I have a 16 y.o. daughter with severe Ulcerative Colitis. She has had many medication fails. She is a primary non-responder to Remicade. We have been in the hospital for 18 days today and she has had 2 (Entyvio) vedolimumab infusions, last one was 3 days ago. She received a second blood transfusion yesterday due to blood loss with bowel movements. Her disease is pretty bad. Vedolimumab is rather new to pediatric patients so no one here really knows how long it will take to work, if it is going to.
She has been on 30 mg of steroids for a month and her body no longer responds to it.
Can anyone tell me how long it took to see results from Entyvio/vedolimumab infusions??
Thanks.
Written by
MomofUCkid
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Good Morning, I am saddened by the amount of pain and uncertainty your daughter is fighting.
I pray she is soon on the road to a easier life. x
I have Crohns disease which is a little different to UC , but equally debilitating .
I was on Vendolizimab for may months and the results were amazing , i found my Crohns manageable and the symptoms were very few , in fact it was the best i had felt in may years .
I found the infusion worked very quickly . I had to stop it due to other health reason not associated with Crohns .
I may not have answered your question but i felt i needed to just say ...... Hang in there and i am sure /hoping it will work as it did for me
Hi, how is your daughter doing now? I have a 15 year old son newly diagnosed with UC and so far doing okay after his third infusion with Remicade. I am thinking of you and hope your daughter is doing better and that they will find out how to make her 100% again.
She is very bad. Back in the hospital. She lost 9 pounds in 10 day after the 2nd infusion, so we dont have time to wait for the 3rd infusion, unfortunately it looks like we will be planning a colectomy and J Pouch surgery very soon... as soon as she is healthy enough that is.
I’m so sorry to hear that she is back in the hospital and not responding well to any drug therapy. I can imagine it’s scary for her and worrisome for you. You are going through any UC parent’s worst nightmare and I can offer no help other than saying that a colectomy will cure her UC and make her better in the end. It is a surgery that has made many UCsufferers feel well and cured finally. And it is a surgery that we all have in the back of our mind to free our loved one from more pain. Please know I’m right here with you in your worries and concerns. When was your daughter diagnosed with UC? Has she suffered a long time already? How is she coping with all this?
Hope to stay in touch., I know it’s hard for friends and family to truly understand the whole ordeal. There are so many details and personal experiences that stay with you and I’m sure you wish you could take your daughter’s pain away, but all we can do is be there, be strong, and trust the doctors. She will be fine I’m sure of it. One doctor said to us, worry about today today and try not to worry about the future, instead have faith it will all be okay in the end.
Thank you for the kind and wise words. She was diagnosed a year and a half ago at 14 years of age. The first year was relatively controlled with Sulfasalazine but it was causing her major blood issues. White blood cells got to a point that were dangerous so we had to stop that medication. Nothing since has worked for her. Not pills or infusions. Steroids also stoppd working and she has only been on steroids 3 total periods in the last year and a half. Her disease is severe but usually only left sided. It was pancolitis (whole colon) at diagnosis. Yes, surgery is scary.
We are considering the J pouch surgery at either Cleveland Clinic or Cincinnati Clinic Children's Hospital. She is on steroids still (tapering) which causes some issues with surgery. We have yet to be transfered. It is scary for her and me but it sounds like her quality of life will be much better, albeit not pre-diagnosis, normal.
We really do not want an ostomy bag for the rest of her life so the J Pouch surgery seems ideal though she will most likely have one between phases of surgery. There is a one-step procedure but I don't think she qualifies due to having steroids and biologics in her system still.
Until we meet with a team at one of said hospitals, all is still uncertain. It is a very worrisome time but we are all positive. She is very strong. She has denied counseling services as we have tried since her diagnosis of UC and Celiac disease. When her health is better I may have to pull my mom card and enforce some talk therapy, even if we go as a mom/daughter (patient/caretaker) team.
I’m not very wise I’m afraid, I just wanted to let you know that there is definitely someone out there who cares and think about you both. Our kids are incredibly strong. My son did speak with a IBD psychologist at the center when we were out of the hospital. He told the lady he was worried about me ! And that he just want everything to go back to normal. We have talked with him a lot and it’s hard because they are also just teenagers and so it’s not easy and my heart broke for him having to deal with this. It’s just, there is no other way out than through it, day by day as you know. They do not deserve this that’s for sure. I compare it with having an accident - it’s just such a shock and unbelievable.
