Hi Rider, I realize its been a few years since you posted this, but I wondered what you did in the end? Did you go back to Remicade? Stay on Humira? How have you been feeling? Julia...
I am in Alberta, my infusions were covered by Alberta Healthcare and I wasn't asked anything about supplements. It was my hemotologist and GI that worked together on this. Julia...
Hi, It takes two weeks for an iron infusion to make red blood cells, so I also had a blood tranfusion to tide me over. An iron infusion takes about 6 hours, but she will feel better once it does its...
Have you been checked for Fatty Liver disease? This is very common in Crohns patients also. Julia...
Kay, I'm so sorry to hear that you have been dealing with all of this. As you know, I had Remicade induced Lupus 12 years ago. The joint pain was massive. I saw a rheumy and she did specialized...
Hi Kay, How are you doing? I have non alchol fatty liver disease that has scarred my liver. I have had it for years but it has worsened with my Humira. I was told it is very common with Crohns...
Hi, I just wondered how you are doing now? I hope you have some relief by now. What does your GI say? Julia...
Lynnwood, Such sad news! I never knew her, but I recall Barbara Lee supporting her through rough times. Do you ever hear anything from Nikita or Bill? I hope you are feeling well these days. All the...
Hi, I'm sorry that you got Crohn's at such a young age. I too have perianal crohns and fistulas. In my experience the Remicade is the only thing that has helped my bottom end. I was on it for 2.5...
I am thinking they are hoping that the Remicade will heal the fistulas. However, If this abscess and fistula are on the bowel where your Crohns is I think I would have gone for a bowel resection...
Thanks Randy, I appreciate you letting me know. All the best, Julia...
Hi Everyone, I was wondering if anyone has seen or heard from Sniper? He has crohns and diabetes and was very knowledgeable on managing the two diseases. I would appreciate any responses with ideas...
Hi, I was told by my GI to stay away from any artificial sweetners as they ferment in the large bowel. This would explain the flare up. I tried Stevia once, very bitter taste. Julia...
Hi Lanie, Thank you for the warm welcome. I saw my GI today and he looked up my bloodwork from last Friday and A1C was 10. Over the past year it has been 6 when tested every 3 months. He told me it...
Hi, I too have Crohn's (36 years) and have been testing my A1C for one year now. I completely understand where you are coming from, as I am in the same boat. My GI told me to stay away from...
Hi Kathie, Thank you for your reply. Do you find that the Dermelastic serum relieves some of the burning pain? If yes, where can one purchase this serum? All the best, Julia...
Hi, Not an easy thing to do. Have you talked to your doctor about a tapering schedule? You may have to get 1 mg tablets and reduce by one mg/month. This is a very slow process, but necessary. Take it...
Hi, I am from the crohn's and Lupus forum, but am borderline diabetic. Maybe you could have an iron infusion, worth asking Dr. about. Julia...
Hi Melissa, Thank you for responding. Yes, I have a soft spot for carbs, lol. Do you have any symptoms with your fatty liver? Julia...
hi Lynnwood, Thanks for responding. My liver enzymes have been going up on a monthly basis. Im not in the danger zone but my GI is watching it and I am having a specialized MRI of the liver to see...
Hi Everyone, Lynnwood, I was reading one of your posts from 2010 regarding your elevated liver enzymes possibly caused by fatty liver disease. I am experiencing this now also. How did you make out...
Lets hope you don't have an abscess, you are dealing with enough. I think it could be scar tissue also from healing. I would take lots of sitz baths to sooth both if it is an abscess, it will bring...
Hi Everyone, I find myself thinking about our good friend Barb on a daily basis. Of course Christmas was another first that she wasn't with us. Its hard to believe that a year has almost past and it...
Hi, I had surgery on a periannal fistula when I was 20. At 28 I delivered my son vaginally and tore open my bottom end. I was lucky it healed as lots of scar tissue. I had a c-section for my daughter...
Hi Everyone, After decades of steroid use, I have developed painful deep purple straie under my breasts and on my stomach. I have been to the dermatologist twice in the last year over this. I was...
