Hello everyone. My daughter is presently in hospital, this is her second week and she is so fed up. She presented with very bad pains and vomitting to the A&E Department and we thought she had adhesion or blockage as she has a J-Pouch, having been suffering with ulcerative colitis since the age of 8. She is 20 years old now and was diagnosed with psc while on a routine check up at the hospital last year. We were shocked that it was in fact the psc bile duct narrowing that was causing this. She had a stent inserted on Monday of this week. By Tuesday she was eating and in good form and we were relieved about that buck shocked to find that it was only a temporary measure, we feel so uneducated and useless right now.Yesterday was the worst. She became very ill late on Tuesday night with very high temperature and excruciating pain and had to be given morphine. All day Wednesday it was very hard to get her temperature down they even put icepacks on her head. Her weight is so low and she looks so weak. She is on intravenous antibiotics and thankfully today she is a lot better, however still has pain. The doctors have told us the gallbladder is swollen and they are thinking of removing it. Then this evening, we were told that they do not think the stent is working and they are putting in a balloon. Can someone PLEASE tell me what this is and what to expect? They have also told her that she has reached another 'stage' but they do not really explain anything except that it is a chronic progressive disease and is different in everyone, moves at a different rate. My daughter is a beautiful, kind, thoughtful young lady and I just cannot believe this is happening to her. After suffering years of ulcerative colitis, no one even mentioned psc until she was diagnosed with it. We are staying positive but this evening..yet another setback. Thanks for reading. This is my first post so I'm sorry if I have not been precise enough or am leaving bits out. I have been at the hospital all day with her and I just want her home, well, eating, slamming doors and doing what all young daughters do. Also, my daughter is a very private person and will not discuss her illness with her friends so I feel she has no one to talk to only us, her mother and father.
Dear Stephen, thank you for your prompt response. I am less anxious now about the balloon procedure. Also, I have lots of questions for her doctors, thanks to reading about everyones' personal experiences here, Thank you for the link also. I will check in later and let everyone know how my daughter is getting on.
Dear Blanch,
I am so sorry to hear things aren't going well for your daughter. It is such a stressful time for you I am sure and I know how hard it is to feel useless and uneducated about the new disease. How wonderful your daughter has you both to take care of her and lift her spirits.
Honestly, I think you should look forward to both the balloon dilation and gallbladder removal as procedures that should help things immensely. My boyfriend had a stent for a couple months and then it got infected (as stents tend to do because they are a piece of mesh left in the bile duct to prop it open). They removed it and did a balloon dilation instead (Using a small balloon to stretch open the bile duct but then removing the balloon at the end of the procedure and leaving nothing extra in the duct) and he has been doing great for 9 months now with no need for another dilation. It is nice to not have to worry about stent infections all the time. Gallbladders also tend to get infected in PSC patients and can even rupture! Without her gallbladder, you won't have to worry about this risk. Gallbladders are pretty useless anyways :)
Best of luck and keep us informed! You will all be in my thoughts.
Thank you Stephen and LeggyMaggie. My daughter was much better today. She is still on iv antibiotics and has a little pain but is eating again. The latest news is that her bilirubin levels are down and they believe now that the stent is working and therefore may not need to do the balloon. Also, we were told that they do not want to remove her gallbladder and would first think of draining it. My daughter only has one kidney and for years I blamed the long-term antibiotic sh was on, Monotrim, as being the cause of her UC, as I read that the antibiotic could kill the good bacteria in the gut. I now believe that it is an autoimmune issue as is her astha and psc. Although she looks a lot better, her mental health is worrying me now as she has lots of time in hospital to dwell on her situation. Thankfully she is opening up to me and telling me what is on her mind and it is breaking my heart. Her doctor told her today that if he had the power to give her a new liver tomorrow he would and that he would be watching her very closely and to trust him. If the bilirubin continues to come down and she is pain free he will allow her home on Monday. I am praying that this stent works and she is well again soon. Thank you for reading this, it really is therapy for me to write it down. I told my daughter about this site so I hope she comes on and introduces herself, she needs good people like yourselves to guide her through this very tough time in her life. She is the bravest person I know and has fought through many traumatic health setbacks in her childhood and teens. I hope you are all keeping well.
