Hi - I just got prescribed Enteragam (well, got a great big box o-samples). It just got FDA approved to help with Crohn's bloating and diarrhea. Anyone else using this? CCBoys - so far I mixed it...
dfdavedf - your experience on the SCD is amazing. What do you eat when you travel? Approximately how much time per day do you spend preparing foods? Do you make your own SCD yogurt?...
5th admittance since Halloween! Holy cr@p. Glad your doc is back - get yourself fixed up!...
The trick is to cause enough of a stink that it doesn't happen to you again without burning your bridges at this hospital. Talk to whoever the patient advocate/managerial type person is. There's no...
pb4 - yours is the signature that I always remember. My bum's broken too! I have not yet suffered the devastation of a public accident, but I've been very close many times and I'm surprised not to...
Can there be TMI on this forum? I was at a friend's house a while ago, and went to the restroom, and the person who'd been in there before me had unsuccessfully flushed.... HOLY FREAKIN' COW, I swear...
Thanks for the quick reply mtgman. I hope you're right and it's just some kind of weird strain in a place that ought to never be strained!...
I am in a flare - most of my issues include a lot of bleeding and bathroom dashes due to the bulk of the disease being toward the exit end. So, been flaring horribly all week, and now my butt just...
Rather than eating a meal, if you feel queasy you can buy glucose tablets from any pharmacy and eat 3 or 4 of those every time you feel shaky. If you'd like to send some of your extra insulin my way,...
How did you figure that out?...
If you're busy doing something, do you still get very tired and feel like you need to close your eyes?...
I think they're supposed to alter the gut mucosa NCOT. I take one or two of them when I need them, but would not risk taking them daily....
Yes - shortly after my diagnosis (by colonoscopy), my CD seemed to get a LOT worse. I didn't know any better, so I struggled on through all the D and bleeding, assuming it was the disease. I had at...
Iron infusions are no big deal. They put an IV in your arm and you sit in a comfy chair for a little while (I think it was about 45 mins). If your iron stores aren't too low, you could take it in...
Thanks for that OlderThanDirt (great nickname). I will give that pasta a try. Mostly, I eat what I'm hungry for. I generally avoid sugar-free or fat-free foods because I don't like the other stuff...
I take Entocort at night too. I've never had insomnia this way. No hunger feelings though - I think the others are right and you're missing some major food groups....
Bethany - hope you don't have type 2. Diabetes and Crohn's don't play well together :(...
I'll join the "I'm Exhausted" club! By 1pm I am whooped and have to lie down for a couple of hours. Also, I do a sport and it's very noticeable to me that my muscles start to ache much faster and I'm...
Ugh, I'm sorry to hear about your disease being so damn stubborn. I hope that you feel well enough to go home soon and that you don't need surgery....
I don't think I've seen anyone else with Type 1 as well. Two diseases centered around food and digestion - yep, it sucks doubly. Type 1 is the 'easy' one, there's a treatment that works 100% of the...
Has anyone read this book by Tracie Dalessandro? She's an RN and CDN who has IBD herself and talks a lot about soluble vs insoluble fiber and points out foods that heal vs foods that hurt (vs foods...
My labs just came back normal too but I can feel the inflammation (it hurts if I push on my abdomen) and I have about half the energy I should have. Bah....
Hi Mel, Sorry about your diagnosis. I'm using Entocort too. It's basically a topical steroid for your intestines, I think about only 10% of it gets into your system so it has very few side effects...
I asked this same question a couple of weeks ago. I've seen my GI since then and it's his plan to wean me down from 9mg to 6mg, then 3mg for long term maintenance. He says some people end up staying...
It just sucks when you're feeling fine for hours, so you make some plans, then end up rushing to find a toilet, or clenching to try not to fart (omg, I can clear a room sometimes). Sometimes I use...
It's very difficult trying to plan a day, maybe taking the kids to the zoo, or shopping, when I have no idea if I can be out in public or not....
How can you have normal BM's one day and nasty, bloody stuff the next? How can you feel bloated and in pain in the morning and then just fine (maybe a little tired) the rest of the day? I don't know...
Hey dorri, Have you tried probiotics yet? VSL#3 has a new DS version that is prescription only that some insurance will pay for. Humira might be my next step too. I used it a few times before several...
Do a search for 'Microscopic Colitis'. I believe you can only diagnose that with a biopsy taken during a scope....
Wishing you a fast and complete remission!...
Congratulations Momma!...
If you have gas, you can take Gas-X when pregnant. I was having horrible gas cramps, and the gas would not budge. It helped a lot....
Maybe if the scarring isn't causing me problems, I should stop worrying about it. I was hopeful that time could help it be more normal again....
So, folks who need B12 injections need them for life because their ability to absorb it naturally is gone forever? That's a bummer that a certain amount of absorption isn't restored....
Something I forgot to ask my GI... I'm thinking that a scar on your skin will fade over time, until it's barely noticeable. Does that happen in your intestines too? If a person has extensive...
Sorry your meds aren't working yet - did you just start on the prednisone? Take some extra calcium while you're on that! Prednisone usually seems to work for me, but I hate being on that stuff....
It's been about 3 years for me - and before that, the meds I was on never really controlled it....
Thanks gumby. It was definitely an eye opener when my doc described how bad it was. Good news though, my ins. will cover the VSL #3. If I'd known that, I'd have been on it for years already. I'm also...
I went from having a few 'patches' of Crohn's a few years ago, to having a colon full of it (or scar tissue from it) plus, now my terminal ilium is joining in the party. Apparently it looks like a...
The itching sounds like an allergic reaction to something. I was on a drug for a while and itched really badly - on the soles of my feet, palms of my hands, weird places. It was the drug. I would...
I think they help. If you go to VSL #3's website, they claim to have evidence that taking their product is beneficial to the gut - and they have diagrams of what it does. If you're not in a flare,...
Most people gain a lot of weight when they're on prednisone - you were on it for 4 years so it might take some time to get rid of it. Have you lost any weight since coming off the steroids? Do you...
I've never seen Holby City but I used to watch Casualty and now have the dang music in my head - or maybe it's the music from The Bill......
Judy - I've never even heard of avascular necrosis before. I wish doctors would give us a serious talk about steroid use and their side effects - if I had known all the down sides, I might have gone...
What happened to you on prednisone NiceCupOfTea?...
I'm on the 9mg dose at the moment. The only side effect I'm seeing is slightly elevated blood sugar, but nowhere near what prednisone does to me. It's not perfect, I still can't eat certain things...
Curious if anyone has used Entocort as a long term treatment. I seem to be responding pretty well to it and was wondering if it was a long term option if I try to get on aminosalicylates and they...
How about oatmeal? It's supposed to be soothing on the intestines too....
Thanks for sharing your story. Sometimes I need to read that other people deal with the exact same stuff from time to time. I wish I could wake up 3 hours early every morning - always so damn tired...