I've been on Remicade for a little over 10 years. Occasionally I flare up, but that usually has a secondary cause - like pregnancy or something. It always gets back into remission. The only side...
You may need to increase the probiotics dose. When I'm on antibiotics, I take Florastor 4x per day....
I hope it works well for you. I dread the day that Remicade stops working for me - it's been over 10 years, and it's still going okay. I have zero desire to do injections or to try to play the game...
Could your GI write a letter to get you exempt? I know for Remicade, the insurance tried switching everyone, but those that were already on the name-brand were allowed to continue, whereas new...
Have you tried a probiotic? Florastor helps me when my gut gets imbalanced....
I haven't. And she hasn't. :'( That's concerning....
I know, I feel terrible. Four kids under the age of 10 has burned me out. I barely have time to think....
I thought about you all day on Friday, Ides! I just wasn't able to get on to post. I hope you had a great day!...
Oh that sounds so fun! I would actually start by finding the nearest infusion centers that would do Remicade, then ask if they would accept orders from your doctor. They probably won't, so you...
I agree that Humira would be your next best bet. I imagine they could make the switch much sooner than waiting until August for the appointment. That's a long time to wait, especially with fistula...
I found out I had Crohn's the year before I got married. I just had my 4th kid earlier this year in January. I would do it all again in a heartbeat....
13 years....
Even healthy people get bad diarrhea on antibiotics. Are you taking a probiotic? I would do Florastor at least 4x a day if I were you. It should help....
It could also be adhesions....
I had one, but it was after 8 rounds of c. diff. and not because of Crohn's. It cleared up my c. diff. completely. I also increased my Remicade dosage at the time, so I'm not sure if my remission was...
Sorry this is a late reply, but that's completely normal for prednisone, at least for me. :)...
If entocort is working, then honestly he probably does have Crohn's. No one in my family had Crohn's, either....
Thank you! I will be relieved to see the CR surgeon this week. My urethra has started hurting, too, unrelated to urination....
I've had a FMT - but it was for antibiotics-resistant c. diff. It saved my life, but I don't think it really made a tremendous difference on my Crohn's. About six months later we had to more than...
Hey everyone! I'm back. And pregnant again lol. 27 weeks along with kiddo #4. This last week I started having some vaginal pain that I figured was related to my recto-vaginal fistula (which I got...
Hi Wendy, I get your fear! I really do. When I was first diagnosed a little over a decade ago at age 24 (I'm now 36), I had never even heard of it and knew absolutely no one that had it. This forum...
Has she had a blood test to rule out pancreas? I had my gall bladder removed when Imuran gave me pancreatitis, but it took like 6 months to figure out that was the cause. I don't drink alcohol and...
That's not super low for platelets. Platelets are a bit like WBC in that technically the range is up to 11, but if they see 12, they don't worry tons. I'd just keep an eye and ask for regular...
Has your diet changed recently? Does the gas feel like it's more in the stomach or the intestines?...
It looks like some wort of weight loss system. I would definitely NOT do it....
Since it's a draining seton and not a cutting one, I wouldn't worry too much about the knots going in unless it's painful. As for the second loop, that is a little more concerning that it's just...
Just wanted to check in - how is she doing?...
When my iron levels get low, my GI tells me to up my Vitamin C....
Valium should be fine - I take cyclobenzaprine (a muscle relaxer) as well as an anti-anxiety medication, both to help with my fibro. But year, most definitely not Advil....
I'm so glad to hear it all went well NCOT!!...
It could also be gastroparesis....
Wow, that is definitely pricey! I was on Pentasa, Asacol, and the generic mesalamine for about two years. Each time I filled, it was a different one it seemed like - but none of them ended up...
Yes, there is definitely a thin line between the two. I was originally diagnosed with UC until I got an abscess-turned-fistula. It seems like Entyvio isn't working at all for you. Can you give...
Oh man NCOT. I'm so so sorry that it's been so rough. I really hope it goes well for you. Please update afterwards! You'll be in my thoughts....
You're welcome! Feel free to let me know if you have any further questions :)...
I have a RV fistula that goes through the sphincter and haven't heard of that. Sorry I'm not helpful. I did a mesh surgery which was rejected by my body....
Hi! I'm currently pregnant with my 4th, and I've been on Remicade (so super similar to Humira) for all four of my kids throughout the pregnancy. I try to time my infusions so that I am due for a dose...
I haven't heard the term "silent Crohn's" but it is DEFINITELY more common than people would think to have zero symptoms but then be surprised on a scope with a ton of inflammation. I would try to...
What does your CR surgeon say?...
What does your CR surgeon say? Once my original abscess cleared, the seton barely had drainage. There was some incontinence if I had a lot of diarrhea. As for the smell, are you covering it with pads...
I've had the opposite - my FCP was extremely elevated, but everything looked okay on the scope....
Strictures are usually caused by scar tissue building up in the intestines. Even when inflammation is down and you are in remission, the scar tissue is still present. The more times you have...
All my Crohn's symptoms started coming back, and then it gave me pancreatitis (a rare side effect)...
It's absolutely not uncommon for Crohn's to be misdiagnosed as UC. I was on imuran and mesalamnie for about 18 months and had most of what you're describing, including clean scopes. Then one day I...
That is SO great that your GI has a plan to move forward. I think drug-free to see if symptoms improve is a good idea, although I always worry about a flare. The good thing about flares is that...
I'm a white female and was diagnosed in my mid 20s (I'm 35 now). I'm not of Jewish descent. Nope, you did nothing to cause it. It's just something that can happen sometimes....
As far as steroids go, budesonide will have the least amount of systemic side effects. This is just short-term until the IBD specialist can get you set up with a maintenance medication like Remicade...
In some ways, a uro-vaginal fistula is a bit easier to find. We thought I might have one and I was sent to the urologist. He filled up my bladder with fluid to see if any leaked out anywhere. Much...
Do you have hemmorrhoids? I would give witch hazel a try....