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Still doubtful of IBD diagnosis

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Ulcerative Colitis
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Posted 10/5/2014 10:26 AM (GMT 0)
If GI doc says he saw inflammation and ulcer during colonoscopy, is it conclusive? I mean, is there a possibility of misdiagnosis or false positive when it comes to colonoscopy? I just find it hard to believe that I have inflamed colon/rectum when I don't even have diarrhea and feel any pain. Is this a case of mild IBD?

I had a colonoscopy done due to intermittent rectal bleeding. The doc sent samples for biopsy and it will take two weeks to get the results back. In the meantime, I'm worried sick. Hoping and praying that through some miracle the pathology won't show any signs of UC or CD. Please help me understand IBD more. Is it sometimes symptoms-less?
Posted 10/5/2014 11:07 AM (GMT 0)
Colonoscopies are the most reliable diagnostic tool.

A lot of people experience symptoms one by one - it's possible that you're nipping this in the bud before it gets to that stage. I ignored my gradual onset of symptoms for a long time before they all built up. At the same time, a lot of people with UC have only very mild disease, and it's possible you're such a case.

It's really, really not a big a deal as you're making out. If you do have UC, (which isn't even confirmed yet), risk of colon cancer only goes up after ten years, and normally only if you have pancolitis. You'll probably go on mesalazine, the safest UC drug, and go into a life long remission. Most people manage without it even affecting their lives. Remember that you're talking to the more experienced and serious cases on here, so our perceptions are a little skewed I guess, but mild UC genuinely isn't anything to stress about - that will only make things worse. Count yourself lucky your symptoms are only mild.
Posted 10/5/2014 11:27 AM (GMT 0)
Thanks, Malaika. I cannot even begin to describe thr anxiety I've been through since yesterday's colonoscopy. My GI couldn't give me definitive answers but he's thinking it's more likely UC. I've already started reading up about it online and it doesn't look good. I'm only 31 years old. I have 2 young kids, and I don't want this disease to debilitate me and control my life. I suffer from anxiety and panic attacks. I know worrying won't do any good. I just can't help it. I'm looking for more useful info within this forum/site. I appreciate your response, Malaika.
Posted 10/5/2014 1:01 PM (GMT 0)
I know, it's absolutely terrifying. I had just turned 19 when I became sick, and I didn't know what it would mean for the rest of my life, but even though mine's pretty serious and it looks like it's heading towards surgery, I can honestly say I've never been happier. It's just one of those extra baggages you'll have to deal with. I'm also prone to depressive states and panic attacks so I know how you feel - it's not easy to just 'stop worrying'. This forum is a life saver, if you have any questions just type them in the search bar up top and you'll get loads of results, and feel less alone. It's all new and scary in the beginning, but I promise UC doesn't have to control your life.
Posted 10/5/2014 1:16 PM (GMT 0)
Malaika is right. Every human being has their own crosses to bear on any number of issues from health to others. To live in a bubble and think that nothing of any kind will ever happen to you is just not realistic. You would be very surprised to find out all the things wrong with many in a crowd of people. While UC is no fun by any means there are many, many other things that could be way worse. Anxiety makes the disease worse so you have got to figure out a way to get that under control.
Posted 10/5/2014 4:10 PM (GMT 0)
I think you should try to stay calm until you get the results of the biopsies. At this point, he saw inflammation, but it's possible it has some kind of bacterial cause and it's not chronic. It is entirely possible to have a mild case of UC that isn't all that symptomatic. When my UC began, I didn't have too many symptoms and it went on like that for a while. Many cases do not progress. it's possible you could have UC and stay mild and treat it with something as simple as a rectal suppository before bed. It seems like a lot of us here have difficult to treat cases - it's easy to see that and get the idea that it's normal. I would imagine there are tons of people out there using mild medication to treat their UC for a lifetime.
Posted 10/5/2014 5:05 PM (GMT 0)
mla 1209, I really hope you don't have an IBD (either CD or UC) but instead just some nasty intestinal bug that they can clear up for you.
Posted 10/5/2014 5:24 PM (GMT 0)
It's through a serious of elimination that the diagnosis of UC or CD or MC is done.

Regarding other diseases worse than as per Gary's supportive statement...while this can be true, it doesn't change what you have. It is what it is.

