Randy, Glad to hear you're home. Hope you can get some rest, and of course some answers, particularly with the fevers. Keep us posted....
Nattyjk, FIrst of all, (and likely due to your experience), you're doing everything right. I would echo all of the sentiments that @beave has pointed out. It certainly is pointing to Crohn's, but...
Seems like pretty good news overall except for the diarrhea and constipation issues. It seems like the Stelara is doing it's job. You can still be considered in remission while still presenting with...
Very sorry to hear. You seem really young to be having this issue whether brought on congenitally or related to Remicade, which seems doubtful. Never heard of anyone having heart issues of any kind...
Hey Betty-Sue, That is awesome news!!! Thanks for the update, and hope he continues to do well....
Agreed Paul, Your numbers look pretty good. Forgot to mention Triglyceride's. They're just as important, and usually increase with too much sugar in your diets as opposed to saturated fat. LDL could...
Good news on your PSA, and getting your hemoglobin up, but unfortunately, you're right in that it came at a cost of higher cholesterol. Your total cholesterol would be considered borderline. Some...
I'm also in Ontario, not far from the GTA. My Daughter has always been at Macmaster in Hamilton. I will say they're extremely good, but have a huge patient list. As for Toronto itself, I've heard...
I'm wondering if your anxiety is the root cause of your digestive issues, particularly with having gas and so on. Whether someone has IBS or IBD, or is completely normal, stress and anxiety can wreak...
I'm sorry that you're having issues. How long have you been on Stelara, and how often are you injecting? You might have to go to every month, but you also might need more time to reach peak...
Just wanted to mention, while @beave has left you a couple of excellent posts which I'm sure will help you, clinically, Entyvio doesn't seem to be getting anywhere near the success rates of Remicade....
Welcome the HW. Right off I have to admit, I've never heard of monogenic IBD, or monogenic disorders. Had to resort to a quick Google reference. It seems that antibiotics are a treatment option, be...
73monte, (Tom), Been on this forum since 2006. It's been such a great place to get/give support. Hope all are doing well, and a special thanks tot he admin for keeping things going so well....
I'm certainly no expert here, but from what I understand, your ferritin will increase with an iron overload. After 3 iron infusions, this would certainly be a the likely cause. Iron infusions work...
Wishing you good luck as well Min', Hopefully this one is a great fit....
Good Luck Randy!! Hope all goes well going forward....
If you didn't have any allergic reactions to Humira, and it was well tolerated, then I would definitely give Remicade a try. Remicade is still the best biologic there is for treating IBD. Even though...
Minnie, Any steroid, whether cortico or anabolic can cause severe mood changes, depressive issues etc. Really doubt it's related to Rivoq. Your mood issues should improve in the coming weeks, but it...
Minnie, I was just going to mention what @straydog had said, that Entyvio is reputed to take time to get to a therapeutic level. I've heard up to 6 months. Really hoping this option is a good one for...
I do remember your previous post. It's so disappointing that you seem to have no end in sight right now. Often times, no matter how bad things seem, or how sick you feel, once you get a firm...
My Daughter just went through the exact same change. She's also been moved to every 4 weeks on Stelara. Has had a couple of doses now, and she says she notices a definite improvement. She also was a...
I'm sorry you're going through such a tough time. In a way, ruling out anything severe, esp. Crohn's related is a blessing. Not much consolation though when you're in terrible pain, and looking for...
Sounds like the worst is over, and in hindsight, as you stated, it looks like it was a good decision to opt for surgery. Unfortunate that they had to do open surgery, but as long as the results are...
Agree with @beave, this sounds like a very logical route right now. Good luck, and keep us posted on your surgery and recovery....
Sorry to hear Randy, Keep us posted. DId you get a cause of the fever? Is it viral perhaps, covid? Hope you're feeling better soon....
You're faced with a very difficult decision to say the least. There certainly are some IBDer's that have no regrets opting for the surgery route. I've posted here previously about a friend that had...
