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Primary Sclerosing Cholangitis (PSC) - Online Support Group

My kid is making ME crazy!

Just wondering if other parents encounter this situation and how do you handle it. My son is 25, was diagnosed with PSC in May of 2015. He has had ulcerative colitis since he was six. Was diagnosed with Aspergers at age 9. Age 23 had a complete colonectomy and two other big surgeries resulting from complications in the last 18-20 months. Having another big surgery end of January. I am watching this kid self emplode. He has gained over 60 lbs since May. I am watching him get fatter and fatter by the day. We argue over his weight and food on a daily basis. I can’t make him understand that EVERYTHING he puts in his mouth effects his health. He screamed at me today on the top of his lungs, which is not all that unusual. I’m trying to keep him from dying from this horrible disease. My husband told me today, and I’m sure several times before, to just let it be. I asked him if I’m just supposed to sit back and let him die. He said yes. I don’t know what to do. He is going to get really sick at some point and he is going to expect me to pick up the pieces like I alwYs do (my son). I just can’t seem to shut my mouth, but it is killing me to watch what he is doing to himself. How do I sit back and let him do this to himself. What do I do when the day comes that he is so sick and possibly dying? I know he is extremely nervous about this surgery next week but food is not going to solve his problem. I tried to get him into Therpy but he refused to go. I have my own health issues going on right now, and I’m afraid he is going to kill me with his mouth and attitude. I feel like I’m fighting a two front war, which we all know, doesn’t work well. I’m spending boat loads of money taking him to doctors and all this surgery, and getting him to NYC. I feel he just expects us to do all this for him, but he does nothing to help himself. I have half a mind to cancel this upcoming surgery but they will be taking him off his ostomy and connecting him to the j-pouch for the second time. And I just can’t be that rotten. But with his weight gain, it’s going to present lots of complications. He doesn’t get it that the more he weighs, the harder his recovery will be and he also has fatty liver disease. I just don’t know what to do. Sorry for ranting on and on, but my heart is breaking and I can’t stop it.

Jeffsmom,

I knew we had lost touch and I wondered how things were going with you two.

One of the hardest things for a parent to let go and realize they can not control their son or daughter anymore. With the health problems of your own, it is often difficult for a mother to put herself first (for once) and to take care of herself. Doing this will help you more than you might realize. Doing both-letting go and then taking care of yourself, will help you even more.

In reading your posts, it seems to me that no matter what you do, you feel a ton of guilt. By letting go and realizing you can not control everything , I will hope that any guilt you are feeling can dissipate.

I hope Jeff makes it through his surgery next week in good shape ( I hope you do too!

Consider yourself hugged.

Jeff

HinJeff, thank you for your kind words. I couldn’t find the site for a long time! And it was a very long summer and fall. We spent almost every other week in NY at doctors visits. I gave up my summer at the beach. Anyone who knows me, the beach has always been a top priority in my life, I never ever miss a summer! That said, since Hurricane Sandy, I don’t like it so much!. But anyway, I have put so much of myself into Jeffrey’s care. He is my only child, really all I have in this world. He is a difficult person on a good day, never mind the verbal abuse I get from him every day. But you are right I have to let go, but it is killing me to do so. I keep thinking I have to do something to protect him from himself. But on one hand, I know I can’t do that. The hotel and conference information came out yesterday on PSC Convention at Yale yesterday and I’m thinking why bother to go. There is no point and all I will see is kids who are trying to save their lives, and hear about all who have died. Why put myself through all that when I can watch my kid die right before my own eyes. I don’t need further reminders about how horrible this diseas is. I’m living it. I think I need to get out of the house more!

Well, now that I find this forum again, I’ll keep in touch better. Sometimes though, it’s just scarry. I know what the reality is. Well, I’m going to run to yoga, I really need it today! Thanks again and I promise, I will keep in touch.

Dianne

Dianne,

How did the surgery go?

