Daughter w/ j pouch on humira... at whits end!

[hotaylor]

daughter w/ j pouch on humira... at whits end!

Hello,
my daughter was diagnosed 1 1/2 years ago w/ ulcerative colitis at the time. She was incredibly ill and her weight dropped to 85 lbs, mouth ulcers covering the inside of her mouth, extreme pain, bloody stools etc... She spent two 6 week stays in the hospital and was treated w/ remicade initially. She bacame so ill that the doctors said she urgently needed to have a procto-colectomy and j pouch temporarily and that she would be "cured"!!! Well that was all we needed to hear. It wasn't until after surgery that the surgeon came out and said if that if she did have crohn's the j pouch would likely fail. This is the first time anyone ever told us that! My mind could not accept that as a possibility. Well, it does turn out she has crohn's, even though the biopsys don't show it her symptoms do, and has a couple more stays in the hospital since having her bag removed. She has mouth ulcers off and on, pouchitis, and a fistula, she is now getting sores on the outside of her mouth as well. She is being treated w/ Humira, initially every two weeks. We went and saw a specialist who made recommendations that I feel her doc has flat out ignored. She recommended that she go to weekly humira shots - her doc says he has never done that and was apprehensive but has agreed to 10 days. and if the humira didn't work we try other remicade again and maybe some combos. She recommended she have an MRI so see if there was an infection brewing begind the fistula causing it to be constantly inflamed - her doc gave her the usual CT scan that showed pouchistis as we all new it would. She had many other recommendations that he has flat out ignored and almost seems bugged by. She is in extreme pain and he is very critical of her taking any pain medication, even belittling her. He tells her she needs to accept her illness (she has!! but she hasn't given up on trying any and all treatment options) and is starting to be pushy about having the bag replaced. I feel they jumped the gun with the initial surgery and now ready to do that again without trying any other treatments.

I am so lost and heartbroken for her. She is young, beautiful and SCARED and sick and her life is on hold. She is up all night running to the bathroom and taking sitz baths and in pain all day. I don't know what to do anymore. Any advice would be greatly appreciated. I feel like her doc has given up and just wants to keep her in pain so she will have the bag replaced. I am in process of switching docs but he does see her in between other paitients and she is so sick right now don't know when the best time is. Has anyone had a j pouch later diagnosed w/ crohn's? What treatment worked for you? Any and all advice welcomed. :sign0085:

 

[muppet]

I'm SO sorry for your difficulty with this. You've just described my worst nightmare and the reason that after 10 years I've still not allowed my daughter, whose diagnosis is STILL technically UC, to have any surgery.

There's a surgery subforum here where you will probably get the best advice. I'm not certain how to link it properly but someone will soon I have no doubt.

Good luck to you and your little one. More surgery and meds may be in order but Crohn's is VERY manageable so don't get TOO worried just yet!!!

 

[muppet]

Also, I'm no expert on Humira, but I think that ten days is a prohibitively short trial period and that you may need to give it much more time than that to see the best results.

Almost nothing good happens FAST with this disease. Patience, research, and dedication rule the day.

 

[loulou]

Personally I would suggest a Second opinion and Fast , she shouldn't be allowed to suffer in this way and whaile yes drugs take time to work I believe what you actually meant was that they have altered the length of time in between Humira shots from 14 days to 10 is this right ? also I do not understand the reasoning behind trying remicade again as once you have had remicade and then stopped the treatment your body can build a resistence to this med and cause a severe allergic reaction you really need some Profesional advice fast and do not ever be afraid to question the Drs it is your right and they don't always get things right I would definately ask for a second opinion on this as your daughter and yourself need support with this , it also concerns me regarding her drs attitude on pain meds if she is in pain she needs the meds and if she has taken pain meds for some time her body can become used to these and they may need altering or even changing I wish you all the luck in the world , try to find a support group close to you that can give you the support you need as you need support in this aswell , I hope she is feeling much better very soon but remember DO NOT be afraid to question the drs also it can be helpful to take a note pad and pen to appointments so that you can write down any questions either you or your daughter wants to ask and also write down any infomation the dr gives as trying to take it all in at once is immpossible and this way you will have notes you can refer back to failing that with the drs permission a mini recorder to record what the dr tells you in appointment then you can refer back to it again and again all the best I truely hope you get the help you need x

 

[SdN]

Based on what I've read in your post I'd recommend you give serious consideration to taking your daughter to another doctor for another opinion.

To answer your question the treatment that has been working for me has been a combination of Remicade and Imuran. Initially I took Imuran alone and I had immediate improvements but earlier this year I had a flare and was started on Remicade. It's taken the Remicade several months to get me to where I am now but I'm almost in complete remission and crossing my fingers that I'll stay that way or better for years to come.

Good luck to you and your daughter!

 

[beth]

Sounds like weekly Humira is really required. Certainly worked for me and recently have been able to stretch out the interval to 10days.
Why do you have a specialist and a doc, and let the latter overrule the former... Weekly Humira is not radical/etc. It's very effective in achieving, and maintaining, remission with little risk of additional side effects. Your doc should be given marching orders.

 

[muppet]

I have to echo the question about a GP overriding your specialist. I know some people have a very core relationship with their GP but we barely see ours. Sarah sees her specialists and they rule the day. GP is basically just there for vaccinations and school notes.

 

[hotaylor]

Wow, I am overwhelmed and heartwarmed by your responses here. There are a few things I guess I need to clarify.
1. We are seeing a GI specialist as her regular doctor but I took her to Cedar Sainai to see Marla Dubinsky who is the head of the pediatric IBS department there and has done vast research and lectures on the subject. She is the one who recommended weekly humira and an MRI. So I guess that was the second opinion and her regular GI doc has ignored her recommendations. I am in the process of requesting a full copy of her consultation now.
2. She is going to a support group monthly. The only problem there is that her GI docs nurse runs the group so she doesn't feel completely comfortable expressing her frustrations of him as his nurse is pretty defensive of the doctors.
3. We have just started talking to a patient advocate who immediately recommended she change docs and I feel very strongly that she should as well. The problem we are facing with that the doc she has now will see her pretty much as needed and in between patients. The only other doc that would be a good match and is the director of the department has a full plate and she is concerned he won't have the time for her. With her being so sick again right now she has fear of not being seen when needed or the other doc being too busy. I am trying to push her to make the change but she has to be the one to make that final decision. I believe she will and it better be soon
I really appreciate the advice on weekly humira here and knowing that it has worked for others. I believe she needs some aggressive treatment quickly to get things under control.

 

[Goldfish]

I hope all improves for you soon and I really agree with everyone else that you need to changes doctors. He might see your daughter anytime she needs him but if he is not doing a good job and you have no real confidence then I would change. You need doctors who work for and with you but most importantly listen to you and your daughter. Best of luck to you both!