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Support spouse with Crohn's but also maintain my sanity


Sun, February 03, 2019 1:31 PM

Hello from a first time poster:My partner of 9 years was diagnosed with Crohns about a year into our relationship. Hes gone through several flares since and periods of mellow (not sure Id call it full-on remission) in between. Its been tough but weve persevered and have a normal, mainly happy relationship. However, this latest flare has been extra difficult. A few months ago, he switched meds and got extremely ill, so he and his doctor decided to go back to the previous treatment and do a high dose round of prednisone to carry him through. Ive never experienced him so agitated, quick to anger, and, frankly, mean before. While logically I know this is the prednisones fault, Im having a really hard time adjusting my expectations of him right now, letting the digs roll off my back, be supportive and sympathetic, etc. He says he wants me around but every little thing I do seems to anger him and in rage bursts hell say things like, "this would be easier to deal with if I was alone." Im finding myself trying to avoid home for fear of getting into an unnecessary fight over something he says that hurts my feelings. But thats not a good way to live. Ive got to believe this is temporary while the prednisone tapers off but I also know there will be flares in the future and the whole cycle will repeat itself. Any other caregivers out there have tips on dealing with the psychological effects of this terrible disease and how they affect a spousal relationship? I could really use some advice!

FPO Lsquared
Joined Feb 3, 2019

Mon, May 08, 2023 2:48 PM

Reply posted for mariahcarey.

Well, discussing games on a forum that pertains to sickness is not appropriate. While games can certainly improve our mood, it is important to be mindful and spread positive s words about the forum's purpose and focus on relevant topics (related to Crohn's.)


FPO danialblink
Joined May 8, 2023

Tue, May 31, 2022 1:44 AM

Reply posted for mariahcarey.

This is one of those articles worth pondering over and the wordle game is also a great choice for you to entertain.

FPO mariahcarey
Joined May 31, 2022

Mon, July 29, 2019 6:02 PM

Reply posted for Lsquared.

I'm sorry to hear about your experience.  High dose of Prednisone does that to me.  I'm not sure if there is a similar med for Crohn's as I have Colitis, but because Prednisone affects my mood so much, I asked my doctor if there is something else.  He prescribed Uceris (Budesonide XR) which goes to your intentine instead of disolving in your stomach.  This kept my mood under control and my family was happier.   I'm not sure why my Dr. didn't prescribed this at the first place.  I learned over the years that sometime you need to ask Dr. what you want instead of just accepting what your Dr. prescribes.  

Hope your husband finds medication that works for him soon.  Hang in there.   

FPO Laflorette
Joined Sep 9, 2019

Mon, April 08, 2019 9:48 AM

Reply posted for Lsquared.

My partner was recently diagnosed and is currently on the long run of high dose steroids as well.  Yes, it does indeed make the him short tempered.  Factor in the list of foods he can no longer eat and he is truly a handful.  He seems better if I don't hover too much. I try to take one day a week and do something I love, in my case gardening and working outdoors.  I also consulted our family doctor and he prescribed an antidepressant for me (Zoloft) which has made a huge difference in how I react to the outbursts.  There are also many herbal supplements which will help you, I tried those first.  I got some really good advice from an older friend who told me that while I can't control him on the steroids, I can control my response to it.

FPO Pdhickey
Joined Apr 8, 2019

Fri, February 08, 2019 4:18 PM

Reply posted for Lsquared.

Hi Lsquared,
Sorry to read about the challenges you and your partner are having with the disease.    You are correct. Talking with other caregivers can be helpful and they can give you perspective on how you can manage and cope.

There are hundreds of support groups for people with Crohn’s disease and ulcerative colitis throughout the country. Each year, 38 local chapters hold more than 200 support groups, where patients and family members can connect to others living with these diseases. http://www.crohnscolitisfoundation.org/living-with-crohns-colitis/find-a-support-group/
 
Power of 2 Program
Interested in peer-to-peer support? Not finding a support group in your area? Power of 2 is a peer-to-peer support program for individuals seeking to talk by phone to other patients or caregivers with IBD.  If you need more immediate assistance with your questions, please call our IBD Help Center at 888-MY-GUT-PAIN (888-694-8872, extension 8), or email info@crohnscolitisfoundation.org.  If you are interested in signing up for the Power of 2 program, please e-mail powerof2@crohnscolitisfoundation.org or call 888-694-8872 x 8 to learn more.

Online Community

The Foundation also offers an Online Community  where you can get the support you need in managing your condition 24/7. Participate in discussion boards, personal stories, submit questions and more. The Community also offers a live online support group program where you can connect with your peers over four weekly chat sessions that are guided by various IBD topics. Learn more and register for an upcoming session!  There is also a session for caregivers

Also check out informaton on Mental & Emotional Well-Being at: http://www.crohnscolitisfoundation.org/living-with-crohns-colitis/mental-health/how-can-ibd-affect-your.html
 

FPO administrator
Joined Oct 12, 2017

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