Yes, I do realize that since it is Crohn's that the inflammation can come back elsewhere and we will be monitoring it to see if I need to be back on meds. I have faith that we will catch it much...
I thought I would give people an update as to inform those going into surgery what may happen if their biopsies turn up as Crohn's. In January, I had what was supposed to be Step 1 of 3 for a...
I have Aetna and I'm not sure about how approval for Entyvio works when you are already on it. Aetna made me try and fail Remicade and Humira before letting me try Entyvio, but it is probably...
I just fake ballroom danced with my husband, pressing stoma against him really well, and it was fine! He was a little confused, but I told him it was for science. I also googled it and seems like...
I just wanted to jump in and say that I can dance and wear tight clothes with my ostomy too! The appliance is a lot easier to hide than I thought it would be. I wear either tights or an ostomy wrap,...
Even if I knew it was Crohn's before surgery, I would have still gone through with it. It all depends on your quality of life though. It was just so bad. I had gotten so used to being sick that I...
notsosicklygirl -- I did actually buy a wrap because I could not find a comfortable way to tuck the end into my pants. It is really great, gives lots of support, and hides the bag well! That is a...
That makes sense. I didn't think about the cancer possibility. My grandmother is currently battling colon cancer, so I definitely want to be very careful with that. I did not get a second opinion on...
I have had an endoscopy and a MRE done which have both found no inflammation anywhere above the colon. I'm wondering how accurate these biopsies are. Although maybe it always was Crohn's colitis. My...
Keith -- Did any biologics work for you before your j pouch? My big concern is that I have been refractory to every medication that I have ever tried, but my colon was in really bad shape according...
I had my ileostomy surgery on the 11th and we finally got the biopsy results back. I am just shocked. I do not now nor have ever had any inflammation anywhere other than my colon or had any other...
Thanks for the advice! I've been liking my hollister one so far. I do like the two pieces and the snap on part. I haven't had any leaks or irritation. The only thing is that the bag does seem a...
I had tried so many meds and none of them gave me any relief. I had been flaring for three years straight and feel like I lost so much of my life during that time. I've had three GIs whose opinions...
I have two full weeks more off work so I'm looking forward to a lot of Netflix and occasional shuffling around the house. Anyone have suggestions on which ostomy samples that I should order? They...
Looks like I will be going home today! My pain is so much better now. I can get in and out of bed and walk around with almost no pain. All I have left is for my ostomy nurse to put on my new bag, set...
This last day has been a little harder. I think I cut back on my pain meds too quickly, but I got back on more so I'm starting to feel a little better again. I started back on solid foods which are...
Yeah, I'm in the colorectal wing so she's in the middle of her jpouch surgeries too. She can only eat ice chips because juice and broth were making her nauseous. She even complained to her dad that...
I have taken 3 walks so far today. It's only painful getting in and out of bed but I've been refining my technique so hopefully that gets better and better. My incision is horizontal next to my belly...
I had my surgery yesterday afternoon and everything went well. One of the doctors remarked that my ostomy was the best she's seen! I'm not in much pain at all yet. I have only had to push my pain...
Thanks for the advice, 3timechamp! I will be at Mt. Sinai....
Yes! After failing so many meds, I'm excited to finally be doing something that will 100% change things. Btw, I hope you are on the mend from your bout with Xeljanz. It turned out that my worsening...
After 3 months on Xeljanz, my GI did a scope on me yesterday and the results were bad. The second I saw those pictures I knew there was no saving that anymore, just so much inflammation and so many...
Oh wow, I'm just about finishing up my third month of Xeljanz and for the past week I started feeling as if I had a stomach bug on top of my UC too. I've been feeling nauseous, achy, fevery, crampy,...
Agreed, I have heard many stories of people being very satisfied with their ostomies. I know I would take one over dealing with what I am now for the rest of my life....
After 3 months on Remicade, I switched because I had no response and my levels of it were high. After 2 months on Humira, I switched because I started to develop psoriasis and had no response. We may...
