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Crohn's Disease Forum » Your Story » Just Introducing Myself


04-14-2017, 10:26 AM   #1
Linds89
 
Join Date: Apr 2017
Location: Abu Dhabi, United Arab Emirates

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Just Introducing Myself

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
04-14-2017, 11:34 AM   #2
ronroush7
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Welcome, Lindsay, to the forum. I'm sorry for all that you have gone through. You will find everyone here very supportive. I hope that if your doctor decides on Mtx that it is helpful and that you are able to get into remission soon. Feel free to come here whenever you want.
04-14-2017, 12:51 PM   #3
Scipio
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Location: San Diego

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Hi Lindsay. It sounds like you are doing all the right things. The one thing I do wonder is whether you should think about in addition to the slower prednisone taper is boosting the dose of Remicade and possible addition of methotrexate. Is the doc monitoring your Remicade blood levels?

If Remicade fails a again it may be time to think about switching to a different biologic.
04-14-2017, 01:57 PM   #4
Linds89
 
Join Date: Apr 2017
Location: Abu Dhabi, United Arab Emirates

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Scipio,

All good points that I am going to bring up at my next appointment. If she agrees that my symptoms were more like pred withdrawal than Remi-failure, she might want to keep the dose the same for at least the next one to see if I have symptoms return before the next dose-- so many variables came into play with this last one that I'm sure she would rather be a little conservative before switching me up. I AM going to ask about 6wk vs 8wk dose delay. I think I would prefer the 6wk although I have to take a day off work every time I need a dose (grrr) but I'm ust so afraid of symptoms returning before my next dose. If she pushes for 8wks, I think she would be open to moving up to 6 if I started having symptoms around 5wks or so. I just hate that this is all guess-and-check.

My mother has severe RA and she keeps reminding me that the first few years of a chronic illness are the hardest while you learn to listen to your body, advocate for yourself, and figure out what works and what doesn't. She's been on Humira and MTX for probably 10+ years successfully but before that she had tried all the available meds on the market at the time. Shes been a wonderful resource as well and has made meds like biologics and MTX that are TERRIFYING on paper seem not-so-scary.

Anyway, back to me, I'm not sure if they have the Remi level tests available here (UAE), and they likely aren't covered by insurance so I'll have to ask and see what is available/cost. Fortunately just about everything else is covered here 100% (tests, lab work, dr appts, meds, etc) so I'm willing to put some money into the test if it seems necessary.

If the Remicade ends up failing, she has already told me she would start me on Humira as the next biologic but I'm really hoping for the Remicade to be successful for at least a while so that I can prolong my other available options. I'm learning very quickly that what I want and what my body actually does are two different things.

Thank you for the warm welcome and the questions. I need to start writing them down so I don't forget them during my appts. I always tend to walk out and realize an hour later that I forgot to ask some of my questions. Thank god my doctor is very accessible.
04-14-2017, 08:38 PM   #5
cmack
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Location: British Columbia

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Welcome!
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