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Crohn's Disease Forum » Surgery » Daughter w/ j pouch on humira. dx'd w/ crohn's post surgery


08-11-2011, 03:40 PM   #1
hotaylor
New Member
 
Join Date: Aug 2011
Location: santa barbara, California
daughter w/ j pouch on humira. dx'd w/ crohn's post surgery

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.
08-12-2011, 06:59 AM   #2
acg101
Senior Member
 
Join Date: Jan 2010
Hi Hotaylor and welcome to our forum. Sorry to hear about the trouble your daughter deals with.
I was diagnosed with Crohn Colitis and had similar symptoms as your daugher had. After suffering for 15 years and tried virtually every single medication out there, I made a decision to have a procto collectomy surgery. I opted not to have a J pouch as the 3 GI i visited prior to the surgery suggeted that there was a 5 to 10% chance the CD will show up in the jpouch. Having the surgery changed my life to the better... I mean I have a life, enjoy everything, travel, eat, and play. I understand that for a youg person the decision mught be different. It sounds like your daughter immune system is still not under control which of course needs to be addressed first and foremost.
There is a new medication coming out code name millenium which might be helpful to your daughter.
__________________
-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
08-12-2011, 03:25 PM   #3
hotaylor
New Member
 
Join Date: Aug 2011
Location: santa barbara, California
Thank you so much for your response acg101, Dan . Addressing her immune system not being under control would be what the Humira is supposed to be doing, correct? I am going to take a look at the new med you mentioned here. Thank you again. I feel I have found a great place here to FINALLY help answer my questions that are constantly overwhelming me.
08-13-2011, 08:58 AM   #4
acg101
Senior Member
 
Join Date: Jan 2010
Thank you so much for your response acg101, Dan . Addressing her immune system not being under control would be what the Humira is supposed to be doing, correct? I am going to take a look at the new med you mentioned here. Thank you again. I feel I have found a great place here to FINALLY help answer my questions that are constantly overwhelming me.
You are very welcome. We are here to assist each other.
Humira as an anti TNF med addresses some aspect of the immune system. in my case, when I used Humira, I used in conjunction with imuran and antibiotics.
Please dont hesitate top reach out with any question.
10-28-2011, 12:03 PM   #5
slx03
New Member
 
Join Date: Oct 2011
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.
I feel your pain! My daughter was diagnosed with ulcerative colitis 6 years ago and it has been a journey...we tried all the different meds, nothing worked, at least for long. She always ended up sick in the hospital, even having to have blood transfusions a few times. We did remicaid for 2 years but it eventually stopped working also. So when the surgeon told us he could do this fancy J pouch surgery and she would be cured, we were all over that. The surgery was difficult...she had many complications and several stays in the hospital but finally had the reversal surgery last year. However, she hasn't been well since then. She has had pouchitis several times, lives on anti-biotics and then finally last month she ended up in the hospital again with 4 fistulas. Now the crohns word started being thrown around even though all the biopsies and tests say its not crohns. They had to do another surgery to put drains in the fistulas, so she has a bag again. He said it's going to take at least 3 more surgeries before all the fistulas are healed, and that's before we can even discuss reversing the ileostomy again. She just started on Humira so we are hopeful this will keep the flares under control. The problem is she's 22 now and has tried repeatedly to go to college, only to have to take off or withdraw because of this illness. Her doctor has told her that she really needs to stay in the area in order for him to be able to get her through this and all she can think about is when she can leave and go back to school. After breaking leases on apartments and losing tuition money I have to agree with him, even though all she wants to do is be "normal". I'm also worried that if we don't get her well and get her through college in the next couple years, she will be kicked off my insurance and then what? She will never get insurance on her own...

Sorry this is so long winded...the first time I have posted any of this anywhere. It helps to talk to someone that is going through the same thing. Unfortunately, because she just wants to be "normal" she refuses to talk to anybody even though she is depressed. It's like she is just suspended in life, just waiting for everything to be better before she can resume her life. If the Humira doesn't work, her GI said we can try Cimzia...but insurance won't pay for the Cimzia until she has an actual diagnosis of Crohns and since all the tests say she doesn't have crohns, we are stuck. I'm thinking obviously if you have joint pain, infections, 4 fistulas, etc, it's not ulcerative colitis since she doens't have a colon anymore. Please keep in touch and post how things are going. It seems we may be at similar legs of this horrible journey...and do find another doctor, we are so blessed to have an awesome GI, I think that's half the battle.
10-28-2011, 02:04 PM   #6
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
Hi and

I'm so sorry to hear about your daughter, what a very difficult worrying time for you all...

Do you know what it is about the tests and biopsies that say it isn't Crohn's?

I hope your daughter is able to get some solid answers very soon and find a treatment that works for her. It's so very hard to watch them suffer.

Good luck and keep us posted.

Dusty. xxx
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Mum of 2 kids with Crohn's.
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