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Living with Crohn's
mindylee posted:
I was diagnosed with Crohn's a little over 3 weeks ago. I was put on a gluten free/dairy free diet and given Prednisone and Apriso. After about 1 week I was taking off of both because I was having a reaction to the Prednisone and the Apriso wasn't releasing early enough into my intestine. I am now on Budesonide and Pentasa and taking probiotics 3 times / day. I suffered from severe constipation prior to being diagnosed. I struggle to have BM's still during treatment and in fact don't ever have the urge without drinking Miralax once / day. When I do have a BM, it is very narrow and next to nothing and I really feel no relief. My diet right now is VERY limited....gluten free/dairy free mashed potatoes, yogurt, Body by Vi smoothies, scrambled eggs and applesauce and obviously LOTS of water. I am starting to feel better but still struggle with BM's on my own without the Miralax and I've tried to introduce some things to my diet over the past 24 hours, with no luck....I just hurt, bloat and feel very gassy. When will this go into remission? I am miserable and am getting sick of my very limited diet but am afraid to continue trying things.....
jaimem92 responded:
Hey, sorry to hear you're feeling so crummy. When I was first diagnosed with Crohn's they put me on endocort and I pretty much just drank ensure. It takes awhile. I want to say I was pretty touchy with what I ate for about 6 months. But everyone is different. I've been on Remicade now for almost 4 years And now my Crohn's is pretty good(for having Crohn's) I work 2 jobs and live a fairly normal life. I still have to be careful, I do a gluten free diet, and you kind of just learn to be in tune with your body. You know what days are ok to eat certain things.. Ice cream is a big one for me. Somedays it's ok, others I get pretty sick off of it. Hope things start to turn around for you
hannahleigh89 responded:
The narrow stools indicate to me that you either have some pretty severe inflammation going on that is causing narrowing of the digestive tract or that you have some kind of blockage that is not allowing stool to pass through, except narrow pieces. If it is inflammatory related, it's hard to say how long it will take. Without being able to take prednisone, inflammation can be very hard to get under control. I also had some luck with the Entocort, but limited. But I'm not the right person to base that on because my whole story is a little jacked up.
mindylee replied to hannahleigh89's response:
Thanks Hannah and Jamie! I just had a CT enterography (?) done 2 days ago, patiently waiting for the results. My BM's are like puree'd food. Intercourse is painful with bleeding (sorry if TMI) and I have a constant, sharp pain in my left pelvic area. All of these things are the reason my doctor had me go in for the CT. Sadly my middle sister and her 17 year old son have both been diagnosed with Crohn's within the past 2 weeks. I am getting by but just keep hoping every day that I will start feeling better. I'm doing a great job of avoiding dairy, raw fruits and veggies and gluten! Thanks for all the feedback and advice. I really appreciate it and love the support on here!!!! My sister said we should get shirts that say "I hate my guts" lol Have a great week everyone!
sjblanch1984 replied to mindylee's response:
I'm having a lot of the same problems Mindy. I am in almost constant pain or discomfort. I can't eat a lot and it just doesn't feel like my stomach is digesting much. I get really hot sometimes. I'll eat dairy, but only with lactase pills and i don't do a lot. I don't feel like i need to go much. It's either like i'm backed up or it's because i'm so inflamed, not sure. I've also had really rough time with prednisone, eventhough i was on it for years. It's like if i take it now it makes me really hyper, i can't eat at all. I had an endoscopy-normal and a colonoscopy- some ulcers and active crohns, that was about it. All bloodwork was normal. I lost 55 pounds since May. I'm curious how it worked out for you.
sjblanch1984 replied to sjblanch1984's response:
I also get really bloated.
LisaLisa1225 responded:
I just read your post, and am sorry to hear what you are going thru. I too have crohns, 7yrs now. Started with going too much to the bathroom . And was put on pentassa and a bunch of other stuff. Stopped the pentassa because of constipation. Now if i go once every 3 days its a party for me. (with the help of Senna plus). I now have gastroperisis. Which means my gut doesnt digest normally. The food just sits there until it decides to digest. So i now live with constant constipation, full feeling and bloating. I have to eat small amounts of food, when i can eat(solids). Can not intake food high in fiber. (fresh veggies and fruit). I dont have a problem with dairy, thank god. At one time thats all i could eat. My GI wants me to try a new medicine for the slow digestion and constant constipation. Crossing my fingers, so tired of this full and bloated feeling, all day everyday. I do drink Ensures when i know im going to have a bad day with solids. Dont know if i helped,,,,but it sure feels good to know that i am not the only one out here feeling how you feel. Hope everything works out for you. You and everyone here are in my prayers. Anyhow, thanks for listening to my story.
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