I am on Entyvio and have had 3 doses so far. I was on Remicade for 2 years but had to stop getting infusions after it caused drug induced Lupus. I just had some blood work done and my CRP is 19.8...
Check with others on here about drug induced lupus from Remicade. I developed severe joint pain after 2 years on Remicade. Blood tests have indicated Lupus. The question is if it is related to the...
I have type 2 diabetes, Crohn's disease and am also showing symptoms of Lupus. My pain was getting so bad that I was given a prescription of 40mg yesterday by my GI for prednisone. My pain is...
My last infusion was in April, so I was due for another in June but have cancelled it. My concern is that if I start Entyvio infusions, I am adding more chemicals to my body at a time when I am...
Thank you, Beave, Ides and straydog for your helpful comments. My rheumatologist appointment is still scheduled for October 25th, but my pcp has managed to get me on a high priority cancellation...
The main question I have that keeps me confused is why my GI doctor, after explaining how antibodies to Remicade can cause a Lupus like condition, sent bloodwork out for the Prometheus test and told...
I have been on Remicade for 2 years, and a few months ago I started getting severe joint pain and swelling in my wrists, knees, elbows etc.. The pain and swelling moves around. I called my GI doctor...
I too have a colostomy connection at my ascending and a little bit of my transverse colon. An ileostomy was planned but at my request because it's easier to deal with, my surgeon went with the...
xy123, yes, my rectal stump and anus were also diseased with Crohn's. In fact, my problems started in my rectum years earlier and Crohn's wasn't diagnosed until the disease spread upwards into my...
After my colon sugery, my surgeon insisted on removing the rectal stump and anus in a second operation. He said there was a cancer risk and wouldn't even consider annual biopsies. He said I didn't...
Yes, I have crohns disease and have had lots of pain, procedures and major surgeries. I was always anxious but am a major wreck now and sometimes feel like I have PTSD. You are not alone and these...
Yes, it does work and a nurse told me it is used in hospitals as a sleep aid. I was given one as a patient when I complained that I was nervous and unable to sleep and it worked for me....
Yes, I have had both for years. As I have gotten older and have health issues, it sometimes almost paralyzes me! I have taken Buspar and it has helped. I have also been on Xanax for years. I so envy...
I used blue Powerade and it wasn't bad at all and much better than Gatorade. I have had several colonoscopies in the past and this last one was the easiest as far as the taste of the prep. I had to...
I was on Humira for 9 months but developed a colon abscess and had to stop using it. I ended up having surgery, but when they went in to remove my rectal stump, it had adhered to my vaginal wall due...
I am so happy that Dr. Fichera did such a great job. I can't praise him enough. I was in bad shape when he did my hemicolectomy and he saved my life. I had no problems at all after the surgery. Then...
I can't believe you're not on prednisone to control all that bleeding. That is the only thing that controlled my bleeding and the other medications were given for maintenance. Unfortunately, my...
I use Karaya paste and powder. The powder doesn't seem any different from the others but the paste is so much easier to use. It's more like toothpaste in consistency and doesn't harden up in the tube...
MeByTheSea: I just edited my profile to show my email address if you wish to email me. I am anxious to hear what you think of our surgeon and the University of WA Medical Center. I am so happy that I...
Hello again. I am Christine's friend, who gave you Dr. Fichera's name. I looked for your email address so we could get in touch, but you don't have one listed and mine isn't listed either. I would...
I am the friend from WA whom Christine has told you about. I can't say enough about U of WA, Dr. Fichera and his team. I had 2 surgeries, both with complications and came through all of it with zero...
The butt wound hurts badly and it takes a good 2 weeks before you can sit and only feel soreness. Use the warm shower spray on it and let it air dry if possible. There will be some sticky discharge...
I change my wafer every 3 or 4 days, usually because I start to feel uncomfortable. As far as the filter issue, I agree with everyone else that they are useless. I am mostly writing to let you know...
I recently went on a cruise and ended up skipping all of the excursions because I was so worried that I would need a bathroom and there would be none available. My biggest fear was that different...
I am so sorry to hear that you are having such a hard time. I guess I got lucky and am thanking God for that. I also had to have my vagina repaired because the rectal stump had adhered to it and the...
I also had strictures and was told I needed to have surgery. I put it off and tried Humira, which didn't help at all. By waiting, I ended up having emergency surgery because abscesses developed in my...
My stoma bleeds almost every time I change my bag and it has been over a year since my surgery. I just wet a tissue with cold water and hold it there for a bit and it calms down. It seems that it is...
I am so surprised that you are already home and that is awesome! I was in the hospital for 3 and a half days. The hardest part was leaving because I couldn't sit in the wheelchair and kind of...
I reclined in bed or in a recliner for 2 weeks and also walked around a little after the first few days. Going to the toilet was a bit of a challenge at first because you can't just plop down on the...
I had no problems with healing after my surgery. I had sutures, several layers of them. No staples were used. I was told to keep it dry, just use the shower spayer, no soaking in the tub. I couldn't...
Take one day at a time. I had mine done last March and was doing aerobics 5 weeks later. I have no pain now at all and am so happy that I had it done. I had trouble trying to sit on the toilet but it...
I had both at the same time for my two surgeries and the epidural worked so well that I hardly ever used the pain pump. I know for sure that without the epidural for my second surgery, which was...
I noticed this old post that I had written and had to respond. I was never able to get the stricture problem remedied, even though there were several attempts to dilate my rectum. Any relief was...
The problem was found when the surgery was performed to remove the rectal stump and anus. Nothing ever showed up on tests, not even CAT scans. I had seen my GYN because of spotting problems due to my...
I had most of my rectum removed when I had my first operation, a hemicolectomy. I was told at that time, that I would have to have a second operation later on to remove the rectal stump and anus due...
Boy, I can empathize with you about the butt pain. I am finally able to sit, but not without some discomfort 3 weeks after having my rectal stump and anus removed. The pain was unbearable at first...
I just went through the same thing. I had fevers and night sweats for what was first thought to be a kidney infection. After a CAT scan, it was discovered that I had 2 colon abscesses and I was...
I am having the same problem after having had surgery this past October. I had the left side of my colon, sigmoid and most of my rectum removed due to Crohn's. I am scheduled to have the rectal stump...
I had half of my colon and all but about 1/4 inch of my rectum removed 3 months ago due to Crohn's complications that caused abcesses. I now have a permanent colostomy and have to go back to have the...
I named mine Flo, but sometimes refer to it as the Stinker....
I have a colostomy and never considered that I might be posting on the wrong board. Other than constant output and a thinner consistency with an ileo, I can't see much difference in some of the...
I have posted on and off these past months about needing surgery but being afraid to schedule it. Well, the decision was made for me me after I developed 2 abscesses in my colon and the infection...
I was diagnosed at 60 and am already being told that I need surgery. None of the medications have helped and in just a few years time, I have developed strictures in my colon and rectum. This is an...
I had fevers and flu like symtoms for weeks while on Humira. I stopped the Humira and finally went to the ER when I was so sick that I could barely get out of bed. Turns out I had an abscess in my...
My doctor prescribed a compounded cream containing flagyl and it healed my fissure....
I haven't had surgery yet but when I do, I have decided to name my stoma Flo. It seems fitting....
Thanks, everyone! What a lift you have given me. I knew you were out there, but lately all I have mostly seen was so much whining and complaining that I was thinking maybe I won't be better off at...
I am facing surgery and will definitely have a permanent ostomy. I have been putting it off because I fear the surgery and what life will be like afterwards. I have been on this board seeking...