Sister just had surgery

[BestSisteronEarth]

Hi all first I would love to say that this forum is awesome. thank you to all of you who post your experiences. My sister has had Crohn's disease since she was seven she is 24 now. She's been in the hospital for a dreary 15 months. After months of surgery dates and then backing out it finally came to a head When they weaned her off all of her pain medication. The doctor said the pain medication made everything worse causing her intestines to just stop working. She was also diagnosed with a fungal infection a few weeks before the surgery Two days ago she had the surgery. She is in the SICU. I just feel terrible for her. At one point she said she'd rather die than have the surgery. Because of this disease she's been suicidal in the past. I obviously know that this surgery will make her have a better life a better quality of life. My parents know that she will have a better quality of life. But she does not believe that .... she thinks she will never find a man, she thinks everybody will fun of her that it will smell and that it will make loud noises. You see she had the bag when she was 14. Everyone in high school made fun of her. She told her best friend and everyone found out. It was reversed a year later And she thought that she would never have to go through with it again. It's such a scary thing to see your sister in a hospital bed powerless. Because of the NG tube and during surgery they had to intabate her she cannot talk. I just can imagine what she's feeling right now. It's always been the two of us and me I was always healthy I had a fairly decent life I played soccer I had friends went to college... Because of Crohn's disease she could not do any of this. I'm hoping this surgery will benefit her In fact physically I know it will. There's a whole other side to this thing but no one really talks about and that's the emotional mental and spiritual side. I feel my sister is lost in that area. If any of you have any recommendations or suggestions Please write back or contact me. I thought it might be a good idea if she met someone who has had the bag and is her age and lives on. I respect all of you so much And through everything I read I've learned that the surgery can work miracles!

 

[DJW]

Oh my gosh that is rough. So sorry she's not doing well. I'm so glad you're
there for her. Having had such a bad first experience I can see why
She is feeling the way she is. I've had those same struggles (meeting someone and being accepted by them. There are lots of people with ileo's who are married.
Check out the mental health subforum. I pray things get better.

 

[CheerBear12]

So sorry she's had to go through this again it will change her life for the better once she has recovered. How low can some people go making fun of her when they should be happy that she's alive. Is it permanent this time? Keep us posted and hope she has a speedy recovery

 

[Samboi]

Hey Best Sister
Having your support will really help her.
You're absolutely right - doctors etc never talk about the emotional and spiritual side of surgery outcomes. I know for me personally, I really struggle mentally and emotionally. I am ok now - but that's also because my reversal is imminent.

I hope that your sister will be ok - and your support and understanding will be a huge help. We often go through these experiences alone. Having you by her side can only help her.
I hope she'll be ok. And what you're doing is great. Good on you.

 

[BestSisteronEarth]

Thank you all. I get teary just reading your responses. They told her it is irreversible although they did not (according to surgeon) "sew up her butt" bc during surgery they did not want to turn her over bc she had such a long surgery. So hopefully with time and new technology it could be. I'm on my way to visit her now. My parents are also very supportive. One of them has stayed the night with her every night since she got the surgery. I am so thankful for that. I know its a long road to recovery but Do you have any ideas or experiences with joining groups with ppl that have illiostomy or how she could go about meeting people that do? Having an ostomy nurse is great but I think being able to identify with people who have it will help her so much!

 

[CheerBear12]

When the op is an emergency they never remove the rectum and anus. Same happened to me mine was an emergency(life saving) my bowel could of burst at anytime which would of killed me. I've just had mine made permanent nearly 8 weeks ago. Thinking of your sister and hoping she has a speedy recovery. Have they took her off the intabate thing yet? So glad they take turns in staying with her. Sorry can't help you with meeting people with ileostomy's. This is a great place to be we support each other through everything and are like family.

 

[BestSisteronEarth]

Hi yes she was taken off the intabater Saturday morning. Surgery was Thursday. Still has ng tube. How are you doing? How long were you in the hospital after surgery? I admire you. If you don't mind me asking how old are you?

 

[BestSisteronEarth]

She doesn't really talk. Which I find weird bc she ALWAYS has something to say! .

 

[CheerBear12]

I'm doing ok thanks going bk to work tomoz(12-3) and I was in hospital for 5 days but should of been in longer but I think they wanted my bed! Been off sick 2 months and I'm so glad they took her off the tube thing. Thanks for that means a lot and I'm 22. How's she doing?

