Hey Clo, Thanks so much for asking about her. Still waiting on a scope appt. She does have a phone appt. with her GI next Monday, so that should bring some news. In the meantime, they've ordered...
Thanks again Beave, That's a very concise and detailed reply. I'm getting a pretty good understanding now. I believe they did test her Remicade level, (trough), just before her last infusion. She'll...
Hi Clo, Yes, you are correct, my Daughter was on combination therapy for about 10 years, and just went off of Imuran a few months ago. I've had thoughts on whether that has been the difference maker...
@beave, No fecal occult blood ordered. She did get a call today from her GI nurse. Not familiar with "trough levels", but I think they are concluding that this is the issue. She told her the Remicade...
My Daughter still seems to be struggling with certain issues of late. She's had low hemoglobin and iron for some time now, and has had an iron infusion recently. She may have to have another one, as...
I'm sorry that Humira hasn't worked out for you. The good news is there are so many other choices out there. Stelara has been getting extremely good reviews, and seems to be the only anti-TNF that is...
Bucko, Sorry to hear of your recent struggles. Looks like a change in treatment plan will be in order. Have you been on several anti-TNF's at this point? Hope you get things under control after your...
Thanks again to you both, Wow is almost all I can say. I didn't know at all that ovarian cysts could be so serious or even deadly. O/T: Our GP called my Daughter yesterday, and said that she was...
Hey msQ, Also hoping the test are correct. As for the cyst, I'd have to ask her a little more about it. Being sort of a feminine issue, she might be uncomfortable talking to me about it, so I only...
Only other thing might be something viral or bacterial. Could even be a recurrent issue. Plenty of guess work I suppose, but would be nice for you to be able to figure out what the issue is....
Just wondering what your current treatment plan is? Other than this flare up, are you managing your symptoms otherwise? Maybe some diagnostics are in order. A current base line starting with a scope...
Thanks so much Clo, Much appreciate the support. Nothing showing on her bloodwork, and preliminary on the CT seems fine. She's still feeling lower right side discomfort. She has a appointment with...
For those that follow regularly, My Daughter has been an ever growing concern of late. I've posted recently regarding her needing an iron infusion, kidney issues, possible Crohn's issues, needing a...
Hi msO, Thanks so much for your concise reply. No Doctor has ever discussed differing types of anemia with my Daughter. We were just told in pediatric when diagnosed that it was a common side effect...
Thanks all, Eases my concerns a little. Probably going to take a while to get a CT scheduled, but I'll post the results when they come in....
I recently posted regarding my Daughters low iron issues, and has now received an iron infusion with no issues. So, on to the next problem I guess. She's been having some kidney pain, (mild), and...
Thanks Clo, No scope sheduled as of yet, but should be soon. She's always presented with low iron since her diagnosis. Has tried numerous types of oral iron over the years, but has never been able to...
Just another update: My Daughter did in fact receive her iron infusion today. It seemed to go well. She received 200mgs. The nurses there said that many get up to 300mgs though. Not sure if 200 is on...
Mirowpl, Good luck. Hope the surgery goes well. Fortunately, not to far in the distant future, along with the hope of the cancellation list panning out as well....
Update: Just got word today that my Daughters iron infusion is booked for next Thursday. I'll keep you posted. Thanks to all for the input....
Thanks Julia, Not sure why we have to jump through hoops in Ontario Hopefully once the GI pushes things along, we'll hear something soon....
So sorry to hear that you're facing yet another surgery. Hopefully, once you come to terms with the must need for this, you'll begin to see a bright side. An open surgery might make for a longer...
Really doubt there's any worries of this triggering a flare. Just has to run it's course. Stay hydrated, soups, tea, maybe some electrolyte drinks. If you're not on solids for a few days, try some...
So hard to say. There's a lot of fear and apprehension regarding biosimilars. I've of some that seem to do fine, and others are having experiences like yours. Hopefully, the issues you're...
