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How can I handle it all?!


Thu, June 22, 2017 6:57 AM

I don't typically reach out to forums such as these, but I am looking for some honest advice from people that have similar experiences to my own. 

I am a mother, work a full time job as a special education teacher, and have ulcerative colitis. My husband also has bipolar syndrome which just adds another level of craziness to our already crazy life. But honestly, some days I just don't know how to handle it all. 

Our house is in a constant state of disarray, some days I just have to lay in bed with the heat pad while my daughter plays, my medical bills are just never ending. And I know there are people in much more dire situations, which makes me feel like I should be able to handle this, but some days just feel hopeless. 

After a 4 year medical leave from completing my masters degree, I am begrudgingly going back to complete it, as I am required to for my job. I am concerned and worried about my physical and mental health as well as the quality of life I am having and therefore imposing on my family, my daughter. 

If someone could please enlighten me as to how you handle life with a chronic active illness I would be forever greatful. 

FPO mspain
Joined Feb 4, 2016

Fri, August 25, 2017 2:04 PM

Reply posted for mspain.

Hope and prayer.

But for immediate help in your situation. Try the Intense Intestines Foundation. I saw where they give scholarships for those with IBD and help with medical debt for those with IBD. Look under the patients tab.

While the site won't help with the chaos, it hopefully may provide you some financial help which may lead to less stress.

Good luck, I feel for you!

FPO enlightenme2day
Joined Aug 25, 2017

Mon, June 26, 2017 1:30 PM

Reply posted for mspain.

I wish I had the answers... The best I can do is tell you my story (shortned) and hope it at least gives you some support. If there are any specific questions you have I can try my best to answer those too...

I graduated college in 2014. A flare started around that time but because I was going to Europe to travel my GI and I decided to try steroids for a bit and deal with it later so that I wouldn't miss the trip. Tried to taper off that summer and wound up in the hospital sicker than a dog. We knew Humira wasn't working but I was leaving for grad school. Started methotrexate on top of Humira. Nothing was better, still couldn't get off the steroids. Moved to start a MS/PhD program, took awhile to find a new GI and was in/out of the ER more times than I could count. FINALLY found someone who had ideas for how to help me and cared about me as a person in October. We applied for me to start Entyvio. Unfortunately that winter I continued to get sicker and sicker, still on steroids, pain meds and frequent ER trips. My scans showed I had fistulas and we could no longer wait for Entyvio to kick in. I had my first bowel resection in February of 2015. I had just started the second semester of my Master's. I had a lot of help, I was living with cousins and had no children. Fortunately my grad program is fully funded so although I have to work, I can be flexible on hours and location. I slept a lot that year. Developed a DVT in March, long recovery time with some more complications through the summer. My colonoscopy showed that my anastomosis was having problems so I had another surgery in November of 2015. The recovery from this one was much better. I didn't take any semesters off school, but I did take a lower class load (1 instead of 3) that spring so I could focus on getting healthy. I also didn't do much research during my 2nd semester. Grad school is tough, I missed a lot of classes due to appointments and procedures on top of just not feeling well. Have you read/heard about the spoon concept? Basically some days you have more spoons than others and every activity costs spoons. Being mindful of what to use spoons on really helped in my recovery. Some days it wasn't worth having a clean house or taking a shower, but it was worth finishing a homework assignment. Other days it wasn't worth going to a presentation, but it was worth cooking dinner. Try to simplify as much as possible. Can you hire a cleaning service to come in once a week or once a month to help with chores? Can you order groceries online? Can you work on your Masters from home? I hope things start to get better for you and you can regain control of your life.

FPO akr008
Joined Sep 2, 2014

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