Floppy colon??

CathyMaine · Post by **CathyMaine** » Fri Apr 06, 2012 6:19 pm

Hi everyone,
Had my follow up with my GI today and she wants me to give the Entocort 4 more weeks @ 6mg. and then try to taper down to 1 a day. She suggested that I take immodium @ the time of taper if the D comes back. I am currenlty GF/DF and she suggested I start back on gluten as I, "didn't test positive for celiac disease" I said no thanks but am wondering if anyone has thoughts about this?

Another question, does anyone here have a "floppy" colon? She was unable to complete my colonoscopy (although she did take biopsies) because of this and while I was "cooperative" (her words) during the proceedure, she said none of her bag of tricks worked and that when I turn 50 I will have to go under anesthesia and then if that doesn't work, a CT scan will be ordered. She was concerned that if it went to that and there was a polyp found, how she would get rid of it? Isn't there something called a virtual or a 3d colonoscopy or is that the CT scan

Oh and my blood work came back all normal-I am not post menopausal, my Vit.D and B12 levels are great so my PCP is not sure why my cycles have stopped for the last 6 months. I will be getting more tests done within the next 2 weeks.

MBombardier · Post by **MBombardier** » Fri Apr 06, 2012 6:25 pm

Hi Cathy~

"Floppy" is a new term for me. My GI told me that my colon was tortuous, meaning twisted, which he said was a marker for intestinal bowel disease. I wonder if that is what your GI was trying to tell you?

Post by **tex** » Fri Apr 06, 2012 8:41 pm

Cathy,

I had a "tortuous" colon, also, and I've never heard of a "floppy" one. The colon is usually inflated with air pressure, during the scoping, so I can't visualize how "floppy" could be a problem, unless it involves twisting. If you didn't have any polyps this time, and you keep your vitamin D level up, you shouldn't have any polyp problems in the future. A virtual colonoscopy is done by a CT scan, I believe.

Anytime you hear a gastroenterologist recommend that someone go back to eating gluten, because they "didn't test positive for celiac disease" you know that you are talking with a GI doc who doesn't understand gluten-sensitivity, and who almost surely doesn't understand MC, either. Your doctor sounds typical of the majority of GI specialists who still don't have the foggiest idea what MC is all about. Unless you want to be sick for the rest of your life, please ignore that advice. Your doctor is taking your money, and handing out bad advice in return. Shame on her.

If you want more evidence, consider the fact that celiac disease is notorious for causing missed periods, (amenorrhea), except that you don't have to have celiac disease for this to happen - you just have to be sensitive to gluten. Did your doctor check your folate level? That can cause amenorrhea, also, and it's often associated with a malabsorption problem, due to gluten-sensitivity.

Tex

CathyMaine · Post by **CathyMaine** » Sun Apr 08, 2012 5:46 am

Thanks Tex and Marliss for your responses. I'm not sure what she meant by floppy but she made sure to tell me that I'm an anomaly....great!

My eyesight-blurry vision, eye pain, and difficulties focusing is still a concern and she did call the eye center and she was able to get me in this thursday, so that's good news. She claims that vision problems are not usually a side effect of entorcort but are a side effect of Prednisone? Not sure but hopefully my vision is just an age thing??

DebE13 · Post by **DebE13** » Sun Apr 08, 2012 3:32 pm

Hi Cathy-

I agree with Tex- avoid the gluten. I am no expert at all, but I can relate to the eye problems and have been disppointed in the doctor's lack of concern about it. Although, they don't understand it so I'm not sure what I expect. Actually, I expect answers and help but am beginning to accept that I won't get my money's worth from them. I was so relieved to find others here with the same eye problems- it was a good confirmation because I was telling my family for years that it's food that is/was making me sick. I can understand where saying eating bread (or whatever) makes my eyes hurt makes me seem like a nut but I'm begining to trust what my body is telling me.

