Possible Diagnosis

Hi,

I am struggling right now...

In January I got sick while traveling in AZ. I figiured it was a stomach bug so something else that one of my toddlers gVe me before I left. I had chills after dinner and fealt nauseas. I lost my appetite for most of the next day. The following morning I had a small stool that has some notice left bright red blood and some visible mucous and blood on TP. Appetite was back that day. That night when I got home, I has a bright, bloody red spray BM into the toilet. It was scary...went to the ER, look tests were normal, physical exam was normal. Figured it was maybe a stomach bug and hemorrhoids.

I was fine for 1.5 weeks, Then a week later I spent a day in bed, cramped, feeling crappy which eventually led to diarrhea for e days. The first day was bad, the latter two were not too bad.

I emailed my GP and got referred for a Coloscopy in mid-April. Until early March, I could see a consistent bright red strip of blood on my poop. Not a lot, but noticible. I also had mucous. Sometimes just a tiny amount. Sometimes none. Sometimes it looked like my BM was covered in spiderwebs (once or twice). Everything was pretty much normal for the last month, no blood, no mucous. Tiny bit of blood in the last week.

Through all of this:
- no pain
- no diarrhea other than the one event
- no constipation
- some days my gut felt off, but that was it

Colonoscopy finally today. I kept hearing others being sent home with a, “all clear, come back in 10 years”. I didn’t get that...

She said that I had inflammation in the rectum with some ulcerative sores, and about 10 cm in. Also said there was a very minor amount of inflammation in the cecum. Nothing else. Suggested it may be Crohn’s or UC but wouldn’t elaborate further.

Took some biopsies and said she would call me in 10 days, also set me with an ‘urgent’ referral to see their GE on May 11.

I know that all of you have gone through a hell of a lot more than this. There is a part of me that is still hoping this is nothing given the lack of consistent symptoms...but I am probably just fooling myself. To be honest, I am scared. I am drained from waiting for this for three months. I was so homing it would be a hemmroid, everything else clear scenario. I just turned 40. I have had no major issues healthwise ever. I am active, run. and chase down my 3 and 5 yo kids. I try to be healthy habit wise. I just don’t know what any of this could mean. What I need to ask. What major issues I may come across in 2, 5, 15 years. I am anxious. Lost. This came out of nowhere.

First of all, I am sorry that you are having to deal with this. It is a whole bag of unpleasant things, and it is normal to feel lost and be struggling emotionally. You will learn if you don't already know, that UC and Crohns are not really a respector of healthy people. It's not your fault. The biopsies need to be done to give you the definitive diagnosis-but from what you have said, the inflamation has not spread to a large area yet. Some of the other members on here are much more knowledgeable than I about what the Cecum involvement means, but many people have mild cases and respond well to meds. I meet people that have been in remission for years. That hasn't been my experience, but I am still hopeful that is coming for me too. Best wishes.

Welcome to the forum, but sorry that you're struggling. It's common, as many of us were 100% healthy with no other illnesses or meds needed, and yet *wham* IBD diagnosis out of nowhere.

It's quite a head-trip to go from healthy to being chronically ill, and we can all relate. We all go through the same stages: denial, anger, and finally acceptance when initially getting a chronic illness diagnosis. In the end, we all must pull up our pants, put a smile on our face and go about our day lives. You just learn to adapt to and live with your illness and not let it define you. That gets easier with time.

When we're new to this we worry and are anxious that any new sign is the end of the world. The majority of it is for naught. Most of us live mostly normal lives (aside from the occasional flare), have successful careers, wonderful families, and peruse our hopes and dreams despite having an IBD.

IBD is characterized as having periods of remission where we're essentially pre-diagnosis and normal which can last for years, and periods of flares (what you're experiencing now) which truly and bitterly suck. Your treatment goal should be to get into a stable and long lasting remission. In a remission, you should have no bowel or toilet worries at all. You can go about your day as if you do not have an IBD, with no excuses and chase down your 3 and 5 year olds as you have before. The majority of us have a pretty easy time with an easy and well mannered case of IBD with few intrusions into our lives, a percentage of us have more difficult time with more progression and escalation of meds, and about 20% of us ultimately need a surgery because nothing controls our IBD. Much like a game of poker, there's no knowing who gets the best hand before the cards are dealt. We all hope for a winning hand, many land somewhere in the middle with decent cards and perhaps a bit of skill and a stone-face might be enough to pull off a win, others get just crap. IBD is no different.

UC, Crohn's (or some of the various shades of gray in-between: a Crohn's-Colitis or an Indeterminate-Colitis) doesn't matter a whole lot in the grander picture of things as they are both treated with a lot of the same treatments. Your biopsies will tell you what it is. It's always a good idea to get your own copy of your colonoscopy report and biopsy report. If you can paste some of the medical jargon from those we can help you understand it.

Good luck, hang in there, and I just know things will get better for you! Patience is important as biopsy reports and healing aren't instant-gratification things. It will take a month or series of months to be back to yourself again and heal fully. There might be some trial-and-error involved in getting there, as that's just part of living with an IBD.

Anxiety only exacerbates bowel issues, even in those without an IBD.

Everything you describe sounds like a mild-severity, and the extent covered is minimal. Those two things alone make you predisposed to be an easier case. That said, I don't want you to take IBD lightly and assume you'll have no trouble at all. As IBD can be a real witch (with a capital B) for some of us and is anything but all roses, sunshine, and puppy dog tails. And toward that end, there's some truth that the forum is certainly a bit biased toward difficult cases of UC (which makes sense as those with the worst symptoms are seeking help rather than those with the mildest, well mannered cases).

What you can do now, is avoid a high fiber diet (fiber is bulking and abrasive, and inflammation narrows the intestine's internal diameter and leaves the surface raw and bleeding), avoid alcohol (gut irritant), avoid spicy pepper oils (indigestible and inflames gut tissue from mouth to anus), and avoid NSAID pain relievers (aspirin, bayer, aleve) which aggravate IBD and only take tylenol and it's generic. Call/email your doctors office and ask for the colonoscopy report. If you can paste/write down the findings then we can help you translate the medical jargon. We're not doctors, but have had enough of those reports to be familiar with a lot of it. If you have bowel aches, consider getting a hot water bottle or heat retaining pad to put on your lower abdomen for temporary relief.

Expect a prescription for an oral (asacol/lialda/mezavant/pentasa/apriso) and rectal-route mesalamine (canasa/pentasa suppository or Rowasa enema). They're 90% topical anti-inflammatory medications that are well tolerated by most without experiencing side effects.

Thanks folks. Appreciate the quick replies. My focus is now on my ‘plan’ and putting it into motion (so to speak). That was my first thinking as well based on my research and it seems like there is a ton of benefit to treating from both ends in terms of efficacy and remission stats.

Also moved to a good probiotic and some supplements (minimal) to start, focusing on diet. Biggest focus is that I can be a stress ball...I have known that for a long time but am using this as a catalyst for some changes.

Foams are fine for 10 cms whether mesalamine or steroid.

Try not to overplan either!