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Update: on my daughter Holly.

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Posted 2/11/2009 1:09 AM (GMT 0)

Celey and Gail,

I really hope you guys are right about hemmoroids, (I can't spell it either, same goes for diarreah). I wouldn't be too concerned with that.

I'm really hoping that surgery can be avoided. I don't know how stable a stricture is, or what the liklihood is of it getting progressively worse. 

It seems like every day this disease presents new challenges. Mostly unfair challenges. The disease is heavily armed, and I've got a slingshot. I don't know how the h@@@ I'm ever gong to get through this mess. I would sure like to go back to worrying about what I thought were big problems instead of fighting this battle. 

I know, gotta stay positive. I'm certainly trying. Once again tomorrows another day.

Tom.

Posted 2/11/2009 4:01 AM (GMT 0)

Hi Tom,

No surgery, so far. Yes, we would like to explore all other avenues, first.

My daugher has been in remission since September 2006 (on Entocort). She also follows the SCD diet (including homemade yogurt), modified to include potatoes and rice. We know Entocort works for her. What we don't know is whether the diet helps, but as long as it is healthy, figure it can't hurt. 

IF there is evidence Crohn's has become active, this is what she might try before resorting to surgery: LDN, worm therapy, following the strict SCD diet, or Imuran.

Her stricture appears to have been stabilized since she started treatment/diet. The last SBFT (November 2008) indicates it has not worsened since 2006. The reason it is nearly 10x longer than that of your own daughter is because she was misdiagnosed and untreated for two years. 

I suppose the GI has already discussed the possibility of upping Pentasa up to 4000 mg. If he hasn't, maybe it is because he doesn't think it will help. Pentasa is a weak med but for the lucky ones, it has been beneficial without serious side effects. For others, doesn't work, causes side effects, or simply slows down Crohn's progress (which means the stricture and other symptoms could worsen).  

Imuran is much more effective, but can cause worse side effects. To avoid one of the more serious side effects, some experts recommend testing for TPMT, the enzyme required to metabolize azathioprine, before starting Imuran (the brand name version of azathioprine).   

Right now, while the doctors and your family are still in the decision-making stage is an unusually tough time. Once the decision has been made, the pressure is eased. 

A  stricture in the TI can cause nausea and vomiting if too narrow - the only time my daughter has trouble is when she is in a flare, because the inflammation makes the stricture even narrower than usual. But when the inflammation subsides, the stricture causes her no problems. If your daughter has not had nausea or vomiting due to the stricture, this might be a good sign.  

Post Edited (njmom) : 2/10/2009 9:34:01 PM (GMT-7)

Posted 2/11/2009 4:08 AM (GMT 0)
I'm sorry that surgery is a possibility but if it comes to that then I'm sending best wishes that all will go well for her and hope that it's the turn around that she needs.

:)
Posted 2/11/2009 5:20 PM (GMT 0)

Hi njmom,

I must tell you, you have a great knack for informative, relavent posts. This is really helpful. Obviously, you've spent plenty of time educating yourself about the disease.

I agree with you about surgery. I wouldn't like to consider that yet unless it becomes absolutely necessary. If I could get an idea of just how much stricture is too much, that would help with a dicision on that. I'll be asking about that. You make good points about watching for nausea or vomiting. I guess constipation would be an indicator as well. I can accept the fact that surgery is a liklihood at some point. I would just rather to defer it until she's more like 25+ yrs. old

I don't think that the GI has much faith in Pentasa at this point. I don't either really, and often wonder if it worked at all. I asked her why Imuran, and they pretty much just have a policy to proceed to a stronger maintenace drug after Prednisone is used a second time. 

The next hurdle will be seeing how well Holly tolerates Imuran. The bloodtest you suggest is an excellent idea, and I will certainly mention this to our GI. The decision making is difficult as you pointed out. I'm sure you've been through that. 

May I ask, where is your daughters Crohn's located? Is the Entocort cosidered a long term treatment for her?

Thanks again for your detailed help,

Tom.

Posted 2/11/2009 7:33 PM (GMT 0)

Hi Tom,

My daughter's Crohn's is located only in the TI. Never had fistulas or abscesses. Never had diarrhea - instead, used to be constipated.   

Entocort is like prednisone, but releases in the small intestine - this means only a percentage of the drug gets into the bloodstream, so the side effects are not as bad as with pred. My daugher is on the lowest dose, one pill a day, since May 2007, with no side effects. At two pills a day (the maximum is three) we have seen her blood sugar rise above normal (but only after five months at that dose), and she tends to come down with a bacterial infection that always requires an antiobiotic like Zithromax to eliminate.  

