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Questions I have been afraid to ask

I am trying to better understand this disease. I am not sure I am even asking the right questions, please help me understand.

When first diagnosed and the Doctor labels you mild/moderate/severe crohn's is that observation just based on what they happen to be seeing at that particular point in time? Does is have any relationship as to the course of the disease over your life time?

Can someone start with Mild crohn's and then suffer with abscesses, fistulae, bloody D etc.?

Can some people have 20 years of spontaneous remission while others have constant pain? Does this disease have a typical course? Is there any way to know what someone's course will be?

From what I understand once the damage is done, it is not reversible. Inflammation can get under control and healing can take place but at a certain point surgery is necessary? And it is true that 70% of people will need surgery at some point? What percentage end up having a ostomy?

Does constipation with crohn's just mean that extensive damage hasn't taken place yet? Is the course of the disease different with constipation than with D? More mild? More severe?

What happens when you exhaust all medications for treatment options?

Sorry these questions are so disorganized and may not make sense. I am just still so confused about so many things.

Thanks,
Tiffany
 
Hi Tiffany! I know this whole Crohn's stuff can be very scary. I can only imagine if it was happening to my child and I didn't know much about it. I cannot answer all of your questions, because I just don't know percentages and things like that. But here goes some:

As far as the severity of the disease goes when diagnosis occurs, I don't believe it neccessarily outlines a certain course the disease may take. Some people have only one flare their entire life, and it may be bad, and then go into remission for years and years. Others (me included) struggle to get to remission and may never get their. I've had severe crohn's for about 12 years and have yet to achieve remission. That doesn't mean that I've been horribly sick for the last 12 years, but I do feel bad more than I feel good.

Yes someone with mild disease can end up with fistulas, abscesses, and bloody diarrhea. This disease is so unpredictable.

Crohn's does not have a typical course. Everyone's disease is different in some ways. Each case is really different in just about every way.

Yes, once damage is done it cannot be reversed... this is in regards to scar tissue. Once scar tissue is there, the only way to get rid of it would be through surgery. However, not everyone has enough or bad enough scar tissue to need surgery. I don't know what the percentage is of people needing ostomy's though.

I'm not quite sure what happens after you've exhausted all medical options. It is very scary. Right now I've just had my first surgery and the only medication I haven't taken yet is called Tysabri. I've failed all other drugs at this point. I know that after medications have failed, they do suggest surgery, I believe.. I don't know that that is what every doc would suggest though.

I really hope that these answers help you some. There are some great people here who have all kinds of information that could be helpful for you.
 

DustyKat

Super Moderator
Hey Tiffany,

1. My interpretation of things is that yes, the severity of the disease is based on what is happening at that point. So symptoms and their duration, pathology, blood tests, imaging, scopes etc. I don't believe that affects it's course over a lifetime as people can move freely between all three.

2. When Matt was diagnosed, his disease, based on the above, was rated as mild to very mild. Within three weeks of that diagnosis he was in hospital with a micro perforation, fistula and abscess.

3. I don't think there is anyway to predict the course this disease will take. I have read of people on here suffering daily for years and others that state they remember issues as teenager that eventually went away and then in their thirties they are experiencing a full blown flare.
I think there are too many variables to know how things will go. Response to treatment, supplements, diet, surgery and finally, what caused it in the first place?

4. Most of what you read, articles and studies, do state that 70% of sufferers will require surgery at some point. As you know, my own children had surgery straight up and my fear has always been that given they required surgery so early on what does that mean for the future. The GI stated that there was no reason in this day and age why they would ever require another surgery. I don't know but while ever they are in remission I find it easier to believe. I guess it also depends on when they do flare how quickly it is controlled, thus minimising damage.
I don't know the percentage of people that end up with an ostomy. If you have Ulcerative Colitis then removal of the large bowel and an ostomy is a cure. For those with Crohn's I think your chances are greatly reduced if your disease is well managed, well monitored and your surgery is planned. My daughter was undiagnosed when she has emergency surgery for a ruptured bowel, they didn't know that is what they would find at the time, and she didn't end up with an ostomy.

