Surgery next potential treatment.What should I be asking before considering?

[SupportiveMom]

Hey guys. I have a GI appointment for my daughter on the 23rd. I'm actually kid of scared for the first time since diagnosis. Surgery was discussed at our last Appt. when we started Humira if it didn't make an improvement. I don't think it really has been doing much of anything. A little back story would probably help...

Sept 2012 with a month long hospital stay Dani started Remicade. Started to do wonders and all was well until Dec. 2012. Started building up antibodies but didn't know and started to do Remicade every 4 weeks, started symptoms all over again, hospitalized again for 2 weeks did the flagyl & cipro and finally things calmed down but never to how they were in Oct & Nov. By May we ordered the blood test you have to ship to California and pay lots of $ to find out what we found out at her last infusion as she went into anaphylaxis shock so no more Remicade. End of June onto Methotrexate, then Humira in November.

So here we are today... Still 10-14 bathroom trips, most days 1-2x at night. Some blood, not much, but almost every day.

Long story short (I know too late) I don't want surgery if I can avoid it. Am I missing something that should be tried? Should I be getting a 2nd, or 3rd opinion? What questions should I be asking besides the laparoscopic questions? Thanks.

 

[killcolitis]

Hi, I'm sorry to hear about your daughter's diagnosis and her current situation. We're in Toronto as well so likely treated at the same hospital. I'm guessing your daughter has CD (mine has a UC dx but you never know) and nothing but pred has helped her (coming up to 5 years soon). We just had a surgical consult. Other than the alternative treatments you've covered all of the meds available in Canada (there are more like Stelera (sp?) available in the US which work on a different pathway to the anti-tnfs and seem promising but we can't get them here yet). Have you tried imuran/6mp? I suppose you could try to add that to the humira and see if the combo works. It does carry some risks but it's an alternative. Good luck at your appointment, if you want to chat to someone local send me a PM.

 

[my little penguin]

I would get a second opinion anytime surgery is suggested.

Things to consider since she responded well to one tnf alpha it may take a different tnf alpha drug ( cimzia ) or more time higher dose etc of humira.
I know we had to increase the dose of humira for my son
And it took 3-4 months at the higher dose to start working .

Good luck

 

[my little penguin]

Oh and you can add Mtx or 6-mp to make humira more effective
Aslo adding formula only In addition is sometimes needed .

 

[If*]

Hello, sorry to hear things are not going well.
Some things you might want to ask. What parts are they thinking of removing and how much bowel. Is it scar tissue or inflammation? From what I have been told no medication works on scar tissue. What about EEN (all liquid) to try and get into remission if it is inflammation?
How is her B12? Being low can cause more D.
Is she having bowel obstructions? What about pain? Does she need to be built up weight/nutrition wise before surgery?
Sometimes increased D can be caused by inflammation or scar tissue ~ since the bowel swells only small amounts pass at a time - urgency increases = more movements.

Surgery can be a great relief for some - it can be such a difficult decision. I can't imagine it being mentioned casually. A second opinion might help but you need to know what is actually going on to help make a decision.

Peace to you and yours.

 

[Maya142]

My daughter, who was on Humira for arthritis not Crohn's, needed the adult dose of Humira weekly when she was 13. Once we increased the frequency and added methotrexate, about 5 or 6 months later she was miraculously better. She went from barely being able to walk and missing school 3 times a week to being a completely normal teenager.
I know doctors say 3 months, but sometimes meds need more time!

 

[SupportiveMom]

Diagnosis is crohns. Trying to update it in ny signature but it won't work on mobile. Will have to get onto a computer to change. Dani has crohns in her esophagus and in the section that connects her colon at top, near the rectum and patches throughout the colon according to her MRI and endoscopy / colonoscopy back in 2012. I know we are scheduling another endoscopy & colonoscopy soon to get hopefully a less inflamed picture. This I assume will determine what section would be best to cut out if any. Her B12 is low and we have been struggling to keep it up.

If I do all liquid at hone she will cheat. The month of TPN and no food was absolute hell and could have only happened in the hospital. She is a teenager and one that questions everything. I will ask about scar tissue. Good point.

3-4 months for Humira... ugh might just lose my mind!

 

[Sascot]

Sorry I don't have any great advice, just wanted to wish you well for the appointment and decision making.

 

[Tesscorm]

Sorry you're daughter is struggling so much!!! I don't have much more advice than what's been given. I was also going to suggest EEN but it's definitely a very challenging route to go and impossible if she's not completely on board. But, just a question, when EEN was suggested to you, was it through NG tube or taken orally (as a shake)? I'm just wondering if offered to her through a different method would make a difference. When my son was diagnosed at Sick Kids, he was pretty much told EEN through NG tube was the route to go (although steroids were vaguely offered as well) and, while my son was totally onboard with EEN, he was only offered the NG tube - oral shakes were never offered to us (at the time, I didn't even know they were available!).

If she, by any chance, is open to this... my son was allowed to have broth, freezies, jello, etc. along with the formula. While it doesn't make it less challenging by much, it did give him the option to have broth and freezies at lunch with friends and for dinner, etc.

:ghug:

 

[crohnsinct]

Oh gosh! So sorry getting her better is so challenging. At dx my daughter was put straight onto Prednisone and Remicade. Every time we weaned the prednisone, symptoms returned. Eventually the doc discontinued the Prednisone and wanted to add Mtx saying the Remicade just needed a little help. Rather than add Mtx I asked about EEN (thanks to the committee here). She did 8 weeks EEN and slowly reintroduced food and was in remission for over a year. We eventually added mtx but that was more for joint and psoriasis issues. Good Luck! I hope things start working soon!

 

[SupportiveMom]

Both ways were offered for EEN. Shake was the only way she would consider it and even that she now hates. A month of only shakes will do that I guess.
Cronsinct we are still on Prednisone, have been since Sept 2012 pretty much. At 30 mg and is the highest i will now go as it too makes NO difference. Metho, pred, Humira, prevacid, enemas, too many things when we aren't much better.