Elusive Cystic Lesion in Ileum

[Mozart]

I have a nodule was first noted CAT scan, 6 months ago that was 1.5 cm and called a possible diverticulum. After a second CAT scan monitoring a fistula (none now detected) the report read the following which is all Greek to me:

"3.2 cm cystic lesion in association with a loop of small bowel in the right lower quadrant containing an eccentric enhancing nodule, findings are suspicious for Meckel's diverticulum. The enhancing focus may represent pancreatic rest or gastric mucosa. Other possibilities for the lesion include duplication cyst, the nodular enhancing component however also raises concern for neoplasm such as carcinoid".

This sounded scary but my doctor told me this is not anything to lose sleep over but ordered a Meckels Scan which was negative for a Meckels diverticulum, whatever that is. She then told me it is important to know more about this nodule so next came a deep enteroscopy but was inclusive because it could not reach the area. So next came colon deep enteroscopy which was aborted because of a stricture. It has been almost three months trying to diagnose this thing, and the doctor still tells me don't worry about it. Well I am worried, especially now that she told me she is consulting with the radiologist and surgeon for what do next. I am scared of surgery of any kind.

I really just want to ignore the whole thing be done with it. I guess if I had severe symptoms, but since I started Remicade about 6 months ago most of my crohn's problems are very mild, even the CAT scan shows only mild to moderate active crohns. The doctor is suppose to call Monday with her recommendation for the next step and I guess I don't even want to hear it. My husband is mad at me because of my "attitude". I am just frustrated and now scared.

 

[Grumbletum]

Hi Mozart and a big warm welcome to the forum. Lots of us here know about the worry and frustration caused while waiting for appointments, results etc so you have our sympathies. Have you had Crohns for long? It's good that the Remi is making a difference. Let us know how you get on on Monday.

 

[littlemissh]

Hi,
Perhaps they will order an octreotide scan or bloods to detect carcinoid.

 

[Miss Underestimated]

Well. recently I went through a "worrying" time about my liver - had this scan, that scope, blood tests, explanations, blahblahblah. When I started tensing up with worry, I made myself think about something else. Something good or fun or relaxing. After all that (it went on for months) I finally had normal liver enzymes, and they all acted like they knew what it was all along.

Try to imagine the Remicade healing the cyst, whenever you start worrying about it. It probably is.

 

[David]

Hi there and welcome I'm so glad you joined!

Meckel's diverticulum is simply a little pouch in the intestines that about 2% of the population are born with. It doesn't cause any problems for the majority of people.

I can understand your concern and I don't think there's anything I can say that will alleviate it as they'd be mere words. But it sounds like you've got a good doctor who's smart enough to consult with some specialists and they'll get to the bottom of this soon.

We're here for you. Let us know how we can help.

 

[Mozart]

Update

First, thank you all for your words of support, encouragement and clarification, I am glad I have found you.

I got an email from the doctor this morning and the next step is octreotide scan (littlemissh was right) , I am going to have to look this up to know what it is. What dr. email said was:

"The differential diagnosis remains the same - merkels, duplication cyst with ? associated malignancy or carcinoid. Nuclear medicine thinks an octreotide scan can help in identifying carcinoid. If this test turns out negative follow up with FNA/resection since it is increasing in size"

I called the nurse after I got the report to ask what happens is this scan is positive, she stated that until the octreotide scan is done the doctor really can't say any more but more than likely you will have surgery positive or negative to remove it. It feels like my biggest fear is becoming a reality. What is a FNA/resection? Can it be done laproscopically?

Miss Underestimated I liked your idea , I have a remicade treatment today and I am going to imagine this thing just disappearing.

Grumbletum to answer your question, I was diagnosed after my first routine over 50 colonscopy. Prior to this colonscopy in 2009, I had some symptoms and several er visits but until the colonscopy no one ever thought of Crohns. To this day I still have some problems excepting it because I have been very fortunate not to have any prolonged or severe discomfort just the typical stuff I had always thought was normal. I mean who really ever talks about Crohns symptoms with anyone. I am so glad there is a forum like this just to know what is typical and what may not be. I never asked my friends how often they go to the bathroom, what the consistancy was, or color, I thought I would die of embarrassment when the doctor ask me those questions.

 

[littlemissh]

Hi, I just had an octreotide scan about 3 weeks ago, though mine was to look for gastrinoma. If you want any info about the scan then I'll be happy to let you know. The radiographer said they only do 4 per year at my hospital.
It was very straight forward really.

 

[littlemissh]

Fna is a fine needle aspirate (biopsy). Resection is removing the cyst. Perhaps they could do a fna with a dbe and then resect depending on histology.

 

[Miss Underestimated]

We get over being embarrassed pretty quickly, with this disease. I discovered that describing your poop accurately can help a lot. Who knew? :lol:

 

[Mozart]

Sorry for not responding sooner but I have been in the wait mode with test results and doctor recommendations. The ocetretide scan was inconclusive, but the lesion did not have uptake so they ruled out the lesion being a carcinode, YEH!!! but there was abnormal uptake in the terminal ileum which they think is due to active Crohn's inflammation. The doctors have now determined that Remicade worked for a while but is no longer working. I had a consult with a surgeon last week and of course as surgeons do he recommended surgery. The benefits he stated were to remove the stricture, the lesion and the inflamation and then he reviewed all the risks (all of which I have read in others posts) which really are scary.

The surgeon said that I am on the path to surgery no matter what because of the stricture. He said he felt it was best to this surgery while I am healthy rather than in an emergency situation. He also said that while he doesn't think the lesion is cancer, his guess is that it is a fluid filled cyst associated with Crohn's but his concern was that he has never seen a cyst like this in other Crohns patients, so he would feel better if it was removed for examination.

He told me to think about this and let him know what my decision is. Right now I am thinking about going ahead and scheduling it. I have an appointment with my Gasto doc tomorrow to see what she thinks before really making up my mind. I open to anyones opinion based on your experiences.

 

[David]

A couple things to ask/consider:

1. Is the stricture due more to inflammation that could be reduced with other medications or scar tissue? If it's scar tissue and the narrowing is getting severe, surgery is indeed likely the best bet. If it's inflammation, then maybe try drugs.

2. Are they going to have to remove your ileocecal valve? If so, does the surgeon feel he can rebuild it so as to have that functionality to potentially avoid issues in the future?

 

[Mozart]

After talking to the gastro dr. she did not agree with the surgeon. She recommended that we take the wait and see approach. She said the next step is to have another CT scan to compare the lesion to the last CT and watch for changes. She also wants me to continue on Remicade because she believes it is working. She said that we need to hold off on surgery for as long as possible which is very much in line with my own thinking. She wants me to follow up with three month appointments with her and see how things go. I am so much more comfortable with this plan rather than surgery.

 

[David]

Sounds good, I'm glad you're feeling more comfortable