5. No, to me constipation means that the disease is in the small bowel and that narrowing is occurring, whether it be due to scar tissue or inflammation and it's resultant swelling. I would think that for constipation to be present then the disease has passed the mild stage and moved to the moderate - severe. The reason i say this is, for constipation to be a symptom the bowel has to have narrowed of to quite a degree. Bear in mind we talking small bowel so not a huge amount of swelling or scar tissue needs to develop. Also the issue with the small bowel is this swelling and/or scarring can lead to obstruction.

6. I think these days for those that have exhausted medication and surgery as options for treatment Stem Cell Therapy is used. Perhaps in the future this will be something that is no longer a last resort. There is also transplantation of the bowel but that would only be done under extreme circumstances. Then there are therapies like worm and faecal transplant that could be considered.

I hope that helped out even a little! Much of what I have said are only my thoughts based on what I have read over time.

Dusty. xxx
 
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Thank you your answers helped a lot. It is just hard to come to terms with all the uncertainty.
It really is hard to come to terms with it all. I've had the disease for over 12 years now and I sometimes find myself asking questions trying to wrap my head around it all.

You try to hang in there. I hope you find answers and support that you need. You can always PM me or e-mail me if you need a friend or buddy. This place is amazing for that!!
 
Location
Niagara,
Thanks so much, Jonnysmom for asking many of the same questions I have thought but haven't wanted to ask in front of my son... And thanks to Dusty for such well explained answers. :) my hope is that since our kids are still young, there will be plenty of new treatments throughout their lifetime and maybe they won't have the same difficulties as others in the past.
I get scared sometimes when I try to picture my son's future... And the unpredictabie, individual course of the disease can drive me crazy. My new mantra? ...Seize the moment and enjoy the good times while they last!
 
I am trying to better understand this disease. I am not sure I am even asking the right questions, please help me understand.

When first diagnosed and the Doctor labels you mild/moderate/severe crohn's is that observation just based on what they happen to be seeing at that particular point in time? Does is have any relationship as to the course of the disease over your life time?

Can someone start with Mild crohn's and then suffer with abscesses, fistulae, bloody D etc.?

Can some people have 20 years of spontaneous remission while others have constant pain? Does this disease have a typical course? Is there any way to know what someone's course will be?

From what I understand once the damage is done, it is not reversible. Inflammation can get under control and healing can take place but at a certain point surgery is necessary? And it is true that 70% of people will need surgery at some point? What percentage end up having a ostomy?

Does constipation with crohn's just mean that extensive damage hasn't taken place yet? Is the course of the disease different with constipation than with D? More mild? More severe?

What happens when you exhaust all medications for treatment options?

Sorry these questions are so disorganized and may not make sense. I am just still so confused about so many things.

Thanks,
Tiffany
My take, hopefully it doesn't overlap too much with what has already been said:

When your doctor labels you "mild, moderate, or severe" it does in fact relate to how bad it is at the time. However, I do think there is at least a tiny bit of correlation between that and your future disease state. For instance, some people diagnosed with their disease being mild may stay mild their entire lives, while I don't think it's as likely for someone diagnosed with severe disease to be mild the rest of their lives. Which isn't to say people whose disease is mild when they are diagnosed cannot experience severe.

Yes.

Yes. I don't know if there is a "typical" course. But I do have a personal theory. I don't believe in "remission" versus "flares." I believe that the treatments we take are in a constant battle to stem the tide. Without them, most people would steadily worsen. Sometimes the treatments do their job tremendously and keep people in remission for a long time, other times our bodies simply aren't willing to grant us a reprieve. I don't think there's any way to know how someone's course will be. There are some indicators like how bad they are now, how well they are responding to treatment, etc., but they are never guarantees. There is also a genetic test that supposedly tells you whether or not your disease will respond to treatment, but I'm not sure how much credit I would put in to it at this point in time.