 

[CheerBear12]

Aw hopefully she'll start talking soon hope she gets well soon

 

[BestSisteronEarth]

Thanks. I guess it's hard to talk with the NG tube? Did you have one? They said shed be here 2 weeks after surgery. They started Tpn today.

 

[CheerBear12]

No I never had one sorry I can't help you there. Hoping the tpn works wonders for her. She'll be very glad of all the support your all giving her. It's hard coming to terms with this physically, mentally and emotionally. Hoping she is fighting fit soon

 

[BestSisteronEarth]

Thanks. Yes she's had the Tpn for a while now. A while before surgery too. Had so much of it gave her 3 fungul infections

 

[CheerBear12]

That's not good but hoping its doing its job not quite sure what it does haven't been on it. I was on strong steroids through iv, pentasa, buscopan and 1 infliximab before emergency op to remove bowel in 2011 was in hospital 6 weeks.

 

[BestSisteronEarth]

Oh wow. I think it sucks air out. It probably does other things but that's what my dad told me. What hospital did you have it at?

 

[CheerBear12]

Is she gonna be on it for life? I had it at James Cook not far from me if weren't for surgeons I wouldn't be here now. Can't thank them enough forever grateful

 

[PsychoJane]

Hi Best sister,
It is a chance for your sister to have you that tries to get the best for her. You have no idea how much effect your implication can have to your sister. As the small and sick sister, I know that the efforts and consideration of my healthy big brother have always mean much to me...

I understand that your sister is most likely stuck with a "traumatic" view of the ileo she had when she was a teenage. I can see how hard it has been. I had my ileostomy at the age of 14 and it is not until 16 that I did consider telling it to friends (female). Back in the days, the appliance I had were not the best, I would sometimes have problem with odor. People did not know it was me but I did know it was me at times and truely, this was not a pleasant feeling. My first attempt at telling this to guys was pretty much a fail. It was a internet acquaintance and it was easy for him to have the reaction he had: stop talking to me and never got back to me ever after. The point is, we were both 14-15. Young and stupid. I don't think highly of the notion of respect when it comes to teenage. I've always seen these years has years of hatred and law of the strongest. Everyone fights for its place and try to figure their personality... It is really not the best time to have that happening to you. Fortunately, through the hardships, I have learn to distinguish the shallow from the rest and as I gain in age (I'm 28 now) well people understand and tolerate much more. At her age, the competitive state is not as great as it was when she was younger. People accepts and recognized the personality over a lot of strictly physical consideration. I've rarely been single and my relationship were not ended because of this either. Anyway, I could come up with plenty of other things here but the point is that, if ever she wants to msg me or skype or what not. I'd be more than happy if that can help her feel more confident about the fact that it is possible that this surgery will allow her to gain a quality of life and feel much better on the over all!

 

[CheerBear12]

How's she doing today?

 

[BestSisteronEarth]

Thank you psychojane. You are so right. I am 29 and been through a lot in my life and I wish I could just give her all my wisdom but I can't. She must learn for herself. Today she is doing better! NG tube is out and she sitting up talking she even let us wash her hair. Jane when she starts getting better we would love to Skype with you.

This was us 2 years ago.


Her today

 

[BestSisteronEarth]

Making Progress thankful for people like all of you!

 

[CheerBear12]

Glad she is talking and the tube is out. Thinking of you all here for you all hopefully she'll get a bit better each day. Hope she gets well soon

 

[Dragonfly72]

Sending hugs and prayers, I have not had Surg, I was just diagnosed in March of this year and we are still fighting the flare! I will keep you all in my prayers and thoughts! Xxoo
Michele

 

[Ginger is her name]

Hi Best Sister!
First, you sound like an amazing sister!! She definitely appreciates your support. The more positive support she can get, the better.

I got my stoma in February. She is temporary for me, but I can tell you it wasn't easy...I couldn't look at myself below my chest for about 2 months, I felt ugly...I thought it was the worst thing that could ever have happened to me...with the support of a fabulous husband, the best ostomy nurse and my friends, I began dealing with her.

I looked just like your sister after my surgery...I know have a full face again! She will be amazed with how much better she feels...although its difficult, the people that love and care about her don't care and those who do aren't meant to be a part of her life!

Prayers for all of you!!

 

[BestSisteronEarth]

Thank you Ginger! You're so right about that. I'm glad to hear some hope. I think that's what she needs right now is hope. I wish you the very best my friend!

 

[Ginger is her name]

Thanks Best sister! My advice is take it one day at a time...everyone handles it differently and at their own pace