No change at all. You probably had whatever you had all along and nothing "developed." The treatments are exactly the same for Crohn's and Pouchitis so the labels are irrelevant - completely and totally. You need to not focus on arbitrary labels, and instead focus on treatment. It's inflammation and whether you call it UC, Crohn's or pouchitis, it's bowel Inflammation and bowel inflammation needs to be treated. And the treatments are in most cases the same, and the game is "let's find what works for YOU". Remicade is used for UC, Crohn's and Pouchitis. So what you call it makes no difference at all except to pathologists and maybe in some cases to insurers. In my case they have waffled between a diagnosis of Pouchitis and Crohn's for 15 years. A ton of money was spent on diagnostic tests, and none of them was ever conclusive. We don't even know that your biopsy is conclusive, it's just one pathologist's opinion. My biopsies were looked at by top pathologists on East and West Coast and they were uncertain.

There is treatable Crohn's and untreatable pouchitis. In those cases they are using or trying the same meds or groups of meds. You try to find something that works and labels have nothing to do with that inquiry, at all. What you call the inflammation has nothing to do with whether the medication will work. So what you need to do is find a treatment that works and not worry about diagnosis. Do worry about untreated inflammation because that is all that it is without a label.

@CTBarrister posted:

No change at all. You probably had whatever you had all along and nothing "developed." The treatments are exactly the same for Crohn's and Pouchitis so the labels are irrelevant - completely and totally. You need to not focus on arbitrary labels, and instead focus on treatment. It's inflammation and whether you call it UC, Crohn's or pouchitis, it's bowel Inflammation and bowel inflammation needs to be treated. And the treatments are in most cases the same, and the game is "let's find what works for YOU". Remicade is used for UC, Crohn's and Pouchitis. So what you call it makes no difference at all except to pathologists and maybe in some cases to insurers. In my case they have waffled between a diagnosis of Pouchitis and Crohn's for 15 years. A ton of money was spent on diagnostic tests, and none of them was ever conclusive. We don't even know that your biopsy is conclusive, it's just one pathologist's opinion. My biopsies were looked at by top pathologists on East and West Coast and they were uncertain.

There is treatable Crohn's and untreatable pouchitis. In those cases they are using or trying the same meds or groups of meds. You try to find something that works and labels have nothing to do with that inquiry, at all. What you call the inflammation has nothing to do with whether the medication will work. So what you need to do is find a treatment that works and not worry about diagnosis. Do worry about untreated inflammation because that is all that it is without a label.

Vow! So well explained. Thank you!

This post is so helpful & educative. Appreciate the detailed response.

No problem Adam. I have seen too many "I have Crohn's and the sky is falling" posts on this board, that are really stressing out over something which is in essence just a label, and not really focused on more important issues. I would also note that some people say ANY inflammation inside the ileum is Crohn's. By that definition I definitely have Crohn's, but that definition doesn't account for the fact that the J Pouch has no backsplash valve and what causes inflammation above the J Pouch inlet in many cases is the lack of a backsplash valve. This is why the labels simply cannot be plugged in and played with all patients. My GI doctors were all excellent doctors (one of whom was mentored by the famous Bo Shen and in fact discussed my case with Shen), and they all saw me as a difficult diagnosis for the reasons I have mentioned above. However, from what I have read on this board, there is nothing unusual about my inflammatory pattern, and more often than not people who have it are called Crohn's patients. The reality is they are difficult to diagnose because of some of the issues I mentioned.

@CTBarrister posted:

No problem Adam. I have seen too many "I have Crohn's and the sky is falling" posts on this board, that are really stressing out over something which is in essence just a label, and not really focused on more important issues. I would also note that some people say ANY inflammation inside the ileum is Crohn's. By that definition I definitely have Crohn's, but that definition doesn't account for the fact that the J Pouch has no backsplash valve and what causes inflammation above the J Pouch inlet in many cases is the lack of a backsplash valve. This is why the labels simply cannot be plugged in and played with all patients. My GI doctors were all excellent doctors (one of whom was mentored by the famous Bo Shen and in fact discussed my case with Shen), and they all saw me as a difficult diagnosis for the reasons I have mentioned above. However, from what I have read on this board, there is nothing unusual about my inflammatory pattern, and more often than not people who have it are called Crohn's patients. The reality is they are difficult to diagnose because of some of the issues I mentioned.