I have not seen any proof in clinical trials that Entocort can cause what they call "healing" - not like Imuran can. My daughter has certainly beat the odds in showing no symptoms this long on Entocort (usually patients "flare" within the year, even when it works), which I'm sure is thanks partly to the modified Specific Carbohydrate Diet and supplements. Based on clinical trials, Entocort works at first and then either peters out or a flare develops - in my opinion, if a patient flares then this means Crohn's was quietly festering and not brought to a dead stop. Like pred, it does cause problems with vit D and calcium, and even at the lowest dose, can cause adrenal suppression.  

I don't believe the Entocort will work indefinitely, and I do believe that being on it so long is not good. But am thankful my daughter has really had a wonderful three years - traveling to Spain and London, doing well in college, staying out of hospitals;) Now, it is time for us to consider tapering off Entocort - she has discussed LDN (low dose naltrexone) with her doc.

It is not unusual for docs to introduce Entocort first, and then within a few weeks add Imuran, because IF the Entocort works then it can buy time for Imuran to kick in (takes months).

The link below is from the famed Johns Hopkins hospital, and leads to one of the best overviews about meds I've seen. If you click onto the tabs in the link, they also include great info - including pictures and diagrams about Crohn's and the body.    

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4&organ=6&disease=21&lang_id=1

Post Edited (njmom) : 2/11/2009 12:39:40 PM (GMT-7)

Posted 2/12/2009 2:14 AM (GMT 0)

Hi njmom,

I would say your daughter certainly has "beaten the odds". Sounds like she will have a very manageable case. I can tell you from experience now that you want to stay one step ahead of this disease. I don't believe my daughter would have suffered these complications if the disease had of been better controlled.

Thanks for providing the link, it's very informative. The treatment outline for abscess/fistula is scary though. They seem to indicate that after drainage of an abscess, then resection of the area with the fistula will follow. Our GI said that the only reason a resection would be considered would be for stricture. The Radiologist stated very clearly that the fistula was no longer a concern as well. So I'm a bit confused by all of that.

Tom.

Posted 2/12/2009 4:09 AM (GMT 0)
Hi Tom,

It seemed say if fistulae cause severe symptoms and don't heal, then surgery might be considered. If abcesses don't clear and lead to complications, then surgery might be considered. It did make the point that asymptomatic fistulae do not need to be treated.

The docs might be confident the fistula and abcess are manageable, but that the stricture resection can prevent recurrences of such complications. This would be the optimal outcome. On the other hand, it is possible that a med like Imuran -- much stronger than Pentasa -- can also have the same optimal outcome, effectively controlling the disease and preventing complications.  The CCFA website (www.ccfa.org) is easier to understand - its position on surgery vs meds is:

"Treatment with medication is the first therapeutic option for people with Crohn's disease. However, about two-thirds to three-quarters of people with Crohn's will eventually undergo surgery as part of the therapeutic management of their illness. Surgery may be needed for serious complications; for disease that doesn't respond to medication; or as a last resort to relieve symptoms that cannot be brought under control."

The CCFA site then goes on to discuss, in fairly sensible language and tone, why and when surgery might be considered - and how to approach the decision to do so (or not) - in the following link: http://www.ccfa.org/info/surgery/surgerycd 

Posted 2/12/2009 2:53 PM (GMT 0)
Hi Tom,

The good news is your daughters abscess/fistula is healing and/or gone. Glad to hear that. My first bowel resection was a right hemicolectomy (TI). The crohns kept recurring at the resection site which caused me to have 2 more resections. Now I to have scar tissue issues, and I have a balloon dialation once a year to stretch the narrowed area. Works like a charm and has saved me from more surgery. I would certainly discuss this with your colorectal surgeon.

How are you holding up through all of this? I know its difficult, but please try not to stress yourself out over this.

Julia
Posted 2/12/2009 5:06 PM (GMT 0)

Hi njmom,

You are echoing my concerns and thoughts to a tee. We are really going to have to keep an eye out to make sure that the fistula doesn't cause more problems, or that the abscess doesn't recur. Also that the stricture doesn't worsen.

Hopefully, the Imuran will be effective and quiet the disease down enought to prevent further complications like that. I can see though that as much as i don't want to consider surgery, that if things are not being controlled well, then it would be better to opt for surgery at that point rather than have her suffer a viscious cycle of complications. That's even considering the points you presented eariler like, complications or quick recurrence.

It seems that no matter what course of action you choose to battle this disease, that there's going to be a certain amount of risk. It's tough as a parent trying to make the best decisions possible for you child. 

Your right about the ccfa website. It seemed to lay things out a little more clearly, Thanks for that. 

Tom.

Posted 2/12/2009 7:14 PM (GMT 0)

Hi Tom,

Yes, the pressure of making these decisions -- with no guaranteed outcomes -- are indeed hard on a parent...at particularly bad moments, a torment. In case somebody hasn't mentioned it, the link below goes to a parent IBD site:  

http://www.dragonpack.com/ibdsupport/parents/

Grief, anger, despair, fear will all come and go. Decision-making time is the worst. After that, there's relief to be found in knowing there is a plan, and then following the steps in that plan. 

