So at my most recent pouchoscopy last week, my doctor saw consistent inflammation throughout my pouch, continuing 40 cm above my pouch.  My biopsy results came back with nothing abnormal, other than confirming the inflammation.  My pouch also showed signs of shallow apthous ulcers, but according to my doctor, neither the ulcers or inflammation is severe at this point.  This is consistent with the scope I had back in August as well.  Since August, I've been on a consistent dosage of Cipro, which has been able to manage my symptoms back to "normal".   However, my GI, after this most recent scope, is talking about changing my diagnosis to Crohn's given that the inflammation goes farther up above my pouch (rather than terming it backwash inflammation).

 

I'm curious what other's experiences are with regards to their possible change in diagnosis, response to treatment, treatment plans, etc.  I'm very resistant to a change in my diagnosis given that my doctors were certain it was UC before doing my JPouch, a family history of UC (not Crohns) and my responsiveness to the Cipro.  

 

I understand that for treatment, my diagnosis may not matter, but it does impact other things (one just being my mental state).  

 

Any thoughts/insights from others who have experienced this are appreciated.

Original Post

When I had surgery, my original diagnosis was UC, but has now been re-categorized to crohns. UC and crohns are just labels.  They don't define who we are.  Treatment of the inflammation in either case is what matters.  

In the past few years my surgeon helped me find a really good GI who has been a tremendous help in finding treatments for me, which are helping to heal the chronic inflammation and allowing me to sleep at night. (Didn't do that so well for years after the j pouch was made - while raising toddlers too.)

Anyway, don't worry about the labels.  Keep working with your doctor to find a course of treatment that works for you.  It may take some trial and error to get it right, but the fight is so worth it.

Hope this helps

 

CTBarrister posted:
brmcguire posted:
I understand that for treatment, my diagnosis may not matter, but it does impact other things (one just being my mental state). 

To be honest this statement makes no sense to me.  My diagnosis changed and it had zero impact on my mental state because I was as treatable with one diagnosis as I was the other. 

I’m glad to hear for you that the change in diagnosis for you wasn’t a big deal. However, I don’t feel the same way. I’m much more concerned that things will not be able to be as easily treated, having to start biologics (a path of no return, and the thought of long term biologic treatment scares me), a higher risk of pouch failure (which would be devastating to me), higher medical treatment costs, less ability to gain reasonable life insurance, etc. I understand it’s all inflammation, but a Crohn’s diagnosis is just a hard pill for me to swallow. It is encouraging to hear you’ve been able to medically manage your symptoms for so long, that does give me a little hope. I’m only 35 and I’m scared of what the future holds. 

Still Standing posted:

When I had surgery, my original diagnosis was UC, but has now been re-categorized to crohns. UC and crohns are just labels.  They don't define who we are.  Treatment of the inflammation in either case is what matters.  

In the past few years my surgeon helped me find a really good GI who has been a tremendous help in finding treatments for me, which are helping to heal the chronic inflammation and allowing me to sleep at night. (Didn't do that so well for years after the j pouch was made - while raising toddlers too.)

Anyway, don't worry about the labels.  Keep working with your doctor to find a course of treatment that works for you.  It may take some trial and error to get it right, but the fight is so worth it.

Hope this helps

 

Thank you for your reply! My pouch has allowed me to have two healthy pregnancies, without being on medication, which I’m extremely grateful for. I’ve recently switched doctors so I am encouraged no matter what I’ll get the right treatment. Just trying to mentally process everything. 

I'm currently exploring the newfound world (for me) of Chron's treatments since my doctor found the inflammation "higher up" like you.  I was a little bummed for a bit on the possible reality of having Chron's in additon as it does seem to foreshadow a life of dependency on these higher power treatments (something I had formerly only felt blessed to not have had to experience). 

