I'm sorry that you are going thru this. IBD is a hideous disease that's chips away at us piece by piece and sometimes it feels like it's stolen who and what we are.... and sometimes who we were to...
Magic beans, I still do the SCD diet pretty strictly when I am having issues. It seems to help me. It doesn't help everyone though. I followed the diet as it was written until I was better then I...
I'm on Remicade... we were going to use Entyvio but decided to use that for my next med. They should test you for TB before starting you on the medication. On all biologics you need to get all "live...
Cordelia, Is Crohn's a new diagnosis for you? I ask because for me.. and several people in my support groups... Crohn's will start in one place and then we developed it in other places also. I've had...
Therearemiracles, I just saw this. How are you? I've had surgery for obstructions 3 or 4 times. They were emergency surgeries. They told me they couldn't/wouldn't be adjoining the sites and gave me...
Lol...Dang Randy.... you are a stone making machine! It's a wonder you didn't rattle when you walked with that many stones. Can you feel them developing,? Can you take Potassium Citrate or anything...
I'm sorry it didn't work.... I hope you didn't develop antibody to the humira. I would watch carefully for any reactions... Also, I still think you need a scope to check the health of your...
There's a recent post about her...It was on the UC side... I too was checking on her. She hasn't posted since her surgery about a year ago. Some of the people on the UC side said she's on Reddit. I...
Nope my sister has them too. But this last round I took Moonstone Stone Stopper... 4 pills... 2 pills twice daily... and they dissolved my 3.2 or 3.3 mm stone. They dissolved the other 3.2 mm stone...
Yep yep yep... It was different. I was sorta lost trying to get it to work... and it just didn't. Maybe next time around...
Old Mike, Interesting... On the cQ10... Struggling to get CRP below 15 for years.... Was taking 100 mg cQ10 a day, PCP increased it to 400.mg per day (August 7th). My PCP added in Potassium Citrate...
Ok.... PCP is prescribing Potassium Citrate tablets. He wants me to take 2 a day plus 2 of the Moonstones.... He hopes we can switch over to the prescription completely in the future. (Insurance...
Lab, Just a thought. When I am going thru these episodes I increase my fiber intake... (I use oatmeal, flaxseed l...), increase my hydration, and take 30 mL 9f Milk of Magnesia nightly. It gets...
I completely understand not wanting to go on biologics. (I am on Remicade) I hope you get all your symptoms under control. Hopefully your brother and friends issues resolved after stopping the...
Serenity Now, I thought I saw a post about this same subject when I was in "read only" mode, but when I switched over to being able to sign in .. it had disappeared. I thought there was another one...
Lab, I have that happen too. We haven't found out why. I hope you feel better soon. Great news about no active disease though! Congratulations 👏👏🎉🎉 Clo...
I took think you need to get a scope. See where you are at and if you need to make adjustments. Sometimes you have to zag when you were planning on a zig.. Clo...
Oh gosh. Tried periodically since Sunday. 1st time I've been able to log in....
Lab, Thanks for sharing! I think it's just different for everyone.... And my answer is not really a fair answer because I already had grown children prior to the development the disease later in...
Lab, So glad you are getting it checked out. I've had 3 surgeries now because of the scar tissue in my colon and obstructions. 1st was the obstructions and a colostomy and the other two were due to...
That's what my doctors "hinted" at when they told me I'd have to do the infusion if we ever have to use that medication. My mother's family has struggled with cancers... Lymphoma, colon, kidney,...
Lab, Did the forum just repost your response or are you needing clarification?. Clo...
jkingfrt, I don't take the same med.. (I'm on Remicade) but my understanding is that all of us can have any of our meds stop working at any time. You may be having a flare. Have you noticed any...
Have you tried to keep a food journal? For some people with IBD it helps. They can see that if they ate this the next day they felt worse.. or they had terrible gas 4 hours later. It's sorta a hassle...
