Kyle with his wife!
Introduction:
My name is Kyle. I dwell from the wonderful apple state of Washington. Down with team UC since July 2012, posted my story on the site, Joined Team UC in July…World Rocked in August!. I am a sold out servant of Jesus Christ. I still have the most amazing wife in the world. I am a teacher, I Love to read, play hoops, and am currently #1 in my fantasy football league, Team Name: Remicade Renegade : )
Current Colitis Symptoms:
Still currently experiencing a tightness/cramps in the GI, energy level is up and down, also have knee aches every day (could be a result of tapering off prednisone), feet are achey as well.
Second Remicade Treatment:
8 a.m. but I have already been up for 2 hours, well 1 hour and 46 minutes, alarm went off at 6:14 am. I just get so excited for my Remicade mornings, my wife doesn’t appreciate my perkiness at 6 in the morning but come’on it’s REMICADE DAY!
To the hospital infusion center back again for round #2 of my Remicade Infusion. Things went much the same as the previous time, great care, comfy care and of course lunch provided : ) I can’t say that things have changed significantly from the last time I got my “Remi” infusion but I can say that things have definitely not gotten any worse for me. The infusion was a little shorter this time as I am now feeling more like a Remicade Vetran than rookie. During the infusion I got a little cold, warm blanket did the trick to fix that. Other than that I was able to go into work later in the afternoon for 2 hours. The following day I did feel a little fatigued but nothing too extreme, made sure to stay VERY VERY hydrated the day before, day of, and day after, that helped keep any type of headache down.
Believe it or not I was a groomsmen in a wedding that afternoon, didn’t get my dance on too heavy at the reception, knees and feet are still bothering me, but I was able to share a couple slow dances with my wife, oh and I got down to the Black Eyed Peas for a fast one, but you got to right?
My GI has told me that it usually takes 3 hits of the “remi” for you to get the full effect, so right now as I said above I am still experiencing the wonderful tightness in the GI area. Diet is pretty normal and am having normal solid BM’s each day, usually 1-3 depending on the food intake from the day.
But I know the million dollar question is “What was my lunch for my Remicade day?” Well I ordered myself some baked salmon along with some peas and an apple, however they mixed my apple up for an orange : ( It was a nice little afternoon lunch with my wife. She got the fish and chips : )
I am thinking so far so good with the Remicade, things seem to be going very smooth and good with the treatments, so I am not complaining one bit and am looking forward to the next infusion. I look forward to sharing my Remicade experience with all you UCer’s out there!
For those of you Remites out there:
- When did you start to notice a significant change?
- What was the biggest change you noticed from Remicade treatments?
- Any thing I should be aware of as I stay on Remicade?
- Have any of you tried SC diet along with Remicade? Thoughts? Success? Worth it?
Where I’d like to be in 1 year:
Love to see the UC put in a state of remission, have a “FULL” time teaching contract, and doing whatever the Lord is leading me to do in my life!
Colitis Medications:
Down to 1 lialda pill a day, 20 mg of prednisone a day (tapering off 5 mg every two weeks), still ballin’ out of control with the moonface, but my wife is happy my emotional swings have dropped off as I go down on preddy, still having a “tearfest” at least twice a week : ) , probiotic in the morning and at night, and a multivitamin.
written by Kyle
submitted in the colitis venting area
My name is Kyle. I am from the Evergreen State of Washington. I joined team UC in July of 2012. I am currently working in a school district seeking a full time teaching position. I also serve as a youth pastor in my local church and am sold out servant of Jesus Christ. I try to stay very active, current days it looks different, but I love all sports. I love playing basketball and running. I have an amazing wife, who I have been married to just over a year now, and let me tell you I married up! I would be willing to debate anyone that I got the cream of the crop : )
Im in the same boat as you dude, well almost. Getting my second remi infusion tomorrow but im at 40 mg of pred. Drink lots of water, it helps the moonface!
Cheers!
I have my 2nd one next Wednesday. The blood and mucous are gone, but still averaging around 4-6 times a day. The only question from above I can answer is Remicade seriously messes with your immune system and you should STAY very far away from sick people.
I too am hopeful these infusions work as I’m quickly running out of options and surgery sux.
Good luck and keep us posted.
