Hi everyone!
First, my name is Lindsay. I'm a 28yo female. I'm American but currently living overseas in the United Arab Emirates (in Abu Dhabi) working with kids with Autism. I'm an applied behavior analyst so I work with kids to find the most effective child-specific teaching strategies to combat their learning and behavior deficits. It's a very intensive job both physically and mentally but I love what I do.
I was recently diagnosed with Crohn's Disease (June 2016) after having years of IBS symptoms (mostly C, rarely D) that culminated in bloody stool and abdominal pain (March/April 2016). After a colonoscopy, barium swallow, and MREnterography my GI concluded I have Crohn's. She has never specified where exactly but I read the copy of my colonoscopy (I get copies of all my reports) and it showed some patchy inflammation throughout the colon and the official note on that was "left-sided colitis with skip lesions indicative of probably Crohn's". The XRay and MRE showed no stricturing or obstruction. That would suggest mostly in my colon although I rarely have D. I generally have 'upper GI' problems like nausea, stomach pain, appetite issues, etc when I am flaring.
I was immediately started on 40mg of prednisone and 3mg of Pentasa (2tabs/3x a day). I saw a great reduction in symptoms with very little side effects to the prednisone (some weight gain and eventual moon face that went away with the taper). By August 2016, I had tapered to 20mg of Pred and started Imuran. Initially I think it was working pretty well but I started developing severe nausea (Nov 2016) as the pred taper continued down to 10mg so the pred may have just been masking the side effects. I suspended Imuran after nausea so bad I had recurrent vomiting (Dec 2016) and the nausea/vomiting went away so I continued at 10mg of pred. I refused to retry the Imuran, and the new gameplan was to try Remicade infusions. I had my first infusion in Feb, second in March, and just had my third loading dose on April 6th. Between the second and third doses, I was tapering the pred down to 5mg. Simultaneously I had some sort of infection (asymptomatic other than flare symptoms) that was diagnosed through bloodwork and did a week on Cipro. I felt great. Within 3 days of discontinuing the pred (after being on 5mg for two weeks, and 10mg for about 3 months before that) I developed severe nausea, kidney/flank pain, fatigue, exhaustion, insomnia, headaches, lack of appetite. My doctor tested my blood for infection and it was negative, so we attributed the symptoms to my Remicade wearing off a week before the third dose. I received the third dose and it did nothing to stop the symptoms I was having. Around the time of my third dose, my GI went on vacation for a week and a half and I continued to have symptoms.
Finally, after talking to a GP at the hospital we concluded that either the Remicade wasn't working or I was having withdrawal symptoms from the prednisone (which I'm leaning towards as the reason) so he suggested I restart Pred at 40mg to get the symptoms under control until my doctor is back and I can get in to see her (next Tues) and restart the taper -- back to square 1.
Well its been 5 days on the pred and finally starting to feel like a real person again. I've been on a low-residue diet for about two weeks that at its worst required my to puree my foods just so I could force myself to eat and supplement with Ensure (the powered variety-- less preservatives). Now I'm back to eating solids, 4-5 small meals a day, and feeling a bit better. Still not 100% but should be able to go to work next week. I missed 4 days (unpaid) this week and while work is understanding, it still doesn't look good.
Anyway, during the last two weeks I've done a lot of reading on this forum and others, so I thought I should maybe get involved and start talking to other people who understand the struggle. I'm still struggling daily accepting that this is my life for the time being. Fortunately, my symptoms seem mild compared to many peoples and I am so grateful for that. I'm really hoping to get my Crohn's into remission quickly to prevent further damage and restarting pred has been both a godsend, because it is alleviating my symptoms, and a knockdown since I know that longterm use can create a lot of problems with the adrenals, bones, etc. I'm hoping that we can taper slower down from 5mg next time since I tend to struggle in the 10-5-0 range and hopefully the Remicade will do its job.
Currently taking:
Vitamin D supplement
Folic Acid supplement
Pentasa (3g a day)
Remicade infusion (3rd loading dose April 6, 2017)
Prednisone 40mg
Nexium 40mg
Drinking a few ounces of kefir daily as well as taking a capsule probiotic
Calcium supplement
I am going to talk to my doctor about introducing MTX to help boost the effects of the Remicade and to ward off the production of antibodies.
Looking forward to the support of this forum!
