Crohn's severity questions?

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73monte
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   Posted 4/27/2009 10:33 AM (GMT -7)   
My daughter had a regular GI appt. today. Things seem to be okay, our GI is impressed with her recovery, (abdomial abscess/fistula at Christmas), She did state that she feels that Holly's Crohn's is aggressive, and refered to it as fistulizing, which was a bit scary to here. I asked her if the disease became aggressive because it wasn't controlled well enough medically, (Pentasa only for 2 yrs.), or would it be aggressive no matter what treatment was used. She said that there would have to be a study done to really find the answer to that, and that is was a very good question. 
 
Does anyone have any imput about this. Would she be presenting as a severe case, or if medication, (Imuran), works, could she remain mild to moderate
 
Thanks, Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 4/27/2009 11:54 AM (GMT -7)   
From what I've learned according to my CCFC journals, according to a Dr.Kevin Rioix he states that in the past few yrs, advanced genetic techniques have allowed scientists to discover at least 9 different gene clusters that contribute to the development of IBD and define the severity and behavior of the disease over time. Some of these genes encode factors involved in recognition and defense against bacteria. Mutations in the immune response genes reacts to harmless bacteria and this probalby contributes to the development of IBD.

Taking from the first paragraph I'd say that because of genetic make up which is very individual, genes can definitely have the final word so to speak on how each of us are affected by our disease, meds or not, but although I've never been on oral RX for a long enough time (either allergic or non-responsive) I'd have to say that I have not (in my 18 yrs of having this disease now) gotten worse necessarily, I've always been flaring and for the most pat it has been severe with some episodes of it being moderate but these last few yrs are probably the mildest I've ever been (of which I've been using the naturals listed in another post here at the crohn's forum) now it may be coincidence that since using the naturals I've been better than I've ever been (including altering my diet and regular exercise) but I also don't expect to ever go into full remission either as I never have been.

In your daughters situation I'd say she's severe especially since fistulas are involved but going by a doc scale of severity I don't know how they'd rate her cuz I know they love to use frequency and stool consistancy to rate flares, but I would assume they would at least rate her as moderate at this point at least and once her fistula clears up depending on what other symptoms are going on (frequency and stool consistancy) she very well could go into full remission. Which is exactly what I'm hoping for her.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 4/27/2009 12:10 PM (GMT -7)   
Tom,

As you know I have had this disease for over 30 years. My first flare was very bad, but since then I wouldn't say my Crohns has gotten worse. Yes, I have had 2 resections, but that was due to obstruction. But since the surgeries I have pretty much gone back to my remission state.

I do know that most folks are usually the sickest when first diagnosed and once they find a med combo that works they usually are able to go into remission and do well.

Most Crohnies are able to live relatively normal lives (naturally with the occasional flare). Its always important to take some kind if maintainence med if you can, to always keep the inflammation levels down.

Good luck,
Gail *Nanners*
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"*

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 4/27/2009 12:26 PM (GMT -7)   
Since Crohn's is determined by in part by genetics, my view is that one is predisposed to a certain level of disease.  How sick you actually become is dictated by environmental triggers, medication you take, and age--probably it can change over your lifetime. That's just my opinion--I'm no expert.
 
Based on that logic, a person "has" aggressive Crohn's no matter what medication they are currently on; it's always there in the background, and could become very severe illness if given the opportunity. But with adequate control, symptoms could be much milder. I thought the mild/moderate/severe designations had more to do with your current symptoms than the overall pattern of disease behavior.
 
To give a brief summary of info you can find in a journal article (ref below):
 
Doctors classify Crohn's based on age of onset, location, and behavior. The three patterns of behavior are perforating (fistula/abcess/perforation type), stricturing (fibrostenotic stricture/obstruction type), and nonperforating/nonpenetrating (inflammatory type). Based on your daughter's fistula she falls into the first type, which is unfortunately probably the most complex and aggressive form, and often requires a combination of medical therapy and surgery. Fistulas can be quite difficult to treat once they occur, so that is probably a strong incentive for her to stay on medication, with close monitoring by her GI.
 
