Polyps in Ileum - Any Advice?

So, I had a complete colorectomy thingamabob done about 4 years ago. (Laughs) They removed colon, anus, and rectum. My surgeon decided that I needed to have a colonoscopy along with my usual endoscopy, and I am being told that he found polyps once again. I'm trying not to freak out about this and wait until my appointment on Friday, but I'm failing at keeping calm here.

Having Familial Adenomatous Polyposis is going to drive me to drink. I already know that my duodenum is going to be the next part to go, but I never expected to start getting polyps in my ileum. Has anyone else dealt with them there? Am I going to lose that as well? I've Googled until my fingers threatened blisters, but there isn't anything written on that particular issue.

I had written about another strange problem I had been having, and I finally have something positive that I can share with the class. For a few years now, I was getting severe chest pain upon activity whenever I ate. For hours after eating, my heart rate would rise above 120, and any activity would cause crushing chest pain. After a few hours, I would begin a series of rapid-fire burping that felt so good, and the pressure in my chest would start to ease. The doctors have been baffled and have tested me for everything they could think of. They quickly ruled out any heart conditions but figured that it had to be GERD. Tests for GERD came back negative, and the fact that my heart rate rises to 150 even when asleep had them concerned. Well, it turns out that they will have to retest for GERD because the normal tests require that you drink liquids to test motility and such, but my problem only happens when I eat something solid, so the tests all failed. Yes, I know I'm a mutant!

LOL, that is at least one weight off of my mind. It is either GERD or Esophageal Spasms, but at least I'm closer to a definite answer.

Hello Zalibee. Thanks for your post and sorry to hear you are still having problems with these things.

Some time ago I had similar problems with pains in the chest after eating solid food and GERD was just one of the suggestions for a diagnosis. All the tests were done for that and easophagus problems but nothing substantial was found. I decided to liquify everything (in a liquifier) before eating it, or should I SAY DRINKING IT. That helped quite a bit but I did try other things as well so I'm not sure which of the attempts at a solution worked best. One of the peculiarities with my eating habits is that I eat in the evenings so the pain was often when I was in bed.  I bought one of the beds that made me tilt my back up at about a 60degree angle and I think that helped a lot. I still get the problem every now and then but not as severe as it used to be.

Best wishes

Bill 

Hey Bill!

If your doctors knew that your problem was with solids and not liquids and still came up with negative for GERD, you might try asking them about esophageal spasm. There's no real reason behind it, it just happens. But, they can prescribe a "smooth muscle relaxer" and that usually helps. Not always, but it's a shot.

I've been downing Ensure or smoothies during the day and my meal at night but the chest pain is so annoying and makes it hard to get to sleep. It is like there is a mass in my chest that's fighting to get out.

Do you suddenly start burping and then feel loads better?

Zalibee the Bumblebee!

Helo Zalibee. I was taking Domperidone for a while (It's a muscle relaxant)  and it did seem to help but it should have come with an additional  health warning!!  I also have a CPAP (Continuous Positive Air pressure) machine that I use at nights for sleep apnoea. These tablets relaxed the throat  muscles so much that the flap in the throat that stops the air going into the stomach was not working and I literally filled up like a balloon before I realised what was happening.  This was a very painful experience that I would not wish on anyone else. After that I only took them in the mornings and before an early lunch so that the effects had worn off by nightfall. Sometimes that didn't work either so eventually, in the interests of a good night's sleep I gave up using them altogether.

The burping (or farting) brings instant relief but I find I cannot always do either of those to order. Given that this is the case, perhaps the reason they cannot find too much wrong when they look is because a lot of the pain is caused by  'wind' which would not show up on their tests.

I do still have easophagus problems and solid or stodgy food will sometimes stick in my thoat and not pass down at all so I have to massage it back out again.  If I cannot do that then I wash it down with a cup of Metamucil which seems to work wonders for me.

Best wishes

Bill 

I received info this week about an incredible study that is reducing the polyps -- this is the connection and I wish you the best -- I have lost the entire ileum -- you will do well, just go slow and don't panic -- this is for FAP and you may qualify.

Details of eligibility criteria are available on the NCT website. Let me know if I can help.

With best wishes...

Alfred M. Cohen MD, FACS, FASCRS

Chief Medical Officer, Cancer Prevention Pharmaceuticals

1760 E. River Rd, Suite 250

Tucson, Arizona 85718

(520) 908-7774 Cell (520) 400-0116

www.canprevent.com

This is a worthwhile site to help you with FAP and it is really promising

http://www.hcctakesguts.org/#!fap-clinical-trial/c1rcw

Thank you, Bill.

They are sending me over to the University of Miami in a few weeks to try some more tests. I pointed out that I may have passed all of the past tests because they gave me thin liquids and it never triggered the problem. They are going to try other ways to trigger it during tests, so I am hopeful. Very hopeful. I will make sure to mention the medication you were on to see what they say!

Zalibee the Bumblebee

Thank you Ewesful

I contacted them but since all of my care goes through the Veteran's Administration I do not qualify. Boo!

Zalibee