I was on Remicade for 4 years with my first, and 7 with my second. I felt so much better right after I started and then felt fantastic for 6 months, but then it started losing strength. It's too bad...
Pentasa is useless. Get a colonoscopy and/or an MRI to evaluate your levels of inflammation. When was your last one? How we feel does not indicate disease severity. I went 10 years with no meds...
I went to the doctor on last Wednesday when I was still super swollen with really bad feet and high blood pressure. I weighed 192. And then I went back to work teaching. Today, I went to the same...
Well, my feet are still pretty swollen and my blood pressure is still high. I'm on a med to treat both, but it makes me feel kinda pukey and like I'm on a boat. I also wear compression socks. My GI's...
Thanks for commenting, everybody. I'm a bit of a mess after all this. And my blood pressure is super high and no one can tell me why. I used to be 120 and now I'm in the 150s to 170s everyday. Also,...
Hi, everybody. Don't know why I'm telling you all this after the fact, but I almost died on the 19th. I had a little bit of puking and then diarrhea off and on for 2 days. I'm a Crohnie so the idea...
15 years!?! That's terrible! How did you stand it??? I was only on it for a year and that was bad enough. That low grade chemo made my hair fall out and made me nauseous for 3 months straight. If I...
I would say happy hour! You can both have a drink, loosen up, and not really worry about food. You can't even talk to someone in a movie, so I think it's a terrible first date....
I started remicade in may 2010 and by july 2010 it closed up my fistula. Maybe your fistulas are healing and the tissue is starting to reject the setons? Does blood have to mean bad or can it mean...
hmmm I wouldn't know anything about all that. All I know is, Remicade closed up my fistula in less than 2 months, but 5 months it reopened again. My doc put me at 6 weeks, max dose, but it never...
I'm so sorry to hear this. Surgeons willing to work on fistulas are rare and then surgeons who are willing to work on RVFs are nearly impossible to find. My brother says that few surgeons will even...
Hey, MB! Sorry to hear that you're feeling bad right now. I was also diagnosed at 15. My first symptom was a fissure that just wouldn't heal. I wanted to die everyday, but I just kept hanging on....
I had a fistulogram about 8 years ago. You go in, get the gown on, lay on the slab, and then they inject dye straight into the fistula. Then take xrays. The guy said to let him know when it started...
Yeah, I didn't answer this because I couldn't make sense of the question. Maybe the OP meant fistula???...
POOOOOOOOOOOOOOOOOOOPPPPPPPPPPPPPP...
:O I'm gonna be in Houston February 7-10 for training! Let's make it happen, people!...
Either way, come to Texas! We're all here and we all have fistulas! Clo in Dallas, Scifi in Houston, and me in Austin. We could have a fistula partayyyyyyyyyyyy. :D...
Hey UB! My CRS is in Austin, Texas, but that's really not far from Houston. You could fly in to Houston, see scifi's doc, and then take a car or bus up to Austin and see mine. FYI, he only does...
Hi, UB! You should look into my surgeon. He eats fistulas for breakfast! He worked on me and on the wife of the hospital president, so his skills are well known. And he's delicate and considerate...
Going to the ER and asking for a FLAP won't do you any good. Even if you got lucky and found some random surgeon to do a FLAP on you, why would you want someone you haven't even vetted to touch you...
I'm thinking of you NCOT and hoping that life gets less hard for you. I hope you do whatever the hell you want to do with your time here on this messed up world....
Sorry to hear that, Zoe. I need to go in for my final appointment in late January to confirm, but things are still good for me so far. There were a couple of times where I thought stool was coming...
Yeah, I don't see a connection either. I had zero colic and I loved the boob! My mom breastfed me till I was 2 and a half and I'm the only one in my family with Crohn's disease....
Well, I'm in a weird situation, Zoe. I had an MRE on Tuesday where I had to drink something that flushed me out big time. After all that tenesmus, it felt so good being really empty. So since...
