First Remicade Treatment

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newcrohnwife
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/30/2008 8:55 AM (GMT -6)   
My husband has what we now believe is ulcerative colitis (his previous doctor had told us that it's probably chrons but we've decided that guy didn't know what he was talking about....especially when my husband said the predisone isn't working and the doctor through his hands up in the air and said "what?  that always works")
 
So now we're dealing with what we believe to be uc.  Right now he's having a really bad flare.  In the bathroom every hour and in really bad pain.  Right now he's on predisone and colazal and tomorrow we go in for his first remicade treatment.  We're both praying that works (and works quickly) because the only thing he can really eat right now is chicken noodle soup and ice cream (with other foods a gag reflex kicks in).  But if for some reason this remicade doesn't work, is there a next step?  or are we looking at surgery? 
 
I'm coming to accept that surgery may be in our future (it's all happened so fast, he was diagnosed about a year ago).  Does that automatically mean a J-pouch?  It's the right side of his colon that is affected (about 30-40 cm up).  I don't want to ask the doctor, or discuss it with my husband because either way is fine and I don't want him to think he needs to worry about me if that's the next step we have to take.  If we have to deal with a bag we can.  I just need time to wrap my head around it if that's going to be our next step if Remicade doesn't work.  Or are there other medicines we can try first?  Hopefully remicade works.  If it doesn't I think my husband will spiral into depression (although he's already rather sad).  I'd like to have some other option to give him if this doesn't work to hopefully keep his spirits up. 
 
I know this is unbelievable hard on him but I had no idea how draining it could be on me as well.  It's so hard to see him up constantly throughout the night and in constant pain.  He has trouble even getting out of bed now.  We need some kind of relief because he can't live his life like this.  
 
Thanks so much (I think it was theraputic just to write all of this) 

Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 11/30/2008 9:10 AM (GMT -6)   
I suggest you read about the sunflower seed and spinach diet. I tried many medications and that diet is the only thing that put me into remission and its also helped other people on this forum. Don't overlook it because of its simplicity because it really works, its not a joke.
And ice cream is not good when you have UC, that much sugar causes most people more problems.

Post Edited (Cfromutah) : 11/30/2008 8:17:54 AM (GMT-7)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 11/30/2008 9:29 AM (GMT -6)   
I agree with Cfromutah with the Ice Cream, it also has lactose in it, he might be lactose intolerant. Remicade may work, I had no success with it though and moved onto Humira. That medicine worked for me, I was having horrible problems almost like what you have described above. So, there is a way out. I will be praying for the Remicade treatment to work, I know how horrible it is to not really be able to eat.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 11/30/2008 9:32 AM (GMT -6)   
How terrible for you-- give the Remicade a good chance, it can be a miracle worker! Try to get thru the loading doses, at least. He could always try Humira, some GI's will use that as another option. And he can also try cyclosporine- it's a classic "rescue drug" used for UC- it has to be administered in the hospital & requires a hospital stay, but it does get people into remission. And surgery is not a bad option either- at least his troubles would be over permanently.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/30/2008 11:15 AM (GMT -6)   
Remicade has worked pretty effectively for me. I was as sick as your husband was when I went in for my first treatment. I've been on it for over three years and talking to the nurses the other day at my infusion center, Orencia seems to be another up and coming med helping put people with Crohns and UC into remission. Also, I'm at the lowest dosage, so if things start changing, they can up my dose or I can go in every six weeks instead of eight. So, I do have other options, although if it comes to surgery...it is what it is, and it sounds like many have benefited from having the surgery.
Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


momtoangels
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 11/30/2008 7:50 PM (GMT -6)   

Hi everyone! This is my first post. Does anyone know if there is a forum or thread devoted to children with IBD? My 8 yr old was diagnosed in June 08 with UC. There have been many medical ups and downs since then, including 1 hospital stay and many med changes. This Wed. my daughter has her first Remicade infusion. Although I am petrified about short and long term side effects, I know this is what we have to do. She was on Prednisone (etc)from June-Oct 08 and has been on Imuran (etc) for 4 months and her symptoms are back full-blown. Any constructive input would be appreciated! I am also looking for a local support group. We live in Wilmington DE. Thanks for "listening". From, Ginny-Mom to Liza-8 yrs old-diagnosed UC in June 08


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 12/1/2008 11:24 AM (GMT -6)   
I think there is a forum called Dragon pack, specifically for parents of children with IBD- I feel for you, big time! I get panicky sometimes just thinking about how I'd feel if my 6 year-old started having IBD symptoms.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


marcr1178
New Member


Date Joined Dec 2008
Total Posts : 1
   Posted 12/1/2008 6:25 PM (GMT -6)   
This is my first post on here. My wife has UC. Last year she lost about 35 pounds because she wasn't able to keep anything in her system for more than 20 minutes. She has had UC for about 5 years. And believe me I know how exhausting it is for me let alone for her. Remicade has been the most effective treatment for her, but it is ridiculously expensive. For some reason her GI has gone away from it and is looking for other things to help. She was on imuran and prednisone, but she was getting worse with that mix, her fever would get to 104 to 105 during the night. I would wake up to her shivering like it was 5 degrees in our room, but she would be running a high fever. She is going to Shands in Gainesville this week to see one of the best Gastro guys in the country to explore alternative methods. I will keep all osted on what we here.

On a separate note, do any of the longtime UC patients smoke. We quit smoking about 3 years ago, and this is when the flare ups got even slightly noticeable. Just a thought, b/c one of the nurses asked if she had ever tried the patch during a flare up.

moe7
New Member


Date Joined Dec 2008
Total Posts : 1
   Posted 12/1/2008 7:42 PM (GMT -6)   
Hi this is my first post as well , I had uc and I had surgery years ago Regarding the smoking issue , I quite smoking after 6 weeks I started with my first signs of uc , at that time I didn't think it has any connection, after a while I spoke to someone who was on a certain diet and was on remission she told me that she smokes, once she quite for 3 days and the symptoms came back ,she started smoking again and she was back under control , a couple of month later I was in the hospital I got to know a doctor there (he wasn't my GI doctor) who showed me a study that from (I'm not %100 sure about the number) over 120 uc patient over 70 started with the UC 4-6 weeks after they quit smoking, so they were then trying if nicotine heals it, I asked my doctor if I should start smoking again (I was already in a really severe stage) he prescribed me nicotine patches in the hospital which didn't really help me, my doctor decided I should have surgery, but before, I was released from the hospital for 2 weeks to go home and smoke , I took the full advantage...... And started smoking heavy again, but after 3 weeks I had to have surgery......... (and that's along story by itself)
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