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In a flare and struggling...


Tue, October 09, 2018 9:53 PM

I was diagnosed with UC in 1999 shortly after the birth of my son. Since then, I have had periods of both flare and remission, and have been on just about every medication out there.
I have found success with Lialda (4.8 g daily) and pain medication as needed. I also have Enteropathic Arthritis.
Since I can remember I have struggled with my weight, and this latest flare began three weeks ago following a 30lb weight loss.  This is not the first time that a flare has coincided with a weight loss program.
I also have been taking anti-depressants since 2001, and was diagnosed with generalized anxiety disorder and Bipolar 1. For these I take 50 mg Prestiq and 200 mg Lamotrigine daily and Alprazolam as needed.
Despite my health issues, I typically enjoy a busy and active lifestyle. My job as a Head of School of a small private school is demanding, but fulfilling.
My recent flare and subsequent painful symptoms have sent me into a tailspin.
I have withdrawn from my personal relationships, and have difficulty keeping up with my regular schedule. I am exhausted all the time, but cannot sleep due to pain and constant bathroom trips.
Each time I flare, I tend to go through a period similar to mourning, where I must again come to terms with my disease.
This time is different. I am experiencing despair and cannot seem to pull myself out of it. The worst part is the guilt I feel for being so miserable to my family, significant other and colleagues.
I have an upcoming appointment with my dr and we plan to begin Entyvio, but I dread the possibility of prednisone.
I would appreciate input from those who may have similar experiences. Even the most well-meaning of friends and family do not truly understand.
Thank you in advance,
Lori



FPO tennyson
Joined Oct 8, 2018

Fri, April 05, 2019 1:07 AM

Reply posted for tennyson.

Hi, Lori. 
I’m new to the site but I’m kind of glad your post was the first one I saw. I’m 18 and was diagnosed with UC last summer, and bipolar 2 / generalized anxiety in 2013. I’m having serious problems with the whole coming to terms with it too. I though I’d finally come to terms with one demon only to be met with another. And now it just feels like it’s ruining my life. 
I finally found a happy balance of medications for my mental illness...and then this happened. I just started on humira and I’m hoping it starts to work soon because every dose of steroids sends my flying into another manic episode and I don’t know what to do. I feel like not only is my brain fighting me, but now my body is too. 
I’m sorry I don’t have any advice to give, I could actually use some myself. But if nothing else, I understand. All of it. And it really really sucks. Hoping you’re hanging in there,
Maggie 

FPO Magsmarie
Joined Apr 5, 2019

Thu, December 13, 2018 7:36 PM

Reply posted for tennyson.

Hey Lori Sending you so much love! You are definitely not alone, and I feel you so much in what you expressed. I was diagnosed in 2011, and it has been an up and down journey to say the least. I struggle too with the chronic pain and maintain my lifestyle. I feel like I gave everything up and now I have even more work to do to regain my sense of self. However I say this to help you, not to discourage you. You seem to be nearly at the beginning of doing just that, but yiu've got to retain your resolve. Do you have any real clue how incredible you are? Going through the trauma of Crohn's or Colitis is horrendous, and indescribable... Unless you watch that one scene in Alien 😵 Im just trying to remind you that you rock it so hard and much more than your pain ridden mind will allow you to remember or see. Im here as a fellow "crohnie" / "spoonie" with all the love for ya! Jocelyn

FPO Jeyegoddess
Joined Dec 13, 2018

Wed, October 31, 2018 4:17 PM

Reply posted for bholder.

I also had colitis and had j pouch surgery fifteen years ago and then what was originally diagnosed as pouchitis turned out to be Crohn’s.  Crohn’s sucks, but the colitis, for me was much worse.  I think perhaps because I don’t have a colon to get inflamed.  I’ve been on Remicade and now entyvio and neither one has helped..  I get tired of the perpetual diarrhea and being tired all the time, but it’s manageable.

FPO charbs
Joined Oct 31, 2016

Wed, October 31, 2018 4:00 PM

Reply posted for bholder.

I also had colitis and had j pouch surgery fifteen years ago and then what was originally diagnosed as pouchitis turned out to be Crohn’s.  Crohn’s sucks, but the colitis, for me was much worse.  I think perhaps because I don’t have a colon to get inflamed.  I’ve been on Remicade and now entyvio and neither one has helped..  I get tired of the perpetual diarrhea and being tired all the time, but it’s manageable.

FPO charbs
Joined Oct 31, 2016

Wed, October 31, 2018 9:49 AM

Reply posted for tennyson.

Hi Lori, 

It breaks my heart to read your post bc I can relate so much and know what you're going through. I had UC which lead to a Jpouch nine hard years later, another 6 years of ups and downs, and a recent diagnosis with Crohn's. Currently in a bad flare and started the biologic Stelara last week. A day later I drove myself to the hospital and was admitted for 3 days. In horrible pain still, tailspin... life is crumbling. My mother is staying with me bc my boyfriend broke up with me less than 24 hrs after my last hospital stay 2 months ago. No one truly understands :( I feel for you...and I'm here. I'm also active and all I want to be doing right now is hiking, and enjoying the outdoors. I had a really sweet nurse this week that kept telling me to envision what it will be like to feel good again. See yourself doing the things you love to do. I'm leaning hard into music, meditation, and yoga....doing what I can and what my body allows. My sister who is also a Jpoucher and has a daughter with Crohns, advised that i am easier on myself. Grace. Hang in there Lori.

FPO bholder
Joined Oct 30, 2018

Thu, October 11, 2018 10:25 PM

Reply posted for tennyson.

Hi Lori. I'm so sorry to hear about what you're going through. I, too, am going through a nasty flare, leading me to be anemic for most of this year, not to mention a little malnourished at times. Like you, I become less present to friends and family as communication can be difficult. Hopefully I can offer help by reminding you that you're not alone in this struggle and that, in one way or another, this too will pass. The road to remission is a marathon, which sounds more exhausting than it does true. But I suppose I'm trying to say that it has more a committment than a sprint. That's why we (the IBD community) experience so many hurdles; whether it be with medications, remission then sickness then remission (the mourning you spoke of), or anything else. And yet, we're a community. It provides us with a means to connect (patient to patient) as well as our loved ones to better understand what we're going through by reading our posts.

Bottom line, I've tried different diets and my body seems unhappy with most of them. The one thing that is guaranteed to be helpful is a sense of community and connection. Maybe we can't get someone else to fully understand what we're experiencing but if they're willing to be our rock and support system, let them. For me, the surprise of a warm embrace when I need it most does more than words ever could.

Hope you feel better and good luck with everything.

FPO mikekj44
Joined Feb 14, 2016

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