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Please read--hello my name is frank i am from the seattle, wa area

hello forum,
My 38 year old sister (Carol) just passed away in her sleep on 12-21-2013 it was unexpected and out of the blue.
Carol was diagnosed with Crohn's disease when she was around 20 years old. The doctors gave her prednisone and it did not work so they had to remove her lower intestine and she got a colostomy bag. When she came home from the doctor after the sugery i took care of her. She had a big cut on her stomach attatched with staples.
She looked ok for the first day but she started to look really pale and feel cold so i took her to the ER and they found out that the stitching they did to her intestine failed because her tissue was too soft from the prednisone. So they had to remove all her organs and cleaned her toxin filled cavity out. She would have died at 21 years old if it wasnt for me.
My sister Carol talked alot all the time and i dont really talk that much so i distanced myself from her, but i always answered her calls and listened to what she had to say, and helped her when I could and she always helped me when I asked. I just didnt visit her that much.
During the holidays her and her daughter would always stay over at our house for about a week. Carol would always get on my nerves, because of her hoarding habits and the fact that the doctors always gave her tons of pain pills for the pain and she would just sleep all the time and drink lots of 2 liter bottles of Pepsi because the pain meds had her craving sugar all the time.
I finally confronted her about her about taking too much pain meds and what effect it was having on her daughter. She listened to me and started changing.
She started to fix herself and was doing alot better (even though she talked alot).
Fast forward to this past year. My sister Carol lived in public housing (for the past 15 years or so) and was on SSI and so was her daughter who was diagnosed with Autism Carol could not have a job because of her illness.
Since about 2-2013 she was getting worse her immune system wasn't working right. For the past 15 years or so Carol would always have to go to the ER because her colostomy bag got clogged and would back up or her joints were swollen ect.., so I just thought her doctor visits were normal, but these visits since 2-2013 were for dizzyness and headaches and falling over and blacking out.
The doctor visits increased 10x fold the past 2-3 months she was in the ER at least once a week. Once again i was concerned for her and her daughter but i thought it was the normal behavior for her to go to the doctor all the time. I thought they would find out whats wrong and fix it (like normal)
I offered help to watch over her daughter but my mom said she could help her so i didnt need to.
Well, now I know the increase in headaches, blacking out and dizzy spells were her last days here, she passed away in her sleep and her 18 year old daughter found her in the fetal position on her bedroom floor on 12-21-13. and were are still waiting for the cause of death from the coroner.
The last time i spoke with Carol was on the phone about a week ago and she was sad and crying because she thought my mom took money from her daughter's bank account. I was telling her no, mom would never do that, so please give it some time and maybe something else happened. it turned out she forgot they used the money on something else.
That was the last thing she said to me, I know now I should have said I LOVE YOU CAROL.
Carol loved coming over for the holidays and this year she stayed home because she was too sick and i gave my mom a take home plate of food to give to her because i know she loved coming over for the holidays, i hope she liked the food.
Now I am helping her 18 year old daughter and my mom and my other sister go threw her personal items, and Carol was a hoarder so its taking some time.
I am crying now about my sister, I wish so much happened differently, I wish all the doctors would have seen this coming but they either didnt see it or Carol didnt say anything to me.
Thats my story, there is so much more about Carol, its just too much good to say about her, I would be here forever
thanks for reading
 

afidz

Super Moderator
I am very sorry to read what happened to Carol. I hope this coming weeks (months, years) you find comfort in knowing she is not in pain anymore. If you need someone to talk to feel free to private message me.
 
thanks, i just miss her so much and being during the holidays it sucks even more, her body just wore out from the stress of this disease. I just wish she could have been here for christmas, she always loved the holidays being around everyone, even though she was in poverty and had nothing she loved being with us
 
There are no words for your great loss. Just know she is at peace and no longer in pain. I am so sorry, time will heal, and please feel free to talk to us about Carol anytime! She sounded like a very loving sister, I go to my Brothers for Christmas eve every year, I know he loves me, just like Carol knew you loved her<3. You and your family will be in my prayers.
Michele
 
What a heartbreaking story. I am so very sorry for your loss :( I know these things are especially hard during the holidays. She is finally at peace now <3
 
thanks for everything, this forum has helped.
i have spent the last 2 days with my other sister and mom and Carol's daughter, clearing out her apartment. the housing supervisors (for her apartment complex) came over and asked what we were doing? and could they speak with carol about helping her get to her neurology appointment next week? because of all her seizures (apparently nobody told them about carol passing away) so i had to tell them.
I saw the shock on their faces that I had when i found out she had passed away. After that set in with them, I asked them to please help her daughter with all of the SEC 8 housing paperwork that they could.
They love carol and her daughter too, they were trying to help Carol figure out what was going on (medically). The housing authority is going to help her daughter with everything (paperwork wise) that they can. which is good.
This disease is horrible, my mom has it too, but luckily it was controlled with surgery (sort of) she still has to use the bathroom alot, but no meds or anything like that.
When going threw my sisters things she has a whole lot of unused colostomy bags and that stuff, and i know we cant donate that to goodwill, and i didnt want to throw it away if because it still can be used.
does anybody know what to do with it? i dont want to waste it, its really pricey stuff.

Anyway, thanks for being here it really helps, grieving is very difficult, I am the oldest sibling and this death has shaken me.
thanks
 

Honey

Moderator
Staff member
Hi there,
Do not have any regrets, you have been a loving brother who has been there for your sister and the rest of family when you could. Crohn's is such a fickle illness and the goalposts keep moving. Your sister suffered a. lot, and you with her. I am So sorry for your loss.It will take time to come to terms with it, but you will heal. One day at a time. You are in my thoughts and prayers.
 

Trysha

Moderator
Staff member
So sad for your loss.
You have been a very caring brother and did what was needed during your sister's difficult life
.Crohn's is so unpredictable and can be soul destroying if we let it.
It takes the support of our family and friends to help us through life.
You are to be commended for your loving actions and help when your sister most needed it.
She has gone to a better place with no more suffering.
It will take time for you to level out, just take it one day at a time.
Prayers and best wishes----feel better soon
Trysha
 
its been about a week since my sister passed away and it was difficult but i have been processing all the emotions and i am now alot more stable. You guys have been wonderful in helping me threw my bad days. I thank you
 
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