Posted 2/12/2009 10:26 PM (GMT 0)
Tom,
I really hope you can get some more info from your dr about the extent of the stricture. A couple of centimeteres doesn't sound like urgent surgery to me. But I am no dr so take what I say with a grain of salt.....
From my experience with two resections (18 and 12 inches respectively) I would be more likely to give the Imuran a try first. And from there you can always consider Remicade or Humira. Surgery was always presented to me as a last resort.

As you may remember I am still getting over the resection I had back in October. My Crohn's has already returned so surgery is not a guarantee of remission. I did get 5 years remission after my first surgery, but not even a week with this past one.

I started back on Imuran this week. It did not work for me for more than a few weeks this past summer but by that time my flare had been going for a few months and it was quite severe. I am hoping that it will work now that we are starting over, in a sense.

Sit down and have a good talk with your daugter's GI about all her options. Ask lots of questions re the stricture. I have always had better luck with a CT with contrast on determining how extensive the stricture was. Maybe that is an option so you can have a better picture.

Good luck with all this. I know it can be very stressful sorting through all the info and trying to make decisions.

Tanya
Posted 2/13/2009 2:08 AM (GMT 0)

Hi Tanya, 

Thanks very much for offering your support and advise. I can't believe that the disease has come back so fast after your recent resection. I know that surgery is no guarantee, but I would like to assume that you would get some years of remission. I'm not sure how typical your experience is. 

What happens for you now? Obviously you can't just keep getting resected every few months. I would hope that the disease would respond to meds now. I hope the Imuran works for you. 

I was just starting to get used to the idea that surgery may be a good option for my daughter at some point, then when I read what happened to you, it makes me want to think about it alot more. Uh... I don't think that came out right. Don't get the idea that you scared me or anything. I really appreciate you sharing and informing. 

I will have many more questions for our GI when she contacts us. I'm continually trying to refine the best course of action. I hope I make the right decisions. Please let me know how your treatment goes. Good luck with everything. 

Tom.

Posted 2/13/2009 2:25 AM (GMT 0)

Hi Julia,

Thanks for suggesting the baloon dilation. I'm not too familiar with this procedure, but I'll certainly check this out as a possible option, especially if it can avoid surgery.

Your the second person that's posted that has had a problem with recurrence after resection. Did you get any relief at all? How soon did you start noticing disease again? I'm assuming that you had a strong maintenace therapy going after the surgeries. 

Sounds like the baloon dilation has worked well for you, which is very good news. 

As far as how I'm holding up, if I answered that honestly, you'd be sorry you asked. It's been tough. It's a bit of a rollercoaster ride. 

Tom.

Posted 2/13/2009 5:15 AM (GMT 0)
Tom, here is what I've been able to dig up as for as recurrence.

CD recurs in 50% of people within 5 years of surgery, with no meds. I'm trying to find good studies on whether taking meds reduces this, but I think they do.

http://www.ccfa.org/info/surgery/surgerycd
http://www.wjgnet.com/1007-9327/11/3971.pdf
http://www.ncbi.nlm.nih.gov/pubmed/15362027



30% (25% according to ccfa site link above) of surgical patients will need another surgery in their lifetime. Optimistic spin: Odds are that most people who have surgery will only have 1 surgery.

http://www.everydayhealth.com/crohns-disease/webcasts/can-elective-surgery-help-manage-your-crohns-transcript-1.aspx

But then this site says that 70% of those who have one surgery will need at least one subsequent surgery.

http://www.medscape.com/viewarticle/588009

Confusing!!!!!


NOTE: If someone has other links that show other figures, please feel free to post.
Posted 2/13/2009 2:39 PM (GMT 0)

Hi Rider Fan,

The statistics certainly are confusing. Even if there were exact numbers, there are still other variables to consider. Thanks for posting this though. I've pretty much decided to try to avoid surgery if at all possible, but not to the point where I will ignore the option if it seems like the logical imminent thing to do.

Tom.

Posted 2/13/2009 10:29 PM (GMT 0)
Hi Tom,

In my case the crohn's was back at the resection site within 6 months. Yes I was on maintenence meds, but please remember my surgeries were in 1987, 1997 and 2002, and we didn't have alot of meds that are offered now. I was on pentasa in 2002.

As for the balloon dilation it is done during your colonoscopy. Your daughter won't even feel it with proper sedation. Also, in my case anyway, my GI always does a colonoscopy before surgery so he knows exactly whats going on. What I am thinking is if your daughter has a colonoscopy and they are able to do the dilation great, if not they will have a clear picture of what needs done in surgery.

Take care of yourself, and please try not to worry so much. I know easier said then done!

