Thanks Clo', He last scopes were really good, but she was still on Remicade at the time. She has a GI appt. upcoming, and they will be discussing whether to stay with Stelara. Been almost a year, and...
Thanks Susie!!...
Hey Clo', So good to hear from you. Thanks for taking the time to reply. Very detailed, I'll certainly run these points by my Daughter. Hopefully something clicks. Very easily could be stress,...
Thanks Susie, I actually thought increased fiber might be counter-productive(?). She does eat pretty healthy, but her share of raw/cooked veggies. I'll mention the Metamucil to her though....
Many veterans of this board might remember some of my (many) posts regarding my Daughters now almost 17 years with Crohn's. Just want to give a concise recap first, then and update and question. She...
It's a shame that you're going to have an interruption in your care, but I think this might be a blessing. It would be much worse to keep seeing a Doctor that doesn't know how to treat you, and just...
Would just second trying a stool softener. Would recommend Senekot-S. Wondering how long you've been on Entyvio. This med can take some time to reach a therapeautic level. Several months in fact....
Probably okay to do for a few days, maybe week at the most, but I think you need to get that resection done. Maybe your GI could at least get a scope in there to stretch things open. Keep us posted....
Any update? Did they opt for an emergency procedure since attending the E.R.? Hope you're getting things addressed....
No similar issues that I can speak from. Just wishing you well going through this ordeal. I can say that Stelara works differently than other biologics. Do you have a treatment option for the lesions...
Sorry to hear you have to wait so long. Hopefully, you can get in sooner if there's cancellations of other surgeries. In the meantime, you'll likely have to really emphasize the avoidance foods. You...
I would agree with @beave, your GI seems to be working hard for you. If she stays with Remicade, you might want further scopes done to get a look to see if things are really impoved....
I might be confused on the dosage she's getting, so to clarify, the typical dosing when starting Remicade is 5mg per kb of bodyweight and ususally every 8 weeks. Is this what she was getting?...
Can only give a general assessment. For most that I've heard from that had various Covid strains. Haven't heard of any serious Crohn's related after effects. Most seem to weather it Crohn's wise to...
Lottie, So sorry that you're having such bad days. As some of us have mentioned, you really need family support and a family/friend advocate. Hopefully, someone can attend appointments with you, and...
Glad to hear that you have many people in you life. Really hope they get informed, and in turn get more supportive. You really need that, esp. at your age. I understand the choice better now. Entyvio...
Hi Lottie, First off, welcome to HW. You have certainly found a great forum to garner support from, and get answers to your questions. There are many experienced members and moderators here that can...
Thanks Susie, She did end up seeing the Doctor, and he prescribed an anti-biotic just in case it doesn't resolve. Have to keep an eye for a few days....
My Daughter has been on Stelara for several months now. Still a bit of a learning curve with the self administering part. She did her injection the other day, and prefers to use her leg. She's pretty...
Any chance this could be carpal tunnel? Really worth getting checked out for this. If it proves to be, the surgery is very straight forward, with good recovery time....
Welcome to the forum Fitzie, You've come to a great place for support and answers. I would recommend the Colitis forum as well for your questions. I have no expertise in this area at all, so will...
Minnie, You've been going through such a tough time. Starting to wonder if you're having a stricture issue. Are you passing gas, and regular BM's? Have you had a scope very recently. They could use a...
I think this might be good news. Stelara, as I've mentioned to you previously, seems to be rivaling Remicade in effectiveness. Only issue might be the time it takes to reach it's therapeautic level....
Minnie, So sorry that you're still having to deal with this problem. If in fact it is time to try another biologic, there are of course some good alternatives. Might need a refresher on your past...
Can't comment on the TMJ, but the facial swelling that you're experiencing is very typical of Prednisone use. This is a temporary side effect, and will subside as you taper off the dosage prescribed....
No expert here, but I believe that heart rate effects are common symptoms of Prednisone use. Blood pressure as well may be adversely affected. In the short run, it may not be cause for concern, but...
