Hey guys please share my Facebook posts, particularly these two: Thank you for all your help guys! 26 year old male diagnosed with ulcerative proctitis mid 2014, pancolitis after a colonoscopy in...
Thanks Dikid, I have a follow up appt next week and will email my GI and see if we can get those tests done then....
Just had my third remicade infusion today. Doc said it wasn't C. diff from blood work that was taken yesterday and that all my blood work is completely normal, even my white blood count was normal,...
My GI thinks prednisone doesn't really have that much affect on me because I was on 120mg of solumedrol with no signs of improvement when I was in the hospital. Perhaps I have a tolerance to steroids...
I've been talking to a surgeon throughout this whole thing and the last time I talked to him (about a week and a half ago) he thought surgery wasn't necessary at this point and that the remicade was...
I tried to get my third infusion approved when I was in the ER yesterday but they couldn't do it and both the ER doctor and my GI thought it wouldn't make very much of a difference to wait until...
I had been doing so great for the past few weeks. I've been feeling better than I have ever felt in my life. I've eliminated a bunch of stress, have been working out every day, eating healthy, gained...
Dikid, are you completely off steroids now? I'm so glad Remicade has been working for us. I don't think not telling your GI is a good idea I don't think they would take you off remicade because of...
My GI has told me a little bit of mucus is nothing to be concerned about. Could you try a mesalamine enema instead of Canasa at night to treat more of your colon? Maybe you could try Canasa during...
I'm sorry you're going through all of this, Sara. It's crazy how stress plays such a huge factor in our disease. I had the same question as you, my symptoms are returning and I really want to...
I was worried at first once I started calculating my calories and saw it was around 4000. But my GI said as long as I am having solid BMs it should be okay. I've been having very healthy looking BMs...
My GI said he has no objection to me staying on 60mg of prednisone until my 3rd Remicade infusion next Wednesday. The reason I was doing 20mg q8h is because when I was in the hospital I seemed to do...
My symptoms have been almost completely under control for about a week and a half. I've been having consistent solid BMs with maybe a little mucus and the occasional Lialda tablet. I've been eating...
Just had a checkup with my GI and he told me to go down from 60mg of prednisone to 40mg because my symptoms have improved so much. I've been taking it every 8 hours. I didn't really feel comfortable...
It looks like it was a muscle issue. There were knots throughout my entire lower leg and feet. I thought it was a joint issue because I hurt my knees a few days ago but I must have been mistaking the...
L glutamine and huge calorie/protein boost. The increased calories have been pretty gradual though. It might be rapid muscle growth I just massaged my leg and couldn't feel my muscles rolling out....
Update: I'm continuing to get better and am at only 2-4 BMs a day that are solid with just a little bit of mucus and still seeing a few almost full Lialda tablets in stool. I've been eating 3000...
Thanks iPoop, that makes me feel better if my GI doesn't want to approve the switch. The whole pill was seen a couple days ago and I think I've healed enough for that to not happen again. The biggest...
I think I am somewhat steroid resistant, at first it helped with pain but then it stopped working. I have been on over 60mg of steroids for 7 weeks, I was on 120mg of Solumedrol for a week. I really...
Also, the full Lialda was seen a few days ago, they have been breaking down better since then....
I have new insurance now that I've been able to work with. I'm sure I can convince them to give me Apriso at "preferred medication pricing" which is $60 a month (was paying $15 for generic Colazal)....
I'm still waiting for my GI to call me back but I think I'm going to stick with the Lialda. I see the medication in every single one of my stools (that are completely solid now with a little bit of...
I'm making a lot of progress overcoming this flare. A few days ago I was scared to move without being in pain but all of a sudden yesterday I felt great. I still had 6 BMs but there was much less...
I just got home from my surgery consultation and am feeling great. The surgeon said it would probably take a few weeks to get a surgery scheduled unless it was an emergency. I was kind of impressed,...
Yea the picture is hard to decipher, all my GI said is that the inflammation is very severe. I am not on imuran/6mp. I think I still have a shot too and thanks for helping me stay optimistic...
