Ulcers above the j-pouch in small intestine

Barbara,

I have ulcers in the ileum above my J Pouch, and they do not know if its Crohns Disease or not. They did an MRI Enterography on me which I posted about in the other thread, and found thickening of my bowel where the ileum connects to the J Pouch. My doctor thinks the inflammation is due to fecal stasis due to narrowing of the pouch inlet so it may be that and not Crohn's causing this inflammation. I have had Crohn's suspected previously but I previously was negative for it on CT Enterography and on Prometheus. I am also told the pattern of inflammation does not seem like Crohn's, because there is a large swath of healthy tissue between the inflamed area at the vortex extending 20 cm above the pouch. I have had two different experts tell me that what I have does not seem like traditional Crohn's Disease and my diagnosis remains unknown IBD.

Your Doc may want to send you for an MRI Enterography.

My question is how does having an MRI Enterography change your treatment?

The MRI will be able to give an accurate image of how thick all the different layers of your intestine are. UC/pouchitis and other inflammation mainly affect only the inner most layer of the intestine. Crohn's on the other hand can cause the main layers of the intestine muscle to thicken, which can cause obstructions.

The MRI will also isolate any area of inflammation not detected on pouchoscopy. In other words they will be looking further up the small intestine in areas they cannot see on scope for areas off thickening/inflammation. If they see it way up the pipeline that would be evidence of Crohn's. If they don't see it, then you may have the same situation as me, inflammation and ulcers being caused by backwash stool due to a narrowing or stricture at the pouch inlet or in that area. Although at this point it is not clear what is causing the stricture itself.

Thank you both for the replies. This sounds like a very reasonable and appropriate test for me. I will ask.

Barbara,

Keep us posted on what happens. It sounds like you may be in the same boat as me with inflammation above the pouch. I had a long post about my MRI Enterography in the pouchitis thread. There is nothing painful about it but it did take almost 3 hours.

Good luck.

CT Barrister,
Having my MRI enterography tomorrow. One year later and still not better--on Humira, prednisone, Levaquin, and Xifaxin.
Thank you for the detailed post on the procedure. Always good to know what to expect.
Take care. Hope you are well.

Just got back from the facility that was to do my MRI Enterography. No go. The woman who checked me in gave me the wrong type of contrast and did not realize it until I had already chugged the bottle. Now I have to flush my system with copious water and reschedule in one week. Not happy and have a phone call into the director of the facility. This is an inconvenience for me but could have been dangerous for someone else. It did not occur to me to question if this was the correct contrast when she gave it to me. When I asked her when I would be drinking the next bottle, she looked perplexed, and I knew there was a problem. This is the first time I have done an MRI or CT outside of the inpatient setting. Not going back there, most likely. May have to just pay a large co-pay and go to Cedars Sinai.

So I suggest anyone getting oral contrast double check to be sure it is the correct type.

Afternoon

This am I was scoped an a lesion was found just as you described.I am having Scans on Friday and did blood test.MY gastro is questioning Chrohns disease as well
I am so greafteful for this forum .Seeing this thread calmed me down.

Thank you for any input you have on this topic
Cassiecass


Scared I am..I have cried all day

Oh Cassie, please don't cry. Hope all goes well. There are so many options and you have our support. Keep us posted. I know it is scary not knowing...

HI
I have come along way in last 2 years.But yesterday I really thought ok Pouchitis when scoping was completed I was in shock .I need a surgeon again.I am having ct scans in afternoon tomorrow.I told Gastro lets see first .All kinds of lab work was drawn.

IN May I started with pain and could barely sit.
I describe pain as being in labor 14 hours.I was blocked again.My diet is strick.I am so careful.
I am thankful for this forum and all its support
Cassiecass

Evening

I am doing ok.Awaiting Path reports.Radiologist came and spoke to me after scans were completed.He made me feel good.I went thur alot 2 years ago from 2 MIs unstable thyroid condition Lung woes, kidney failue.I never want to be in that area ever again.I see Gastro Md next week.
From my readings here I know I am not Alone,
Thank you for your support
Cassiecass
If I need a Colon surgeon again NY will see me post asking for one,I truly like my Gastro Md.

