Not sure why he would use the term colitis if you have inflammation in your small intestine. Colitis simply means inflammation of the colon. Now, there is the diagnosis of Chrohns Colitis which is when the Crohns only presents itself in the colon which I am assuming yours is gone and you have a j pouch. He may be thinking you have Crohns now but the word colitis shouldn't be in there. The only thing I can think of is maybe he was trying to explain it in way you would understand it but you're right, that's very confusing.

He shouldn't be setting you up for a Miralax prep with a j pouch....it's too harsh.

Sometimes doctors use common lay terms, thinking they are being more plain speaking to their patients. But for those of us who are well versed in medical lingo, it can be confusing. So, you were right to try to get clarification. Bottom line, it is possible for any of us to have the diagnosis change to Crohn's at any time.

As to the scope, it seems he was setting you up for a colonoscopy, with the same prep and sedation. While sedation is not required for a pouch scope, there are many here who prefer it. If you don't want sedation, be sure to call back and get this sorted out. Same with the prep. Often, the docs will order the procedure based on the equipment he needs, and the staff send out the standard prep. It does not mean that is what you need. So, again, you need to call back and get clarification from the doctor.

My doctor sets it up as a sigmoidoscopy, but uses a pediatric upper endoscopy scope. No sedation, and tap water enemas before I leave the house. The instructions he leaves for the staff to give me are "patient knows what to do."

Since the sedation nurse had nothing to do during my scope, she was showing me photos on her iPhone during my procedure. It was actually fun!

Jan

I had a scope just a few weeks ago, and they sedated me. I have a pouch and they gave me instructions with miralax and ducolax. I think when you have a pouch, you know when there's nothing left in your body. I sure did. So I did half of what they suggested and I was fine. Honestly, I prefer sedation. But if you don't want it, be clear with the nurses. Also, I made sure everyone who took care of me knew I didn't have a colon. It helped us all be on the same page. Good luck!

I actually don't mind the sedation, I just don't want to put myself through more prep than is necessary.

I called about the prep and the guy I talked too didn't seem to get what I was saying. He kept saying I was having a colonoscopy and I told him I didn't have a colon and that I was having a scope of my jpouch, I don't think he knew what I was talking about and just kept telling me to do the prep I was given.
I'm nervous the prep is just going to be too much for me to handle .

Of course he did not know what you were talking about. He was just a medical assistant answering the phone. What you need to do is tell them to ask your doctor directly for instructions specific to your case. It is OK to tell him that everyone else you know says the prep should be minimal because there is no colon. If they refuse to forward the message, then I would take 1/3-1/2 of the prep. Once you have clear diarrhea, you are good to go. Just know that come scope time, there will be more bile coming along that will need to be rinsed out. This would happen whether you took the whole thing or not.

I had one GI with no j-pouch experience accuse me of not doing the prep (two bottles of mag citrate the day before, then nothing but clear liquids after that). I sure did, but it was 16-20 hours before the scope and he did not have me do any quick enemas before leaving the house. So, the big prep did not hurt me, but it did not do what the doc expected either.

Jan

I also have my first scope coming up soon. It was scheduled as a flex sigmoidoscopy but now I'm wondering about the prep too. i am supposed to drink 10 oz. of mag citrate the night before and do two saline Fleet enemas the day of the procedure. Does that seem right or too much?

Regarding "so confused": I wonder if they are truly remembering that you have a pouch despite your reminding them? I have noticed that most health providers really don't know about j pouches and sometimes are too busy to listen. Keep reminding them.
Savannah

First I talked to a medical assistant, then she told me I needed to talk to the nurse, that's who told me to do the whole prep.

Any time they see inflammation in the pouch they will look above the pouch to see what is going on. It's arguably malpractice if this is not done. Unfortunately the traditional scope that is used only enables a peek into the neoterminal ileum, and not the entire ileum.

I think they are doing a different scope to go higher up, but what they should be doing on you is an MRI Enterography or a camera endoscopy. Those procedures enable visualization of the entire ileum. There is no scope that enables them to see all that they will see in either the MRI Enterography or the camera endoscopy. I would ask them why those diagnostic tests are not being performed. The MRI Enterography is a test in which contrast is imbibed and they can visualize thickness of the bowel walls which will tell them whether there is other, similar inflammation further up the pipeline. This would possibly confirm or deny a suspicion of Crohn's. In my case it tended to deny Crohn's because the inflammation was limited to a very precise segmental area and all tissue elsewhere was 100% normal.

Since at least 2008 when it first appeared on scope, I have had indeterminate inflammation in my neoterminal ileum consisting of scattered ulcerations within 30 cm of the pouch inlet. In my case it has been labelled "ileitis"/indeterminate Crohn's. But due to the fact that I have a stricture at the pouch inlet due to inflammation, it is thought to be caused by a pooling of feces or "backwash stool" above the pouch, which has created a bacterial overgrowth situation in the neoterminal ileum.

It could be in this case that the Doc just wants a better look before ordering those other procedures. I have been asked to do a colon-like prep when they are planning to go higher up with the scope. They are possibly using a different scope, it is getting stuck further in for sure (hence you WILL need sedation and people who are telling you otherwise are likely not discussing the same procedure) and they need the entire ileum cleansed of stool, not just the pouch.

This is why I suggest you ask them to talk to the doctor directly and get instructions from HIM, not the assistant, not the nurse, but the doctor who will be performing the scope. HE is the one who knows what he will be doing and what prep he needs for it.

You are not being a difficult patient by finding out what is going on. It is one thing for them to tell you to just do something, but they should also be able to tell you WHY!

To us, these procedures are common, but they really are not. They are pretty rare. That is why my doctor just tells the staff that "the patient knows what prep to do." Saves a lot of back-and-forth.

Having worked in the field, I know that giving partial answers just adds to the confusion. Unfortunately, some nurses assume that patients cannot absorb that much information, or don't get the full answers themselves.

Jan