Hi! My daughter - who is 17 - has had UC since 8th grade (she is a junior now). She is going in for a total colectomy / J Pouch creation surgery on May 7th at CCMC in Hartford.
I need advice on how to help her through this.
She has never been able to be off meds since this began. The only thing that has worked is Remicade - we have tried everything they offered us. She has been on Remicade for almost 2 years. Before Remicade she was a mess - Pain, bleeding - steroid (prednisone), all other meds and diets (I feel like we have tried them all!) did nothing to help. While on Remicade, she would often be well for up to 6 weeks then back to pain and bleeding at least the last 2 weeks before they would do the infusion. We came to the decision to get surgery because of a few reasons ... we have noticed a drop in its effectiveness (she feels good maybe 4 weeks then starts having bad symptoms again), and we will be uninsured in a year and a half - which will spell disaster for her medical care if we don't get something for permanent done now - and our income is too limited to afford medical care otherwise.
She gets really depressed when she is in pain. She doesn't want to be around anyone but her family (me - I am her Mom, her Dad, and her older brother - we have 2 adult daughters but they live in Texas). Her last Remicade infusion was mid Feb. She feels pretty horrible right now. I am worried about her mental health. From reading the forum it looks like the time period between surgeries can be pretty rocky - especially for teens. Any advice out there on how to handle this? She really does not want to get on any forums, or talk to counselors, or talk to anyone outside her immediate family. We tried counseling... and it did not work -she wouldn't talk to them. Her friends want to come visit her while she is in the hospital ... she told them "NO" - that she didn't want anyone to see her like that. I feel like she is pushing everyone, but us, away. Is this normal? How can I help her?

Welcome to the site!

I think what she is going through is absolutely normal. That doesn't make it one bit easier for any of you to deal with though. Normally, I would suggest an antidepressant but with the reports that antidepressants can sometimes cause negative effects on younger people, I don't know if an antidepressant would be right for your daughter.

You should copy and paste this post into the General Discussion or Help? Need Advice Now! forum because many more people will see it there which means you'll get much more advice. (A lot of members just look through a couple of forums and often don't get 'down' this far.)

There are some younger members here so they may also be able to help her with what she is going through. It's really helpful to talk with someone who really, REALLY understands. One other thing, this is often even tougher on family members, so remember to take care of yourselves too.

kathy

Hi...I happen to agree with Kathy. If your daughter could pm (private message) Chelsea Wrz, Ashkloff, who are some of the young people on here, who are going thru...or have gone thru the same thing, I believe it would help her. I work in a high school and have 2 students who are on Remicade treatments. Once they knew I had had UC and surgery, they have opened up and expressed feelings I was unaware of. It helps when you know the person you are talking with shares a common ground. Another encouragement for her is she is totally anonymous in this setting. Please encourage her to do so! Also, we are here to support you as a parent. Continue to come here for that.

thank you all - I will post over there as well. She does have one person at her school she confides to. The secretary in the counseling office at her high school has UC and has an ostomy. She really has taken my daughter under her wing. It still really concerns me that she is pushing her friends away.

Hi CTmom,
I'm a mom of a jpouch daughter...she was 19 when she got sick, but sounds very much like your daughter. She didn't want to go to the forums, or counselor, but just confided in a very few close friends. I'd try to encourage her friends to keep in close contact with her through the whole process. It's important that she doesn't feel abandoned by them inspite of her illness. A laptop while in the hospital for us was a Godsend for keeping in touch, especially when she didn't want to have visitors in the hospital, but could still feel connected to her social scene through myspace or facebook.

The time with the ostomy was the roughest for my daughter so, I'd make sure you have a good ET nurse lined up before you leave the hospital. Her body image will be severely altered and if you can get the best fitting appliance as quickly as possible, it will make for an easier adjustment. Stock up on books, movies, etc. and just encourage her to give her body time to heal. She certainly sounds like she's been through some rough times.

But, the day when we got home from the hospital after her takedown, she hopped in the car and went out visiting friends. It was a very happy day after all of the struggle and the rocky times we went through.

Also, just something to think about...I don't know what your situation is, but I'd try to find some way of getting insurance for her medical needs. Just because she'll have had the surgery is no guarantee that she'll suddenly be perfect. Some people still continue to have rough patches and need medical care.

Hang in there, I know it's stressful and a helpless feeling watching her as she struggles. You've come to the right place for support! If you ever want to talk, feel free to send a private message to me...be happy to help in any way I can.
Take care!