Our son was diagnosed after a very sudden severe onset. He literally went to the bathroom one morning and noticed blood and from there it progressed quickly to hourly bloody stools for more than four days before he was diagnosed by an emergency colonoscopy. He was diagnosed with pancolitis as welll affecting the entire colon. He was put on IV steroids 60 mg which only helped with the frequency which is why he got his first infusion with remicade before leaving the hospital just before Christmas. Since then he has received two more infusions and has tapered down the prednisone to 5 mg per day. He is doing well but his stools are still very loose. We hope he will respond well but we dare only look into the near future and hope for the best.
It seems you have found two excellent hospitals if your daughter needs surgery. We have already made a similar decision should we have to go that route one day. We are in the north east and looking at Boston Childrens Hospital or Childrens Hospital of Pennsylvania.
I hope to hear soon that your daughter is progressing even if a little bit and even if it means she will be well enough to have the surgery.
Please tell her she is not alone if it helps her to hear.
Thank you. It has been a crazy, busy and emotional time. We are concentrating on her physical health at this point and due to her decline in health have to do a 3 stage j pouch surgery. First step is to just get that pesky colon out and let her heal, which isn't easy for her body.
We have decided to stay in Toledo, OH for the surgery to be close to home and doctors and hospital that knows us well. The surgeons work out of Detroit as well. It is a hard decision to make, but there is a lot that goes into this. I am single mom of 2 (one in college) and need to work as much as possible and need the support of my family and friends.
Much luck with you. Today I am finding many personal stories of people that live with j pouch to show my daughter. It is a journey that will be unknown but I plan to help others learn through her journey.
My daughter had a colectomy on February 27, 2020. While hospitalized she developed vasculitis (small purple dots/marks) on her thighs, calves and arms. Later tested positive for an antibody called P-Anca. This seems to explain her not responding to treatments.
We have decided for her to have a j-pouch surgery in 3 steps in order to let her unhealthy body heal well between each surgery. Due to the Anca diagnosis she may be more likely to develop pouchitis and be more likely to not respond to treatment. These are bridges we will cross if or when we get there. She is 16 y.o. and we want her to live as close to normal life as possible without a ostomy bag.
She does have an ostomy bag until the final surgery that will be within 5-6 months but it is minor compared to her sometimes 20 painful, bloody bowel movements a day including 5-6 at night.
She will discharged from the hospital tomorrow after almost 2 weeks post surgery but she will have been in the hospital around 49 days of the past 55 days.
As a parent, it was a hard decision that was really driven by her body and its lack of response to any treatment, as well as major weight and blood loss. It has been a blessing to see her start to gain weight and not wake throughout the night to use the bathroom. She looks and acts more normal than she has since the end of last summer.
It is a decision we will never regret!
Hi,
I’m happy and sad to hear your update. Happy because it all went well and your daughter is doing better and obviously sad that she had to go through all this.
We are in a bad place as well. It appears my son is not responding to Remicade as hoped and this past month blood has appeared more and more in his stool again.
The doctors are puzzled because his blood work and cal pro, anti bodies and Remicade level is all good. Now we are heading back to the worry and the urgent decision, most likely having to schedule a sigmoidoscopy to see what going on before it escalates further. They tried to add Vacomycin the last week to see if it helped but it seemed to make it worse. We are at a loss. The doctors did start mentioning surgery to him, as way to prepare him just in case, but it scared him even more.
I’m thinking of you and I’m glad all went well. Please tell her she is not alone.
And please stay together in these otherwise worrying times out there too.
Oh, I am so sorry. We tried an antibiotic "cocktail" of 4 antibiotics at once and it didnt work for her.
As scary a time and the adjustments are hard, seeing her not live in the bathroom and lose so much blood is good. Knowing she is finally sleeping through the night allows me to do the same.
The learning curve of the ostomy bag is challenging but I know it is temporary.... hopefully for her entire life.
I hope your son finds something that works. Though surgery isnt ideal, my family can tell you (early in this journey) that it is do-able. If may be the thing that we find is almost devine intervention. As strange as that sounds. Her risks of cancer and really death are so significantly lower now.
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