Thanks Annie, I'll definitely check that out. While an iron infusion seems like a pat solution, they aren't without risk and It would certainly be preferable to find a supplement that works without...
Thanks again Maranda, (Yes, it's Tom), good memory. Appreciate the tips on the spray dosing. It looks like she's going to persue the infusion route, as she's been on an oral for a few weeks now, and...
Pretty wild story Chris, Glad that you have a definitive diagnosis, (finally). Not familiar with the affliction at all. Really hope the treatment plan has a high percentage success rate, and you can...
Hey Maranda, Been awhile, hope you're doing well. Thank for the advice regarding the iron spray and infusion. Even though she's had iron supplements in the past, they need a current result of the use...
Shawna, This might be a longshot, but worth inquiring about. There is an eye condition called Blepharitis. My won Daughter was diagnosed with it a few years ago, and is an autoimmune related issue...
Don't really know much about it, but from what I understand the common cause is low motility and a low fibre diet, which many Crohn's sufferers follow to stem the issues many have with diarrhea. I...
No expert here, but I would proceed with the testing for C-Diff. Nothing wrong with erring on the side of caution. For the minor inconvenience, it would be quite prudent to rule it out....
Thanks for posting xy, You're always good at posting about new therapies and such. I've only followed the MAP vaccine development loosely over the last few years. Had sort of forgotten about it. Are...
Thanks for the replies everyone. Just a minor update. She did get a call from her IBD nurse, who discussed her blood work with her. They aren't necessarily suspected microscopic bleeding, but want to...
I really don't have any input regarding a dietary approach for your symptoms. I would recommend some further diagnostics at this point though. Since you've had a resection, it would be good if you...
My Daughter has always struggled with low iron. She's presented as anemic since first being diagnosed about 15 years ago now. She's gone through several different types of iron supplements, but...
Really doubt that this is Crohn's related. I've had lower/upper back issues for many years. Sometimes it can be easy to diagnose, as with sciatic nerve issues, but often other times, particularly...
You'll be on antibiotics for sure. Need to stay a step ahead of strep. Also, you might want to take some probiotics, and be aware of yeast after the antibiotics. My Daughter always seems to get a...
@Clo, Very nice post. Thanks for the honorable mention. So nice to see you posting hear, along with the others mentioned....
@dorri, Glad you added in to this thread. Sounds like you're having a pretty tough time of it though. So sorry to hear that your struggling. Any chance you could get some other opinioins? Another GI...
Sounds like your best option. Hope the surgery works out for you, and I'm sure it will. Best of luck going forward....
Sorry to hear of you Son's friend's recent diagnosis. So young and trying to cope with the stress of College is enough. Surprised his family isn't considering other meds before opting for surgery. I...
Have you considered transitioning to Remicade. It seems to have a better track record with fistula healing....
First off, sorry for the rough time you've had. You've had quite a tough time, and been through a lot with this disease. It's going to be tough to offer any advice on your current dilemma. Your hope...
Have you had any recent diagnostics done? Might be time to get a look to see exactly what's going on. Reintroducing Imuran might be a good idea, but it may take months to reach a therapeautic level....
Sounds like a wise approach Paul, Wish I could get my Son to co-operate so easily. Although, he does know more than I do about everything (???????)...
I seem to remember a class action law suit regarding a drug treatment for acne called Accutane. I didn't google any info. before replying, so I'll leave it to you to do some research. Not sure of any...
I'm so sorry that nothing seems to be changing for you. You so need to get some help and fast. Could you possibly get to see another GI? Your current physical condition is very concerning. Your...
Thanks Coffiend, That's very helpful information, as even though it's been several months now without any apparent issues, I still of course worry. Your post offers some reassurance, thanks again....
You're going through such a difficult time on many levels. You need help in a hurry on multiple levels. You need to get your medical issues addressed first. I'm not sure how your medical system...