What worries me when I hear Crohns is the fact the disease involves the entire digestive track. I hear folks who have crohns can develop ulcers in mouth, gut, small intestine as well. How likely is that?

@Adam21 posted:

What worries me when I hear Crohns is the fact the disease involves the entire digestive track. I hear folks who have crohns can develop ulcers in mouth, gut, small intestine as well. How likely is that?

You have what you have, if those things didn't happen before they are not likely to happen now. Your mindset is that you "developed" something "new" in your body, but in reality a new label was slapped on something you have likely had in your body for a very long time. I have carried a possible Crohn's diagnosis for 15 years and have had ulcerated areas in my J Pouch for 25. Those issues have been kept under control. I don't have ulcers in my mouth and never did. There isn't much more to say except that treatment will either work or not no matter what disease you have, so the focus should be on treatment and not labeling what you have.

Yes, antibiotics work especially cipro. The only difference now is that anytime I stop, I relapse. Earlier 5 days antibiotics will resolve the underlying inflammation but now I have to stay on the antibiotics for longer period

@Adam21 posted:

Yes, antibiotics work especially cipro. The only difference now is that anytime I stop, I relapse. Earlier 5 days antibiotics will resolve the underlying inflammation but now I have to stay on the antibiotics for longer period

That was my experience. So I’ve been on Cipro since 2008 with an *excellent* quality of life.

@Scott F posted:

That was my experience. So I’ve been on Cipro since 2008 with an *excellent* quality of life.

Scott,
How often do you take Cipro. My doctor suggests 1 Cipro/500mg three times a week instead of 14 Cipro/500mg per week.

@Adam21 posted:

Yes, antibiotics work especially cipro. The only difference now is that anytime I stop, I relapse. Earlier 5 days antibiotics will resolve the underlying inflammation but now I have to stay on the antibiotics for longer period

I was on antibiotics continuously with no stoppage for 25 years. I may have the record for this board - the Cal Ripken of consecutive days antibiotics usage - although not sure about that. My New York City GI used to say to me, "you are the Guinea Pig for long term chronic antibiotic use", when I used to ask him if I could be on antibiotics for years. However I am now off antibiotics and on Remicade, the second line of treatment for IBD.

@Adam21 posted:

Scott,
How often do you take Cipro. My doctor suggests 1 Cipro/500mg three times a week instead of 14 Cipro/500mg per week.

I take 500 mg once a day. The best dose is probably the lowest one that keeps your symptoms away. One approach would be to find a dose that definitely works for you and then slowly reduce it until symptoms start to reappear. The next higher dose should work.

I had J-pouch surgery 19 years ago due to severe ulcerative colitis.  I developed chronic pouchitis and resulted in a Crohn's diagnosis since the inflammation had spread to small intestine a bit.  My current situation is that I take 500 mg Cipro, 500 mg Flagyl, and small dose of Lomotil every day; receive Entyvio infusions every 8 weeks.  This combo has done the trick for me.  Would love to get off of Flagyl so I can enjoy the occasional glass of wine, but every time I have tried, I experience symptoms again....sigh

What I have observed that people on this forum are the worst cases. I did not bother posting on this forum till my symptoms got very bad.

Here’s the good news. I got the biopsy back & no signs of Chrons. I’m off the antibiotics for few weeks & doing great. My frequency is 4-5 times a day & sometimes I get up during the night.

I had my takedown 10 years back & indulged in lot of parties - alcohol, marijuana, and all good stuff. My weekly consumption of alcohol is 2-3 bottles of wine, 1-2 bottles of Burnon/Whisky/Vodka. I quit smoking last year but used to smoke a pack every two days. I’m late 40’s & workout & trek 3-4 miles 3-4 times a week. I’m very active outdoors.