I think he cancelled remicade because he is positive I need surgery and surgeons don't want you to be on remicade and steroids. I really don't want to have surgery and it is definitely a last resort....
I think the only surgeons that will accept my insurance are all at the same office. There are four surgeons that work there and I have a consultation with the least experienced one on Wednesday. My...
I think it's too early too, my GI disagrees and thinks it's not working at all and that the inflammation is severe enough for surgery. I'm going to meet with a surgeon I talked to while I was in the...
How long did it take for you to see noticeable differences from Remicade? It's been 5 days since my second infusion and I haven't noticed anything huge. I am not seeing very much blood anymore but am...
He hasn't suggested entyvio or cyclosporine and I've had 2 Remicade infusions, my last was on Tuesday....
Thanks for all the support everyone. Unfortunately, after my last post things started going a little downhill. I had over 10 more BMs throughout the evening, but they were mostly solid with no blood....
I started prednisone a little over a month ago at 60 mg a day for a week. I then moved up to 80 mg of solumedrol IVs for a few days, then 120mg of solumedrol (30mg every 6 hours) for about 5 days....
Thanks, Dikid. The current meds I've taken today are: 40 mg prednisone 9 Colazal 1 hydrocortisone enema 1 mesalamine enema 6 VSL#3 capsules 1 tramadol 1 hyoscamine tablet I haven't tried imuran or...
I think the first loading dose helped slow the blood down. The second dose seems to be helping a little bit. I've still been in a lot of pain today but I've had 8 BMs compared to being at 10 around...
I think they only gave me 5mg/kg, I knew I should have asked for a larger dose. I think they only did 5 mg/kg because I lost so much weight and I'm weak from being on a high dose of steroids for over...
Update: Just had my second Remicade infusion yesterday. My GI still wants me to have surgery since my symptoms have not improved that much. He's going to do a sigmoidoscopy on Friday to see what...
Okay, I spoke too soon this morning. Today has been a pretty painful day, I've had 6 more very painful BMs today and noticed that I've lost about 4 pounds since I was discharged on Monday. My stools...
ElpisUnbreakable: CBD oil is a non-psychoactive ingredient in cannabis that has anti-inflammatory properties. I live in Oregon and have recently been trying marijuana to help with symptoms. I don't...
I just wanted to give everyone an update and thank all of you for your help. I'm getting discharged today after being in the hospital for a week. I started Remicade on Friday without the results of...
I took your advice and the tramadol with anti spasmodic made yesterday a lot better. The results of my second TB test came back inconclusive so they took a third sample of blood and I still have to...
Thanks Dikid. I was worried about Dilaudid because Drugs.com says not to take it if you have: severe asthma or breathing problems; a blockage in your stomach or intestines; or a bowel obstruction...
Rowasa has gotten me out of minor flares...
Thank you, notsosicklygirl. I hope the Remicade helps too, I wish I came to the hospital weeks ago before it got this bad :(...
Hey everyone, I've been in a lot of pain last night and today and was looking for some more advice. Yesterday I felt like I was doing better, I was able to hold in a hydrocortisone enema all morning...
Thank you, Dikid!...
Surprisingly, I haven't noticed very many side effects from the steroids. I am having a little trouble concentrating and noticed some acne on my chest today but it doesn't really prevent me from...
Well it looks like I'm forced to wait off on the Remicade for at least a day or two. The results of one of my blood tests were inconclusive so they took more blood again (man, I've had blood drawn...
I'm debating whether to try the Remicade today or to give it another day. Last night I only had 2 BMs throughout the night. They were still very loose and had some blood but that is better than the...
I started steroid enemas last night and think they already have helped. Today I've felt a lot better and while I'm still having very frequent BMs, there is much less blood. I might even want to...
Thanks guys, I definitely want to try Remicade. The surgeon said that since my immune system is so weak and since I've lost so much weight that he would require 3 separate surgeries at 3 month...