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Is this all normal for Crohns/Colitis?

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Posted 2/28/2008 4:48 PM (GMT 0)
Hi.  My 17 yr old daughter started flaring at the end of Dec.  Her flares are always bloody dir.  She was dx in 2003 with crohns/colitis.  This is her 2nd flare since dx.  Tried 40M pred.  (didn't work), put her in the hospital for 4 days on IV steroids (didn't work).  Started Remicade in the hospital, seemed like a miracle drug the first week and then down hill the second week.  Last weekend she was up every hour in the bathroom.  She had her second dose of Remicade two days ago.  Since then she is still up at night about every two hours in the bathroom.  Not always with a bowel movement but always with gas and blood.  Her sed rate a month ago was 10, in the hospital it was 35 and two days ago it was 45. She has had blood in her stool every time she goes for the past two months.  Her tummy is also hurting alot and she was nausaus this a.m.  Besides the Remicade she also takes Fish Oil, Nexium, Predisone 30M, Multi Vitamin, Allegra.  My questions are:

Is this all normal for a flare up?

Is there still hope for Remicade?

Is there other people out there who bleeds every day for this long?

Just want some input so I do not feel so alone.

Robin

Posted 2/28/2008 4:52 PM (GMT 0)
Well it's a very bad flare for sure. The problem with this disease is that no one drug works for everyone all the time. I would not however give up on remicade this early -- sometimes barious medications take more time than we would like to work, and it may be that if it does not, there is something else that will. And yes, bleeding is not uncommon in flares for many patients. With her escalating sed rates it makes sense to assume she has a lot of high-grade inflammation going on inside, which would lead to open ulcers, which would explain the persistent bleeding. Hope something kicks in for her . . . you may want to look at another colonoscopy to see what is going on inside, and if there is something surgical that could be done.

Posted 2/28/2008 4:59 PM (GMT 0)
is she taking echinacha (SP?) check her multi vitamins to make sure it is not in there. I have heard taking it can cause symptoms like what you are describing
Posted 2/28/2008 5:12 PM (GMT 0)
I am not sure if that is in her vitamin or not.  I will make sure that I check when I get home.  Thanks!

Posted 2/28/2008 5:33 PM (GMT 0)
Let me know if your daughter needs someone her age with the disease to talk to. I'm sure Ally wouldn't mind. I agree that you should not give up on Remicade yet.

Posted 2/28/2008 5:33 PM (GMT 0)
I bleed every day for months on end.  And, the same issue with the mucus/blood bathroom trips.  I am thankful that right now it's not every hour.  Mine seems to be most prominent during certain times, like morning and night.  Then it's several times in one hour or multiple times at night.  Which is hard for sleeping!

Remember that even when Remicade works, it still takes time to heal the ulcers.  By the third infusion she should be feeling better.  If not, I would discuss it with her doctor.  Remicade worked great for me, but never lasted the full 8 weeks. 

I haven't had my sed rate tested in a couple years (going with C-Reactive Protein as the inflammation marker now), but my sed rate used to hover around 40 when I was in a bad flare. 

Posted 2/28/2008 5:47 PM (GMT 0)
Bleeding with crohns-colitis is fairly common, as it's more common to bleed with one who has ulcerative colitis, inflammation in the colon tends to cause more bleeding problems...I've had crohns-colitis for going on 17 yrs now without ever being in total remission, I didn't have much bleeding until after the 10 yr mark, at first it was just a bit on and off and then at one point it was heavy and frequent...it all depends on what the flare is doing since so many symptoms can and don't happen during flares. Also each flare can differ.

Rectal meds might help with bleeding but are more prone to help if proctitis is an issue (inflammation of the rectom which can also include bleeding) it is best she see her doc about this since CD can affect any part of the GI tract from mouth to anus and more than one area at a time.

:)
Posted 2/28/2008 5:48 PM (GMT 0)

Allys mom - I appreciate that and make take you up on that.  Right now Brittany does not like to discuss it.  She likes to pretend with her friends that everything is normal.

s5599 - Brittanys symptons are just like you describe it. Yesterday seeemed to be going better and then at night she is up all night.  Either going or feeling like she has to.  Last night she was up at 11:30, 1:30, 3:30, 6:00, 6:30, 6:45. The later two time just feeling like she had to go but didn't.

She just called me and asked to go home from school because her stomach is hurting.  Is stomach pains common?  Is there anything that you can do for it?  I told her to try some tylenol.

Thanks everyone for your replies.

Posted 2/28/2008 7:23 PM (GMT 0)
I use a heating pad on my belly when it gets bad. They sell the type for the back that strap around the waist, which is convenient. It allows me to move around and still keep the heat on it -- relaxing it, I guess. Tylenol is the only thing (aside from narcotic pain meds) that we are supposed to take. Ibuprofen works great, but could well increase the bleeding. My doc has recommended against all those: ibuprofen, Aleve, aspirin. Makes it tough for pain...

