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Genie75
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 6/18/2009 11:39 AM (GMT -6)   
Hello,
   I am here because I believe I had ulcerative colitis. I have had a diagnosis of IBS for the past 13 years, but in the past 2 years I have gotten way way worse. I sort of gave up working with the doctors on it. They seem to think because I am not "bleeding" and they can't see anything when they do a colonoscopy or CT scan, etc, that I have IBS. The reason I feel that it is not IBS, is that the traditional things people do to help IBS do not work for me and only make me worse. So maybe I should go back to my doctor and tell her that. I find that she does not listen to me though.
   I was in pain the day after my last colonoscopy and the GI that did the colonoscopy refused to see me. Told me to go and see my medical doctor, but my medical doctor was away so I ended up in the walk in clinic.
   Anyways, I have had pain in the left side for the past 1-2 years. Went to emerg and they did a CT scan. The could not see anything.
   As of late, I am finding that when I manage to get rid of the pain in my left side then I get it in my right side. So it is very frustrating. The pain in the right side is a brand new thing I have not experienced before.
   The most frustrating thing is because I have a diagnosis of IBS, I fit in nowhere. I do not fit in the IBS support groups, because my trigger foods are radically different than their's. I get "inflamed" by any type of fiber pretty well. If I don't get enough fiber I suffer, and if I get too much (and it doesn't take much to be too much), I suffer.
   So to my friends and family I am known as the person who hardly eats. I have been called anorexic (which I'm not). I've lost 20 lbs in the past 2 years, not from dieting but because of my inability to eat (or should I say my fear) to eat.
   I seem to be making some progress, with eating very small amounts of foods with natural soluble fiber in them, but to prevent them from getting stuck, I must also eat them with another type of food that has laxative qualities, like spinach, to keep everything moving. If the food stops moving (constipation I guess), I will suffer from either spasms in the left or right side, till I get everything out.
    Sorry to give the gory details. I really do suffer. I have suffered emotionally with this, I have suffered socially, I have gotten into fights with my bf over what I can and cannot eat, I have developed fear of eating, and the very worst thing of all, because I am stuck with this diagnosis of IBS, and because I do not fit the "mold" of a person with IBS, I have a total lack of support from anyone. I have no one to turn to. I am isolated. I do as best as I can. I am still working, and am very lucky to have a job when I can use the washroom anytime I like, to help with those days I am constantly running to the bathroom, and that is most days. If the food is not stuck, then the food is running thru me. Either way, not fun.
   I hope that I wil be accepted on this group. I really need a place to vent and seek support.
   Maybe some of you can help me with trying to explain all this to my doctor. Just seems like no matter how much explaining I do, because I am not "bleeding" I am stuck with the diagnosis of IBS, which is really alienating me from getting any support with my problem, and makes me feel isolated.
 
Genie

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/18/2009 11:57 AM (GMT -6)   
This does not sound like UC but maybe Colonic Inertia? Have you asked your doctors for a sitz marker exam? I think your problem is motility?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 6/18/2009 11:58 AM (GMT -6)   
here's the thing- if they don't see any ulcerations or inflamed patches during a sigmoidoscopy or colonoscopy, then you have IBS. If they see those, then you have IBD. It really is that simple. Get your scope reports & see what they say. Find another GI & have a c-scope, see what it shows. The diagnosis of IBD vs. IBS is simple.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/18/2009 12:01 PM (GMT -6)   
Honestly, I agree with your doctors that it doesn't sound like you have UC. Not because you're not bleeding (I didn't bleed all that much) but because your colon looks normal, especially if you've been experiencing symptoms at the time the colonoscopy was done. (I say that because people with UC can have relatively normal looking colons if they have a colonoscopy when they are in remission.)

When it comes to diet and IBS, my understanding is that what helps and what hurts can vary a great deal from person to person. So, I say just figure out what works for you and screw what everyone else says. Have you tried probiotics at all? They might offer some relief.

Still feel free to come here for support, though. We understand how much it sucks to have bowel issues.


Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 6/18/2009 12:17 PM (GMT -6)   
Just make sure they took biopsies of your colon to rule out microscopic colitis which cannot be seen via colonoscopy alone (the reason for the biopsies is so they look under a magnifying scope to rule out microscopic colitis aka; collegenous colitis.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Genie75
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 6/18/2009 1:18 PM (GMT -6)   
OK thanx for all your replies. I have gotten way worse since the last colonoscopy. I have been to see my doctor once since then and she wanted me to start taking antidepressants for my IBS. I don't really want to get back onto those again.