Minnie, Probably not much help, but my Daughter had skin issue for years while on Remicade. Hers were mostly facial though. After years of uncertainty, she finally saw a top dermatologist that...
I'm not exactly sure what you're asking here, but guessing that you're interpreting the results of the biopsies as being inconclusive(?) I'm afraid it does certainly sound like Crohn's to me. Not...
Just wanted to add that your Son is very young, and in his lifetime, and esp. by the time he's an adult, there'll be many new medications to choose from. The advancements in treatment will continue...
You do see Crohn's/Colitis mistaken for UC on occasion. They should be doing a lower scope and biopsies to get an accurate diagnosis. While Crohn's is most common in the small intestine, it can...
I'll jump in here again. As @straydog mentioned, this can be an insidious disease. It can creep along doing considerable damage. If you opt for using the SCD diet, you might find in a few months that...
Hi Wendy, Welcome to HW. You'll find this forum is a tremendous resource, with a lot of support and experience. I'll try to offer you some advice and attempt to answer some of your questions. As with...
Thanks to both for your replies, Minnie, I can certainly understand how you would want to defer having it out with what you've had to deal with already. Hope in your case things stay calm. Susie,...
Quick update on my Daughter, Shes transitioned from Remicade to Stelara a few months back. Seemingly not having any issues, but has complained of some bodyaches, which I had posted about. More...
Welcome to HW. Unfortunately, I really don't have advice for you, but hopefully others will chime in. I would recommend checking the UC forum on HW though, and post your questions there as well....
I was use the "r" word gingerly. I suppose she's doing quite well, and would only like to know if her physical issues are med related. She's seeing a rhum. now, and also an Osteopath. She's also...
As some may remember, my Daughter has transitioned from about 10+ years of Remicade to Stelara. It's been a few months now I would say, and she doesn't appear to be having any digestive issues. She...
Minnie, It seems so abnormal to leave the abscess untreated? I'm not sure how your Health care system works, but in Canada, we would have the option to go to emergency and they would page an oncall...
Thanks Scifi, That puts my mind at ease. Appreciate the reply....
I'm not sure that I have any further ideas on how to deal with this, but I commend you for being proactive and taking precautions to protect your health. You're wise to wear an N-95, and don't be...
Thank-You beave & Clo, Not sure if they've looked at previous bloods for camparitives, and also they didn't say anything about how often they want to do repeat blood work. When on Remicade, blood...
My Daughter has been on Stelara for a few months now. Everything seems to going fine, but her most recent blood work came back showing borderline low blood platelets. I believe anything under 150,000...
I also know very little about it, but believe it's an immune booster, supplement category. It may have some nutritive value, or offer some benefits as a meal replacement, but be careful with anything...
First of all, welcome to HW. You've come to a great place for advice and support, and you will get plenty of help with your questions. Being newly diagnosed can be extremely confusing and daunting....
Somewhat of an update: My Daughter has been on Stelara now for about 2 months. Has had the loading dose, and one self administered dose. Seemed to be doing well, but about 2 weeks ago, started having...
Hi Miranda, I too am very sorry for what you're going through. You've been through so much already, and let's all just hope and pray that this will be the last leg of the journey to the "other side"...
She was on combination therapy for many years with Remicade. Her GI decided to take her off of Imuran, and just stay the course with Remicade about a year+ ago. So far no talk about resuming, but...
Hi xy, Thanks for asking. Pretty much the same as my last update. She seems to be doing fine, and gets the first do-it-yourself dose on the 20th of this month. Really hoping she gets the same...
Apologize for my mistake. I didn't realize that Pentasa was that expensive. Hope the generic works for you, but be firm with your GI if it doesn't and get back to the authentic Pentasa....
Pentasa is considered widely now as an antiquated medication for it's use as a maintenance med for Crohn's. That being said, if it has worked for you, and particularly for so long, I would certainly...