I don't think the damage is always "not reversible." If it's caught early enough and treated well enough I think you can reverse the damage entirely with the right treatment for the right person. I see surgery as independent of that. If the inflammation reaches the point where it becomes scar tissue, this can lead to surgery. But so can things like infections, abscesses, etc. I think it is a statistic that 70% of people end up needing surgery. But statistics can be misleading. I'm not sure exactly how many people end up needing an ostomy, but I don't think it's the majority. So far I don't have one, but I have had surgery.

I have to finish this later if you have found my answers helpful at all. I hope it was at least somewhat useful.
 
Hey Tiffany,

1. My interpretation of things is that yes, the severity of the disease is based on what is happening at that point. So symptoms and their duration, pathology, blood tests, imaging, scopes etc. I don't believe that affects it's course over a lifetime as people can move freely between all three.

2. When Matt was diagnosed, his disease, based on the above, was rated as mild to very mild. Within three weeks of that diagnosis he was in hospital with a micro perforation, fistula and abscess.

3. I don't think there is anyway to predict the course this disease will take. I have read of people on here suffering daily for years and others that state they remember issues as teenager that eventually went away and then in their thirties they are experiencing a full blown flare.
I think there are too many variables to know how things will go. Response to treatment, supplements, diet, surgery and finally, what caused it in the first place?

4. Most of what you read, articles and studies, do state that 70% of sufferers will require surgery at some point. As you know, my own children had surgery straight up and my fear has always been that given they required surgery so early on what does that mean for the future. The GI stated that there was no reason in this day and age why they would ever require another surgery. I don't know but while ever they are in remission I find it easier to believe. I guess it also depends on when they do flare how quickly it is controlled, thus minimising damage.
I don't know the percentage of people that end up with an ostomy. If you have Ulcerative Colitis then removal of the large bowel and an ostomy is a cure. For those with Crohn's I think your chances are greatly reduced if your disease is well managed, well monitored and your surgery is planned. My daughter was undiagnosed when she has emergency surgery for a ruptured bowel, they didn't know that is what they would find at the time, and she didn't end up with an ostomy.

5. No, to me constipation means that the disease is in the small bowel and that narrowing is occurring, whether it be due to scar tissue or inflammation and it's resultant swelling. I would think that for constipation to be present then the disease has passed the mild stage and moved to the moderate - severe. The reason i say this is, for constipation to be a symptom the bowel has to have narrowed of to quite a degree. Bear in mind we talking small bowel so not a huge amount of swelling or scar tissue needs to develop. Also the issue with the small bowel is this swelling and/or scarring can lead to obstruction.

6. I think these days for those that have exhausted medication and surgery as options for treatment Stem Cell Therapy is used. Perhaps in the future this will be something that is no longer a last resort. There is also transplantation of the bowel but that would only be done under extreme circumstances. Then there are therapies like worm and faecal transplant that could be considered.

I hope that helped out even a little! Much of what I have said are only my thoughts based on what I have read over time.

Dusty. xxx
Thanks Dusty, As usual you have a great way of making things easier to understand. About the constipation, my son has had constipation since he was a baby, my daughter has it too and my husband as well. Is it possible that he is just prone to constipation? The Dr. didn't mention any scar tissue with MRE or CT or Colonoscopy or endoscopy. We control it with a small dose of Miralax would we be able to control it if it was from narrowing? Sorry to ask so many questions. Thank you for taking the time to answer.
 

Tesscorm

Moderator
Staff member
Thanks for asking all these questions and to everyone for answering! I hesitate to ask certain questions in front of Stephen and then have to go without the answers :shifty-t:
 

DustyKat

Super Moderator
Constipation in that context then yes, it may be a functional problem that they are all prone too and not related to Crohn's at all. In this circumstance it is important to know what is normal for them. So if not going for 2 days is the norm and then suddenly they don't start going for 3 or 4 then that is abnormal, or conversely they start going twice day then that is also abnormal.

I think you could apply the same rule here. If he takes a small dose of Miralax every day and all works well then that is normal. If this stops working or you have to start increasing the dose then to me that may indicate there is a problem forming.

I hope that makes sense!

Dusty. xxx
 
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