Ulcerative colitis
Long story short. My daughter was diagnosed when she was 9-10. She is now 16. After the first episode where she went into hospital and had strong steroid meds, she has been all these years on sulfasalazine…recently because her calprotectin count have been much higher than normal (above 3000) the doctor suggested Infleximab infusions with Azathioprine. After the first one she felt ok but soon went downhill after that..worse than ever before. Doesn’t get off the toilet, massive pains, blood stools, severe tummy pain like she is constipated. The doctor took her off Azathioprine for a bit because he said she developed an infection. She had her third Infleximab infusion but she is worse than ever before. We have never seen her like this! It’s heartbreaking! She hasn’t slept a full night for over 3 weeks. As soon as she eats anything, toilet, big pain!
Can anyone advise about Infleximab, are these things normal until you figure it out, etc?
Hi
. I'm sure it is incredibly difficult to see your daughter struggle like this. It can take up to 8 weeks for those on infliximab to see improvement. It sounds like your daughter had the three introductory infusions, where these over the first 6 weeks? That said, it is certainly possible that this is simply not an effective treatment for your daughter. Of course, only a doctor can provide the proper diagnostics, but don't hesitate to press for answers and alternatives. Fortunately, there are now a number of treatments and I want to share with you this article from our editorial team on medications: https://inflammatoryboweldisease.net/treatment/medications.
Concerning being a parent of a child with IBD, I do want to share with you this article from our contributor Natalie for parents of a child diagnosed with IBD: https://inflammatoryboweldisease.net/living/parent-whose-child-diagnosed and this article on IBD in children and teens: https://inflammatoryboweldisease.net/what-is-crohns-disease/children-and-teens. I hope this information is helpful. Please know that there are people here who understand and feel free, if you like, to keep us posted and to ask additional questions - this community is here for you. Best, Richard (Team Member)Thank you so much for your reply and information which I will read. I am currently staying with her at the hospital since yesterday where she is taking some Pred steroids to stop the inflammation but also some meds for C Diff that they found. They also gave her some morphine yesterday to help with the pain…it’s so heart-breaking to see my daughter going through this.
The had one infusion, second the following week, third 2 or 3 weeks later (brought forward by a week because she wasn’t feeling well) and the fourth was supposed to be tomorrow but will have to be postponed until she is cleared from C Diff.
Just really hope this bug is what was causing all the problems and after she clears it the Infleximab will really work.
The thing I’ve started to realise is how many people suffering from these conditions are there!?Thanks Richard. Unfortunately it looks like she is one of the few people to whom Infleximab is not working. They are still giving her a fourth dose but we might need to try a different route soon. Heart-breaking. I just wanted to send my thoughts your way. As a mother myself I know how truly horrible it is to watch your child suffer. It sounds like you are doing all the right things to get her the help she needs, you are doing a great job and she is lucky to have you. Please keep us posted on how she is doing and hoping she gets the relief she deserves soon. Warmly, Erin (team member)
consider proteolytic enzymes (especially Serrapeptase or bromelain) for the bowel inflammation and pain
Looks like the C Diff is present but not toxic or active. She is improving...not as much pain, not many times going to the toilet, less blood, a lot more stools...manges to eat, drink and sleep through the night. Today she had a colonoscopy and tomorrow we will find out what is happening. The plan is to continue with the steroids for a bit until she gets back to normal, let the Infleximab get out of her system and start on Upadacitinib...and hope and pray that medication will keep it under control? Anyone had positive experiences on that? I believe it's fairly new treatment?
Apparently there is also an injection treatment she can have. Im so terrified. Bless everyone who goes through this, patients and family members.Hi
. So glad to hear she is improving. I can't personally speak to Upadacitinib (Rinvoq). but I can tell you that it is a different type of drug from infleximab. It is what is known as a JAK inhibitor. It works similar to the biologics in the way it inhibits autoimmune inflammation, but has a different mechanism. This article discusses the clinical trial results for it and patients that may benefit: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10007976/. The doctor may be able to provide additional information and hopefully others may chime in here with their experiences. Wishing the best for tomorrow and, hopefully, it will be the first step gaining control. Richard (Team Member)
