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Full fledged Flare after 3rd Remicade infusion--3rd time not a charm

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Ulcerative Colitis
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Posted 8/21/2011 12:44 PM (GMT 0)
My son made it 10 full days after the 3rd Remi infusion, then started to have some intermittent bleeding and the diarrhea started again. We have a full three weeks until his next Infusion.  One week ago, Dr took him off Asacol 800 and put him on Sulfasalazine 1000mb 3X day.  We havent been able to wean down the Pred below 15mg.  As of yesterday he is in a full fledged flare. He is supposed to start 9th Grade tomorrow.   cry

When I spoke to his GI on Friday his doctor said to me "Mrs.B....I dont know what it is going to take for you to understand that your son needs surgery...and you are running out of time".    I just don't understand how we could have already run out of options (aside from surgery) in the few months since his diagnosis in February. 

I feel as though his doctor is washing his hands of us since everything that he has tried has failed.  shakehead   When I speak to him now, he sounds frustrated with me.  I dont know how many severe cases of UC he handles but get the feeling that he treats mostly mild to moderate cases.

I started my son on Whey Protein shakes and Ultima Flora probiotic yesterday.   He is anemic and his HEMO is down to 9.9 and WBC count is up.    Dreading the possibility that we will be back in the hospital and they will pump him full of steroids again.  He wants off of them badly.  Between the hair loss, severe acne, moonface and depression, he is miserable.   He feels so cheated.  

Calling University of Miami Hospital tomorrow and considering changing GI's...but wondering if I am just putting off the inevitable.

Posted 8/21/2011 12:52 PM (GMT 0)
First, I am so sorry for your son and you.  I hate reading about kids who have to deal with this!  Well, I hate that ALL of us have to deal with this but for some reason the kids really break my heart.

I don't have alot of suggestions for you but...is his UC in the whole colon or limited to the left side?  Has he ever tried the enemas...I know, not fun at all, but for the left side it really gets in there and coats the colon.  There's a mesalamine enema and also a steroid one.

Barring that, it looks like you've tried lots of other things.  Other things people do on here are SCD diet, Transdermal LDN, etc.  Is he willing to try those things?

And have you gone to j-pouch.org?  There's lots of info about surgery there, it might help you make a decision...maybe it would be best for him? 

I am just throwing things out there, I don't know what I would do in his situation either.

Best of luck, I do hope he can feel better!

 

Posted 8/21/2011 1:08 PM (GMT 0)
MotherofTeenwithUC,

So sorry :(

I was hoping the 3rd time would be the charm for your son.

Perhaps it's time you give some serious thought to trying LDN, certainly before surgery, no?

You're in my thoughts and prayers.

Posted 8/21/2011 1:19 PM (GMT 0)
Definitely get a 2nd opinion, I have seen people on here that have not responded to any medicines quickly.

Sometimes I wish I had the surgery done 10 years ago, so I could have already gotten pregnant and not have alll the nasty side effects from all the meds. I wish I could have gotten these last 10 years back.
Posted 8/21/2011 2:00 PM (GMT 0)
Your GI isn't too crazy. I've only been diagnosed a year before I exhausted all medications. For some people, medication is the treatment. For others, surgery is the treatment they need. Remicade failed me after the third infusion. My GI gave me a 40% chance that Humira would work. He was right, the odds were not in my favor. Sure I could try Imuran along with Humira. Is it worth the immune suppression? No. Even if it did work, would it work long term? No.

Surgery is terrifying, but if you find the right surgeon it gives you your life back. Those who experience complications are the minority. I just keep thinking how I will be medication free and how I will never have to worry about when my next flare up will be. Good luck on your decision.
Posted 8/21/2011 2:04 PM (GMT 0)
I went through two different GIs that seemed so frustrated with me that I didn't respond to the meds. I thought they were just sick of seeing me because they didn't know how to help me! I wondered if I jumped at surgery too soon but in hind sight, I'm glad I didn't stay sick chasing more meds to see if something would work. And IF I did find something that worked, I think I'd just worry about how long it will work (like remi only worked twice) and I didn't want to go another few years just to be faced with surgery again. I guess that's negative thinking but really meds didn't seem to work for me! Prednisone didn't even work at all! To me, having this disease when you can't get it under control is like a lose lose... you just pick the lesser of two evils which for me was surgery.
Posted 8/21/2011 4:12 PM (GMT 0)
Mrs B., I hate to be negative and really surgery isn't negative, people generally have incredible positive results and only regret not doing it sooner, but it is possible that it will be the best solution for him. He is young and younger people bounce back so quickly. If I were in my teens or 20s, I would be so much quicker to have surgery. I know it is easy to say that but when you're in those shoes, you want to wait as long as possible.