I also took prednisone for about 8 months and had eye problems before that. I'm on entorcort now and still have issues. I don't think it's related to the drugs at all but food. I continue to complain about eye pain, feeling like there's sand in my eyes, severe burning, redness, a feeling of high pressure in my eyeballs, light sensitivity, eye fatigue, blurred vision that itsn't severe but noticable, and a puffy feeling without visible inflammation. My GI sent me to the opthamologist and I had numerous tests done and was told I have dry eye and nothing else. It was good news but disappointing. I find some days better than others and am trying to watch my food log to see if I can find what may be causing the problems. If you were to ask me what my biggest issue is right now, I would say eye pain above the D issues.

I am always sensitive about blaming issues on age......I've been told by many people that poor eyesight comes with age, fatigue comes with age, stiffness comes with age, and the list goes on. I agree our bodies slow down a bit but I'll never accept that convenient excuse that seems to
poo-poo

some of our underlying health problems.

I'd be interested in what your eye doc has to say and what you do to minimize the discomfort.

mzh · Post by **mzh** » Sun Apr 08, 2012 6:44 pm

If that's the same as a floppy cecum, I had it. When it twisted on me I had a cecal volvulus. I lost some of my colon and the cecum. The appendix is attached to the cecum so that went too. Good thing; I had a carcinoid tumor on it. It was a nasty surgery but it saved my life. I never had trouble with colonoscopies though nor was this ever mentioned.

CathyMaine · Post by **CathyMaine** » Mon Apr 09, 2012 5:42 am

DebE13 wrote:Hi Cathy-

I am always sensitive about blaming issues on age......I've been told by many people that poor eyesight comes with age, fatigue comes with age, stiffness comes with age, and the list goes on. I agree our bodies slow down a bit but I'll never accept that convenient excuse that seems to
poo-poo some of our underlying health problems.

I'd be interested in what your eye doc has to say and what you do to minimize the discomfort.

Hi Deb,
Thanks for the response and I so agree with your comment about age! I workout, don't look 43, and before this disease felt 10 years younger than my age but with all of these symptoms, I start to wonder myself. I will post after my eye appt. Thursday.
MZH-I don't think its the same thing as a flooppy cecum. What she had indicated was that she could not turn the 1st corner in my colon with the instrument and so was unable to see the entire length. I do worry about a tumor but will cross that bridge when I turn 50 and she attempts another colonoscopy under general anesthesia.

hoosier1 · Post by **hoosier1** » Sat Apr 28, 2012 1:22 pm

I have been told I have a "redundant" colon. Sounds like your "floppy" colon. As Tex stated, I have heard them call it tortuous as well. Makes it sound like I have two of them with the redundant comment? If that's the case, take the bad one away so I can use the good one :) Seriously, my last scoping could not be completed either. And at the time, that scared me. They had to put me under general anesthesia and were finally able to progress the scope. This was the first time this had ever occurred. I wonder if I have become floppier over time. I think it is possible.

Before they did the scoping under anesthesia, they did an old fashioned lower GI with barium. And yes, I have heard of CT scans in place for a colonoscopy but I would still think passing a scope is a more effective method of diagnosis, especially because that is how they take biopsies.

You should do fine under anesthesia. In fact, my doctor said he probably only need to manipulate me a little more and I would not have needed any extra sleepy medicine.

CathyMe. · Post by **CathyMe.** » Sun Apr 29, 2012 5:15 am

Thanks for your reply Hoosier! It kind of freaked me out when she used the term "floppy"..I envisioned something floating and flipping around and to be quite honest, sometimes I feel like my gut is twisted! My GI told me on my last visit that I was a "special" case and that she tried all of her, "bag of tricks", with no success. My husband said I was in there for 1.5 hours and unfortunately, I recall some of what she did (turn on my back, pressing my stomach, etc.) I think next time I will really need to be put under because I will be a nervous wreck!

mzh · Post by **mzh** » Sun Apr 29, 2012 9:45 am

It surely is different from what I had. I actually watched a colonoscopy back in 2005. I had a twinge of discomfort going around the corner but that was it. In '08 the cecum twisted and then I was in big trouble. The freaky part is that the MC was in remission at the time; I was having Normans!