Hi Blanch,
My son is 17 and has PCS & UC. He was diagnosed last January. He had his colon removed in November and the reattach surgery done on New Years Eve. I'm sorry your daughter is going through this. I understand she is a private person. It's tough for them not feeling like they can do everything their friends are doing. Try to keep her focused on her goals not the disease. I completely changed our diet. My son fudges now and then but the Dr.'s are shocked at how well he is doing after everything he went through last year. He had an enlarged heart, liver, spleen, gallbladder & autoimmune hepatitis. He was on Remicade infusions twice a month for his colitis. His liver biopsy indicated scaring on his liver. His bile ducts were inflamed & he was itching, vomiting and lethargic.
Today a little over a year since being diagnosed my son is doing great. He struggles with insomnia but his only medication is the Ursodiol. He is back to school and his grades are improving. He is now almost as active as he was before. He hated being in the hospital. That almost did him in. Once we were back at home he started the road to recovery. His liver is doing great. His heart is back to normal. I have him on the GI diet. The only red meat is wild game. I buy GMO free and walked away from anything processed. I no longer buy the quick easy snacks for him to microwave. I've read articles that suggest celery juice and the paleo diet have positive results on autoimmune diseases. If your daughter wants to talk to someone close to her age about this I'm sure my son would speak to her or correspond via e-mail. He is a positive ball of fire. I myself am going on week three of insomnia. Sometimes the lack of what Dr.'s won't tell you or still don't know themselves is frustrating.
I wish you and your family well and I'll keep you all in my prayers.
It's not easy watching your child suffer through this.
I honestly don't know how my son stayed so strong for so long. He truly is an inspiration to me.
Stay positive. I keep a journal & log triggers, progress etc. It helps me stay focused. You never know,
tomorrow your daughter could have a change for the better. The Mayo Clinic info is excellent. I visit that a lot.
We were told by his team of Dr.'s that depression is a major factor of PSC. As a mother I would recommend
keeping an eye on that. Stay Positive!!!! I firmly believe that's key.
AJ
Hi AJ,
I am glad to hear that you have your son on the GI diet. Is he gluten free? My mom's doctor from UC Davis told her that it was going to be the most important discovery they have made in the next 10 years. My mom went gluten free and got amazing results from it. In fact, she amazed her doctors who said that she was doing really well and that they did not know why. She was on Usodial and Xifaxin, with Lactulose to help with the high ammonia levels. I do not know why more people here on the forum do not talk about gluten free benefits? I know that it is not a one stop fix it for everyone, but there are European studies for PSC that suggest that the number of people, that going GF helps, could be as high as 50%
. I know that Stanford also put her on Milk Thistle and Alpha Lipoic Acid along with her other regular meds. Can anyone talk about their experiences with those too? I have been diagnosed with high liver levels and fatty liver syndrome and am serious about being gluten free and talking the milk thistle and ALA.
ALL of my other symptoms of migraines, terrible stomach upset, stomach pain, and joint pain have gone away since I became GF. Even my liver values are better too. Per my mom's doctors, I keep the sodium to 1400 mg a day or less, watch my fat intake and also avoid red meats.
Keep up the good work with your son and stay positive. You sound like a wonderful parent.
Jill
mybuddy20gauge@hotmail.com said:
Hi Blanch,
My son is 17 and has PCS & UC. He was diagnosed last January. He had his colon removed in November and the reattach surgery done on New Years Eve. I'm sorry your daughter is going through this. I understand she is a private person. It's tough for them not feeling like they can do everything their friends are doing. Try to keep her focused on her goals not the disease. I completely changed our diet. My son fudges now and then but the Dr.'s are shocked at how well he is doing after everything he went through last year. He had an enlarged heart, liver, spleen, gallbladder & autoimmune hepatitis. He was on Remicade infusions twice a month for his colitis. His liver biopsy indicated scaring on his liver. His bile ducts were inflamed & he was itching, vomiting and lethargic.
