Another question for the regulars?

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73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 1/14/2009 8:22 PM (GMT -7)   
As many of you are coming to realize by now, I have an incessant desire to find out everything I can about this curse of a disease that has afflicted my daughter. I'm afraid that I might be becoming abit annoying with my updates of my daughter and questions/problems. 
 
For those not familiar, my daughter was recently hospitalized with an abscess with fistula off of her small intestine. She's been home since Christmas, and on her 3rd week of Prednisone, and Flagyl. She seems like she's been doing well, we're having another problem with starting Imuran, but that's explained in another post, and I won't get into that. 
 
One thing over the last few weeks her bowel movements have changed. Her stool is well formed and larger in diameter than she's used to. Since being diagnosed they've always been smaller in diameter. I figure this means that the inflammation is cleared with no scarring or stricture. Am I right to assume that?
 
Which brings me to my question/problem that arose today. She told me that there was some bright red blood at the end of her stool. This is the first time this has happened. Is this an indication of some other problem developing? 
 
I really didn't need something else to worry about right now. Another thing most of you might be realizing by now, is that I'm borderline neurotic about this disease. Oh, I do my best to hide it, but I'm probably the absolute worst personality type when It comes to dealing with this. I know I've gone off into a rant, and I'll stop it right now. 
 
Thanks to everyone that have responded over the last month. It's been so helpful. Sorry to get so long, (Again).
 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/14/2009 8:29 PM (GMT -7)   
A little red blood with a stool isn't a big deal, could just be a hemmie or maybe from a fissure. Mention it to the dr but don't worry too much about it.
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/14/2009 8:39 PM (GMT -7)   
Sounds like a hemmie to me as well. It's definitely a change of consistency in that area as well so it's understandable if there is a little bleeding. Bright red usually indicates something that is not deep in the body.

And don't think for one second that your updates are annoying. Please, keep posting...We don't reply out of obligation. I believe there is sincere concern for you and daughter :) I know I don't just speak for myself.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/14/2009 9:31 PM (GMT -7)   
You're doing fine monte! Don't be so hard on yourself.

The prednisone has the potential to lessen inflamation and calm down the tract, so it make sense that her stools are larger. Prednisone is not permanent, though, as I'm sure you're aware, so keep a close eye as she tapers down.

And you've gotten good advice on the blood, too... it definitely sounds like a hemmie... which, like stated above, makes sense when the stool is a little larger and maybe a little more strained.

Give it time. Be vigilant. You're doing awesome.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/15/2009 7:43 AM (GMT -7)   
I agree with all of the above. This is just because the stool is more formed and harder due to the Pred and has probably irritated an internal hemi. No reason for concern.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/15/2009 10:16 AM (GMT -7)   

Thanks Everyone,

Hopefully no cause for concern. She just came home early from school. Incredibly tired and falling asleep in class. I'm wondering if the Flagyl is causing this, as the last time she was on Prednisone, she had unbounding energy.

Tom


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 1/15/2009 10:44 AM (GMT -7)   
Tom,
Her exaustion could be that she is just getting run down from the disease. I know when I push myself to keep going I end up having days where I just crash. I know as a teen they sometimes just don't want to give in. This can be especially hard when they are dealing with a chronic illness.

The flagyl can definitely add to it as well. I think any antibiotic can do that, but especially these stronger ones that we have to use.
I hope she is feeling bett soon and can get back to just being a teen.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 35 mg prednisone, probiotics, calcium, B12.
For asthma I take Advair 500, singulair, arieus


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/15/2009 10:55 AM (GMT -7)   

Hi Tanya,

I'll be honest, Sometimes it seems like she's never going to be able to get the life she had back. I don't want to sound negative really. We'll keep hoping for the best. I might feel better if there wasn't so many other problems this time round. I"m worried about the abscess healing of course. Then there's still no maintenance plan of action yet. 

Thanks for your imput, particularly about the antibiotics. Hopefully that's what's getting her down. She only has 2 more weeks of Flagyl, so we'll see.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 1/15/2009 11:48 AM (GMT -7)   
Tom,

You sound like me for the past 2 months. I just want my life back. I had been flaring since last February, then the surgery in October and all the complications after. I just wanted my life with my family back!
Finally this week I am feeling half normal - or normal for me. And I am thinking "FINALLY"

I know your daughter will get to the same place. It just sometimes takes a while with us Crohnies. And in the end we sometimes have to realize our normal probably isn't going to be like the person's next door, but with the right meds and treatment we can get pretty darn close sometimes.
As long as there is always a bathroom close ;O....LOL

Try to keep your head up. Once this abcess heals up for her things should start looking up for both of you.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 35 mg prednisone, probiotics, calcium, B12.
For asthma I take Advair 500, singulair, arieus


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/15/2009 12:04 PM (GMT -7)   
Hi Tom,

I'm so glad your daughter has such a caring and involved parent! Flagyl always made me feel drained, plus inflammation of any sort anywhere in the body causes fatigue. She needs to go with it -- rest and give her body a chance to heal. Its just going to take time, and the more she rests, the faster she will heal.
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/15/2009 12:48 PM (GMT -7)   

Thanks guys,

I guess what you're both saying is, to be patient, and she'll get there. It sounds so good. I really wish I could totally believe it. I'll certainly try to get more positive. I'm basically a skeptic, doubter, and a worrier. Those are good qualities aren't they?


