Thank you! I know some of us like to think that with having something as bad as Crohn’s, that’s all we’ll ever have. It stinks that other stuff can start falling apart, too!...
Thank you for your reply! Yes, I’ve never had a diarrhea or constipation issue so eat a healthy amount of fiber. But one thing I’ve been doing lately is eating a lot of trail mix (a healthy variety...
I’ve had Crohn’s for 16 years and it’s and always been rectal. But now I’ve got diverticulitis, which hurts more than anything I’ve had in years. I’m being treated, but wondering why this happened?...
Hey, sorry for the slow reply. I missed the notifications. My fissure does not bleed (it did at the very start after I took a walk one day), and has been seen and documented with a colonoscopy. It...
After about 15 years, my only symptom of Crohn’s is fissures. No C, no D, no intestinal involvement, no fistulas. My pain ranges from 1 to 8, depending on the day. The doctor seems to think my case...
Hey buddy, I was on Remicade for about 13 years and it quit working for me. I didn’t have anitobodies, and my Remicade level was still high right before my next infusion, so no obvious reason it quit...
Thank you, Susie....
Thank you! Yes, I was on the SCD diet once and it seemed to help, but then when I had issues the moderator would tell me "oh yeah, peanut butter is bad" or apples, or almonds...it never ended. I have...
My only symptom for the 15 years that I've had Crohn's is fissures (not fistulas). Remicade healed me for 13 of those years (mostly). But now I've got them badly again and I have it in my head that...
Thanks! I’ll add that to my list of things to talk to my GI about....
Thank you. Yeah, I’m a tough case. Non-typical symptoms and responsive to Remicade for over ten years. I think my GI has a pretty good challenge with me....
Hi Beave, My Crohn's dx is based on the fact that I had a horrible, non-healing fissure, a positive inflammation test from whatever test they do at Prometheus Labs, and some inflammation in my...
I’ve never actually been on steroids at all. Maybe that would help. I can’t do imuran because for some reason my liver won’t tolerate it. I definitely need to consider something. Today makes four...
Yes, it's the only thing I'm on except for a topical nitroglycerin treatment. Maybe it's time for a steroid. All I have are fissures (and for no obvious reason outside of inflammation) and it's not...
Thank you. I'm afraid that more often wouldn't help since it isn't helping at all when it's fresh, but then again, maybe it would increase the total amount in my system. But you're right, it's...
Has anyone ever had Remicade stop working, without testing positive for antibodies? I had the trough test done before my last infusion (a measure of the Remicade level at the furthest point from last...
Thank you!...
Susie, I just did a little research and I read that colonoscopy prep can do this to a person, and that it can last months. You ever hear of that? The timing is right for me. Right after my...
Thank you, Susie!...
Ok, this is something I never thought I’d be discussing, but for the last several weeks I’ve have regular (twice a day) large, hard dry stools. It must be what it’s like giving birth! For many years...
Thank you! What a wealth of information. I ordered the cream you mentioned. Yes, seems that the Remicade is not working and I foolishly thought that the clinic I go to for my infusion was looking at...
Hey Joejo, Are you in the loading phase of Remicade? I remember when they started me out they initially had me going like every three weeks, and then eventually to the every 8 weeks stage where I am...
I don't know about y'all, but on days when my pain is only a 6 instead of a 10+, I feel like a king. Sad that it comes to this. One more Remicade to see if it really has started to fail on me. It's...
I'm sorry, Steve. From what I've heard, that's generally how it happens. I kind of consider myself luck (ironic since I wanted to die at the time) that my initial pain was so awful and debilitating...
No, I've never actually had a fistula. Just a very deep fissure. Couldn't sit much for a year! Now I'm just annoyed by them....
I'm still on remicade and I was last scoped about 4 years ago (due for another). The doctor has never found much in my gut, just a wicked fissure. Had a huge one toward the back, then a milder one...
How unusual is it to have Crohn's for 13 years, but only one symptom? I've had crohn's (or have been dx with) since 2005 and it has only manifested as rectal fissures. The first was awful and...
Eh, it's ok. People are so passionately divided on these things! But I was able to get what I needed from the conversation, so it's cool. Thank you!...
Thank you everyone for your help. I won't be doing the SCD diet but will more strictly adhere to my personal diet and avoid foods that after 15 years of trial have proven to mess me up (but I...
I believe eating right is the key to everyone's well being, but especially people with crohns. At work when I tell people about my healthy diet, sometimes people say "my cousin has crohns and eats...
Wow! Thank you for your detailed reply! These have mostly been my beliefs about the diet for a while. When I think I'm flaring, I just get scared and desperate and start considering things that...
Thank you. I wonder if I'm going too far doing the SCD diet if I already know my triggers (after 15 years of experimenting)? The idea behind SCD is that you aren't feeding the bad bacteria (while...
Thank you! I started SCD again today. Funny thing is that I'm more excited about feeling good than sad that I'll miss my favorite foods....
Out of the choices Paleo and SCD, which diet in general helps most people with Crohn's? I did SCD for 3 months and felt great, but eventually gave it up because of all the restrictions (which seemed...
Do you call the doctor when you flare, or is that just a waste of time, money and effort? I seem to be having a flare (thought it was a virus but it's been 11 days). My symptoms are fairly mild, but...
Do you ever have to guess if you are having a flare or if it's just a virus? I do sometimes and am right now. I've never had a flare (that I know of) that involved my guts (usually it's rectal), but...
I've been on the 'cade for about 11 years. Honestly, I'm not sure of my dosage. I know I was at 10mg for a while. Pretty sure it's going to kill me, but it beats the alternative. :tongue:...
Thank you. I couldn't get that kind of answer out of my doctor. He just suggested taking me off Remicade, which I think would be a huge mistake....
I think I'm at 5mg per kg. I weigh 211 right now, and just 165 when I started, so that's a huge increase....
Remicade dosage is based on body weight, but I don't think that formula works quite right. I have gained a lot of MUSCLE over the last few years, and my dosage keeps going up. It is starting to make...