Hi, Regardless of what it is, keep having hot sitz baths to keep it draining. I truly hope it isnt an abscess. If it was an abscess, you would have been in alot of pain. Julia...
Fernando, Did you find that the Stelara helped your periannal crohns? Do you also have fistulas? Julia...
Hi, Has your husband had any of his bowel removed? My Hematologist told me I could take all the supplements I want, but I'm missing the parts of bowel to absorb them. I too have iron infusions. Julia...
A day doesn't go by that I don't think about Barb and wish that I could just pick up the phone and have a chat and share a laugh. I sure miss her knowledge about health issues also. For someone I...
Kay, Thank you for letting us know about Babs. She was a nice lady, and its to bad that she endured so much in the past couple years. Julia...
David, Your thoughts came from your heart as only those of a true friend could. I hope you are doing okay, I know you are dealing with your own pain and struggles. You know the pain Barb endured, as...
Hi. Does your GI know about the problems you are having? I Had RIL approx 10 years ago. The pain was so severe, I could hardly move. I remember it started in the thumb joint on my left hand. The next...
Yes, it was Ellie. Barb and I spoke of her not long ago. She told me she hadn't heard from her for a long time. Dianne - Which Dr. went to the service? Dr. Byars? All the best, Julia...
Thank you Lynnwood for posting the collage. She looks so happy and carefree! Which doctor attended the service? Take care, Julia...
I'm glad you are able to attend today Lynnwood. I miss those days when we used to meet in the chat room. That was Barb again letting me know what time to sign in. Take care, Julia...
Hi Betty, I'm sure that you can continue the remicade after the balloon dilation, I did. I would still be on it if it wasnt for the lupus. All the best, Julia...
Your GI is right about Remicade being the best. It healed crohns ulcers I had for years that nothing else would touch. I was fine on it until they discontinued the MTX. I had also heard about a new...
Remicade and Humira do cause narrowing higher up in the bowel at the TI. Due to this I have had 4 balloon dilations done over 13 years. Saved me from having further bowel resections. (I've had 3...
I don't have UC but I do have Crohns. When I was on Remicade I also was on MTX 25 mg/week. This worked well for a couple of years until I discontinued the MTX. It was then that the flood gates opened...
Your mom will always hold a special place in my heart. I miss her so much already. I just received a Forever Friends card from her in the mail and she wrote "I'm thinking of you, I can't be there in...
Hi, Sorry you are suffering with is pain. I had Remicade induced Lupus years ago. It affected my joints and was extremely painful. I remember it started in my thumb joint, and the next day was in my...
Hi Everyone, I wanted to let you know that Barb is in the hospital due to the doctors believing she has Necrotizing fasciitis. She noticed her hand was hurting and slightly swollen in the thumb last...
Hi, I prefer to use a prefilled syringe for that reason. Much easier and I like having more control. As for numbing cream i.e. emla cream, not sure, best to ask pharmacist. Julia...
Hi, Do you take Imodium for the D? I have taken 2 imodium/day for years. I also take 3 busopan/day to stop bowel spasms. I find this helps me. Julia...
Have the bowel resection. You have been through so much already. Remicade did help my fistulas, but they came back when I had to go off of it. Have the surgery and start with a clean slate. Your...
Hi, My heart goes out to your son. I truly hope that the prednisone helps him. Have you talked to his doctor about being on a veg diet? I'm asking because salads are very hard on me. (ie string in...
Hi, I have been told the same thing. I do think it is very common in people with crohns. Julia...
Hi, In my experience, one doesn't know until it hits you with alternating joint pain, and I mean you cant sit down, get up, pour water into coffee maker, etc.. The rheumy will do an ANA, double...
Hi, Wow, 45 years is a long time. I'm at 34 years. I have periannal crohn's also. I have had an ulcer the size of a 50 cent piece in the rectal area. I also suffer from periannal abscesses and...
Hi Everyone, I hope you are all enjoying a pain free weekend. I wanted to thank all of you on Barbs behalf for your prayers and good wishes. She truly does count on your support. She is being moved...