Today a little over a year since being diagnosed my son is doing great. He struggles with insomnia but his only medication is the Ursodiol. He is back to school and his grades are improving. He is now almost as active as he was before. He hated being in the hospital. That almost did him in. Once we were back at home he started the road to recovery. His liver is doing great. His heart is back to normal. I have him on the GI diet. The only red meat is wild game. I buy GMO free and walked away from anything processed. I no longer buy the quick easy snacks for him to microwave. I've read articles that suggest celery juice and the paleo diet have positive results on autoimmune diseases. If your daughter wants to talk to someone close to her age about this I'm sure my son would speak to her or correspond via e-mail. He is a positive ball of fire. I myself am going on week three of insomnia. Sometimes the lack of what Dr.'s won't tell you or still don't know themselves is frustrating.
I wish you and your family well and I'll keep you all in my prayers.
It's not easy watching your child suffer through this.
I honestly don't know how my son stayed so strong for so long. He truly is an inspiration to me.
Stay positive. I keep a journal & log triggers, progress etc. It helps me stay focused. You never know,
tomorrow your daughter could have a change for the better. The Mayo Clinic info is excellent. I visit that a lot.
We were told by his team of Dr.'s that depression is a major factor of PSC. As a mother I would recommend
keeping an eye on that. Stay Positive!!!! I firmly believe that's key.
AJ
Thank you AJ. I am so happy to hear that your son is doing so well and very sorry to hear of all he has gone through. As a UC Mom, I understand the importance of good nourishing food. I am very interested in following a GF and GM free diet for my daughter. Yesterday, as she was feeling well, I brought some GF pasta with green pesto up to her in a tub as she hates the hospital food. I have also avoided the processed quick meals, though sometimes in the past, my daughter would go out with friends and have a take-away meal after a movie and suffer for it later. Perhaps we could share some recipe ideas in the future. My daughter does like red meat but I never thought of giving her game meats so thank you for the tip I will be sure to include it. As I live in Ireland, it is easier to purchase GM free fruits and vegetables and as my mother keeps chickens, we only eat free range eggs. I am finding the dietitians advice in the hospital so contradictory to what I feel is right. For example, as my daughter's weight is low, the dietician is telling me to put her on a high fat diet..milkshakes etc. as her weight is now so low. My instincts are telling me 'slowly but surely' rather than 'quick fix'. Again..thank you.
mybuddy20gauge@hotmail.com said:
Hi Blanch,
My son is 17 and has PCS & UC. He was diagnosed last January. He had his colon removed in November and the reattach surgery done on New Years Eve. I'm sorry your daughter is going through this. I understand she is a private person. It's tough for them not feeling like they can do everything their friends are doing. Try to keep her focused on her goals not the disease. I completely changed our diet. My son fudges now and then but the Dr.'s are shocked at how well he is doing after everything he went through last year. He had an enlarged heart, liver, spleen, gallbladder & autoimmune hepatitis. He was on Remicade infusions twice a month for his colitis. His liver biopsy indicated scaring on his liver. His bile ducts were inflamed & he was itching, vomiting and lethargic.
Today a little over a year since being diagnosed my son is doing great. He struggles with insomnia but his only medication is the Ursodiol. He is back to school and his grades are improving. He is now almost as active as he was before. He hated being in the hospital. That almost did him in. Once we were back at home he started the road to recovery. His liver is doing great. His heart is back to normal. I have him on the GI diet. The only red meat is wild game. I buy GMO free and walked away from anything processed. I no longer buy the quick easy snacks for him to microwave. I've read articles that suggest celery juice and the paleo diet have positive results on autoimmune diseases. If your daughter wants to talk to someone close to her age about this I'm sure my son would speak to her or correspond via e-mail. He is a positive ball of fire. I myself am going on week three of insomnia. Sometimes the lack of what Dr.'s won't tell you or still don't know themselves is frustrating.
I wish you and your family well and I'll keep you all in my prayers.
It's not easy watching your child suffer through this.