So the lesson for members, don’t give up, don’t get depressed, don’t think negative. There are millions of people out there who have crohns, colitis, & pouch & are living a perfectly normal life. What I have learned is that you must love & live your passion. My passion is my GF, who keeps me going.

@jmw If the only problem Flagyl causes for you is involuntary teetotaler status then it might help you to know that Flagyl doesn’t cause alcohol problems for everyone, particularly with moderate drinking. If you’ve never tried wine while on Flagyl it might be worth a *careful* experiment or two.

Also, have you tried more conventional Crohn’s medication, like mesalamine, or a strong probiotic like Visbiome? Either or both could hypothetically reduce or eliminate your Flagyl dependence.

I am just looking at my biopsy report now and it looks like there is inflammation proximal to the pouch. My Diagnosis  is also switched to indeterminate colitis

i want to validate the sky is falling Crohns panic for a minute. As a child I was constantly told it was so much better to have UC and at least I didn’t have Crohns. There definitely was  a hierarchy and perhaps many can relate to feeling relieved to “only” having UC. I was reassured the disease would be gone and cured as soon as I got the j pouch.

To find out now at age 53 that was maybe a wrong diagnosis is disorienting because of the many years of soothing and reassuring  past messages. It takes time to get to acceptance. As much as I want to just focus on treatment and avoid labels I have to be honest that I'm struggling a bit.

Kate

@katenet posted:

I am just looking at my biopsy report now and it looks like there is inflammation proximal to the pouch. My Diagnosis  is also switched to indeterminate colitis

i want to validate the sky is falling Crohns panic for a minute. As a child I was constantly told it was so much better to have UC and at least I didn’t have Crohns. There definitely was  a hierarchy and perhaps many can relate to feeling relieved to “only” having UC. I was reassured the disease would be gone and cured as soon as I got the j pouch.

To find out now at age 53 that was maybe a wrong diagnosis is disorienting because of the many years of soothing and reassuring  past messages. It takes time to get to acceptance. As much as I want to just focus on treatment and avoid labels I have to be honest that I'm struggling a bit.

Kate

I am sorry hon, I would just say focus on the light and do not let the dark win. Everything will be okay, I have faith in you

@katenet posted:

I am just looking at my biopsy report now and it looks like there is inflammation proximal to the pouch. My Diagnosis  is also switched to indeterminate colitis

i want to validate the sky is falling Crohns panic for a minute. As a child I was constantly told it was so much better to have UC and at least I didn’t have Crohns. There definitely was  a hierarchy and perhaps many can relate to feeling relieved to “only” having UC. I was reassured the disease would be gone and cured as soon as I got the j pouch.

To find out now at age 53 that was maybe a wrong diagnosis is disorienting because of the many years of soothing and reassuring  past messages. It takes time to get to acceptance. As much as I want to just focus on treatment and avoid labels I have to be honest that I'm struggling a bit.

Kate

@@Kate I don’t think biopsy results mean anything. Look I’m seeing top doctors & researchers. I also get good treatment bcos I support few research programs for this university/hospital. When I got diagnosed with acute inflammation in pouch, doctors said that I might have developed chronic pouchitus & even Crohns. However, after the biopsy, they said it’s hard to differentiate between the two - pouchitis & Crohns. And it’s really no big deal bcos the treatment can be same for acute pouchitis & Crohns. I say, live your passion, workout, eat healthy, & taper your Cipro slowly over 4-6 months. You will be fine.

@katenet Kate, I’ve carried an indeterminate label for a long time now. None of the diagnoses determine your course, though they can help work out a range of possibilities, help make sense of symptoms, and sometimes help choose treatments more wisely. There are some dreadful cases of Crohn’s that can occur, but most cases, particularly those that have looked mostly like UC, just don’t act like that. Worst-case-scenario thinking will drive you nuts. Inflammation *immediately* proximal to the pouch is very common, seems to be associated with backwash stool, and seems to get the pathologists a bit overexcited. It often doesn’t turn out to be Crohn’s, in spite of what the pathologists were taught, because of that backwash from the J-pouch.

