Upset - maybe misdiagnosed and biologics concerns

OP, I was one of those who was misdiagnosed as well and came here to express my outrage (was told I had UC but now they say Crohns). Some posters, like Scott F,  said essentially, "aren't you glad your surgeon didn't mess up the J-Pouch procedure because that would have been mal-practice." So apparently, misdiagnosis is totally in bounds. Apparently, Scott is a doctor and he seems way too sympathetic to other doctors.

To me, it would be no different than performing a double-mastectomy on someone who didn't have breast cancer but rather a harmless lump and then saying "yeah but hey, look what a great job I did with your surgery, you're not dead or anything."   

Fact is, my surgeon gets paid for cutting. If he had told me I had Crohns and not UC he would have never seen me again and he wouldn't have received the S-ton of money he got from my insurance company.

I’ve been traveling and just got home, so just now I’m finding time to check in.

Blueflame, I have been on one biologic or another for over a decade. It was for enteropathic arthritis and I did not develop chronic pouchitis until a couple of years ago. I did wind up taking antibiotics chronically, but my GI did not like the long term issues with them. Ultimately, he encouraged me to start Remicade with oral Imuran. That was about a year and a half ago. I was able to completely stop the antibiotics and my pouchitis symptoms compketely resolved. But, I did gain weight on the Remicade, over 30 pounds since starting it. So, I am not happy about that. I had gained back some weight I lost from a program while on other biologics (Humira, Simponi, Cimzia), but not as much or as rapidly as the Remicade. Maybe it boosted my appetite, but it definitely is something I need to address.

Rustyskyline- I think to compare having a colectomy and j-pouch procedure for presumed UC that later manifests as Crohn’s to performing a double mastectomy when no cancer existed is a false comparison. You are entitled to believe what you want, but that does not make it a realistic approach.

First, IBD is very difficult to diagnose accurately, even today, let alone 20 years ago.

Second, IBD can change over time so that the real underlying disease becomes apparent as the disease progresses. Unless all the clues are present, you cannot be sure. While there are some features that can confirm Crohn’s, you can never fully rule it out.

Third, a colectomy is absolutely appropriate for severe colitis even with a Crohn’s diagnosis (it is just the j-pouch that would be in question, and even that is not an absolute). So, if your colon was trashed, it needed to come out regardless of the diagnosis. The difference would be whether you wound up with an ostomy or not. So to presume that you would avoid surgery all together if you had Crohn’s is not correct. Patients with Crohn’s actually have more surgery over time, due to strictures and fistulas.

So, while I can understand disappointment and anger with a changed diagnosis, outrage seems out of place. Doctors do the best they can with the tools and knowledge base available at the time. Crystal balls are not in their medical bags. They are humans like the rest of us.

Jan

Jan, thank you for your reply. I truly appreciate everyone’s input. This board is the only one I’ve found that provides this level of information and support. 

Rustyskyline, I hear your frustration. It can be a bumpy road. I hope you find good health. 

Jan,

You're right, it's not a fair comparison. The colon is involved in so many bodily functions and it is virtually impossible to not experience a significant loss in quality of life post colectomy; the these changes will last the rest of one's life. Versus mammary glands which have esthetic value only and whose function can be easily reproduced artificially. So, no comparison. 

Update: Waiting on small bowel series results. Changed my diet and feel amazing. 

Just discovered something. I didn’t realize a sleep aid I was taking for a long time was an NSAID! Now I’m wondering if the ulceration is due to that. I’ve left my doctor a message as all along I’ve been saying/thinking I wasn’t taking an NSAID. 

BlueFlame, this could be great news! NSAIDs could very easily have caused the problems.

Scott, thank you for that! I’m so hoping that’s the case. Thank goodness for the internet so we can educate ourselves. 

The message from the doctor is this NSAID wouldn’t affect ulcers or IBD. The sleep aid was diphenhydramine. At one point as a gel cap with that being the medicine exclusively, and then as an ingredient in Tylenol PM. 

