know why I'm aching like this. Any ideas?
you were having a lot of blood like me weren't you? Does it stop it straight away? I really hope so. The predfoam and steroids both stopped working completely since last weekend. my consultant told me to stop taking the predfoam as it would be causing damage then good since it isn't working but am on a tapering dose of the steroids cos obviously he can't take me off them all of a sudden and i'm taking them with pentasa. Very sick today 9 bloody Bms and this salty liquid coming up my mouth. I get this bad pain on left side on and off. I can't wait for monday morning to come!! I just hope my body is not going to shut down over the weekend my hg was 9.5 last friday week hope it has not gone any lower have had another week of bleeding since then. but i am staying positive about the remicade, i looked at one of the crohns patients from their website, the first girl and she sounds exactly like me, nothing stopped the bleeding and it worked for her almost straight away so fingers crossed. :dance:hey laurajh,
i had my 1st infusion on tuesday and ive been getting sore joints too esp in the hip and shoulders. has it eased up at all?
other than that it seems to be working really well.e
JU
Hi sickinlk,hey laurajh,
i had my 1st infusion on tuesday and ive been getting sore joints too esp in the hip and shoulders. has it eased up at all?
other than that it seems to be working really well.
JU
Heya Karj,my doctor told me yesterday that it seems to work different for everyone and it can be the 4th infusion before people really start to see the effects. the nurse also said this so don't despair yet .
I am seeing an improvement straight away but that is because my problem was constant bleeding. nothing has been working to keep it under control and this was my last chance before surgery. But I can't believe how fast it seems to have kicked in from the bleeding point of view. I haven't had a BM yet to see how much I have calmed down but its 9.30 am the next morning and I haven't had to have a toilet trip since the infusion, and I eat my dinner and everything yesterday as normal. I made it through a whole night sleep without having to get up at 4am. so Remicade so far I LOVE YOU
Jen, I am between treatments 2 and 3 on Remi. My Crohn's is in my Ilium too mostly but that's not the problem now, it's been my butt, with pain and bleeding in the perianal area. Ouch. Yours sounds mamothly painful compared to mine. I like your attitude. I can tell you are a winner and I'm sure you wont let anything you down. Keep fighting and let the healing happen every day.I'm just in between infusions two and three...number three is next Friday. So far I haven't had any horrible negative side effects from the remi, but I haven't had as much progression as I had hoped for! Call me impatient, but its tough to wait for results. I've been in about a three yr flare. Two days ago I spent 12 hrs in the emergency room. They were going to admit me and put me on iv prednisone due to my inflammation levels. My original reason for going to the er was dehydration and pain. I have CD in my terminal illeum And esophagus. Its very painful when I eat or drink anything. Some days I'm lucky to get in 4-8 oz of boost plus nutrition shakes.
I've read that a lot of people on here have almost instant improvement with the drug, but not me! Lol! Its very frusterating, but when I come on here I'm able to laugh a little, smile a little, and hope just a little more!
I'm still looking for even one other person that suffers from crohns esophagitus, as I do, but that's starting to feel like a lost cause! My drs aren't sure what will be next for me. CD is so individualized to begin with, but having CD in my esophagus makes its that more difficult for the drs to tell me what expect next.
As I said, I do get frusterated, and my recent er trip did a little number on my spirits, but it is normal for it to take up to your third infusion to start to feel results, right...?!!
:rof::rof::rof:Heya Karj,
me tooooo!!!!
maybe we've got better stuff here in Eire. woohoo. i love remi too.
JU
I have been worried about this too, but I think it might just get a bit thinner? I don't think peoples hair have fallen out but then again I could be wrong! hope not though:shifty:. And don't worry I was very scared about it, my doctor wanted to try me on it a few years back but then it was so new over here in Ireland, there was not a lot of info on it. so don't feel stupid we all on the same boat :ysmile:Wow! Is there ever a lot of people on remi, and it appears that it really works! I fought my doctor for a year cuz I was terrified of remi.... I read to many bad things about it in these forums, but I gave in and had my first infusion yesterday. Had a mild Bach ache near bedtime, but other than that I feel no different. I was so scared of remi and now I kinda feel silly for over reacting. Just curious though, for those that have been on remi for a couple years, any hair loss? I would be.devestated if my long beautiful hair fell out. I'm happy for everyone feeling some relief with the use of remi, and for those
that aren't... Hang in there!
Diagnosed in 1990 at age.of 9
Tried everything, only prednisone worked over the years
Ditching the pred. And trying the.remi!
