Hi, I'm new with son just diagnosed

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monicaleigh

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Hi Everyone!

My son Joe is 15 and just diagnosed 2 months ago with chrons. What a nightmare this has been. Where do I begin. He has been in the hospital 4 times in 3 months has had 5 blood transfusions. At present, he is on TPN (IV nutrition & Meds) 16 hours a day and no food or water for 2 months (we are currently in 3rd week). He has a huge ulcer in the duodenum that was/is so inflamed that it closed off is stomach and no food was passing through so he vomited every time he ate. He is currently using prednisone, methotrexate, and remicade. The Dr. thinks with total bowel rest, we MAY be able to avoid surgery. This weekend we ended up in the hospital for a blood transfusion, blood in stool, and stomach pains. I can't believe the downhill spiral we have experienced in such a short amount of time. We meet with GI tomarrow for blood count, weight check, etc. Has anyone ever heard of complete bowel rest and no food or water for months helping? I would appreciate any input.

Thanks
 
Newbi

HI Monicalejgh
First of all I want to welcome you to this forum
Here you should find alot of answers to your questions.
So sorry that your son is going through a rough patch fight now.
I have also been on TPN twice for complete bowel rest no food or drinks.
I gained 30 lbs the last time I was on TPN. But they have too keep taking your blood work every week to make sure that your organs and everything else are working ok.
In time Joe will start to feel better, too this all takes time.
The first time that I was on TPN prednisone wasnt working fast enough so they put me on a drug called solumedral its a cousin to prednisone but at a much higher dose.
Then I went back to prednisone in about 2 wks and TPN plus Pentasa and other meds and went home with a picc-line so I didnt have to stay in the hospital.
A nurse would come everyday and hook me up to the TPN. After a while I got used to hooking up myself and flushing my own tubes.
Sounds like your from Ontario ?
Whos your GI and what hospital are you attending
Feel free to ask as many questions as you like.There is always some one here who can give you some input or advise.
There are alot of older people on this forum who have had this roller coaster of a ride disease(like me) and younger people who are just starting to begin there
journey.
Just be patient and listen to the Drs. Im sure in the end it will work out for you.
The meth. and REmicade also take time to work.
Have Faith.
 
Thanks Tammy for the kind words of encouragement. We are from San Diego and being treated at Children's Hospital. We are doing the TPN at home with the Picc line, and we were all trained by the hospital on how to prepare the meds and prime the pump at the hospital. The home health nurse comes once a week to change picc line bandage. Joe is able to attend school (when he's not in the hospital), because he craves some kind of normalcy in his life. He is pretty down this week and is almost wanting the surgery so he can eat again. It is such a rollercoaster.

Thanks again.
Monica
 
Welcome to the forum. I am 17 so I can relate a bit to your son. I was diagnosed when I was 14. I also know what it is like to want surgery because I was so down but I never let my parents know so I just got really depressed and since none of my friends understood it got really bad. I am telling you this because you have to just encourage Joe. Its wierd because he seems like I did when I was diagnosed because I to just wanted to get back to school and everyone just looked at my like I was a freak. Make sure he is getting proper rest and ask him about how the kids are reacting.

Best of luck
 
HI
I know that its really tough.
Been there done that.
I hear what Joe is saying. He just wants his life back. Unfort.as CD people we dont get that life back.WE just have to cope with the hand that God has gave us. He is probably just saying he wants the surgery because he is depressed even if he wants the surgery it wont make his life better he, will still have CD.I still feel like that sometimes. Its just the depression talking. You need to talk to him more or get him on this forum so he can read other peoples stories. You never no he just might meet someone on here that lives near by you.
I must caution you on the picc-line (Im such a pro with them this will be #7 for me)be sure his hands are clean all the time. DO NOT let anyone touch that area without washing hands first and wearing a mask. I have had 5 infections because of that. One time my daught was hooking me up to TPN cause it was kinda hard for me to hook up with one hand so I let my daughter become my little nurse. She got really good at hookin and unhookin me up then flushing the tubes.Then it happened the second time my picc-line got infected. The symptons are no appitite bad chills then it spikes into a high fever it will keep getting higher if you give him tylenol it will bring down the fever. Mine got to 107 by the time I got to the hospital. I all most didnt make it. Because of my stobborness had to take me to ICU then find the right antibiotic to kill the bug Most common one is staff------- cant say it or spell it.Then you get the dry heaves and very bad Diareah. At that time they told me that I got the infection from someone else touching my picc-line. From then on no-one comes near my picc-line except the nurse and she must wear a mask.When IM not using the picc-line I keep the outside tubes wrapped up in a 4x4 sterile cloth.with tape around it.
Im not telling you this to scare you but to keep an eye and beaware of the symptons of an infection so you know what to do. Tylanol first then call an ambulance or drive him to the hospital right away.
Like I said it sounds like Joe needs some support right now so tell him some stories on what you have red with people who live with IBD or IBS or Colitis or Cronhs or show him this forum
Goodluck and keep in touch
 