I will see if I can find out if they took a biopsy of my colon. I will ask about the sitz marker exam to check motility. Thanx for your suggestions.

I am so frustrated. I literally spend each living moment worrying about what I can eat, what I should try to eat, etc. I have become obsessed with it.

My diet is very limited. Have not eaten glutens in years. Got worse though, so now I've gone paleo, so no grains whatsoever. I seem to do OK on leafy greens for about a week, and then I degrade after a week of that.... what a struggle... wish I could eat like everyone else.

Thanx for listening. I feel better having vented. thanx so much

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 6/18/2009 10:45 PM (GMT -6)   
That's terrible if your doctor sees anti-depressants as a solution for bowel dysfunction. Have you been tested for food allergies? Are you lactose intolerant? There's a whole range of different responses to foods among patients with bowel issues; nothing is written in stone-- unless you have celiac disorder & cannot tolerate wheat gluten. It may be time for you to look for a new gastroenterologist, someone with more interest in intestinal function who can empathize with your situation. Best wishes! / Old Hat (30 yrs with left-sided UC ... [etc.])

Hollyhock
Regular Member


Date Joined May 2009
Total Posts : 25
   Posted 6/21/2009 8:45 AM (GMT -6)   
Hi Genie,

pb4 is absolutlely correct. I was just recently diagnosed with collagenous colitis after a colonoscopy with biopsies taken. My colonoscopy looked good but my pathology reported microscopic (collagenous colitis.) I think perhaps you need to see a more thorough gaestroenterologist. Although a diagnosis isn't fun, it gives you the knowledge of how to treat your problem. From my understanding, collagenous colitis isn't seen as often as UC. There are a few of us here that have it. Good luck.

Holly

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/21/2009 9:15 AM (GMT -6)   
Old Hat said...
That's terrible if your doctor sees anti-depressants as a solution for bowel dysfunction. Have you been tested for food allergies? Are you lactose intolerant? There's a whole range of different responses to foods among patients with bowel issues; nothing is written in stone-- unless you have celiac disorder & cannot tolerate wheat gluten. It may be time for you to look for a new gastroenterologist, someone with more interest in intestinal function who can empathize with your situation. Best wishes! / Old Hat (30 yrs with left-sided UC ... [etc.])
 
It seems strange, but antidepressants are often prescribed for ibs.  A good friend of mine thought her doctor was nuts when he prescribed them for her ibs, but they worked.  Apparently, there is a large amount of serotonin in the gut.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 6/21/2009 12:09 PM (GMT -6)   
I hope they did biopsies even thought there was no visable inflammation as there is a little something called microscopic colitis....

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 6/21/2009 12:30 PM (GMT -6)   
I had IBS for years before getting colitis. I ignored the IBS symptoms until I started bleeding out my butt.

I have since changed my diet, and I no longer have IBS symptoms.

Have you tried alternative treatments such as probiotics, boswellia, turmeric? These can reduce the inflammation and aren't harmful to the body like colitis medications are.

Keep a food diary. There could be other foods that cause issues that you aren't yet aware of. Plus, there are foods that help reduce both IBS symptoms and any inflammation you might have.

Yes. Bleeding does make a difference. I loose tons of blood with lots of blood clots when I'm flaring. If you aren't having such severe symptoms, then you shouldn't have to take strong medications.
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working

Post Edited (subdued) : 6/21/2009 11:35:05 AM (GMT-6)


Hollyhock
Regular Member


Date Joined May 2009
Total Posts : 25
   Posted 6/21/2009 6:53 PM (GMT -6)   
I had just recently had a food allergy test while accompanying my DH who was a patient there. I asked to have it also and they accommodated me,too. They of course only test for the most common triggers, but wheat was not one of mine although I was going gluten free. The allergy test is worthwhile but quite expensive as they commonly only test for the most obvious ones and each one by iteslf is quite expensive. I now know that wheat is not a problem for me. It is a tough find and go seek in this game of colitis I am finding out but I am finding some good keynotes into my health issues. Hope you do too.

Genie75
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 6/23/2009 1:51 PM (GMT -6)   
Hi,
I will call my GI's office and ask if they did the biopsy during the colonoscopy. I would have assumed they would have done it, but I guess you never know.
I did find a better IBS forum where people are more open-minded.

Very good listening to you all....
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