Get real smart on what testing reveals, and make a list of questions to ask your doctor when you see him again. Please make sure you get a copy of the pathologist results for your records and for research. Also...before you're treated, KNOW what the medication options are and be ready for your appointment.

Keep us posted as to the outcome and ask lots of questions of stuff you're unsure about.

Hang tough....this is a difficult process to do through.

q
Posted 10/5/2014 9:22 PM (GMT 0)
Thanks for all your advice. I guess what I wanted to know was- Are all colon inflammation automatically IBD? Can it also be something benign? Well, you guys are right. No use worrying about it now till I get the results back.

It doesn't help that my doc wrote "Pancolitis" which I heard is the worst and has the highest risk of developing into colon cancer. I've been dwelling on this for two days now- just wondering about what my life would be like now that I may have a chronic disease. I feel bad at the same time, complaining about this when a lot of you have suffered a lot already.

Thanks for taking the time to read and answer. Appreciate it.
Posted 10/5/2014 9:39 PM (GMT 0)
I suppose it could be Diverticulitis, but I think inflamed colons are likely to be IBD. Also the increased risk of colon cancer is only slight, and you'll be screened so frequently now that you'll be able to nip it in the bud immediately, it's completely treatable.

Please trust me on this, your life will still be full and beautiful and active as it always has. Shortly after my diagnosis I made friends with this amazing person at university, only later finding out he had UC as well, and he studies hard and parties hard and does about fifteen sports, and he was my inspiration. There is NOTHING you can't do.

I don't want to get preachy on you because I know a lot of people here take offence at this viewpoint, but I do believe that suffering brings so many blessings, and you will find out you're stronger than you ever thought possible. There's nothing special about any one of us, we were all in the same boat, newly diagnosed and confused and terrified and ill-equipped, but you learn fast and you make do and you find the silver linings.
Posted 10/5/2014 10:10 PM (GMT 0)
Diverticulosis is inflamed villi in the intestines and is considered an IBD from what I read years ago, just not a main IBD like CD or UC is...if that makes any sense...

A hypothesis: is diverticulitis a type of inflammatory bowel disease?

Abstract
It is accepted by epidemiologists that diverticula formation in the colon is related to a deficiency in dietary fiber intake, but the cause of acute diverticulitis remains unknown. A hypothesis is presented that acknowledges from the literature that fiber deficiency is also related to an altered intestinal microecology with a change in the bacterial flora. It is hypothesized that the change in the flora with a decrease in their influence on the immune process permits a low-grade chronic inflammation in the mucosa, which is the first step in developing an acute infection of diverticula or diverticulitis. There is some evidence that the low-grade chronic inflammation is present in subjects with diverticula, which is the forerunner of acute diverticulitis. This hypothesis is strengthened by early reports that anti-inflammatory mucosal agents such as mesalamine and immune process regulators such as probiotics may improve diverticulitis.

And...

Inflammatory Bowel Disease

There is now thought to be an overlap between chronic diverticular inflammation and the inflammation of IBD. Segmental colitis associated with diverticula (SCAD) is a chronic condition occurring in the areas of the colon with diverticular formation. It is often diagnosed as ulcerative colitis or Crohn's disease; however, there are no ulcers with SCAD. The inflammation associated with SCAD typically affects the mucosa between the diverticula and not the diverticula themselves. Although IBD and SCAD share some of the same histologic changes, it is generally accepted that they are distinct clinical entities. Interestingly, patients with SCAD go on to develop IBD after resection of the affected segment of the colon. This gives rise to an "overlap" hypothesis between diverticular disease and IBD
Posted 10/6/2014 12:35 AM (GMT 0)
Thanks, guys. You've already been an inspiration to me- your strength in handling this issue head on. I easily get scared and have the tendency to dwell on the negative side. I think more than UC, I need to improve my mental health as well. Been like this even before my bowel issues. I guess I'm afraid of being a burden to others, especially since I have two kids who depend on me. I'm also a hypochondriac and am afraid of pain or suffering. My father recently passed away because of stroke and for a period of time I thought I had stroke too. It's been a crazy year for me, but I'm trying really hard to cope.

My goal from now until I get the results is to stay positive and distract myself as much as possible.