Good luck.  
 
 
Are there different types of Crohn's disease? David B. Sachar, MD
Inflammatory Bowel Disease Volume 14, Issue S2, Pages S75-S76


July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E


73monte
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Date Joined Mar 2007
Total Posts : 1496
   Posted 4/27/2009 5:47 PM (GMT -7)   

Thank-You all for your informative responses. It seems that there is a consensus, (sp.), that severity is dictated by symptoms, and that a genetic predisposition will give the best indication of the course of the disease. 

So, if for example, you have developed a perforation and subsequent fistula, does this mean that the liklihood of this becoming a pattern is high, or could it be a result of imflammation that wasn't controlled? 

I guess what I'm asking is just what I'm forever worried about, which is, is it possible or likely that my daughter can have this disease under control, or is it likely that the course of the disease for her will be a constant nightmare of out of control complications? I know that no one can predict the course of this disease. But there must be some percentages or odds of whats likely. I really wish I could get some peace of mind with all this. 

Thanks again,

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 4/27/2009 6:17 PM (GMT -7)   
Hi Tom I think in Holly's case that she will need to be monitored to make sure things don't start popping up like fistula's. .Tom I have had severe crohn's with fistula's and abscess and although I had to have a resection I am now doing very good.. so it is possible for her to get better and become fairly healthy. I am thinking her Dr. is aware of her condition and will keep a good watch on her . If she feels good and is improving that's a really good thing.So happy to hear that her GI is pleased with her progress makes me happy to know she is doing so good. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/27/2009 6:23 PM (GMT -7)   
73monte it could be both situations...I know there are crohnies that tend to lead towards fistulas and many that never experiance a single one (like myself) and there are also stricturing crohnies too (again not my criteria thank goodness) but I believe it's likely based more on the genetic behavior of why some crohnies are prone to fistulas and such though that does not mean that ones that aren't prone won't ever get one either...same with strictures and such.

As mentioned, due to her situation she should be continually monitored.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 4/27/2009 7:56 PM (GMT -7)   
To sum all this up, everyone has different views and experiences. Lots of trial and error even for doctors. Plenty of contradicting research that goes down several different paths out there. I hope she is one of the lucky ones, plenty of years of research in her lifetime coming :)
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 4/27/2009 8:55 PM (GMT -7)   
I think Illini said it best, there are probably subsets of IBD. If she's had fistula's then there is probably a higher chance that she will get another one during a flare than say, someone who's had IBD for 20 years and never had a fistula. Some people get strictures more easily than others because that's the type of CD that they have. It's just because we're all a bit different.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 15mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

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


Go Saskatchewan Roughriders!


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 4/28/2009 10:37 AM (GMT -7)   
Hey tom,
I have had crohn's for quite a few years now. Normally I deal with strictures. But as you may remember, after my recent surgery I started having troubles with abcesses that were not related to the surgery. Since those 2 have healed I haven't had further trouble with that but have had more troubles with stricturing and just plain old imflamation.

So in short, crohn's can change throughout it's course and be different everytime you have a major flare up.
I really don't know what else to say to ease your mind about all this. Keep your head up and enjoy the progress she is making.

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.
Fibromyalgia (allergic to Lyrica)

Tried: Pentasa, Cholestyramine, Asacol

Presently taking: now on Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 4/28/2009 11:24 AM (GMT -7)   
Everyone has already given great responses, but I thought I'd let you know about my brother who was diagnosed at age 12. He was diagnosed with aggressive stricturing and fistulizing Crohn's (he had surgeries for both). None of the meds helped him (6MP, pred., pentasa, etc) and he was constantly in the hospital until he tried remicade. At that time, it was still in the trial stages, so it really was a last resort. However, he has been on remicade for about 10 years now (I forgot when exactly he started it, it could be longer), and since remicade, he has not had another hospitalization or surgery. So, it is possible that the right medication can help your daughter function somewhat normally, however, as others said, she will probably always need some sort of monitoring.
Dx with Crohn's Colitis; Meds: Pred and Imuran; female in late 20s.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/28/2009 11:31 AM (GMT -7)   
I agree with catpower, couldn't have said better. With the right treatment she could go on and have a great future.
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"*