I’ve read the drug is an NSAID, but when it’s Tylenol PM it’s not an NSAID.  Doesn’t make sense to me. 

 I’m frankly frustrated now and less confident about what I might have going on. I don’t yet have answers as to why she is proposing straight skip to biologics. 

If anyone has thoughts I’d really appreciate it. I have left a message for with the doctor about my concerns. 

Diphenhydramine is an antihistamine (Benadryl). It works well as a sleep aid because of the drowsiness it causes as a side effect. It's not an NSAID and unfortunately can't explain the ulceration. Bummer.

You're describing your doctor's advice as "skipping" to biologics. This suggests that there's something you believe you should try first, for whatever reasons. Do you know what that is, or are you mostly just hoping something exists? Since you're not really on board with the doctor's diagnosis, it will be hard to come to an agreement about treatment.  If you don't want to be treated for Crohn's, but your doctor is convinced of the diagnosis (it sounds like testing is still going on?), then you might even have to switch doctors.

Less drastically, you could ask the doctor what treatment alternatives exist, since you are worried about biologics. You could ask how certain the Crohn's diagnosis is, and ask about trying to treat the next-most-likely alternative. You could consider trying a biologic for a few months to see if it makes you feel better and whether it causes the side effects you're particularly concerned about. You can always stop it if it's not working, or causing side effects you don't want to put up with.

I've live with the  possibility of a Crohn's diagnosis for nearly 40 years. At times I was in denial, and at times I went along with my doctor's advice. My J-pouch was, in part, treatment for the next-most-likely alternative to Crohn's. At the time I hoped the pouch would last a few years. I got lucky, and either 1) I don't have Crohn's, or 2) my Crohn's is going easy on me.

Whatever you do next, try to pay attention to how it's really going, and be open to a change (even an unwelcome one) if it turns out to be necessary. Untreated Crohn's is sometimes much worse than weight gain. The folks here with fistulas and such can attest to that.

Thank you, that’s helpful Scott. 

The doctor called back and was clear I’ll lose the pouch if I do nothing. I’m to meet with her IBD team to discuss treatment options. She is saying biologics are recommended in a case like mine because they are most effective, and because I have many years of life expectancy (requiring pouch care). 

She wasn’t saying no to other treatments and asked that I meet with the team about treatment options. 

It is tough to accept after believing I had UC. And if a med has side effects, I typically get them in spades. I don’t like feeling like crap with side effects. It’s not just about weight gain. It’s also the risks with biologics. And with other treatments headaches, nausea and dizziness are typical side effects; I’m prone to those things. I was miserable for years with med side effects so I’m not excited about that possibility either. I know it’s the lesser of possible problems, but I just want to feel well. 

To be continued, I suppose. 

Hang in there Blueflame. I was a mess when I was told that I had Crohns instead of UC too. That opens up a whole realm of possible fiascos. I also had my pouch for over 20 years before the change in my diagnosis which one doctor informed me is quite common with people who really have Crohns. Biologics are scary but Remicade was a life saver for me. Do your research and make a choice that you can live with. I had no weight gain on the Remicade; the worst thing I experienced initially was really bad nasal congestion for the first month or two. I am so happy for the good years that I had with my J pouch...it let me get through all my younger years without an ileostomy. Even after all the bad stuff that has happened, I wouldn't have changed my decision to go for the J pouch. My colon was a mess when they took it out and all these drugs weren't available in 1999 when I made the decision to go J pouch. Hopefully time will be your friend and allow you to accept this change in diagnosis. I was also on Cimzia and Humira with no weight gain but neither of those worked for me personally. Good luck with what you decide and know that you are not alone with this changed diagnosis thing. Plus, they sometimes do J pouches in Crohns patients depending on how their disease presents itself. So even if your initial diagnosis was Crohns, you may have ended up with a J pouch anyway. 