I honestly don't know how my son stayed so strong for so long. He truly is an inspiration to me.
Stay positive. I keep a journal & log triggers, progress etc. It helps me stay focused. You never know,
tomorrow your daughter could have a change for the better. The Mayo Clinic info is excellent. I visit that a lot.
We were told by his team of Dr.'s that depression is a major factor of PSC. As a mother I would recommend
keeping an eye on that. Stay Positive!!!! I firmly believe that's key.
AJ
Good morning all,
We are fortunate for where we live. We live off of wild game and fish. I rarely buy meat at the store. I honestly believe diet is the key factor. My son traveled for hockey for the past 12 years. We practically lived in motels and at ice rinks. We ate out a lot. I think people find themselves grabbing that "quick fix" or "grab and go" and aren't eating as healthy as we should. We're ingesting the foreign substances into our bodies that I believe are triggering the sleeping cells causing autoimmune disorders. The past few months of dietary change for us have proven that for me. I realized how much I missed cooking. I don't follow recipes I just kind of experiment and throw stuff together. With those that suffer Crohns & colitis as well you already have to watch what you eat. Now add the ones that have a J pouch or total colectomy and you are limited even more. I look at that as our bodies forcing us to listen. My son can't eat nuts, jerky or fibrous fruits and vegetables but he can he can if we blend the fruits and veggies or juice them. People I have talked to that have tried "juicing" are also showing improvement. I'm looking at juicers now. My nephew owns a Cross Sport gym and one of his closest friends has suffered Crohn's Disease for years. He and my nephew researched the Paleo diet and he has been symptom free for over two years on that diet & off of meds. My son is a unique case. I'm mixing and matching as we go. I buy Muscle Milk for him. He loves that. The smoothies are a hit. When I bake rolls or bread I use coconut or gluten free flour. I'm planting a garden for the first time in years. We don't fry anything. I bake, roast or grill. I try to buy vitamin rich foods and not actually push vitamins. He is a teenager so I know he is fudging with his friends but he really is good about diet and excersize. My buddy is a GREAT cook & he loves it. :) I'm lucky.
I'll end by saying you have to do what's best for you. Everybody is different. It isn't just about feeding your body. You have to feed the soul too. I think my son's greatest attribute is his attitude. He lives each day to the fullest. He's forever saying "Mom, tomorrow isn't promised to anyone" I'm going to live life having fun.
I wish you all a wonderful weekend!
AJ
I really hope my daughter can follow your son's lead A.J. once she is out of hospital. He is an incredible kid. I wish I could bottle his positivity and outlook. My daughter was allowed to come home for a few hours today so we brought her for a drive and a nice lunch which lifted her spirits. We will continue to be positive. Thank you A.J.
No need to become worried for what I have to say since I as well as others in this group have made it out of the hospital better. I always get very bad pancreatitis post ERCP (the stenting procedure) which is extremely painful but it resolves itself on its own by not eating or drinking anything by mouth for a few days (unfortunately since I as well have a great deal of difficulty staying above the underweight line), has the doctor ruled out pancreatitis? And the ERCP and pancreatitis would cause swelling of my gallbladder. Sometimes doctors and nurses are hesitant to give the proper kind and strength of pain medicine please do not hesitate to urge them to provide more relief for your daughter.
I am just checking in to let you all know that my daughter was discharged from hospital on Friday. She is doing very well now. They did not remove her gall bladder as they want to prevent further scar tissue as she as already had many surgeries. After ten days of iv antibiotics the infection cleared and her billirubin is down. The itching has stopped and her energy levels are on the rise. She has also gained a little weight. It is such a relief to see her laugh with her friends again and go to the movies this evening. Thank you all so much for your advice and reassurance. My daughter has to go back in four weeks to have the stent removed. We are dreading this as I worry she will get an infection again but for now I am so thankful that she is well.
Oh Blanch! That brought happy tears! I’ll continue to keep her in my prayers. I’m so glad she is home & spending time with friends. Yea for good news!
What wonderful news! I'm so happy she is doing better and you weathered the storm.