Hey sorry to hear your now steroid dependant. Can I ask how quickly you tried coming off? I've tried coming off twice and both times ended up adrenal suppressant. I'm on azathioprine, infliximab and still on pred. Managed to get down to 3mg now but i've had to come down 1mg every 2 months. Sadly I have been on them for well over a year now and will still be on them for another 6 months. Its not ideal but now its down to 3mg the moon face has reduced!! I was really nervous about infliximab and it took about 3 infusions before I felt the benefits but it has really helped me. I've taken a skin reaction to it and ended up rather spotty but its a small price to pay to be able to feel better.Hello everyone!
Ive been advised by my consultant that they are going to put me on infliximab as they have tried Imuran and 6mp which both have failed my body can't handle these two and i get side effects such as severe blood and diarrhea (which doesnt happen before taken these meds).
Currently on 40mg pred, which keeps things under control but everytime i go below 20mg i go get major flare ups. Been told that im now steroid 'dependant'..and keeping me at 30/40mg.
Been on ped for 4 months now..how long are people usually on pred for?
Kind of nervous going for infliximab as the GI keeps tell me that its usually the 'big bomb' and last resort.
Any advice/tips would be lovely! Thanks!
when are everyone else's next infusions?
so far the schedule is:
Nov 15: katiesue
Nov 20: kromom
Dec 1: RHOV
today:Feagain
it would be cool if some of us were getting our infusions at the same time
i actually DO get my infusion w a very nice new friend who also has CD. The first time we talked about CD/infusions/drs/meds... after that we didnt anymore! we're both in remission and life is good!
Thank you for the support.dixiedoll everyone is different. i saw improvement after 1 infusion and i know some never see any. unfortunately i caught a dose and had to postpone my 2nd infusion so keep well and warm. i too had no luck with pred but i did find once i went of it that it must of being keeping my uc at bay cuz my symptoms got worse again.
pred made me gain 10lbs too but now im of it its started to come of and my appetite is settling.
hopefully you get some relief soon.
ju
Hello everyone, will be starting remicade again very soon,
Just had a resection july23/12 now I have a post surgery infection and am hooked up to a vac system, unable to start remicade until the wound is closed, hopping that will happen soon....anything I can do before starting that might help?
No Problem!! Remicade has saved me. As well as having an ileostomy. I am healthier with the combination. Labs are actually within normal limits, which is amazing considering I was on my death bed prior. Having an ostomy is great because I dont have to drop everything and go to the bathroom. Which comes in handy in the medical field(like surgery) The ONLY problem Ive had with Remi (knock on wood) is a reaction when they infused too quickly. I dont allow that nurse to treat me now I think of the disease as a gift. I know what its like to be in chronic pain, scared, alone, and frustrated. Therefore my patients recieve excellent care from me Good luck with your route of treatment! And if you want to pursue nursing....go for it!! You already have the patient side down!hi thunderstruck,
good for you for going back to education. im thinking about studying general nursing next year and i was worried about being on remicade and/or having a stoma. have you had any problems?
also did you go ahead with infusions when you had a cold or was sick at all.
lol. you might be sorry you offered to answer questions.
thanks
ju
lucky you. never heard of such things being done on a sunday.I've had the same appointment for 3 years. Sunday morning @ 6am. Every 8 weeks. I am the only person in the room until 8ish. I get mine every 8 weeks.
Hi everyone - new to the forum, and its been great reading through everyones experiences.
I've been diagnosed this year with Crohns (TI) disease. My brother was diagnosed with ulcerative colitis about 10 years ago, and I kinda guessed I'd end up being stuck with some sort of IBD haha. Due to start Remicade on the 17th October...and pretty nervous. It has taken the doctors SO LONG to confirm crohns and get me onto medication, so this is the first treatment I've ever been given.
Any advice?
Hope you're all well x
Hello thanks for the welcome.chattertess,
hi and welcome,
you are being put on a very severe treatment for a newbie so im guessing your symptoms are really bad.
funny did they not even try steroids 1st.
im on remicade. had my 1st infusion last month if i could just get well enough to get my 2nd i'd be flying. its been the only drug that has worked for me.
ju
did you get it beach bumoff for take 2 on my infusion today ( turned away last time due to water infection) I think I can feel a cold coming on, but I don't want to mention it as they might say no again :/
Hello momma2three,Hello
I am very worried about him, and am not sure of what's going on. He has been extremely tired lately also.
Any help is greatly appreciated!
Thank you kindly