Life with UC doesn't get any easier, trying to work and maintain stable finances while having this illness is extremely difficult. Honestly, I couldn't do it without my fiance.

There is a user here, Anthony1977, he is a friend of mine (from here) and he had surgery a few years ago after battling UC, none of the meds worked for him. He is an inspiration for me and he is so thankful to be done with this disease. If you want to speak with someone who has been through it, you should contact him, he is vey funny and would relate to a young man having surgery.

On the other hand, you should take your time and let him decide if he is ready. If he doesn't want to have surgery then by all means, try everything you can. Have you considered fecal transplant? You haven't tried the antibiotic combo, have you? How about trying an antidpressant? I started Pristiq a coupld months ago and about 2 weeks later my symptoms came to a screeching halt. I've recently read that antidepressants can have this effect on IBD/IBD. LDN is another potential option. Have you done allergy testing? SCD Diet? There are a lot of things you can try. Definitely consult with another GI and see what they say.

All I can say for myself is that anything is better than pred side effects.

I hope you are able to get off pred quickly and that he gets into a long remission.

Posted 8/21/2011 6:38 PM (GMT 0)
I would suggest having a c-scope to see if Remicade has actually healed any part of the colon. I ended up on Remicade less than a year after diagnosis and was still flaring after the 3rd dose. My GI pretty much told me that I would need to have surgery. We did a scopes to rule out Crohn's and found out that all of my colon had been healed except for the last few centimeters. So I canceled surgery, continued with Remicade and added rectal meds. That did the trick.

Have you met with a surgeon yet? A lot of people have had success with surgery, so it's something to consider. But I understand that it's scary!
Posted 8/21/2011 7:12 PM (GMT 0)
I was diagnosed in march and went through every med and was on pred and remicade by july.  I also had my second GI by then.  My first GI had me in tears when I left his office, he had no sympathy and was heartless and he yelled at me.  I left and never went back.  If you feel your son has more options he could try then surgery and you feel his GI isn't listening then I would get a second opinion.  It wouldn't hurt, it would probably make you feel better.  Also, when I started remicade it helped my symptoms after a couple infusion I went on it in July 2009.  I had a scope in Jan. 2010 and it showed my colon hadn't healed at all(maybe a tiny bit).  My doc wanted me to go off it.  I said I wanted more time.  She said your colon is only healed a really little bit.  She said I will give you six months. Well, it ended up being a year and my scope in Feb. of this year showed my colon was healed except alittle bit on my right side.  So, it took me along time to heal.  I had severe uc thoughout my whole colon.  I was in a flare for along time.  I was diagnosed about two years after my first symptoms and it took me a long time to go to the doctor.  By then I was horrible.  I pray my kids don't get this and I feel so sorry for you and your son.  I can't imagine having to go through this.  I think if he needs surgery it will be a good thing.  Maybe not now to you guys but in the long run.  95% of people are happy with the results.  He is so young and like someone said in a previous post.  He still has h.s., college, and a job, relationships etc.  I can't imagine going though this at that age.  I wish you the best of luck.
Posted 8/21/2011 7:27 PM (GMT 0)
I was on the highest dose possible of Remicade and Humira.  They did nothing for me.  The only thing that helped was Prednisone while I was on it but as soon as I tapered I would flare.  I did this for three years. I was extremely sick.

I started on LDN in March.  I added Welchol to slow things down and Metamucil and haven't felt this good in three years.  It may be worth a try.  I also  use rectal meds.  I find Canasa better than Rowasa.  I am certain it must have been the LDN helping get me into a remission.  After a month on the LDN things started to form up.  No bleeding. 

I hope he starts to feel better.  I felt hopeless too at one point. 

Posted 8/21/2011 7:35 PM (GMT 0)
I had the same thing happen to me with the Remi. So sorry your poor son is going thru this.

For some of us surgery is just unavoidable. If it comes to that for him, it's not the end of the world. He won't have UC anymore and he wont have to take anymore nasty drugs. He's young and he will bounce back quick. It's a very scary thing to face and I can't imagine being a parent that has to deal with this. I worry all the time my boys will inherit this from me.

J pouch surgery gave me my life back and I couldn't be happier with the results. It's an amazing procedure. Just a little more than a year ago I was on death's door and now I am 100% healthy for the first time in years. Best wishes to you and your son.

Marianne
Posted 8/21/2011 9:30 PM (GMT 0)
reading this has made me cry! i am so sorry for what your son and you are going through. i'm sure my mother feels the same with me and your son is so lucky to have your support, love, and determination.

i start remicade very soon, possibly this week, and i'm very nervous as well because my doctor said surgery is still a good option for me. if you don't feel comfortable with this g.i., definitely find another one. my g.i. is pretty intense and scary but he's very realistic so it makes me want to listen to him that much more.

you guys are in my prayers, truly.
Posted 8/22/2011 5:13 AM (GMT 0)
I am sorry your son is going through this, please be aware that exhausting the options fast is better than exhausting the same options slow. If you need some high level opinion, a friend spoke very highly of a person there you may to consult, here is her contact information:

María T. Abreu, M.D.
Professor of Medicine
Chief, Division of Gastroenterology
University of Miami Miller School of Medicine
Miami, FL 33101
Tel (305) 243-UMGI (8644)

Good luck!