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/15/2009 1:00 PM (GMT -7)   
All the advice you have gotten so far has been right on. But I wanted to add one more point.  Did I read someplace that your daughter was tapering prednisone too?  Because that could add to her fatique also.  I would notice it sometimes days after the drop in dose, not always right away.  Either way, drug related (flagyl or pred) or disease related, the best thing for her is to rest.  Then again, what normal teen doesn't have their days when they are just dog tired?  She's just lucky she has a wonderful support system!
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/15/2009 2:09 PM (GMT -7)   

Hi Suzanne,

Thanks for the advice. She is tapering, but is only down to 30mgs, so quite a ways to go. If i could inquire. I'm always amazed at everyones signature. Sometimes it can tell quite a story. I'm often shocked at just how bad it can be for some. 

You indicate that you had 3 resections, every other year, and now no other surgery for 12 yrs. That sounds like a pretty good run, but the stretch from 93-97, must have been fairly demanding. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/15/2009 4:15 PM (GMT -7)   
One thing to keep in the back of your mind, Tom... this disease is finally getting the attention and research that it deserves. There are TONS of new treatments available, just since I was diagnosed myself 5 years ago. And, in the last 5 years, I've had more good times than bad. The bad times can be REALLY bad, like what you're going through now, but your daughter is just starting off - she has TONS of options and will have more every year. I know a lot of people on here have had multiple surgeries and parts removed, but I've managed to hang on to ALL of my intestines, and I'm still hopeful that some day soon I'll find something else that works wonders for me like Remicade did for so long. When I was feeling good, I'll sadly admit, I was pretty much a stranger to this place. I come here when I'm down and need help, but sometimes I forget to pop back in and say how good I am when I'm up. Your daughter will be "up" again. It's not all stress and blood and stool all the time!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/15/2009 4:27 PM (GMT -7)   

Hi Patientspiders,

What you're saying is the one postive thing I'm clinging to. The hope that the treatments will improve to the point that this disease is easily managed, and without risk. I admit, in the last 2 yrs. that my daughter was seemingly okay, I only rarely checked in here. 

I see you're using LDN now. Hope it's working for you. It's not available here in Canada yet for Crohn's.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 1/15/2009 5:17 PM (GMT -7)   
Well... technically, with Crohn's, it kinda can be hard to get life back to exactly as it was.... Like... Right now... Even though, I'm very well, I still have to avoid some of the foods that I love very much (chocolate, how I miss it) in order to stay feeling well...

And I agree with everyone else here in saying that it probably is a hemmorrhoid that she's dealing with... Dunno if you've ever had those before, but they can get pretty uncomfortable...

Might want to invest in getting her some Preparation H (or something similar), so that way if things get to the itching and burning level, she'll have something for relief...

*I know, kind of an embarrassing subject to talk about, but... Well... This IS a bowel disease.* //^_^\\'...

At any rate, please do not feel bad for giving us updates!! If you didn't give us updates, WE'D probably start worrying...

It feels good to help people... You're not being annoying, in the least... Like someone above said, don't be so hard on yourself. It's not like you're spamming the forum or anything like that... so... Relax...

And keep us posted, okay? :)
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/15/2009 6:09 PM (GMT -7)   
Tom,

I think my 3 resections can be traced back to my being undiagnosed for 10 years and CD working its little magic on a microscopic level. Each time I had a resection the doctor only took out what was absolutely necessary, so I believe there was some microscopic damage left and it took 3 tries to get it all out. My Mom had CD, and I have at least 2, probably 3, other relatives with IBD, so I knew what I was looking at when I was 13. But the doctors didn't believe me.

Since my resections, I have been on maintenance drugs. I still have my bad times, but I believe they are essential to ALL IBDers. And as posted above, there are so many new drugs available now, and coming down the line, its just a whole new world. I have two daughters who both show possible signs of IBD. Nothing to the point of testing yet, but with my history, I worry constantly. I also, have hope, since I know how much has changed since my Mom was diagnosed in 1965 and I was diagnosed in 1988 and today.

Sending you and your daughter best wishes and good thoughts.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/15/2009 6:58 PM (GMT -7)   

Thanks Celey,

I'm sure I will keep posting updates, and especially questions. I have a never ending supply of those. 

As far as the hemoroid thinking, I really don't think it's that, as she hasn't complained about any discomfort in that area. Perhaps, the larger stool caused a tear. I'll keep an eye out for any more blood.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/15/2009 7:06 PM (GMT -7)   

Suzanne,

You touched on something that I think about all the time. I have a younger child as well, and worry all the time about him getting this. I really hope your 2 girls don't have this. Your Mom must have suffered immensely back then, considering the limited treatment options.

Tom

 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.

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