--Lindsay
First, my name is Lindsay. I'm a 28yo female. I'm American but currently living overseas in the United Arab Emirates (in Abu Dhabi) working with kids with Autism. I'm an applied behavior analyst so I work with kids to find the most effective child-specific teaching strategies to combat their learning and behavior deficits. It's a very intensive job both physically and mentally but I love what I do.
I was recently diagnosed with Crohn's Disease (June 2016) after having years of IBS symptoms (mostly C, rarely D) that culminated in bloody stool and abdominal pain (March/April 2016). After a colonoscopy, barium swallow, and MREnterography my GI concluded I have Crohn's. She has never specified where exactly but I read the copy of my colonoscopy (I get copies of all my reports) and it showed some patchy inflammation throughout the colon and the official note on that was "left-sided colitis with skip lesions indicative of probably Crohn's". The XRay and MRE showed no stricturing or obstruction. That would suggest mostly in my colon although I rarely have D. I generally have 'upper GI' problems like nausea, stomach pain, appetite issues, etc when I am flaring.
I was immediately started on 40mg of prednisone and 3mg of Pentasa (2tabs/3x a day). I saw a great reduction in symptoms with very little side effects to the prednisone (some weight gain and eventual moon face that went away with the taper). By August 2016, I had tapered to 20mg of Pred and started Imuran. Initially I think it was working pretty well but I started developing severe nausea (Nov 2016) as the pred taper continued down to 10mg so the pred may have just been masking the side effects. I suspended Imuran after nausea so bad I had recurrent vomiting (Dec 2016) and the nausea/vomiting went away so I continued at 10mg of pred. I refused to retry the Imuran, and the new gameplan was to try Remicade infusions. I had my first infusion in Feb, second in March, and just had my third loading dose on April 6th. Between the second and third doses, I was tapering the pred down to 5mg. Simultaneously I had some sort of infection (asymptomatic other than flare symptoms) that was diagnosed through bloodwork and did a week on Cipro. I felt great. Within 3 days of discontinuing the pred (after being on 5mg for two weeks, and 10mg for about 3 months before that) I developed severe nausea, kidney/flank pain, fatigue, exhaustion, insomnia, headaches, lack of appetite. My doctor tested my blood for infection and it was negative, so we attributed the symptoms to my Remicade wearing off a week before the third dose. I received the third dose and it did nothing to stop the symptoms I was having. Around the time of my third dose, my GI went on vacation for a week and a half and I continued to have symptoms.
Finally, after talking to a GP at the hospital we concluded that either the Remicade wasn't working or I was having withdrawal symptoms from the prednisone (which I'm leaning towards as the reason) so he suggested I restart Pred at 40mg to get the symptoms under control until my doctor is back and I can get in to see her (next Tues) and restart the taper -- back to square 1.
Well its been 5 days on the pred and finally starting to feel like a real person again. I've been on a low-residue diet for about two weeks that at its worst required my to puree my foods just so I could force myself to eat and supplement with Ensure (the powered variety-- less preservatives). Now I'm back to eating solids, 4-5 small meals a day, and feeling a bit better. Still not 100% but should be able to go to work next week. I missed 4 days (unpaid) this week and while work is understanding, it still doesn't look good.
Anyway, during the last two weeks I've done a lot of reading on this forum and others, so I thought I should maybe get involved and start talking to other people who understand the struggle. I'm still struggling daily accepting that this is my life for the time being. Fortunately, my symptoms seem mild compared to many peoples and I am so grateful for that. I'm really hoping to get my Crohn's into remission quickly to prevent further damage and restarting pred has been both a godsend, because it is alleviating my symptoms, and a knockdown since I know that longterm use can create a lot of problems with the adrenals, bones, etc. I'm hoping that we can taper slower down from 5mg next time since I tend to struggle in the 10-5-0 range and hopefully the Remicade will do its job.
Currently taking:
Vitamin D supplement
Folic Acid supplement
Pentasa (3g a day)
Remicade infusion (3rd loading dose April 6, 2017)
Prednisone 40mg
Nexium 40mg
Drinking a few ounces of kefir daily as well as taking a capsule probiotic
Calcium supplement
I am going to talk to my doctor about introducing MTX to help boost the effects of the Remicade and to ward off the production of antibodies.
Looking forward to the support of this forum!
--Lindsay