Thank you very much, LORI726. 

I guess I’ve been walking around in ignorant bliss. Mild symptoms of bloating and occasional mild incontinence or urgency that I’ve always easily fixed with diet, Imodium and Gas X. No pain or bleeding. 

I’m certainly not looking for trouble, but I guess what I’ve considered my “normal” are symptoms of not feeling/being well. 

Yes, my colon was wrecked. I feel nothing like what I had then, but I guess the colon didn’t deteriorate overnight either. 

As I mentioned previously what the actual diagnosis is is kind of irrelevant. It's chronic inflammation and regardless of what it's called it has to be treated. More variants of IBD exist than they know but they all have to be treated and the treatments are the same.  I went from a UC to a tentative Crohn's diagnosis 15 years after getting a J Pouch which has never been confirmed despite multiple diagnostic tests that were a waste of time and money. The treatments for bowl inflammation of the pouch and ileum are all the same. So as Scott already said you have to explore what other treatment options exist and if the answer is none, your choices will be to use biologics or lose the pouch. I have taken Remicade for 2 years and it works very well on J Pouch inflammation but not as well on inflammation above the Pouch. That's been my experience anyway. Entyvio and other biologics exist as well, and can be supplemented with rotating antibiotics as in my case. 

Since being on this sight, I have found it most bothersome to read that diagnosis doesn’t matter. I agree when it comes to biologic treatment, Colitis and Crohns can have very similar, if not the same  biologic treatment. But there are differences in  treatment of small bowel and large bowel.  My diagnosis has never been IBS  or indeterminate IBS, it has always been UC. I certainly had symptoms of Crohns, but my UC treatment remained the same.  And I did have the Prometheus test and it wasn’t a BS test, quite important . It provided substantiation I had UC. Additionally, it supported continuing treatment options - creating a Kpouch, which is not advised for a Crohns diagnosis. My entire medical treatment has been based on my UC diagnosis.  We are all entitled to our opinions and beliefs, and may have the best doctors treating us telling us many differing opinions.  But I believe  with all my doctors and treatment my diagnosis IS important. Symptoms fluctuate, treatment fluctuates, but original diagnosis has never fluctuated for me. It comes across very callous that one should not put any weight into their diagnosis let alone minimizing when one opts for a test that could corroborate diagnosis. Nothing is typically concrete in our world of GI disorders, but I believe the original determination matters. 

I think you are confusing diagnosis in people who still have their colons and diagnosis in people who have had their colons removed which is most of the people on this board. This board is the J pouch group and those who have J Pouches do not have colons, thus UC isn't a applicable diagnosis for those with chronic inflammation of a J Pouch. In this latter group, diagnosis as between Pouchitis and Crohn's doesn't matter and is only the source of money being spent unnecessarily and I have had two J Pouch specialists admit this to me.

If it is important my doctors sure don't think so because they gave up trying to figure it out a long time ago. Two J Pouch specialists, at Yale and at Mount Sinai, have specifically told me my diagnosis will not alter the way they treat me because chronic inflammation in the ileum is treated with the same progression of drugs- antibiotics, topical enemas, biologics, etc. Remicade is the preferred first choice biological drug for inflammation of the J Pouch. 

If you still have your colon the above analysis doesn't apply and that may be where you are becoming confused. Once your colon is gone UC is not a diagnosis, chronic inflammation is pouchitis or Crohn's and the treatments are the same for both.

The Prometheus test is not taken seriously or as conclusive by most diagnostic experts I have spoken to and I was specifically told it is not even the golf or silver medal diagnostic test- capsule endoscopy is gold and MRI Endoscopy is silver. 

I had a UC diagnosis for 20 years, had surgery on the basis of that diagnosis and then after 22 years of J Pouch inflammation my diagnosis is Crohn's - operatively, not conclusively. However there was no evidence whatsoever of Crohn's for my first 35 years having IBD. It developed after I had the surgery and has done so with others. All diagnostic testing pre surgery was UC and all diagnostic testing since surgery has been inconclusive.