CTBarrister posted:

Just remember the "higher up" inflammation may be due to backsplash stool because the J Pouch does not have a backsplash valve like the colon did.  Some doctors confuse backsplash stool-induced inflammation in the neoterminal ileum with Crohn's, or else arbitrarily designate a Crohn's diagnosis to ANY inflammation north of the J Pouch and in the ileum, whether it's in the neoterminal ileum or much higher up.  The phenomenon of inflammation right above the J pouch inlet due to backsplash stool is fairly common for the reasons already mentioned, and it's primarily due to SIBO in that area where stool pools and concentrates a lot of bacteria.  None of the posts here mention exactly where the "higher up" inflammation is, and I would suggest to the prior posters that if it is just above the J pouch inlet, you are worrying about nothing.  Of course it's not good to have inflammation anywhere, but that area is very very prone to inflammation and it's hard to control it completely through any treatment.  My Remicade treatment cleared up all the inflammation in the J Pouch but not in the neo-terminal ileum above the J Pouch, for the reasons already mentioned- it's being caused by backsplash stool, and it's been an issue for many years now but there is nothing that can really be done about it except through controlling diet.  It's technically Crohn's Disease in that it is in the ileum, but it's a disease process that only exists because of the fact that the J Pouch does not have a backsplash valve like the colon.  We can conclude most likely that it would not exist if the J Pouch had a backsplash valve like the colon did to prevent the same issues from happening.  So it's really an artificial disease process.

So I asked my doctor specifically about it being backsplash inflammation and his comment back to me was that since the inflammation goes so far up from the beginning of my pouch into the ileum (40 cm is what he told me) that he felt it was more likely Crohn's.  I guess I don't have a good marker of understanding how high above the pouch backsplash inflammation could go?

CT, it's not your place to tell anyone how they should feel about a change in diagnosis. I'm so angry reading your comments. I also had my diagnosis changed to crohns. It's a punch in the gut. I was ready for a life without meds but I'm back on all the toxic meds I fought so hard to get off. I'm back to flare ups and blood that hasn't gone away. I'm back to possibly more surgeries in my future.  And you say the change in my diagnosis shouldn't affect my mental state? Just stop. Stop it. That is not up to you. And in the future, don't tell other people how they should feel. 

Last edited by AARON

I believe a lot of us j-poucher's were fed a lie saying that when we had surgery, we'd be cured.  I was told that.  The reality is that we still have our compromised immune systems, which sometimes still cause flare-ups or inflammation.  There are some really blessed people who can go med free forever after surgery. I'm not one of them. (and yeah, I get so jealous of them.)

I had my diagnosis changed from UC to Crohns.  The fact is that no matter what my diagnosis, I have inflammation that has to be addressed with meds.  That is a fact of my life.  I can choose to accept it, seek ways to make life better through meds, diet , and supplements, or I can choose to become bitter. (I tend for go to the feel sorry for myself as a first plan to often.)

Aaron, I understand your feelings. It sounds like you are really struggling in a way quite different from me and I wish you weren't going through such garbage.  CT is just reminding us that our mental state is a choice.  He isn't downplaying the discouragement and absolute anger you feel with having to return to meds and possible surgery.  He's just reminding us not to let a label define your life.  There are things we can do to try and have a "normal" life.  I'm not encouraging you to go "Polly Anna".  I'm just encouraging you to live the best "normal" you can be - even with crohns.

So much for my rant

 

So if our mental state is our choice are you saying depression is a choice then? 

Because that's what you're saying.

 

This is utter bullcrap.

 

It's pretty f***ing simple. Don't tell a person they are wrong for feeling the way they feel. How difficult is that to grasp?

Last edited by Jan Dollar

CT - you seem to make other peoples threads about yourself and you bring yourself out as a shining example of how to live their life, while saying the OPs are wrong for feeling the way they feel because that's not how you feel. That needs to end. You aren't being empathetic at all. You're being dismissive and judgemental. This is a forum for helping people, not patting yourself on the back and telling everyone else they are wrong for feeling something you dont.

Last edited by AARON

I am way off base? So in your world you think telling people how they should feel is not controversial? And that people are wrong to be angry at people who do that? That's your ego doing the thinking man. You can google it. It's something you should not be doing to anyone. Period. There's dozens and dozens of articles on it. 