Lab, I'm glad that you have stayed on top of your labs and scopes. So very important. The flares did just sorta run their course. I too would eat pureed and the SCD diet to help-but after a week or...
Yes iPoop... Thanks for letting us know. I miss her but hope that she doesn't have anything to post in any IBD forum ever again..... Clo...
Labradorite, I've had what I consider "mini" flares where I've had difficulties. They've lasted up to 10 or 11 weeks. I had a scope during one of those times and my intestines looked pretty good...so...
Is the Prometheus test to check for antibodies or IBD? I did not take a Prometheus test to diagnose my disease so I can not help you with that. I take Remicade and used to take the Prometheus test to...
Labradorite, I try diet modification, additional rest and relaxation first and if after the end of the month I am staying the same or worsening I reach out to my GI via the portal and I make an...
Lab, Hi!!!! Long time no see! Gosh it's good to see you... I know this started about NCOT... But How are you? (Should Iake a new post for this? ) I sent NCOT an email a long time ago... No reply. So...
Minnie, Different med... unsure if this will help- I was having issues with dizziness also. My supplements were changed to a larger dose of cQ10. I now take 3 200 mg of cQ10 spaced out every 8 hours,...
Keep up on your meds for your mental illness. That's so very important. I think that all of us are alittle concerned after surgery and what our "new normal" will be. The secret is to try to be as...
I can't wait for Michelejc's X-rays! I hope hers are clear too! If so that gives all of us something that might work for some of us. 🤞🤞🤞 Clo...
Update: Had X-rays late last week after CT scan approximately a month before. CT showed one stone exiting kidney to bladder and one still in the kidney. I knew 1 stone passed...there was a remaining...
It's a small world..... Seems at least 3 of us are from Texas... Clo...
Thanks for responding all! It's interesting that others are saying they've experienced issues after a scope when they have been having a challenging time prior and that others have never had issues....
Randy, You are always on my prayer list. (Hope that doesn't offend you...) Your strength and determination amaze me. Clo...
Went thru my medical records this afternoon. From 1st diagnosis in 2014 to 2017 I flared or had something happen after every scope... nausea/vomiting that Zofran couldn't touch, diarrhea so bad my...
So what happens next? How will this impact you in the future?. Clo...
Curious about this. I've read studies that it can happen and that it cant. I've heard that some doctors say this doesn't happen and other say that it does. I wonder if our GIs are telling us the same...
Maybe we should do an informal survey on if it happens to others?. That would be interesting.......
Poopydoop and straydog, My GI has indicated that there is a subset of patients that do have flares or "mini flares" after colonoscopy. I can tell you that I have had flares after scopes that the ER,...
Oh Randy, I wish they could find a way to completely heal us. It seems that there are some of us that have such severe cases and complications that someone somewhere should be working towards helping...
Wayne, The stool samples testing may not have been done for calprotectin, you'll probably have to call and ask.. For me.... Those numbers don't work as well as with others. I've been in a horrible...
Magic beans, My labs and numbers sometimes do not correlate with the severity of my disease. The only way to ensure that we know how I am doing is thru colonoscopy. My concern for you is... UC and...
ToughKicker, I have friends in my support groups with jpouches. They started out with very short visits to places. They packed an emergency bag with wipes, clean clothes and some of them had an adult...
I'm sorry you are in such a bad flare and in the hospital. In regards to IV steroids.... They helped me pretty quickly... Things started to ease a bit around day 5 or 6. Remember--everyone is...
It differs for people. I think some people think if you are really in remission you need a colonoscopy confirmation. (I'm sure there might be others that disagree.) I say that because I've been able...
BaconGirl, Just spoke to PCPs new PA of the PA...last week.. (lol) and she had me eat corn... To see what my approximate transit time was... It was over 36 hours before it came thru... Now she wants...
Glad you are still doing well! FWIW... The SCD book has a recipe for yogurt in it. I have seldom missed a day since discovering it. I can tell when I do.... So I totally get what you are saying about...