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30 years of Crohn's with my dad- AWFUL

Hi All,

My dad turns 70 next month. He has had severe Crohn's since he was 30 years old. I remember being a child of 10-12 years old with ambulances being called for bleed outs etc. What a horrible disease to deal with. I feel for you all. Dad quit drinking alcohol all together in 1997, which we thought would help everything. From the time period of his growing up, he wanted a pill to help cure his ailments... still to this day, he wants the magic pill to cure him. After many surgeris, and even 5 years ago, had the illiostomy, he still is miserable with pain, addiction to pain medications (from his own Dr's over medicating him), smoking cigaretts, and not eating or exercising. After 40 years of taking prednisone and not taking care of himself, my mom finally had to put him into assisted living 1.5 years ago and 68 years old. His legs are as big around as my arms. He is so feeble and care barely walk, even with a walker. The doctors overprescribed him pain medication and steriods for 30 years. He has been taking over 20 mg of predinose for years, which has pretty much killed his body. He has been in assisted living for over year, with only 1-2 or nurses in the entire town that could help with his bag changing and stoma infections. After a 1.5 years in assisted living, his health has further declined, and his "phantom" pains have severely increased. He has been to the hospital more than I count in just 3 months, once stay over a month long. He begs for pain medications, has multiple xrays, Ct scans, bloodwork (3 already in the last 2 weeks), with nothing showing up. I will say in the past he has kidney related infections from lack of not drinking enough fluids, and just recently 2 pancreas flare ups. My mom and our family is at our wits end with this. He is always in pain, suffering, crying, no quality of life, and there is nothing we can do. After years of fighting with the Dr's for overmedicating, now it's too late. The years of pain meds, and steroids have destroyed his body. Do keep in mind if you do have this disease, PLEASE EXERCISE, don't smoke, and eat healthy. My dad hasn't EVER. He is in the hospital again.. not even 70 years old. It's so sad to see him suffering in pain, and then after all these hospital trips, NOTHING is showing up. It makes us question him.. although we do feel sorry for him, and want to believe him, but when the Drs dont find anthing, we resent him (after YEARS of Dr's finding nothing). We don't want else to do as a family. My sisters and i don't live here in the same town so we are always driving 4 hours back and forth. I get tired from 3 days here, I can cant imagine my poor mother who has deal with him day to day. We want the lord to help him relive his pain, and take away his suffering, but he continues to live on.. in a diaper, having people dress him, people caring for him that barely know how to change his bag. I guess it's time for the actualy nursing home, which will cost $7000 per month compared to assisted living of $3000 per month. (They aren't able to help with his bag legally).

His stoma is also infected so bad it's bleeding with yeast, which the doctors can't seem to control. His own doctors don't even want to see him anymore lcoally, but the family can't transport him without a wound care nurse in case his bag bursts etc in the car. We just don't know what do anymore. He is so sad and pitful. My dad was a powerful man at one time in his life. Now he's diapers, can barely dress himself, and crying in pain all the time. He calls EMS himself ALL THE TIME. I understand some of it is mental as well.
What can we do? I wish now they would just over medicate him so he can go to hospice. He will never bounce back from this. He is so mentally sick from the "pain" and so self absorbed. The pain and suffering is all he can talk and think about. What can we do as a family to help him. It's heartbreaking.. and so hard on my mother even with him in assisted living.. she still can't handle him. God bless her for her patience for his addiction. :sign0085::sign0085: We are just so used to dealing with hospital stays, I feel like we aren't asking the right questions. He is too sick for us to personally transport him.

Any body out there been through this? It would be much easier if we could turn off the life support or remove the feeding tube. His mind on some days is really good, but his body is just DONE.
 
Location
,
Welcome gbm

I'm so sorry your dads suffering...:hug::hug::hug:
I don't have no advice ...just wanted to tell you your story really touched my heart.

Take care.....:hug:
 

SarahBear

Moderator
Location
Charleston,
gmb, I'm so sorry to hear about what you're going through with your dad. That sounds like a terrible thing to deal with.

I'm afraid I don't have any advice for you. I don't know how to help. Someone around here may have more information, so don't be discouraged. You might want to look around on your own some and see if you can turn anything up.

Wishing you the best!
 
I'm so sorry gbm, I can't even imagine what you and your family are going through I hope you all can find some peace soon.
 

afidz

Super Moderator
Hello and welcome
I can imagine how hard it is for you to deal with your father. Stay strong. There is a reason for everything in life even if you don't directly see what that reason is. I hope your father finds peace soon, it sounds like he is really suffering. Have the doctors considered fiybromilagia? (i don't know how to spell it) that might explain his phantom pains. I don't know what advice to give except be there for him as much you can, I know its tough.
 
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