If you think diagnosis matters for a person who has chronic inflammation of a J Pouch, please explain why and how diagnosis would impact on their treatment? My own doctors and specialists have not been able to answer this, so if you can I would like to hear the explanation of how diagnosis matters to those in the same situation as me, which is more than a few people on this board.

There are some decisions that would be influenced by the presence (or absence) of a Crohn's diagnosis. For example, the set of surgical options considered appropriate could be quite different. Additionally, if puzzling symptoms are present the set of possible causes is different for those with Crohn's vs. a UC diagnosis. Nevertheless, the basic medications and choices among them are indeed the same for both diseases, as CT says. And sometimes, as in my case, the true underlying diagnosis remains a bit mysterious.

Still waiting for small bowel series results and treatment plan. In the meantime, I’m wondering why my doctor said no to antibiotics last year when she saw inflammation and some ulceration that may indicate Crohns. At the time she didn’t prescribe anything, said it’s not pouchitis, antibiotic use would be ineffective if used routinely and come back in a year for another endoscopy. 

If antibiotics are cycled as part of Crohns treatment and clearly I had something going on last year, why no treatment? I had symptoms, whether pouchitis or Crohns. 

BlueFlame, antibiotics aren't really used to treat Crohn's disease per se. They are used to treat pouchitis, from several different causes. Granulation and ulceration above the pouch isn't pouchitis. So your doctor is suggesting things that tend to work best for what you seem to have.

Trying antibiotics would likely do no direct harm, and it's possible that you'd feel better. There is some risk that they would delay the treatment more likely to preserve your pouch, so there is that consideration.

Scott,

What is/was sometimes diagnosed as Crohn's in the ileum above the J Pouch is now considered a result of SIBO.  SIBO was not even being discussed until around 10 years ago, and it is most definitely treated with antibiotics.  The problem I have above the pouch, which is the same problem many J Pouchers have, is backwash stool going back into the ileum due to the J Pouch inlet not having a backsplash valve, as the colon does to prevent such backsplash.  My SIBO is compounded by the fact that in addition to the backwash, I have a very small J Pouch inlet which was narrowed due to surgical scarring and swelling from inflammation.  This causes fecal stasis, and SIBO, according to my docs. At my worst in 2012 I was getting a sensation of blockages all the time. I took Entocort and a high dosage of antibiotics at that time, and changed my diet, with very good results.

You are correct that traditional Crohn's Disease is not treated with antibiotics first.  But, in patients who have a J Pouch and a pattern of inflammation above the pouch, an experienced specialist will want to look at the possibility of SIBO depending on the pattern of inflammation.

I have granulation and ulcers in the area just north of J Pouch inlet, same as BlueFlame.  They were NEVER there before 2007.  My specialist who scoped me 1992-2007 always took pics above the pouch in the neoterminal ileum. The symptoms in this area developed many years after surgery.  The explanation for them is what I have stated above.  This was also born out on MRI Enterography and CT Enterography exams which showed the bowel walls thickened as well in these areas.  These are diagnostic tests that are far more reliable than Prometheus for this type of situation.  In my case, I have a tentative, unconfirmed diagnosis of Crohn's Disease.  It is treated the same as pouchitis in my case.  And for many others who have carried both diagnoses.

Whether you call it Crohn's or something else, the methods of treating it are likely the same in the same order.  It's important to consider that it's a new disease afflicting your new biology, meaning my UC diagnosis was not wrong.  I always felt that I was cured of UC after surgery. I never felt the same way after surgery as I did before when suffering with the UC.  I have been managing a different bowel disorder.

My doctor says it’s not backwash, that this isn’t possible. Then she added reference to seeing cobblestoning and ulceration in the pouch this year. Last year it was above the pouch with pouch inflammation.