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My sister also has Crohn’s, yet is completely unsupportive

My sister also has Crohn’s, yet is completely unsupportive

Hi,

A backstory to start things off. I was going to college, married, and had 2 children. I was maintaining a 3.5gpa. In January of 2017 (about halfway finished with college), the first signs of Crohn’s surfaced. It manifested quickly. Over the next couple of months, my symptoms made it difficult to attend my classes, so I dropped all but one online class. I ended up failing that class. In May, I had a colonoscopy and was diagnosed with Crohn’s. By then, my wife was pregnant with our 3rd child. Day after day, I watched her work from 9 to 5 (an internship to finish her degree), and then come home to take care of our girls and me. My Crohn’s left me in constant pain and with almost no energy. We talked it over and decided to move back home with my parents until I could get back on my feet. We figured my parents could help out with the girls when needed. My sister had Crohn’s as well and I could get advice/support from her. She also had an excellent GI doctor. I wish we had never moved.

Yes, my sister and I both have Crohn’s, but we are complete opposites. What works for her doesn’t work for me and vice versa. She is on a biologic and well into remission, I was on Pentasa and was still on the roller coaster of feeling just ok and feeling horrible. We both took an enzyme test. Hers was in the normal range (50-150), mine was above 1000 (which absolutely shocked my GI). Before my sister was on her biologic, she had the normal Crohn’s pain, etc. She was able to work and do other things. This has made things difficult.

She and my parents expect me to be able to do ALL the things she could do. I still have pain and 0 energy. All the Pentasa has done is make it bearable to use the bathroom. Having a job seems out of my capabilities. But they don’t care, nor do they understand. I have to live day by day because plans can change based on how well I feel.

My sister still “lives” at home and works. She is only at home for a couple hours (sometimes spending the night at her boyfriend’s) and doesn’t give a care about me while she is there. Yet, she judges me constantly like she sees everything I do and has gotten some other family members on her side. Now, I can’t do a whole lot, but I help out as much as I can with our kids and around the house. I change diapers, feed the baby, give baths, and do dishes, among other things.

I know not having a job puts more financial burden on my parents, but they have treated me horribly. If anything is left undone in the house (dishes, trash, etc.) it is ALWAYS my fault. My Crohn's keeps me up until 4-6 am. They get angry at me for this. In fact, I often get yelled at for things out of my control due to my Crohn's. On the other hand, my in-laws (30 mins away) are understanding and loving.

Thankfully, we should be moving out soon. And, I just started Humira 4 days ago. If anything, this trial has taught me to be caring and understanding to those with difficulties. If any of my children have some sort of disease or disability, I will be behind them 100% and help them out as much as I can.
 
I can't speak to your relationship with your sister, but if it works well the Humira as it kicks in should make a big difference in your disease severity and level of suffering. I don't know why the docs kept you on Pentasa for so long with disease as severe as yours. It's primarily a UC drug. For Crohn's it often works little or no better than placebo.

So hang in there and hope for the best from Humira. Or if it doesn't work very well keep pushing your doc to try some of the CD biologics until you find one that does. For most Crohn's patients there is some combination of medication, diet, and healthy living that produces a sweet spot called remission. Once you find yours you quality of life will be very much improved, so much so that you will likely be able to return to college and/or work.
 
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