@Scott F posted:

Inflammation *immediately* proximal to the pouch is very common, seems to be associated with backwash stool, and seems to get the pathologists a bit overexcited. It often doesn’t turn out to be Crohn’s, in spite of what the pathologists were taught, because of that backwash from the J-pouch.

This point needs to be emphasized because I don't think most pathologists understand the mechanics of the J Pouch and the concept of backwash stool and why it happens. I along with MANY long time J pouch patients have the exact same inflammation in the exact same area and if you talk to any specialist who scopes numerous long existing J pouches, he or she will tell you that this is what they see and why they see it.

Crohn's is an arbitrary label and the bottom line is you have what you have and what's more important is how to treat it.  Nobody will ever know if it's really Crohn's or the consequence of backwash stool and therefore it's a complete waste of mental energy and time and money to focus on a diagnosis which is likely always going to be indeterminate. Some are able to treat this inflammation and live with it for a good quality of life for MANY years. I have for at least 15 years since they first saw this inflammation which is also spilled into my lower neoterminal ileum. Admittedly my doctors, now 3 different pouch specialists all with hundreds of J pouch patients, all tell me I have had a very good result for this situation. So I am lucky. Although there was a time (in 2012) when I was so strictured at the Pouch inlet that he almost couldn't get the scope through and he told me I would be dilated if that ever happened. Riot act was read. But it hasn't happened. I think in my case Remicade plus managing sugar and carb intake has worked. Others need to find what works for them.

Guys this is really helpful. Im grateful for the feedback and support as always

im heading to NYC to see Bo Shen next week so I’ll keep you updated. I’d been paying cash to see him in Cleveland but the NYC hospital is not affordable and my insurance denies me going out of town. Im seeing him for a consult and will let everyone know. I’m in good hands -Lots of love

kate

Best of luck, Kate. I’d suggest following the appeals process on your insurance, and if they deny your appeal you can further appeal to your state insurance agency. I’ve had surprisingly good results with that, but it took plenty of time and persistence.

Thanks Scott! Without boring the heck out of everyone I have appealed multiple times. My employer is a major hospital system that requires us to get our care there and only there no exceptions. They consider themselves the best and in many areas they are. (This is not one of those areas however). As they are self insured they write the policy and the codes of pouchoscopy, stricture dilation, etc are done there.

The appeals boards over the years state that I don’t HAVE to get my care from their in house doctors but if I choose to leave the system they will not pay.

Kate, I feel for you. Insurance navigation is the worst! The only thing I can say in their defense is that there are probably loads of people who demand out of network providers because of a false perception of better care, when in reality it is just better marketing. But, in your case it is different because you aren’t getting the same care. I can only hope that once you get your diagnosis and plan, the local guys can follow it!

In regard to the UC vs Crohn’s debate, my understanding is that they still tend to want to categorize IBD into Crohn’s and UC. However, the consensus is that there are numerous subtypes of IBD and it is a spectrum of diseases, many of them overlapping. Once they get the genetics figured out they will be better able to determine which treatment options will be successful for each patient. THAT is what is most important, not what the name of your disease is. The success of biologics in general and their early adoption in the disease course has led to a decline in colectomies for IBD.

Jan

Thanks Jan for the support and always voice of calm and reason! Working for a major hospital system has its benefits however leaving the system for care is not permitted under any circumstances.

Shen is in network for office visits he just can’t actually DO anything because it takes revenue away from the hospital as he would do it in the past Cleveland and now NYC. All procedures tests surgeries infusions must be done within our system!

my only recourse is to quit and I have worked there for a very long time. I am a hospital health care trained social worker and I love what I do.  The blessings here are many - I can get this new provider to collaborate with him and she is smart and lovely so far. In the past egos from my local doctors stopped this process and I was caught in the middle.

I have had this my whole life and am still learning. Thank you fir all the kindness.

Kate