Julia
Posted 2/14/2009 2:50 AM (GMT 0)

Hi Julia,

I hope you don't mind another couple of questions. I was under the impression that the TI couldn't be reached with a scope. Isn't that why they do a SBFT? I don't know much about this baloon dilation. Does it stretch the stricture premanantly? Also, did you mean that after your resection in 02, that you were only on Pentasa for maintenance? Perhaps a stronger drug would have sustained the remission considerably longer. 

Thanks very much for responding again. I really appreciate this kind of imput.

Tom.

Posted 2/14/2009 11:08 AM (GMT 0)
Tom,
The TI can be reached by a colonoscopy. But I know with me that my scopes are very painful and there has been times when they had to stop before reaching the TI because of the pain. But when I was under more sedation and used a child size scope they reached it.

The problem is that they usually cannot put the scope through the stricture because of it being too narrow, so cannot see how much is involved with the stricture. A SBFT can show how big it is.

Tanya
Posted 2/14/2009 11:26 AM (GMT 0)

Hi Tanya,

After my daughters most recent SBFT, our GI discussed the results somewhat. She said that there is 2cm's of stricture, but I'm assumed that's the length. I'm not sure just how much narrowing there is. 

I'm expecting to hear from them next week, as she is consulting with a surgeon first before diciding on further treatmeat. The fistula seems to be a concern for them as far as surgery goes, yet she keeps telling me that it's nothing to worry about at all. Even the Radiologist told me straight out that the fistula is of no concern. 

I'll have to wait to see what they propose. Thanks again,

Tom.

Posted 2/14/2009 6:00 PM (GMT 0)
Keep us updated, Tom.
Posted 2/16/2009 3:48 AM (GMT 0)

Hi Rider Fan,

Your main takeaway of 30% chance of another surgery is not supported by the sites you referred to in this and postings on other threads. Rather than be detailed in this thread, I'll post my detailed response in the thread, Recurrence of CD after surgery, later this evening.

Posted 2/16/2009 3:50 AM (GMT 0)
Thanks njmom. The 30% figure is in this link, in the discussion with the surgeon on page 5.

http://www.everydayhealth.com/crohns-disease/webcasts/can-elective-surgery-help-manage-your-crohns-transcript-1.aspx
Posted 2/16/2009 4:33 AM (GMT 0)
Dr. Fichera doesn't provide any documentation for his claim.
Posted 2/16/2009 5:15 PM (GMT 0)
Hi Tom,

It is when they reach the narrowed part of the intestine that they do the balloon dilation. That is what it is all about getting the scope through the narrowed section. Mine lasts 1-2 years, then my colorectal surgeon does it again. Works for me! Immuran was an option for me in 2002 as a maintenence drug, but when I took it for 3 days I developed a high fever, chills, etc. precisely 8 hours after taking the pills each day. My GI said no more. As far as Remicade, etc. they were not approved by the FDA in Canada in 2002, so I stuck with the Pentasa which is released at that part of the bowel. I think your daughter has already beat the worst part of her battle right now - that being the abscess and fistula. There is nothing that compares to the pain of an abscess. If she has 2 cm in length of strictures (scar tissue) I would definately ask about the dilation. If it is 2 cm of inflammation (crohn's) then you may have to consider surgery. As far as meds go I know that remicade can cause narrowing higher up in the bowel, but it does wonders for perianal disease. I know this from experience. I read where your GI is moving, I hope you find another that you feel comfortable with. Maybe you will get opinions from your old GI and the new one. Give your daughter a hug and tell her it will get better. Take care.

Julia
Posted 2/16/2009 10:28 PM (GMT 0)
Tom, my 12 year old just had surgery, so here is what I know.  With Crohn's, they will avoid surgery if possible because it does return.  80% of people have endoscopic recurrance within 6 months, but you may get clinical relief for years.  Each year that goes by increases the rate of clinical recurrance.  Imuran and 6MP seems to give better odds and decrease the recurrance rate, but certainly don't eliminate it.  Yes in your shoes, having been through what we went through, she should take the imuran and be happy if it controls the disease.  Pentasa does not act on the underlying tissue that is causing the stricturing, so don't continue with only Pentasa when it has already failed her.    

Related to the stricture, the stricture can be due to flare (inflammation) or scarred.  SBFT and CT scan can give them an indication of whether medication can reduce the stricture or whether she will need surgery due to the scarring.  I'm sure that is what they are evaluating now.  You want to avoid surgery if you can, of course, but you also don't want to put your daughter in the situation where she will end up in the ER with an obstruction. 

We absolutely did not want to go through surgery either, but it was not as bad as I feared, and the result has been great as far as resolving pain and gaining weight.  That is the short term.  Time will tell on the long term!

Ask a lot of questions.  Ask about balloon dilation and strictureplasty if they feel the stricture needs to be fixed.   Those are two other methods that can be used, but it depends on the stricture. 

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