Had the rest of my colon to rectum removed as well as a hysterectomy 11/11/15. Now my gastro wants me to go back on Entyvio. I had no response to it before the surgery, but she seems to think it's...
First off - BIG HUGS!! You are not alone. I have all of the same issues. Joint swelling, light sensitivity, constant pain - everywhere, etc. These are all secondary CD issues. I have not had any luck...
I have had no luck with any of the biologics. I have done them all. In fact I am having the rest of my colon removed in a few weeks. My stricture and RV fistula got worse on entyvio. In regards to...
Thank you for the helpful responses. I am overwhelmed, but nothing new in the life a severe Crohnie......
Thank you for the helpful responses. Sklya12 - please feel free to contact me @ [email protected] or find me on FB sarah sperling sorge. would love to have someone to talk to that is going thru the...
I have had Crohns for 22 years and they can no longer save the rest of my colon. No biologics have worked. tried everything on the market. So on 11/11/15 they are removing everything from the rectum...
I recently quit entyvio. I had no relief at all from it. In fact, my toes started going numb as soon as I started it. I would start to regain feeling in my toes and it would be time for the next IV....
I was in remission with both of my pregnancies. I stayed in remission until I stopped breast feeding. Within 3 months all of my symptoms were back. Enjoy it while it last and don't worry about the...
Have any of you tried Eneteragam?? I am having a hard time getting it down. Any suggestions???...
When I first became sick I had ulcer from my lips all the way to my rectum. I still get them, but not as often. Started Entyvio 10/15/14. I have actually been feeling worse since starting it. have...
I was referred to the "top" Crohns doc in Houston. He is very hard to get into, after 4 years, he still stares at me like I am crazy because I do not respond to the biologics. But, I did meet one of...
Thank you!...
well, after 6 months of Tysabri my doc has discontinued it. No results what so ever, in fact I have gotten worse. Bowel obstruction in January, now I am anemic and doing IV iron for a month and once...
I mean hell - by they have to kill off your immune system, harvest your own stem cells from your bone marrow, kill system again then infusion the cells then finally start to build your system again....
I have researched stem cell replacement. the process is brutal, but I am with you if it works - what is 6 months of hell compared to the rest of your life feeling good or better... I have done a...
I thought my fistula was healing, but I guess I was so inflamed that it was just swollen shut. 2 weeks on IV and oral antibiotics it is wide open. Since I have diarrhea all the time I have leakage...
it must be in the air here in Houston... I was recently hospitalized at Cy-fair hospital for a bowel obstruction and it was my worse hospital experience ever! Same issues with the nurses. I had a EG...
I do not tolerate Iron supplements well and have a large number of food issues. Any suggestions on how to increase my iron? The fatigue and everything else associated with this is taking its toll and...
Where to start... joint swelling and pain vision issues - blurry & goopy Allergies Asthma chronic fatigue Attention issues mood swings depression skin rashes hair loss all over aches muscle craps...
M asthma is for sure worse when I am in a bad Crohn's flare. my GI says there is a correlation between the 2 and his NP says there is not. I tend to believe the DR over the NP......
Don't live your life in fear. I have 2 healthy children that have showed no signs of CD or any other autoimmune disease. I had signs of CD my entire life. Enjoy each day and don't let CD control it....
Congrats!! I was so lucky when I was pregnant and I went into remission and stayed that way until I stopped breast feeding. I loved being pregnant and it was the best I had felt in years. I was med...
I have the joint issues also and it for sure depends on how bad my gut is or is going to get. I will swell just before a bad gut day. There have been many days I can barely walk because my hips are...
I was on Cimzia for about 1-1/2 years. I did have some relief, but not enough of a response to continue the med. I was on 1 injection every 2 weeks. the once a month wasn't enough. No major side...
My period is ALWAYS flares up my symptoms. My OBGYN had put me on constant birth control to stop my periods and it really helped. Its an option you may want to look into. Now that I am don having...
I was diagnosed in 1995. The "side effects" keep getting worse as the years go by and I feel that the Dr's just disregard them. To me they are more disruptive that the gut issues....
I have every "side effect" you can possibly think of when it comes to CD. Joint Issues, fatigue, chronic pain, vision issues, skin issues, memory and attention issues, hormonal (female) issues,...
You are not alone. It's been a rough 3-1/2 year for me and I get mad every time I have to rush to the bathroom or the pain for no reason....
My gastro has informed me that there is another version of this med coming out next year that does not penetrate the blood/brain barrier...
I have had a rectovaginal fistula for year and it leaks all the time and my doctor don't seem that concerned about it - which is frustrating because its annoying and does interfere with my sex life....
I was diagnosed in 1995 at the age of 22. I have had 1 bowel resection, appendix and gall bladder removed. I have tried every drug on the market with little to no relief. I have also participated in...