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/28/2009 11:50 AM (GMT -7)   
It might be helpful to check out this website. It's a Medscape article regarding fistulizing crohn's disease, different therapies to treat it, and the results from the studies done. Good luck!

http://cme.medscape.com/viewarticle/587064_5
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


73monte
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Date Joined Mar 2007
Total Posts : 1496
   Posted 4/28/2009 6:24 PM (GMT -7)   

I really appreciate these responses.

britt: That was really informative Thanks for the link.

catpower: It's always good to hear about others that are having success. I'm hoping for the same. 

Hi Tanya, Thanks, I'll try to "enjoy the progress".

From the beginning of this whole ordeal, I've been trying to get a realistic grasp of how things are, and what to expect. I fully realize that no one can predict the course. I would just like to hear about what I could hope for. As for the current dilemma, I'm choosing to believe that this complication is a result of not treating the disease with enough maintenance. I really don't think that Pentasa was doing anything, so that it was sort of like being on no medication at all. I'm not sure if the Imuran is actually working, or will show long term success, but if she had of been on that for that last two years, perhaps none of these complications would have presented themselves, and would therefore not be viewed as such a severe case. Does this sound reasonable? 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/29/2009 8:37 AM (GMT -7)   
I am a firm believer in medication. I believe that diet can help with symptoms, but it can't heal the damage the disease does the same way as our meds can. I think once Holly gets the disease under control you will see her feeling better and able to enjoy her life again.

Hugs
Gail *Nanners*
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"*

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 4/29/2009 1:21 PM (GMT -7)   
Tom,

Studies disagree on whether Pentasa is better than placebo at maintaining remission long-term. Meta-analysis--basically, combining the results of multiple studies into one big study and doing the analysis again--showed that 5-ASA's worked best for Crohn's post-surgery, in the ileum, or long-term disease. So, your suspicion that it wasn't helping, might be right. Moving to Imuran is the next logical step in the approach doctors generally use in treating Crohn's. Based on the location of her disease, enteral nutrition is another option.

The only medical interventions that definitely maintain long term remission better than a placebo are Imuran/6-MP, for up to about five years, and methotrexate and the anti-TNFs.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1496
   Posted 4/29/2009 3:32 PM (GMT -7)   

Hi Illini,

There does seem to be alot of conflicting views about 5asa treatment for Crohn's. If it does work for some with milder symptoms then that's hard to argue with. We had several GI's attending to my daughter when she was hospitalized. A couple of them suggested that Pentasa was like using a "salt shaker" on the imflammation. 

There seems to be a better consensus on 6pm or Imuran. I've done about as much as I can to educate myself about this medication. If it does indeed work for her, then the question of how long will become the next concern. I've read many testements of long term success with Imuran. Some ever 10-12 yrs. 

P.S. I can't help wondering about your signature. Was your liver problem Crohn's related? Hopefully a full recovery from that.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 4/29/2009 5:42 PM (GMT -7)   
Hi Tom,

Around the time I was first developing Crohn's symptoms I had a CT to eliminate appendicitis and they found my liver was massively enlarged (my family still refers to me as the mega-liver). I was in hospital for several days while the doctors ran tests but they never came up with a diagnosis, so they sent me home and told me not to stop taking birth control pills and "avoid contact sports." Within weeks of stopping the pills my liver enzymes normalized and six months later the size was a lot smaller. So, the hepatologists I saw could only conclude it was from the pills, though I think the Crohn's is probably also involved.

At the time they figured all of my symptoms were due to the BCP's and coincidentally I did feel better for a while. So it caused my Crohn's diagnosis to be delayed by about six additional months.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E

Post Edited (Illini) : 4/29/2009 6:45:08 PM (GMT-6)

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