Bpibe
Posted 8/22/2011 6:09 PM (GMT 0)
Thank you all for your responses.   You have no idea how comforting it is to have this forum where I can communicate to people that understand what we are going through. 

To Bpibe:  I had contacted Dr Maria Abreu's office this morning (before I read your post).  She did not have any appointments available until 9/28/11. I don't think he can wait that long.   I had been given her name by a wonderful woman who runs the local CCFA support group in Boca Raton.    She told me that she was a wonderful doctor.  Since she had nothing available, they gave me an appt with her colleague, Dr. Kerman.  We have an appt on 9/6/11.

My son actually made it to school for the first day of High School.   It was touch and go there and we weren't sure he was going to feel well enough.   He is still bleeding and I worry about the anemia.

He is using the Canasa twice a day.  It worked in the beginning but not so much any more.  We haven't tried the Rowasa...he told me "NO WAY" is he doing an enema.  But then again, I did get him to try the Canasa and it worked for a while.   It seems that everything "works for a while".

We have an appt tomorrow morning with another GI that we had seen for a second opinion and liked . I am going to ask him about the LDN.  I have been told that he deals with more severe cases of UC.

Question:  My son has only had one colonoscopy last February 2011 when he was diagnosed with UC.   How do I know for sure that he doesnt have any Crohn's?   What if they take out the colon and he does have Crohn's.  Both Crohn's and UC run on his dad's side.   He was diagnosed with universal Pancolitis, the entire colon is affected.   The doctor could not examine the entire colon when the colonoscopy was done because he was so badly ulcerated, they were afraid of perforations.  he only examined the left side up to where it turns. 

Thank you all for all your "shoulders" to lean on. 

My prayers go out to MustLoveDog's daughter.  I hope that she is feeling better soon and you know you can call me if you need a to chat.    :-)

Posted 8/22/2011 10:37 PM (GMT 0)
motherofteenwithuc, to rule out crohn's, my doctor did a ct scan with contrast on my abdomen and an endoscopy. the endoscopy showed a lot of stomach inflammation but he said that it was part of my u.c.
Posted 8/22/2011 11:20 PM (GMT 0)
I had a test called a small bowel series. It's a long 4 hour test in which you drink barium liquid in 1 hour intervals and they xray your abdomen and intestines in those intervals. They then study the pictures and they can see if there is anything going on in those organs. I wanted to make sure I didn't have Crohns and with this test and other bloodwork I had done, my dr. at the time was confident that I did not have Crohns and it was UC. I also have a family history of UC so I was comfortable with going forward with the surgery knowing I indeed had UC.
Posted 8/22/2011 11:21 PM (GMT 0)
I agree with bananagirl. My GI told me she would do the IBD test http://ibdtest.com/ (even though it is not seen as accurate) and an endoscopy, she mentioned some other tests she would do to rule out Crohn's before surgery but I don't remember. It may have been CAT scan or pill cam. I hope his appointment on the 6th goes well. Maybe there will be a miraculous recovery or there will be some hope with LDN.
Posted 8/22/2011 11:53 PM (GMT 0)
Surgery may be a blessing in disguise. Get it done and over with. Enjoy the rest of his life without worrying everytime someone mentions going on a trip, or even going out and doing something fun. Ah, to go back and do it over again knowing what I know now.... would do it in a heartbeat.
Posted 8/23/2011 12:27 PM (GMT 0)
Did the last colonoscopy show that the inflammation was continuous or in patches? If it's in patches, then it's more likely to be Crohn's. Also, Crohn's inflammation is deeper than UC inflammation. But to better rule out Crohn's, I'd suggest an upper endoscopy--the pill cam is the best option, if it's covered by your insurance. I think that the upper endoscopy is better than the barium x-ray, but I could be wrong.

The Cleveland Clinic is one of the best for GI matters. They actually have a clinic in Florida: http://my.clevelandclinic.org/florida/departments/colorectal_surgery/default.aspx

Posted 8/23/2011 3:22 PM (GMT 0)
I did not respond on remicade till 4th dose . 1st 3 doses were 5mg. Dr. doubled dose to 10mg from 4th dose on. He is now changing the space to every 6 weeks instead of 8 weeks. I actually had good results with tylenol 3 every 6 hrs. I stopped that after I found my self getting very irritable.
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