Jeff

Dianne,

I was just reading your post from several weeks ago. I cannot imagine what you are going through with your dear son. You love him so much yet everything you do he seems to be rejecting. He's an adult now and he has got to come to the point that he realizes that responsibility. It does seem there needs to be some intervention done for him. As hard as it sounds, you may have to give him an ultimatum that he either goes for counseling or whatever you believe is needed or he will have to find a place to live on his own and take care of his own financial needs. I know this is tough love, it would break my heart as a father to do it as well, but in the long run will it make a man out of him to face his responsibilities? Only time, hope and a loving heart will tell in the end. Please know of my concern for you and he at this time. Let us know if we can help.

Mark Wilson, Moderator

PSC 2011 / Liver Transplant 7-2015

Hi, Jeff. Jeffrey had his takedown surgery on Jan. 28th. It went great. They reconnected him to his j-pouch, took out his gall bladder and did a liver biopsy. If the surgeons didn't know he had PSC, they never would have guessed. His liver was pink, soft, and healthy looking. I believe that it was staged as and early stage 1? not sure, i haven't spoke to the liver doctor. but of course, things are never as they seem! on day 3 post op, he spiked a fever. No particular reason, just did. White blood count was high as well. On day 4, it was gone. No infection, nothing. Later that day, he started throwing up, boat loads! Found out a few days later, he has a blockage. Long story short, he has the blockage, stayed in the hospital until this Thursday, Feb. 11th. He is home now, on liquids and soft protein, like yogurt, today he had a scrambled egg. He won't drink Ensure or any of those other protein drinks. So, basically, chicken broth and yogurt with an egg every now and then.. Other than pain, he is doing well. Thank you so much for asking ! And he lost 20 lbs in the process!

I think the meltdown a few weeks ago was a combo of skipping his meds and being really scared. After he threw his fit, I didn't talk to him for 3 days, then just let it go. He opened up to me later that he was scared to death about this surgery. Now, he is all over me, Im sorry Mom, you do so much for me, yadda, yadda, yadda.

Hope all is well with you! And again, thank you!

dianne

JeffDC said:

Dianne,

How did the surgery go?

Jeff

Mark, thank you for your words of wisdom! It is hard, and Jeffrey has so many issues. His Aspergers really gets in the way/ His super duper meltdown was out of fear. He has a hard time expressing himself when he gets all wrapped around himself. He was having major anxiety and I didn't pick up on it. I didn't talk to him for three days, message received. Now he is all over me. I wish I could kick him out, but it is just not a reality. He can not live on his own. Doesn't have the executive function to do so. No for lack of trying on my part, believe me. When we move to AZ in a few years, I will get him his own place, close by, most likely on the property and he can live over there. WE are in the process of getting him Social Security so that will help financially, but for the time being, and i hate to say it out loud, but Im sort of stuck with him. I love him to the ends of the earth, but sometimes, we just can't live in the same house! Developmentally, he is stuck at about age 18. The thought of living with a teenager for the rest of my live is overwhelming! But it is what it is. Im still working on getting him into therapy, and at some point I just might be successful. Who knows, SS may require it. Now thats a positive thought! Right now, we are working on getting him healthy from this surgery.

Again, thank you so much, I truly appreciated your thoughts. And you are absolutely right! Dianne

fcmmark said:

Dianne,

I was just reading your post from several weeks ago. I cannot imagine what you are going through with your dear son. You love him so much yet everything you do he seems to be rejecting. He's an adult now and he has got to come to the point that he realizes that responsibility. It does seem there needs to be some intervention done for him. As hard as it sounds, you may have to give him an ultimatum that he either goes for counseling or whatever you believe is needed or he will have to find a place to live on his own and take care of his own financial needs. I know this is tough love, it would break my heart as a father to do it as well, but in the long run will it make a man out of him to face his responsibilities? Only time, hope and a loving heart will tell in the end. Please know of my concern for you and he at this time. Let us know if we can help.

Mark Wilson, Moderator

PSC 2011 / Liver Transplant 7-2015