Diagnosis in question by my new GI, need thoughts

[rubberduckie1313]

My GI found ulcers in the duodenum of my small intestines with the pill cam. He has not looked at my large intestines yet but, my previous GI found ulcers and inflammation in my large intestines along with a fissue. My new GI states that the previous findings were "inconlusive" (even though my previous GI said the biopsies were conclusive). My new GI does not think I have Crohn's disease at all and is working on a new diagnosis. Given the previous findings of inflammation, ulcers and fissures, I am having a hard time understanding what diagnosis he is thinking it is and what I should do in this situation. He thinks I just have peptic ulcers and they have nothing to do with Crohn's Disease.

Basically, I want to hear experiences of people who have had ulcers in their duodenum and what ended up being the diagnosis. Did they end up being peptic ulcers and totally separate from Crohn's? Did the doctor misdiagnosis them before added them to the Crohn's diagnosis? Mostly, I want to have an idea what to expect and to hear other people's experiences.

Sorry for the long post, I am just nervous about all this and want some stories to understand what is in store. It is scary to have a diagnosis of Crohn's Disease come out after 6 years of uncertainty and then have it questioned again by a new GI. I am on Cimzia and it is helping immensely but, if this new GI goes back on the diagnosis, I will have to start all over. I don't know that I have the emotionally endurance to go through the last 10 years of getting a diagnosis and finding a medication that works again..

Thank you for any and all replies!

 

[Scipio]

If you turned out to have peptic ulcers instead of Crohn's that would be a good thing. In fact it would be totally great. Peptic ulcers can be cured. Crohn's can't.

However, I have to say that the previous finding of large bowel ulcers and fissure does sound rather like IBD more than routine ulcers. I wonder what makes the new doc doubt those findings? In any case I'd let the new doc chase it down. If you turned out to have only ulcers that would be wonderful for you.

Also, by any chance do you take a lot of NSAIDs such as aspirin, ibuprofen, or naproxen? They can cause duodenal ulcers that look a lot like IBD.

 

[shamrock15]

I had a pill cam study about 6 years back when I had severe anemia. It showed, according to my GI, huge quantities of scars from ulcers throughout my duodenum. Very little blood was ever seen in stools, but it was known to be occult. It in no way altered my treatment or diagnosis. At that point, I had had crohn's for close to 20 years. Do you know the reputation of your doctor? Do a little digging, but make sure your doc tells you why he thinks it was an incorrect diagnosis.

 

[Jabee]

It can be very disconcerting when you see a new specialist and they want to start the diagnostic process all over again. Of course, that's sometimes what is needed, but in your case it seems quite odd.

There is someone on the forum who has gastroduodenal crohn's; I think it's littlemissh, and she knows far more than I do. But you should also be able to get a copy of your patient records and your biopsy and other test results would be included. I was diagnosed with celiac disease 15 years ago; my symptoms resolved completely once I went gluten free. Three years later I first showed symptoms of crohn's in my duodenum (it has since moved around and now seems comfortable messing with my entire small intestine). After a hospitalization last spring my GP wanted me to consult a specialist in IBD in addition to my regular GI. The specialist actually told me I didn't have either celiac disease or crohn's because my small intestine showed signs of complete mucosal healing which never occurs in either disease. I left his office completely confused until I spoke with a physician friend who who remarked that it sounded like the specialist wanted a solid tissue diagnosis rather than another GI's notes. My regular GI and I had a chuckle about the whole non-re-diagnosis thing. A lot of GIs seem to want to reinvent the wheel, and I completely agree that it is both frustrating and nerve-wracking when a new doctor interprets old test reports differently.

Since cimzia is helping you, and you have all the symptoms of crohn's, I really hope he listens to you and doesn't mess with your treatment without a complete visual examination of your intestines. It's fine to get tested for peptic ulcers; you may have them, but does he have any explanation for your intestinal inflammation and ulcers? Has he given you any rationale for his new diagnosis? Hopefully you can get your records and then see your new GI with a list of questions about what the different test results mean.

 

[rubberduckie1313]

It can be very disconcerting when you see a new specialist and they want to start the diagnostic process all over again. Of course, that's sometimes what is needed, but in your case it seems quite odd.

There is someone on the forum who has gastroduodenal crohn's; I think it's littlemissh, and she knows far more than I do. But you should also be able to get a copy of your patient records and your biopsy and other test results would be included. I was diagnosed with celiac disease 15 years ago; my symptoms resolved completely once I went gluten free. Three years later I first showed symptoms of crohn's in my duodenum (it has since moved around and now seems comfortable messing with my entire small intestine). After a hospitalization last spring my GP wanted me to consult a specialist in IBD in addition to my regular GI. The specialist actually told me I didn't have either celiac disease or crohn's because my small intestine showed signs of complete mucosal healing which never occurs in either disease. I left his office completely confused until I spoke with a physician friend who who remarked that it sounded like the specialist wanted a solid tissue diagnosis rather than another GI's notes. My regular GI and I had a chuckle about the whole non-re-diagnosis thing. A lot of GIs seem to want to reinvent the wheel, and I completely agree that it is both frustrating and nerve-wracking when a new doctor interprets old test reports differently.

Since cimzia is helping you, and you have all the symptoms of crohn's, I really hope he listens to you and doesn't mess with your treatment without a complete visual examination of your intestines. It's fine to get tested for peptic ulcers; you may have them, but does he have any explanation for your intestinal inflammation and ulcers? Has he given you any rationale for his new diagnosis? Hopefully you can get your records and then see your new GI with a list of questions about what the different test results mean.

So sorry for the late response! I was sick all week and my internet was not working. Thank you so much for your response. I don't care if I have Crohn's or something else, honestly, I just want to finish the whole process of my GI questioning everything and wanting to be right. I have a solution that is working for me and I really don't want to do the process over again. I have been told everything from IBS to Crohn's to nothing at all and I know there is something going on.

The doctor also talks to me like I don't know what is going on with my own body and like my previous doctor was a moron. He even made it sound like I had been doctor shopping for a diagnosis when I have had the same doctor for the last ten years. I am giving him a chance to see if he will do a biopsy to prove his theroy, instead of just yanking me off my meds and hoping for the best.

I am just having a hard time because it seems like no matter what, I am going backwards. My diagnosis doesn't mean anything to one doctor from another. Thank you for sharing your experiences. I am pretty certain it is Crohn's because that was my previous diagonsis and Cimzia makes a huge difference. I will update this thread as I know more.

 

[rubberduckie1313]

If you turned out to have peptic ulcers instead of Crohn's that would be a good thing. In fact it would be totally great. Peptic ulcers can be cured. Crohn's can't.

However, I have to say that the previous finding of large bowel ulcers and fissure does sound rather like IBD more than routine ulcers. I wonder what makes the new doc doubt those findings? In any case I'd let the new doc chase it down. If you turned out to have only ulcers that would be wonderful for you.

Also, by any chance do you take a lot of NSAIDs such as aspirin, ibuprofen, or naproxen? They can cause duodenal ulcers that look a lot like IBD.

I don't use NSAIDs. I was told when I originally recieved my diagnosis not to use them and I have been good about avoiding them. The reason he is saying I don't have Crohn's is because my previous doctor's notes "were not conclusive". This counters what my previous GI told me, that the biopsies were conclusive for Crohn's. It literally came out of nowhere for me because I was given the diagnosis and treatment by my previous doctor, not as a question but, as a definative diagnosis. This is why this all came as a surprise to me and I am so confused. I feel like the odds are, since it affecting my whole digestive system and joints, that it has to be Crohn's. Hopefully, this is all settled quickly.