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On earlier posts, I thought that my problems were related to Rice Milk but now that is not the case. Last month I was tested for Crohn’s Disease and I had a CT Scan with dye and that came out negative. I don’t have Pouchitis at the moment. But one thing is certain, something is not right with me and I have been having these problems off and on, more on then off, since this past April.

My symptoms are Excessive Gas, Bloating, and Stomach Pain. I have to pass Gas just about every hour. Even after I am able to pass Gas, I know there is so much more inside but it is not ready to be released just yet. That is so frustrating.

I get these symptoms no matter how much or little I eat or even what I do eat. I take 4 Beano’s before I eat and then with food, I will take Digestive Enzymes. In between I will take Activated Charcoal and also I have a script for Dicylomine. I sleep with a heating pad on top of my gut. Still, symptoms never go away. I wonder if doing this is doing any good at all? Does not appear to be.

So I saw a different GI that I had seen before and I am scheduled for a 3 hr. breath test next Wednesday to determine if I have Bad Bacteria. I had this test done 2 years ago and that was negative. I had blood tests taking 2 days ago and my doctor called me this morning telling me the blood work was normal.

I will also have to provide the lab a stool test. One will test to see if I have C Diff (I suggested that) but the doctor does not think that is the case with me because he said without a Colon, the odds are against me having that. I can’t remember what the other two stool tests are for.

BUT ONE THING IS CERTAIN, SOMETHING IS NOT RIGHT WITH ME AND TO BE HONEST, I AM HOPING THEY FIND SOMETHING SO IT CAN BE TREATED WITH ANTI-BIOTICS. I JUST WANT TO HAVE A LITTLE BIT OF COMFORT OR SOME NORMALCY IS ALL. I WILL EVEN SUGGEST AND ASK MY GI IF I AM A CADIDATE FOR THE FECAL TRANSPLANT?

HAS ANYONE ELSE HAD SIMILAR PROBLEMS OR DO YOU HAVE ANY SUGGESTIONS THAT I CAN SUGGEST TO THE DOCTOR WHEN I SEE HIM NEXT WEEK?

THANK YOU

ROCKET

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Jan DollarJan DollarModerator, RN, retired
They used to think C. diff was rare without a colon, even impossible. However, with more and more people having j-pouches, it is becomming more and more evident that it is not rare, particularly if you hve taken antibiotics. And not all tests for it are equal in regard to diagnosing it. PCR is the best, since it tests for the toxin forming type. http://www.cdc.gov/hai/organis...iff_faqs_hcp.html#a7

Another, and very common disease for us is IPS (irritable pouch syndrome). Essentially, it is the same as IBS. It is a functional disorder that can be very difficult to manage. The typical treatments are low dose tricyclic antidepressants and antispasmodics. Antibiotics are not appropriate for this. It is diagnosed by excluding other diseases.

It is entirely possible to have both IBS and C. diff too.

Jan Smiler
Jan Dollar
mgmt10mgmt10Member
Rocco,
Not sure who you are going to see but the GI docs around here locally are just not that good. I recommend traveling a bit to NYC or Philly. Jefferson university hospital in Philly has a terrific GI dept. Let me know if you want the name of my GI dr. She's real good and has patients with j pouches so she knows what she's doing. Sorry you are still having troubles. The past few weeks have been very rough for me....not sure what's going on but I have my annual scope with my surgeon in two weeks so I hope I can find out what's up.
mgmt10
mgmt10mgmt10Member
I was seeing a GI doctor in Manhattan when I still had UC. His name is James Marion. You can google him. He's very smart and will take a lot of time with you (he's a bit pompous though). The only trouble with his practice is they don't take insurance. At least 5 years ago when I was there they didn't. He's one of the top GI docs around. Long story why I stopped seeing him and ended up with a gi in Philly.
mgmt10
R RocketMember
That is a good reason to stop seeing a doctor if he does not take insurance. I would have done like wise.

Another reason I prefer NYC is I can just take the train to NYC Penn Station and have become somewhat familiar with where I need to go.

My driving is now limited, especially since my night vision is very poor. I would not even know where to pick the train up here in NY to go down to Philly.

After I get results from this local doctor, if what ever they put me on works, then I will nt need to proceed.

However, if not, I still want to research this board of what doctors are recommended in manhattan.

I really need to watch my funds now that as you know, I am going thru a divorce.

R
R
R RocketMember
Thanks Marianne,

I normally see Dr. Daniel Sadler in Bridgewater who is located on Rte 202 South, just before Wegmans.

In Flemington, I am seeing Dr. Stephen Willis. But I think you are right, I need to see someone with more recommendations and thanks for the suggestion.

I sent CT Barrister a Private Mgs as I have been looking around. I think I will create a new post.

Thanks again.

Rock
R

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