Oh god, if only those people could experience what we do for even a day. This disease definitely gives you a new perspective and makes you more considerate of others. Some people really just live in...
I tried Remicade, Humira, and Entyvio. I'm currently at the 10 weeks mark with Xeljanz. I think I may have a little less bleeding and urgency but it's so slight it's probably just placebo effect. I...
Has your insurance said what they want you to do (other than just suffer without treatment because that would be so much more affordable for them)? My insurance made me try Humira before I got to...
Is your insurance denying the Entyvio completely or just that home infusion service? Can you call your insurance to see if they have an in-network home infusion provider? There are many different...
Luckily, I live close to NYC, so I have a lot of great options. My current GI is affiliated with Mt. Sinai, which is part of why I switched to him. They seem to have a really great IBD surgical...
I met with my GI yesterday. We decided on trying one more month of Xeljanz (12 weeks total), then having a scope to check things out. If there's no improvement, it's off to the surgeon I go. He...
Thanks for everyone's stories! Follow up question for you guys: Have you had trouble with family and friends trying to convince you not to have surgery? I've found that as I've started opening up...
Thank you so much for all of your perspectives! It really helps having so many people who understand here. I wish all of you a lifetime of happy pouches!...
I am at the same weight as I was before flaring. My GI even commented that I was in good weight and health for how severe my colon looked (other than the whole running to the bathroom 10-15 times a...
I'm 6 weeks into Xeljanz and am feeling exactly as I was before. I have been flaring constantly for over 3 years. Prednisone, Remicade, 6MP, Humira, Entyvio, and now it seems Xeljanz have not given...
Good luck! Wishing you the best!...
Rashes, eczema, and psoriasis are all potential side effects from biologics. I would bring it up to your doctor who will probably want you to see a dermatologist. I would try to get it checked out...
I just used a mild moisturizer (Cetaphil) in the morning, at night, and anytime I took a shower. I also switched to a moisturizing body wash. I was referred to a dermatologist, but I put off going...
I started getting psoriasis after about two months on Humira. I immediately stopped taking it after I noticed the rashes starting. I had rashes on my arms, legs, and chest. My mom has psoriasis so I...
Agreed. I haven't heard of anyone getting a once a day dose for UC. I'm on 10mg twice a day now. I believe the 10 mg extended release version (Xeljanz XR) is only supposed to be for arthritis, not UC....
I'm starting to think that my symptoms improving slightly might have just been a fluke. I've recently had some stress occur and my symptoms are right back to where they used to be. And now I'm having...
I'm not currently on any other medications or steroids and I have not been on prednisone in over a year, but it does feel very similar to how I felt on while on prednisone....
I've been on Xeljanz for 2.5 weeks so far. For the past week, I haven't been tired at all. Not at bedtime, not when I wake up in the middle of the night, and not when I wake up very early in the...
I also had giardia, which after several rounds of antibiotics was found to be cured, but I still had the same symptoms. I've had multiple clean tests for giardia done. After a colonoscopy and...
Thanks for everyone's thoughts! I also wanted to clarify that I'm definitely not thinking of surgery soon, but just if I fail entyvio and stelara and maybe xeijanz. I'm just the type of person to...
Yes, I did mention that to my GI, but he said that those medications would only affect part of my colon and he thinks they are too weak for me....
For some background, I was diagnosed with UC last July (after having issues for almost 2 years before that). I was immediately put on 40mg of prednisone tapering over one month, but never felt any...
notsosicklygirl - My current GI was a little shocked with how my first GI treated me. I still kind of wonder if I never emphasized how bad I was feeling. I've always found that doctors never really...
I have about 15 bms a day that are pretty much always liquid with a ton of urgency. There's also blood in about half of them. I get abdominal pains pretty frequently sometimes sharp pains after...
I have been in a flare for over two years without a day of relief. At first, I was diagnosed with giardia, but after that had been cured, all of my symptoms remained. I had dropped 25 lbs and was at...