Welcome

Hello Monicaleigh.
I'd like to welcome you to the forum
and encourage you to keep us updated on your son's condition.
I have not had TPN but have heard complete bowel rest does work very well.
Crohn's is a roller coaster ride at best...
but your son is in good hands with the doctors
and hopefully the symptoms will level off soon.

Again..welcome,
Please keep posting.
Hugs~Nancy
 
Hi Monicaleigh, welcome to the forum. I was offered TPN but I was having terrible problems with anal fistulas and so it wouldn't have been very effective for me, although I have heard that many people have faith in it. I hope it works for your son. Time will tell, try and ancourage your son to be patient, its a long road.

Ruth
 
Thanks everyone for the warm welcome and all of your replies. It really helps to be able to hear other stories and what to know what to expect. We went to GI today, and blood work looked good, so we will see her again in 2 weeks for more blood work. I'll keep you posted. Joe is doing ok emotially, but does get anxious about the no food issue. I sure hope this strategy works and does actually prevent surgery!

Thanks. Monica
 
Monica,

another welcome to the forum! I had TPN done for about 1 week pre and a few days post surgery for my Crohn's, and it worked well for me. I took it to gain some weight, as I was not able to eat solid foods and was losing a lot of weight. Bowel rest is known to be a great help temporarily to relieve symptoms and even clear up the disease, so there is no reason not to believe you will have a son avoid surgery in a few weeks!

Keep us updated!
 
Frustrated

HI, my name is Julie. I am in the same situation as your son. I am 36, I have been in the hospital twice in the last month with all the same symptoms as your son. My problem is that I cannot get a Dr. t treat me or diagnose me. My first series of tests came back positive for Crohns but they woulod not officially diagnose me. They did an upper and a lower scope and told me there is no reason for all the pain I am in. They did not address my hemloglobin of 6 and the blood my body seems to be losing. They sent me home with morphene and told me I will have to live opn pain meds. I have lost 15 pounds in a matter of two weeks. I seem to feel normal if I don't eat anything nor can I be up and active for more than two hours at a time without the excruciating pain. This condition seems to have no pattern, or personality. I never know when it will hit and had to quit my job. Do I keep going to Dr. after Dr. till they diagnosde me???? They seem to just pass me off. How can they tell me I have to live on morphene?????? Is any of this familiar to anyone? I am new to even hearing Crohns Disease, I know nothing. ANyone who can advise me I would greatly appreciate. I don't know how long I can live like this.
 
avoid surgery if it all possible. i really hope your son gets better.. when he is able to eat again, ask the doctor about a probiotic supplement. he may say it wont do any good but if he says there is no harm in taking it, give it a shot. there are ALOT of people swearing by probiotics helping with inflammatory bowel diseases including myself. it helped me immensly within 2 weeks.
 
Hi Jules MN Mom, welcome to the forum. Theres loads of info on this site to help everyone and if you can't find what you are looking for then just post a message, everyones happy to help. Its sad that you have been told that you no have to expect to live your life on morphine, sounds like a bit of a cop out to me. Have they not put you on crohns meds then? even though they said you were showing signs of crohns. How come tests show you have crohns but then the docs refuse to diagnose you? did you ask them why you haven't got a diagnosis? I too would be frustrated if I were you, you deserve a better explanantion than that. I would be tempted to go back yo my doc if I were you to get some more answers. Hope this helps a little


Ruth
 


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