I'm 16 days post FLAP and doing better! The main thing I'm feeling right now is tenesmus, but it's not the end of the world. Mine is perianal, so it's easier than an RVF. I'm on the abscess fistula...
If they can't find evidence of inflammation, they'll just tell you you have IBS. Frustrating as hellllllllllllllllllllllllllllllllll...
Wow! I just read through this whole thread right now and I have to say, Plucky, wtefffffffffffffffff You've been through so much! I really hope life can cut you a break with your surgery. I'll be...
You can call the after hours nurse! Call your surgeon's number and follow their directions in leaving a message. Then your surgeon's after hours people will call you and if it's really bad, even your...
If you want to save your FLAP, get a hold of your GI's office now! They should have something that you can take as an emergency med like a suppository or something. I'm really worried for you Zoe!...
Dude, I'm surprised they gave you the good drugs. All I got was hydrocodone, which is just fancy tylenol/acetaminophen. I had a BM the next day, faster than when I had my seton surgery. I ran out of...
If you can take it without wanting to die, take cipro flagyl now and see if you can stop it before it bursts. If cipro flagyl works in the short term, you still need to go in and see your GI asap....
hmmm I would say you need to up your dose or add another immunosuppressant like 6mp to the mix. The Humira isn't doing enough and it may even be making things worse. It's rare, but there's a woman on...
So what meds are you on to help decrease your inflammation??? It sounds like your disease is super out of control....
Man, you're so lucky, stevo! You can get on remicade and get better! I was on remicade for 7 years and it only closed up my fistula for 6 months during that time. I'm grateful for it because it...
So I had the FLAP done on Monday afternoon for my 8 year old fistula. At the time, I'd only had a draining seton in for 6 weeks. In post op, I told them my pain was at a 1 so they gave me something...
I'm having mine today! I'll let you know how it goes....
I was younger than you when I was diagnosed. I was the only one in my family to get it. I got better and everyone told me that it was a mistake, that I was misdiagnosed, and so I spent too many years...
I was 15 when I was diagnosed too. It took months of different doctors with different diagnoses and no meds prescribed. Then finally in pediatrics, my mom lost her total ever loving sheeeeetttt. She...
Imuran Pentasa and Entocort! That's a ton of drugs! :O He must think that your case isn't that mild. :/...
Entocort is a steroid and a pretty mild one at that. It won't give you a lot of health benefits or side effects. It's designed to give a patient a bit of a boost when the maintenance med that he/she...
Yes....
Yeah, dude, I was put on 9mgs of budesonide to help me roll over onto Entyvio. I was just taking two pills a day but now I don't need them at all. I did the loading doses plus a regular dose of...
Yeah, I know, girl, that's why I had to say something smarta$$y. I'm on a fb group called Entyvio Warriors. It seems like everybody and their mother is suffering from joint pain, except me! lolz...
uhhh... joint pain and swelling, I believe, are the most common complaints of Entyvio. o.O...
Hi! I'm 3 and a half weeks post my seton placement surgery. I never put gauze on it afterwards. I just wore a pad or panty liner to catch the drainage. There's drainage everyday, but it seems to come...
After that terrible night, I've been great! Did they numb me so much that it's still in my system and that's why I'm not in pain??? I'm just finding my current state very hard to believe. :O...
I had so much puking the first night (Tuesday), but I'm actually doing pretty good! I barely had any pain yesterday and none today, plus hardly any bleeding or drainage. I haven't touched the good...
I had seton surgery yesterday; it went well, but on the ride home, I started to feel nauseous. I then proceeded to puke every bit of water I tried to consume for the next 5 hours. Anybody else react...
NCOT, I have had this disease since I was a kid and the plan was to enjoy my life and then check myself out whenever I felt like I had had enough. Seriously. I lived with a very short term mentality...
I've got my 1st surgery on the 15th for a simple inter/transphinteric and I'm very nervous! I won't have a lot of help till the 18th. :/ How were you on days 1 and 2? Did you really do sports the...