Again, Thank you to everyone who has been so supportive -via here or by pming. Megan & Mark's photos were real informative. I plan on watching the video today.

Hey ctmom,

Just a quick note about your daughter and her friends. I personally wouldn't worry too much about her pushing her friends away right now. You know how cruel kids can be and how quick kids are to be judgmental. Dealing with issues like we deal with takes an understanding person under the best of conditions, and most kids have little frame of reference to be understanding about things like bathroom issues. I'm sure your daughter feels that seeing her friends will bring questions that she doesn't want to answer, so right now she'd rather not have to explain anything as embarrassing as her plumbing issues.

I think if it was me, I'd encourage her to read some of the experiences of people like Chelsea and to spend time with family, and then I'd probably just explain to her friends that they need to be understanding and give her some space until she works it out. Her friends can write her letters of encouragement or send her emails to show they are thinking of her without putting your daughter in the stressful position of feeling like she's being judged by her peers for something she has no control over.

Anyway, my $.02, and best wishes to you.

Hi Ct Mom - I, too, am a CT mom. My son is 18 and due for ileostomy and J-pouch surgery on May 9th at Yale. It is all very emotional. My suggestion for insurance is Gov Rell has put forth the Charter Oak Insurance plan - if it passes it should be ready for families and individuals who cannot get other insurance by July 1, 2008 (say a huge prayer).They will even accept people with Pre-Existing conditions. Also some 18 & 19 yr olds can qualify for the Husky Plan through social services - worth checking out. Will be thinking of you in Hartford while we are in New Haven. Best wishes to your daughter. Please post how she is and how she does. I'd offer my son to email or chat but I don't think either one would go for it. Again, my thoughts are with you!

I feel for you. While my children are toddlers, I had the occasion to look after my 16 year old niece for over three months this year. That was interesting.

When I had my surgery, the colo-rectal ward had a mentor program. Before and after surgery my surgeon sent around someone (sometimes more than one person) who had had a similiar procedure. My mentor was great, mostly because we shared a healthy sense of humour. You may wish to see if your hospital has a similiar program.

Since then I have mentored a few people myself. Humour is the best policy! My surgery was very rocky - hospitalized for close to 4 months with 3 and a 1/2 of those months completely unable to eat food or drink liquids (I was fed through TPM - an artery going to my heart). I used to physically tape food to my nose (chips, carrots, etc), throw on a doctor's jacket complete with name tag and go around visiting elderly people, and enjoy the painkillers to the fullest. If you are going to be in a '****ty' situation (excuse the pun), do your best to have some fun with it. And sometimes, all it takes is a few quick conversations with people who are in worse shape than yourself to revive your perspective.

On another note, I could not have survived those four months without the Internet and my ipod. I can understand that your daughter may not want her friends around to see her in person but she will want to send and receive email! no matter what she may say now.

Lastly, lots of movies but make sure that they are 'warm and fuzzy' types. For example, I liked stuff like Polyanna when I was sick. We are talking about high levels of sacharine videos here.

Best of luck. Should you get in a jam, I am happy to email your daughter after her surgery.

alana

ctmom-
I am 21 and would be glad to talk to your daughter as well. I was diagnosed with UC when I was 9 I had my last j-pouch surgery at 13. If I could be of any help please feel free to message me!

Hi CTMom -

I am also a CT Mom - we live in Milford.., I used to come to this site all the time but as the years went by and Nick's health improved I found myself coming here less and less - this mornign I happened to check in and found your post.., based on your post your daughter had her surgery yesterday. I hope everything went okay - my son is 15 and had the j-pouch surgery at Yale apx. 9 years ago when he was 5 - he started out with just bloody diahrea and within 2 weeks of being diagnosed with severe UC he had to have his colon removed - 2 surgeries later he was on the road to recovery. It has not been easy but he is now doing pretty good - he has great control during the day but still wears a pad at night because sometimes he leaks. He leads a pretty normal life - he takes 3 Loperamides at night and for the most part eats what he wants.., he plays sports for his High School and is overall doing great. Give your daughter time - this is an embarrasing surgery - I found it hard to talk about with adults so I can only imagine how hard it would be for her to talk about it with her friends..., as though it's not hard enough being a teenager then to have to go through this..., I know it's hard on you too - just be strong and be there for her.., please feel free to e-mail me at toto1@optonline.net if you would like to talk..,

Brenda