 

Edit: CT these are your own words which are not only not true, anything can affect your state of mind, ANYTHING, especially a misdiagnosis, but it's also you saying everyone who thinks this way after a misdiagnosis is wrong and that's not true at all. This is not you suggesting anything. You're outright saying it's wrong for us to think this way. 

 

You said "A change in diagnosis should not effect your state of mind." 

 

 

Last edited by AARON

OK, this is getting out of hand.

I can see how CT was misunderstood. Not everyone is a psych therapist, so we can expect folks to make assumptions about others from time to time. Sometimes they are right. Sometimes they are way off base.  But, just because someone takes a matter-of-fact approach that may seem dismissive to some, it does not mean that is the intent or there is any sort of bullying going on. 

So, let’s dial down the flaming, stay on topic, and try to ignore and/or forgive if someone rubs you the wrong way. 

In regard to the original post: I get it. It is frustrating to feel like you have been lied to by your medical providers. Shame on them for making it all seem so black and white. But, the reality is that there is a whole lot of gray area on IBD diagnoses and regardless of what you were once told, things can and do change over time.

I am one who is has been on biologics for about 15 years post op. First for arthritis, now chronic pouchitis. Do I like it? No, but I accept it. If I don’t, it could eat me alive. I think that was the point CT was getting at. You feel how you feel, but it is possible wrap your mind around it and free yourself from the anger and fear. Hopefully, that does not mean it is all about me, but that there is more than one way to define success.

Jan

There was no misunderstanding. His words and intent were clear. He even doubled, tripled down on them.

 

"A change in diagnosis should not effect your state of mind."

 

He needs to recant that because that is 100% WRONG and potentially psychologically damaging to some people who read that. 

Last edited by AARON
Jan Dollar posted:

OK, this is getting out of hand.

I can see how CT was misunderstood. Not everyone is a psych therapist, so we can expect folks to make assumptions about others from time to time. Sometimes they are right. Sometimes they are way off base.  But, just because someone takes a matter-of-fact approach that may seem dismissive to some, it does not mean that is the intent or there is any sort of bullying going on. 

So, let’s dial down the flaming, stay on topic, and try to ignore and/or forgive if someone rubs you the wrong way. 

In regard to the original post: I get it. It is frustrating to feel like you have been lied to by your medical providers. Shame on them for making it all seem so black and white. But, the reality is that there is a whole lot of gray area on IBD diagnoses and regardless of what you were once told, things can and do change over time.

I am one who is has been on biologics for about 15 years post op. First for arthritis, now chronic pouchitis. Do I like it? No, but I accept it. If I don’t, it could eat me alive. I think that was the point CT was getting at. You feel how you feel, but it is possible wrap your mind around it and free yourself from the anger and fear. Hopefully, that does not mean it is all about me, but that there is more than one way to define success.

Jan

Jan, he made a blanket statement that a change in the diagnosis SHOULD NOT change your state of mind. He didn't give suggestions about HOW to stay positive. If he did that, that would be actually helpful. Instead he dismissed people like the OP and myself who's state of mind had been negatively affected. So I don't agree at all that he has no intent to harm.

Apologies to the original poster for hijacking this thread.

I am tempted to delete this whole side discussion. But, from time to time I guess we need to step back and remember why we are all here. That reason is to support each other. We cannot assume that someone has a cruel intent because he is working from a different set of facts. We all bring our baggage with us. We also cannot assume that we know what someone else is dealing with based on a few paragraphs.

It is fine to say you disagree or are offended by something someone posts. But, let’s keep it civil. Ideally, if toes are stepped on, there is an appropriate apology that is accepted. This way we all learn and grow. Some of us are sensitive. Some of us are insensitive. Maybe we can all try to be better listeners.

Jan

I appreciate everyone's comments on this thread.  My intent with my original post was to gain some insights (and even possibly some guidance) from others in this community who have been down this path I'm staring down before me.  None of this is easy, but this community is very helpful.  This is the first time I've asked a question, but I've read many other threads and have always felt this community has been able to support the people involved.  My goal is to be able to become armed with information that I can use in finding the right treatment plan for me.  Thanks everyone.

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