Barbara,

The contrast used for the MRI Enterography is called volumen. It is unbelievable to me that they could give you the wrong contrast. They are supposed to put out 3 bottles of the contrast which are chugged in successive 20 or 25 minute intervals and you have to drink each of the 3 bottles. If she gave you the wrong stuff then she gave you 3 bottles of the wrong stuff.

You should not be charged a penny for anything that happened on that date.

The volumen is a sort of opaque, gooey substance that is a barium sulfate suspension. Not a horrible taste, but definitely not great either. Tolerable, in my opinion, if you drink it very rapidly and do not savor it.

CassieCass

My diagnosis is/was questionable for Crohn's since they did a CT on me in 2008. They believe the inflammation above the pouch is not Crohn's but rather is due to "backwash stool" and SIBO resulting from the J Pouch inlet area being strictured. Because that channel is narrowed when I move my bowels stool is backwashing up the ileum and they think that is why I have some irregular ulcerated areas (but no real inflammatory pattern) above the pouch.

It is what they are seeing above the pouch that is really important. If it is scattered stuff and never showed up before, it could be backwash/SIBO.

I am currently on Lactulose, probiotics and have given up sugar and carbs and been off antibiotics for a month.

You should consider the camera endoscopy if you do not have any strictured areas like I do.

CTBarrister,
What is SIBO?

BTW I didn't pay anything and I discussed the mistake with the management. Nevertheless, I won't be going back there.

quote:

What is SIBO?

Small intestinal bacterial overgrowth. It is really a spillover of the issue from the pouch into the ileum above the pouch. Dr. Shen and his proteges, one of whom is my GI, is preaching lactulose and dietary changes to control the issue and so far it seems to be working for me.

http://en.wikipedia.org/wiki/S...bacterial_overgrowth

Regarding the mistake that technician made, I don't know where you had it done but those kinds of mistakes should not happen. My tech called me the day before, told me to hydrate myself so that my veins would be "plump and juicy", and had the 3 bottles of volumen with the time I was to drink each written on each bottle. In other words, she was prepared. She told me to finish each bottle and came back and made sure that I did.

What did management tell you? And what was the stuff that you drank that you shouldn't have? It obviously wasn't volumen.

CT Barrister
Why are you on Lactulose? Doesn't that cause loose stools?

Lactulose is a treatment for pouchitis. It assists by acidifying the stool thereby making an environment less hospitable for the bad bacteria that causes pouchitis.

It does loosen up the stools if not taken with antibiotics. I am of the opinion that it helps. It takes time to reduce the bad bacteria levels. Diet is part of it, lactulose, probiotics and antibiotics all help. I am slowly getting the intestinal fauna where it should be. As vanessavy and others have stated, it could take a year, but I have had results after 6 months of cutting carbs and sugars.

In addition, lactulose is one of the many types of prebiotics (food for beneficial bacteria- probiotics).

Jan

The one very ironic thing I can add about lactulose: it looks, and tastes, like a very sweet corn syrup. Although I have cut sugar out of my diet, the lactulose is the sweetest thing I have tasted since soaking my pancakes in maple syrup in my 2012 pre-Paleo days.

Due to my stricture, I have been using milk of magnesia to thin my stool on and off for some time (on the advice of my GI and with the approval of my colorectal surgeon). Perhaps, lactulose would be a better choice for me.

Barbara,

My GI told me to do a test run with the lactulose with antibiotics for 2 days and then one week without. It loosens up the stool quite a bit. It is prescribed for constipation, as is milk of magnesia. However lactulose has prebiotic properties as noted by Jan plus it also acidifies stool to treat the SIBO situation.

I found that when I was taking lactulose with no antibiotics I really had to jack up the imodium count because I was kind of runny. Normally when I am taking antibiotics, one imodium taken at bedtime does the trick. On lactulose alone, I was taking as many as 6 imodium a day, which is way more than what I usually take.

Of course, if you have a stricture, you must be VERY CAREFUL with counteracting the looseness with stool thickeners like imodium and should talk to your Doctor. I do have a stricture at my pouch inlet, and have developed partial blockages in the past from taking too much imodium. But lactulose will definitely loosen up your stool.

My dosage of lactulose is 2 teaspoons taken 3 times daily.

Another safe laxative for regular use is Miralax.

Jan