Where Do I Go From Here?

[Raleigh]

I had a colonoscopy on May 17, which showed rectal inflammation. The doctor told me that based on what he saw, he thought I either have Crohn's or UC. He wasn't able to reach to Terminal Ileum because I was in too much pain.

Fast forward to today, and my biopsies came back. My doctor, who was not the doctor who performed the scope, said the results were unremarkable. This is what the report said:

Rare lymphocytes involve the surface epithelium in the biopsy from the cecum, but there is insufficient surface epithelial lymphocytosis to suggest microscopic colitis. There is no significant acute inflammation or surface epithelial lymphocytosis in any of the other biopsies.

I believe that I have IBD, based on the fact that I have bloody stool, severe abdominal pain, diarrhea, anal itching, bleeding, fissures, and a skin tag, joint pain, skin rashes, severe iron deficiency, and vitamin D deficiency. I have also been on TPN (IV Nutrition) for the past 5 years because I dropped to 105 pounds due to the severity of my symptoms.

I'm at a loss about what to do going forward. I've been trying to get a diagnosis for 8 years now, and I really thought this was going to be it after the colonoscopy. I can't say that I didn't have a good doctor, because he is a world-renowned gastroenterologist. I just don't understand how the doctor who scoped me was so sure about IBD, and my doctor dismissed IBD based on the biopsies.

Is visual inflammation not enough? I know that they are looking for specific things with Crohn's on the biopsy, but I thought that was different with UC. I just can't continue on in the condition that I'm in. I need answers, and at this point I don't know where to turn. At least if I had a diagnosis, I could get treatment.

I'm sorry this is so long, but if anyone has any thoughts, ideas, or answers to my questions, I'd be really interested. Has anyone else been in this situation before being diagnosed? Thanks so much.

Brian

 

[Adam1971]

I am sure others will have more knowledge and suggestions, but what occurs to me is that the doctor still needs to determine if inflammation consistent with crohns is in your small bowel (ie terminal ileum)- that is where crohns is most common. Perhaps pill cam or barium follow thru? How does this doctor explain your symptoms?

 

[Raleigh]

I asked him about doing the pill cam at my appointment. He said "if you want a definitive diagnosis, you go by the biopsies, so the capsule endoscopy is worthless". He also said that small bowel Crohn's, before the terminal ileum, is very rare. I was surprised since so many people have been diagnosed with the pill cam.

I agree with you about the need for an evaluation of the terminal ileum. However, my doctor didn't seem too concerned that it wasn't scoped during the colonoscopy. You would think he would want to check it out.

In terms of my symptoms, he didn't offer an explanation. The only thing that's ever been offered as an explanation is IBS, which I would never accept considering that I have so many red flag symptoms. People also don't end up on TPN with IBS.

 

[Trysha]

Maybe you need another GI opinion.
It does seem to be a rather long time with your symptoms without a satisfactory diagnosis.
It is somewhat surprising that the terminal ileum has not been examined/evaluated
Hugs Trysha

 

[David]

As others have said, until your terminal ileum and higher up have been evaluated, there should absolutely not be a dismissal of IBD as a possibility. If this doctor doesn't feel the need to check those areas, then I call his world renowned status into question.

 

[Adam1971]

I agree with David. If he has not evaluiated the TI and ruled out IBD, without any other explanation, then definitely a 2nd opinion is in order. Just my 2 cents.

 

[Raleigh]

I agree with you guys. It doesn't make sense to rule out IBD without evaluating the TI. I've literally seen 11 or 12 GI's in the past 8 years, and only in the past few months has IBD even been considered. And in those 8 years, my TI has never been scoped. It's frustrating because I feel like so much time was wasted on exploring other diagnoses.

I think what I'm going to do is see a local GI who does the pill cam, and ask for it to be done ASAP. I'm not up for another colonoscopy after the issues with the last one. I know they won't be able to take biopsies, but will the pill cam get a good look at the TI? Thanks for the replies.

Brian

 

[David]

It should, yes.

 

[rxgirl]

Hi Brian...ignore my question on the previous post as I can see you are still struggling to get an answer on your diagnosis and I am really sorry to hear that. I know that it is not a definitive answer and would definitely check to see the cost/insurance coverage first, but the Prometheus IBD SGI can offer some information about genetics, inflammation and serologic markers. There is a lot of positive and negative information out there about these tests, but it can provide some insight for some people.

The other thing that comes to mind is what everyone else has said...pill cam.

It seems that your GI provider is not the one that did your scope. I tried very hard to find a provider that would also be the one that would perform my scope. I know that this is not always possible, but I feel that it is a big plus because they know what they are looking for. Does the doctor that performed the scope see patients and have a decent reputation for IBD (maybe try to see them)?

Also, since you mention upper GI symptoms as well, have you had an endoscopy recently?

Best wishes and take care!

 

[Raleigh]

Hi rxgirl,

Thanks, and I appreciate the tip about the Prometheus IBD SGI. I know it isn't conclusive, but it's always good to have another diagnostic tool. I wonder if my GP will order it for me.

You are correct, my doctor did not perform the colonoscopy/endoscopy because he had to go to out of town to a conference. I don't know very much about the doctor who performed the scopes. Unfortunately, I won't be able to see either of them anytime soon because they work at the Cleveland Clinic, and I live in Raleigh, NC. I'm going to try to see a local GI that someone recommended to me on this forum. I'm definitely going to pursue the pill cam. I think that might be my best bet for getting a diagnosis.

I've actually had 5 endoscopies, which have always showed gastritis. Unfortunately, gastritis is associated with many intestinal diseases.

Anyway, thanks again, and I hope you find some answers soon as well!

Brian

 

[shamrock15]

I have had one "renowned" gastro-enterologist work with me before. I fired him. He wasn't willing to actually listen to what I was telling him. Apparently he didn't know the correct protocol for Remicade (didn't prescribe regular blood work for that even when I specifically asked him to as a result of ongoing anemia that started pretty much at the same time as the remicade). I switched, never looked back, never regretted it. Crohn's as you probably know isn't just an issue in the colon, it can go all the way to your mouth. Checking two or three feet out of 30 doesn't give a doctor the justification he needs to rule out a disease.

 

[Raleigh]

That seems to be the theme with these highly pedigreed and accomplished physicians. Getting past their egos is the hardest part. I have an appointment for June 19th with a local doctor who was highly recommended to me by a member of this forum. I'm going to ask for a capsule endoscopy and hope for some answers. As you alluded to, a physician's education, training, and accomplishments are useless if they are unwilling to actually listen to their patients.