Someone told me that the theory of Self-fulfiling Prophecy fits me to a T. Where I work there's usually a period of two months when I get super busy, and then a period of downtime after that. For the past two years, it was during this downtime that I discover an illness of some sort. Like Mitral Valve Prolapse which I discovered in 2012 and then anxiety/panic attacks and temporary hypertension last year. I guess I was subconsciously anticipating that somethine bad again is gonna happen to me this year. True enough- this!

I'm trying my best to keep my mental health, at least for the sake of my family. Thanks again for your kind and encouraging words.

Posted 10/6/2014 12:12 PM (GMT 0)
I've been in the hospital now for 15 days and I've had quite a few neighbors during this time. One neighbour I met had the same surgery as me, same day, and walked out of here as though nothing ever happened only 4 days later. He was diagnosed with UC only a year ago and he said it wreaked havoc in that time frame and he lost 70lbs. I thought he was a teenager when I first saw him but he was actually 30. Amazes me what this disease can do, but he was in good spirits and looked ready to do anything once walking out.

On the other hand, he told me lots of members of his family have IBD, including his dad. But, he said his dad has had UC for 30 years, no need for surgical thoughts at all, controlled all that time with mesalamines -- a very safe drug.

Then there is me -- diagnosed with UC at 20, two years ago. I had a super mild case for 1 year, then got into a horrible flare that couldn't be controlled. Now I'm 8 days out of surgery and doing relatively well!! :) I know surgery sounds awful, but if you are really suffering it is a great alternative... Well it is for me so far, I don't feel sick! UC was slowly really hurting me, it was even damaging my pancreas because my colon was so inflamed, it was pressing on the pancreas, causing pancreatitis and making me unable to eat a lot of food without extreme pain. In my opinion, the surgery really saved my life.. anyway I'll stop my rant about surgery because you most likely will not need it.. But if you do, it's really not the end of the world...

So yeah, just wanted to illustrate 3 different cases that may ease your mind... Or worry you more. The point is, everyone's UC is really different and you can't predict what it will do to you. But either way, you WILL continue to have a life!!! It just may take a little figuring things out.
Posted 10/6/2014 12:44 PM (GMT 0)
I'll share my story, since you are so worried about UC controlling your life.

My symptoms started shortly after my soon-to-be 6 year old was born. I was incredibly sick - by the time he was about 3 months old, I was 25 lbs under my pre-pregnancy weight, and I'd gained about 25 lbs when I was pregnant. I lost my breaskmilk supply when he was 8 weeks old. I was having up to 25 bowel movements a day. I got to where I was so weak, I couldn't get out of the rocking chair when I was holding him.

I was diagnosed with pancolitis - meaning my whole colon was involved.

However, I managed to gain remission pretty easily, and have only had one very, very, very mild flare since, which was earlier this year. So I went 5 years with absolutely zero symptoms, and the flare I had this year didn't impact my day-to-day routine at all. I also had another baby, who is now 19 months old. My UC doesn't impact my daily life, other than the minute each morning that it takes me to swallow my meds.
Posted 10/6/2014 1:39 PM (GMT 0)
fruitgirl: Which probiotic do you use? Have you ever used other oral mesalamines and, if so, how does Apriso rate compared to them? I always worry that Apriso has too low of a dosage.
Posted 10/6/2014 2:27 PM (GMT 0)
I take either PB8 or the store brand from Vitamin World, whichever is cheaper. They have a fairly similar blend. I bought a different kind when I lived in WA state. I really don't think the probiotic is the key for me, though, but I take it because I know it won't hurt me.

I took Asacol (old-school Asacol, not HD) when I was first diagnosed. I think I was on it for about six months or so, but I really can't remember. I asked my GI if I could switch, because I really wanted to be on a once-daily med. I'm not sure why I chose Apriso over Lialda, but my GI said he'd write me an Rx for whichever one I wanted. I was in complete remission when I switched and noticed zero change.

As for the dose being lower, it is, but due to the way it's encapsulated, it's thought to be much more effective at delivering the mesalamine than the other mesalamine meds. When I was in the mild flare earlier this year, I asked my GI if we should consider switching me to a different mesalamine to get a higher dose, and he said he didn't think it would make any difference, because of what I wrote above.
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