Hi Kyle. I too am a Christ follower and wonder why he allows us to go through these trials. For me it is a humbling experience. I’ve had colitis for about 5 years. I’ve never experienced the remission that I hear people talk about. But I do go up and down. I’ve tried the SCD diet and it doesn’t seem to make a difference. Last winter I spent 2 months in bed. My days consist of several trips to the bathroom including the nights. I don’t get much sleep and feel like a zombie during the day. My GP wants me to remove my colon and my specialist wants me to go on imuran. I researched it and it scared me too much to take it. Cures symptoms of colitis, die of cancer. Lol. I have blood and constant diarrhea and gas. Often don’t make it to washroom in time as I am a landscaper so I have humiliated myself and have taken up the adult diaper. Because of urgency and the need to go to the bathroom when I begin eating I no longer go to restrauants. I have humiliated myself and have taken up the adult diaper as I don’t always make it in time. It’s been a couple of years. Movies are out and I haven’t skied which is my passion in years. I don’t go to friends houses anymore as I will spend have the time in their bathroom. So about 3 weeks ago I decided to start praying for myself. I have never done that before as I have felt it is self centered of me. So I’m using the example of the woman who keeps going to the judge to plead her case and she wears him down and gives her her way to get rid of her so to speak. That is my paraphrase. So I think God is leading me on a path to healing in the last 3 weeks. I’ve been experimenting with fecal transfers with my wife as the donor and vitamins. I’ve put together a vitamin and salofalk “cocktail” that I take twice a day. My whole wold has changed. I used to sit on the throne for hours screaming in pain to the point where I would be throwing up at the same time. I used to spend 1-2 hours in the morning going to the washroom. What a waste of time. The last 2 weeks have been a 180 turn from years of colitis symptoms. For the first time in 5 years I went to the washroom ONCE a couple of days ago. And now I am averaging 2-3 vowel movements a day and sleeping right through the night. My bowel movements have gone from bloody diarrhea to 85% solidly formed with no blood. I have not even felt the need for a diaper for almost 2 weeks. The pain is gone as I write this. I had forgotten the pain. It’s funny how you don’t notice it when it’s gone. So in going to faithfully keep praying for myself, fecal transfer courses every so often, and the vitamins. I’m going to drop one every so often to see if I can narrow down what is actually helping me. So that’s my story and I’m sticking to it. :) If I felt the way I have even for the last week I would have no complaints for the rest of my life and would even say that I do not feel like I have colitis. I have only kept dairy out if my diet for the last couple if years as I noticed that it would send me downhill. I am going to reintroduce it in a month or so if I keep feeling well. I so love ice cream. I have also cut sodas out for the last year or so. Around noon today I had a coke and as if now 5:20 I am feeling fine. I noticed I did not enjoy the coke like I used to. I used to drink 2-3 a day and loved the taste. Today it seemed to not taste good to me so I could now live without the coke and it would not bother me. I also cut out alchohol and this weekend had a beer and yesterday had 2 gun and tonics with no ill effects. Is this what remission is like? If so I’m all for it. I don’t know why I never prayed for myself before but now I am sure glad I have and will continue to.
Gary.
I started to get better after My third infusion, but already after the first infusion the pain had stopped… Yes drink a lot of herbal tea, up to 2 litres the same day and the day after the infusion, it helps detoxing..in the meanwhile I had started a vegan diet, after one exact year of infusions I stopped because I could feel my body had enough..so now I am medication free since September 2011, feeling great and in remission..best of luck!!
Laura
Please forgive the grammar and spelling mistakes. I am using my phone to type and I can’t seem to scroll back to see what I have written and only can see a small bit if the screen so I may have also repeated myself to get my ideas out. The site must not be optimized for mobile use. Anyway, oh I forgot to mention for the last 6 months before I recently got better I was getting very depressed. I was wondering if life was worth living attached to the toilet with no energy from the disease and/or not getting any sleep. I wasn’t suicidal at all, but then I look at people who have health problems way worse than mine and see how some of these people cope with positive outlooks on life and it resets my perspective. I saw this guy on TV a while back who is truly an inspiration, and thinking of him I am lifted up. His name is Nick Vujicic and he is a motivational speaker who has no arms or legs. Yeah. I really don’t have a serious problem. ;). Look him up. He has some YouTube videos too.
i have had UC for 2 years and have never been in remission. Tried all the drugs and now have had 3 doses of Remicaide and no changes. Now dr wants to try combo of 6MP and Remicaide. 6PM was not good to me last time I was on it, so I’m worried..what other meds can I take?
Did you try with the diet? Are you on Probiotics? when I was sick, went to toilet about 20 times a day, terrrible pain, blood etc..VSL#3 help a lot, up to 4 times a day.
Really don’t give up!!
All the best
Laura
I don’t know for sure what other meds you can take. I am currently only prednisone which is a steroid anti-immflammatory. I would recommend finding other options than prednisone as the side effects are brutal. I am currenly hoping to be off all meds other than the remicade come the first of the year. I’m also taking pro-biotics, but that is just a preventive measure as I had a bacteria infection of my colon this past summer and we are trying to bulk up the colon to prevent the bacteria from coming back. I just heard Humira is no approved for UC, which is very similar to Remicade except it is in a shot form every 2 weeks rather than an infusion. Hope this information helps. Stay up!