My doctors have told me that bleeding is not dangerous up to the point I lose significant amounts of blood, which has only happened once. So, while the bleeding needs to be explained to the doctor, and is a definite sign of a bad flare, it is not in itself threatening. It's all part of it. Not to say ignore it at all... just don't let it be terrifying. (It was for me at first.) The anxiety doesn't help!

I experience pain in the pelvic region, around the bladder. This is because my rectal region is severly inflamed. Sometimes the pain is elsewhere, and it's different every time and for every person. Right after I hemorrhaged last summer, I had no pain whatsoever. Weird. It's so hard to predict and so very frustrating. Hopefully the Remicade will kick in for her sooner than later! 30mg Prednisone is a high dose to have that much symtoms with! My sympathies to your daughter!
Posted 2/28/2008 8:09 PM (GMT 0)

Hi I am a new member. my name is Bionic. I have suffered from CD for about 15years. my flare ups are every two months and my doc says i should go for bowel resection. Don't know if this will be the thin end of the wedge or will it help. Scared of ending up with a colostomy bag. I am on Immuran, and salozopyrine and during a flare up on cortizone and flagyl. I sometimes have to go to hospital to get IV meds during a flare up as I don't seem to br able to heal on oral meds.

Posted 2/28/2008 8:14 PM (GMT 0)
My daughters dr is not a big fan of surgeries.  I think because of her age.

Posted 2/28/2008 8:22 PM (GMT 0)
My daughter also uses a heating pad often. Her GI gave her a prescription for bentyl, which she says does help some. Hope she is feeling better soon - it is very rough on them and on us as Mothers. Much love and laughter to you!
Posted 2/28/2008 10:04 PM (GMT 0)
Hi Ohio! Unfortunately I know what your daughter is going through. I had about a three month flare in which I was having bloody poo 10-15 times a day (I was basically "peeing out of my butt"). It go so bad I started having accidents. I had started Remicade during the flare and it helped for less than a week and I started flaring again. I ended up getting hospitalized and my doc put me on TPN for a little over a week. I was not allowed to eat or drink anything for the first few days and then he let me start sucking on ice and eventually drink water. I got another remicade treatment when I was hospitalized and also had a constant prednisone IV. After five days of not eating I finally stopped pooing. They reintroduced food (low residual diet) and I was able to go home. I was in remission since mid November and have (unfortunately) started flaring again, though it is a very MINOR flare. I have cramping, gas, and blood, but not nearly as bad as it was. I am due for my next remicade treatment in a month and my doc put me on entocort b/c he wanted to avoid putting me back on prednsione (I usually relapse 3-6 weeks after tapering off the prednsione, which is what happened this time). I hope she feels better soon, sounds like she needs some serious bowel rest! It worked for me, but like they say, no two Crohn's patients are the same. Will keep your daughter in my prayers =)
Posted 2/29/2008 3:32 AM (GMT 0)
Robin,

Your Daughter sounds like she is in a pretty nasty full fledge flare. YES, there is still hope for Remicade to work, BUT, it might take several infusions to get everything calmed down. My own Daughter was in pretty dire straits when she started Remicade and it took several infusions until we could say that the Remicade was successful. Also on Imuran and Asacol with the Remicade.

Since your Daughter's diagnosis is Crohns/Colitis just like my own Daughter she may need a rectal med as mentioned in another post here to calm the inflammation and bleeding down in that lower colon/bowel.
My Daughter used to do 3 week courses of Rowasa enemas which worked fast, efficient and like a charm
when her regular oral meds (before Remicade) weren't working to keep the bleeding in check.

Hoping your Daughter gets to feeling better soon.
Posted 2/29/2008 4:25 AM (GMT 0)
I was in a constant flare for about 15 years with heavy bleeding and pain daily for the entire time. You can bleed like that for days and years on end. I agree with the others who write that your daughter may need some rectal meds. I might also suggest having her go on an Ensure only diet for a while. It helps with the pain. I hope your daughter's doctor can find the right combination of meds to help control things.
Posted 2/29/2008 2:29 PM (GMT 0)
I was just wondering if stomach pain and racing heart beat is a common side effect from Remicade.

Also, we have tried Rowasa and they made her flare worse.

Thanks everyone for your replies.

Posted 2/29/2008 3:12 PM (GMT 0)
Stomach pain is very normal and common, unfortunately. I had a reaction to Remicade which caused my heart to race, pound very hard and I felt pressure in my chest area. I would absolutely tell the doctor about this. That said, heart beat can increase with fever and/or loss of blood.

It takes a little bit of time for the Rowasa enema's to work and for a person to get used to the pain caused by them. However, if Rowasa makes things worse, she could try the Cortenema or Cortifoam type products as well.
Posted 2/29/2008 3:18 PM (GMT 0)
Steroids will cause my heart to race. Sometimes I can see my chest thumping! Asacol made my flare worse -- I'm glad you guys caught the Rowasa reaction quickly! No need to make things worse. I never felt any side effects from the Remicade. It just helped.

BTW, I am also Crohn's-Colitis... Orginally dx as UC then switched to Crohn's with pattern of ulceration/fistula.
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