(Another) update on my Daughter

For those that have followed, I'll try to spare you too much history. Briefly, my Daughter recently had some updated diagnostics. Two MRI's and a lower scope. She's been on Stelara for about a year or more now. While she feels much better overall than when she took Remicade, her results are showing moderate inflammation, and fistula tracts. Nothing connected any organs fortunately.

Her GI nurse is recommending she consider a medication change at this point. Her last scope was significantly better while on Remicade, in fact her GI ever said at that time she was presenting as someone without Crohn's.

She's considering Humira or Rinvoq. Will probably wait to discuss with her GI, but her next appt. isn't until August. She might try to push for a phone consult.

Hope I didn't get too long, but if anyone has any insight or recommendations/advice, I would certainly appreciate it.

Hey Paul,

Thanks for your reply. She was on Remicade for about 14 years. Didn't discontinue due to antibodies. She always felt extremely good Crohn's wise on Remicade, but unwell physically in many other ways. She feels extremely well on Stelara, but it doesn't seem to be keeping the disease under control. We're very unsure as to what to do next. Her GI feels that since Remicade worked so well, that Humira would be as effective. Rinvoq would of course be very unchartered territory.

Hey Tom,
Its difficult when things work out like this. I agree with SciFi.... I'd get the meds changed ASAP. I would not wait until August. Call her doctor and get her in. I am dumbfounded that a doctor would not immediately tell her to come in and change her meds once they saw any signs of fistulas.... Sorry that's my rant for today.

Fistulas are pretty terrible. My tracts and fistula have never completely healed. They sorta "skin over" with new skin but they open up frequently.

You all are in my thoughts and prayers.

Clo

clo2014 said...
Hey Tom,
Its difficult when things work out like this. I agree with SciFi.... I'd get the meds changed ASAP. I would not wait until August. Call her doctor and get her in. I am dumbfounded that a doctor would not immediately tell her to come in and change her meds once they saw any signs of fistulas.... Sorry that's my rant for today.

Fistulas are pretty terrible. My tracts and fistula have never completely healed. They sorta "skin over" with new skin but they open up frequently.

You all are in my thoughts and prayers.

Clo

Hey Clo,

First off, thanks so much for your ongoing support. As I stated to @scifigal, it would seem that Humira would be a good choice. There is an update though. She now has a new GI nurse. It's an important position at the GI clinic she's been a patient of for so many years. The GI nurse, is more of an assistant GI, and direct Liasson to her GI. The new nurse called her, and interpreted her recent MRI results and bloods as not being as concerning as they seemed. She feels that my Daughter should remain with Stelara, and then see her GI in August. Even the fistula tracts weren't concerning as they weren't leading to any organs. So for now, it's status quo, and keep a close eye on things.

Tom.

Tom,

All any of us can ever do as a parent is research, give suggestions and then wait and pray. It's heart wrenching when you are watching your kids go thru difficult times. Hang in there Tom. Just watch and ring a peal over anyone's head if you think you need to. My kids... They are so polite they never really push for their own care. I sometimes have to jump in and help.

On those fistula tracts... Remind her to watch them..or the feel of them.. if they get infected she'll feel different where they are at. Like something is swollen, hot and sorta pinching..... If that happens I'd have her go in to see her GI or PCP for antibiotics. My tracts that did not go all the way thru caused me to go septic twice. I just ignored the hot flashes or mini fevers, nausea, mini twinges..just feeling sorta off.... And thought it was just my Crohns/UC. I did call my GI but we decided to wait it out....I ended up in the hospital...twice. I switched GIs. This one trusts me when I tell him something is off, we still do labs... But we start antibiotics right at the beginning. Obviously I am speaking from a place of fear ... But if someone had explained it to me--I might not have had to go into the hospital twice ... Lol.

Straydog, I'm so sorry to read about your child. I hope and pray that your daughter has a successful treatment and remission.

You all are in my thoughts and prayers. (I hope that doesn't offend anyone...)

Clo

Hey Clo,

Thanks for your post. My Daughter is really good at tracking her symptoms, and usually doesn't ignore anything that doesn't seem right. We'll hopefully keep things quiet until she gets her GI's imput.

After reading about Susie's Daughter, I feel guilty complaining about anything. Really hope and "pray" she will do well.

Tom.

@Tom, never feel bad about anything, when it comes to our grown kids having any kind of disease it's scary no matter what it is. It's not about who has it the worst. Keep us updated abut your daughter, it's just as important posting when she is well, it gives others hope.

At Clo & Paul, yes there are newer drugs available to treat this type of cancer. She is doing weekly chemo which has been rough. Stem cell is used on some patients, she has been approved for it, probably will happen in May. This started with chest pain for 2 weeks, finally convinced her to see her dr. The chest xray showed pneumonia, a fractured collarbone, small fractures & holes in her sternum. CT Scan showed the same plus a lesion, it just blew up from there with more tests & of course biopsies. This past week she woke up with a fever & more chest pain, xray showed pneumonia again! She is like the energizer bunny always in high gear, so learning how to slow down & listen to her her body is a challenge. She has a fantastic oncologist & his nurses have been a tremendous amount of help. We all keep praying for the best outcome.