Just wanted to wish you luck going forward. Keep us posted indeed. Not sure what other biologics you've tried(?). Of the newest ones, Rinvoq seems to be getting good reviews. Ironically, Entyvio...
My Daughter was on Remicade for 15+ years. Went to Stelara, but didn't have anti-bodies to Remicade, she's one of the few that could actually go back to Remicade is necessary....
There was a previous view that combination therapy, (anti-TNF + Aza), was successful with preventing anti-bodies. Not sure if this is still an accepted view or not. Agree in the harm of drugs like...
Minnie, You're going though so much. Hard to believe your Crohn's is under control, and Rinvoq is working, but you're still having such unbearable issues. Wish I had some advice/answers for you. Only...
Just wanted to add. My Daughters GI is going to stay the course with Stelara, but going to every 4 weeks as opposed to 8 weeks. She is having some symptoms, mainly a pretty severe constipation issue....
My first guess would be dietary. Would go with a trial and error approach, but first might suspect lactose intolerance. Very common, and usually occurs in early adulthood. Gluten would be something...
Hey Clo, Thanks for your post. My Daughter is really good at tracking her symptoms, and usually doesn't ignore anything that doesn't seem right. We'll hopefully keep things quiet until she gets her...
Susie, I was just floored reading about your Daughter. It seems from what I've read that there's plenty of hope regarding successful treatment. Not sure how long you've known, or where things are at,...
Hey Clo, First off, thanks so much for your ongoing support. As I stated to @scifigal, it would seem that Humira would be a good choice. There is an update though. She now has a new GI nurse. It's...
@scifigal, This was my thinking as well. Rinvoq is getting good reviews, but minimal. With as much success as she had with Remicade, it would seem that Humira would be the more logical choice....
My Daughter is considering Rinvoq currently. Glad to hear it's working well for you. As for your cholesterol, the only thing you can do is modify your diet and exercise approach. Try to decrease your...
Hey Paul, Thanks for your reply. She was on Remicade for about 14 years. Didn't discontinue due to antibodies. She always felt extremely good Crohn's wise on Remicade, but unwell physically in many...
For those that have followed, I'll try to spare you too much history. Briefly, my Daughter recently had some updated diagnostics. Two MRI's and a lower scope. She's been on Stelara for about a year...
Thank goodness someone brought things back to life. Longest I've seen the forum go without any activity. Hope everyone is well....
Joanna, Yours is certainly one of the more moving post that I've read in a while. There are many people in the world that opt for not having children. I does seem worse when the decision is made for...
Thanks Paul, That's really good info. and could be very useful. I'll inform my Daughter about this, and let her check it out with her GI....
LOL!!! Thanks so much Susie, Hope I wasn't too hard on you, but of course I'm sure you know I was joking about it all. It seemed like as soon as you asked, everything went sideways. She seems to be...
Clo, Thank-you so much for the kind words. If you read my previous post to Susie, you'll see we've had a rough week. I didn't know what happened to your Son. A parents worst nightmare. The...
Susie, I'm sure this is going to sound very confusing, but I've been cursing your name. Since your post inquiring about my Daughter, things have gone a bit downhill, and I choose to blame you for...
Hi Susie, Thanks so much for asking. I've been active on the forum, but you're right, I haven't given much of an update on my Daughter. Not too much to tell actually. Her GI is having her stay the...
Minnie, I agree with @straydog. Food is definitely individual. Avocados are high in fiber, so you might introduce them starting with small amounts and work up from there. That bodes well for most...
The first time she tried a veg based it was by Lorna Vanderhaeghe. The second time around was from the Doctor, and might very well have been ferrous bysglycinate that you mention....
As any IBDer know all too well, iron supplement, (oral), will almost certainly cause stomach upset and constipation. My Daughter went through several years of trial and error, finally settling on a...
Has your Dr. suggested statins at this point? Most of us don't want to just add medications, but statins are pretty well tolerated....