Kyle
Hi Kyle,
Me again, I replied to your last post as well :)
I just had my 9th Remi treatment (although I am usually dragging for about 4 days afterwards I went from being nervous to looking forward to them). I noticed a decrease in BMs after 1st infusion in hospital and started to really see improvement after 3 or 4 so you are pretty close to being there my friend yeah.
Again I will say be careful with the probiotics while on Remicade it can be dangerous because we are on immunosupressants the bacteria (which is usually good for us) can cause us to have sepsis after all bacteria is bacteria, so if you need to bulk up and this will also help to lower the number of stools take metamucil. I know I thought my GI was crazy at first for suggesting this (Like I need help to keep me regular) but he explained the psyullium is a prebiotic and will keep our colons healthy. Guess what it works. I went from 4-5 soft to loose to 1-2 semi or formed.
As for joint pain I have that too, I have sacraliliitis(lower back pain) very common in UC I am told and tendon inflammation in my hands and achiles tendons. I am doing physio for that and hoping it will clear up.
Still working on hard on stress reduction,meditation, therapy and positve thinking. Just started taking a Reflexology course so I can help others as well.
I am attending a IBD symposium this Saturday and will let you know if I find anything ground breaking to share.
Keep up the forward motion relief is just around the corner because we are strong.
Teresa-
Thanks so much for your reply. I spoke to my GI about the probiotics last time I was in and he seemed to think the ones that I was taking were of no concern for people who were on Remicade. I will ask him again about it next month to be sure.
I am glad to hear that things are going well for you, hope things continue to improve for ya!
Blessings,
Kyle
Hey Kyle!
I have had UC since June of 2011 and was pretty much in a flare up until I started Remicade in Sept 2012. I had a good month from about mid- April until May this past year when my flare spiraled out of conrol. I stared at 40 mgs of Prednisone and when I would try to taper, I would get blood and mucus back. So I tetter tottered back and forth with trying to taper and it didn’t work. So on August 15th (my 27th Bday) I was admitted to the hospital to do IV steroids and get fluids as I was severely dehydrated. After 8 days I was released and started getting the ball rolling for Remicade. I just had my third invusion and I am doing the best I have had been since before I was diagnosed!! My only complaint is that I still have colon pain, it comes on after eating. It’s not horrible just annoying more than anything.
I was worried about my immune system as I work in a Pharmacy and deal with ill patients all day everyday. I just take extra precautions now, like using hand santizer VERY often and washing my hands as well. I also make sure that my co-workers are thoughtful of the samething and to warn me of any of them being sick, even if its just a little “bug”. I did notice that I was having some seasonal allergy symptoms and it took me a little bit longer than everyone else to get over it all even with using an antihistamine and sudafed.
Other than that I LOVE remicade!! I actually feel like I can actually plan things now instead of just going day by day not knowing if I am going to be able to leave my house or not. Good Luck with your Remicade Journey!!!
Kate
Kate
Kate-
Thanks so much for your response. I am so glad to hear that your remicade infusions are going well for you. I have my 3rd infusion this friday and similar to you I am noticing great strides in my battle with UC. I work in a middle school so I am constantly washing and santizing my hands, gotta love kids right : ) Thanks so much for the encouragement, please keep me updated on your remicade treatments.
Be Well
Kyle
Remicade is a great drug! I’ve had 7 infusions now.
I was in remission after the 3rd, still going strong, except this time it felt less effective than last.
I got my 7th infusion on the 2nd, it’s the 27th and i’m still feeling crampy and bloated all the time! but still “bombing logs” as Adam would say and having no blood in bms, so it’s all good from that department.
about the lialda, the minimum dose for remission should be 2 pills, not 1, if you’re not in remission, you should be on 4 a day, so you might wanna call your GI about that. I take Lialda too (it’s marketed as Mezavant XL in Ireland though) and although i’m in remission, they’re adamant that i take 2 a day!
Hope you’re better soon!!
– Jamie
Jamie-
Thanks so much for your reply. I am currently not taking Lialda at all anymore. Unfortunately insurance does not cover the prescription for me, so I was taking samples from my GI. I had a convo with him last time I was in and he told me that I could move away from them as I have been on them since July and they did not help one bit with UC symptoms, it may be a route they have me go with once the Remicade helps put me back together, but for right now the GI felt that Lialda just wasn’t doing anything for me. I have an appointment with him next month and I will ask him again about why I am now off the Lialda. Thanks for writing. Have a great day!
Kyle