New here - Colonoscopy diagnosis of UC this afternoon

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EMR81
New Member


Date Joined Jul 2018
Total Posts : 2
   Posted 7/10/2018 5:45 PM (GMT -6)   
Hi, I just created an account. I’ve been lurking all week when my GI first said he suspected UC based on symptoms. Today I had an endoscopy (because I also vomit a lot during my crampy BMs) and a Colonoscopy. Endoscopy was all clear.
According to the colonoscopy write up I have erosion, edema, and ulceration all throughout my colon and rectum. When we spoke after I woke up he said I was “one tough cookie” and must be miserable. Um, yes.

What’s odd is that I am almost 37 (Sept). I started mild symptoms about 2 months ago sort of out of the blue. It was like “well that’s not normal” but I was living life normally so I waited it out.
2 weeks ago it got worse. I went from 2-3 diarrhea episodes a day to cramping all day with maybe 7-10 trips to the bathroom. That’s when I books the appt to meet my GI.
In the ONE WEEK since I met him, it has gotten out of control. 15-20 trips a day (during daytime hours) with diarrhea, often with blood, and constant cramping and abdominal pain. Vomiting during my bathroom trips (sitting on toilet while puking in trash can. Fun!). I lost 4lbs in just a few days.
The pain also seems to have become more widespread (previously just down below and more recently moving up more towards my stomach).
Oh and blood all along the two months but varying amounts.

I don’t know what caused this 1) to suddenly appear at 37 and 2) to ramp up so quickly. What the hell happened???
I have my follow up on Thursday and biopsy results should be back by then to confirm. I plan to ask him then. But wondered if anyone else had a similar experience.

All I can wonder is if I’ve always had it to some degree (I was prone to “stomach aches” my whole life) and for some reason (pregnancy maybe?) it decided to take over my life.

I have an almost 4yo boy and a 4.5month old baby and I stay home. This is awful. I am chained to my bed or my toilet. I can’t do anything besides maybe a 10 minute errand. I’ve canceled all of my plans and won’t make new ones. I have a hard time even caring for my baby because without fail, when I sit down to feed him (formula) I start cramping and have to run.

Anyway I’m kinda ranting because this sucks and no one around me can appreciate how sucky it is.

Thanks for listening.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16418
   Posted 7/10/2018 6:48 PM (GMT -6)   
I am so sorry about the inflammation - but welcome to HW. I am happy you've found us. I think the way this ticked up so quickly is certainly surprising, but it's not completely uncommon. Mine came on slowly, with just blood on wiping, but over time, I ignored that, assuming it was hemorrhoids, and eventually I was in the same shoes you are. I try to think back and remember if I was prone to gut issues when I was younger, and I really don't feel like I was. Sure I got diarrhea once or twice, but no more than any other person I don't think, in fact, I think I was less prone. Anyway, my point is, we will never know. Maybe we had small flare ups in the past that were mild and a precursor, or maybe it came on later, but what matters is that we have options for treating it, and you can get your life back. Hormones from pregnancy certainly impact people differently. Some people find that pregnancy makes their UC go into remission, others it goes completely haywire.

Did the GI take stool samples to test? Did they start you on anything to help the symptoms?

Keep me updated.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

EMR81
New Member


Date Joined Jul 2018
Total Posts : 2
   Posted 7/10/2018 8:05 PM (GMT -6)   
Thank you, notsosicklygirl smile
I probably should stop wondering “how did I get here?” Because I’m here and it doesn’t really matter how.

I asked about something to help but he said he would put a rush on the biopsy and wanted to wait for those results to rule out infection. But I did do a stool test last week and it came back “normal”, though I don’t know anything more than that.

It’s hard to imagine life being normal again (as I sit here on the toilet for the 10th time since 2pm). But I’ve been reading a lot here and I know most get there.
I worry about the severity though and what that means (how I will respond to medicine, etc). This is all very new to me. I’ve only just learned what UC is in the last week!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16418
   Posted 7/10/2018 8:16 PM (GMT -6)   
I didn't know what it was either until I was diagnosed. That's how i ended up here too, a long time ago. Mine started in my late-20s. It was horrible, but I've had a lot of periods where it went into remission, and I felt okay. You will find a treatment that works for you and you will get back to your normal life quickly. That's how the majority of UC cases are. When you read here, you see a lot of people who struggle with finding medication that works for them, but there are SO many members who have taken off, they found what worked for them and they check in here or there, or don't even check in anymore. It's smart to wait and see the results. Maybe they will be good news, like all you need is a course of antibiotics! Fingers crossed for good news.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4381
   Posted 7/10/2018 8:29 PM (GMT -6)   
When I first got UC, I was consumed with trying to figure out how I got it. I was a healthy 23 year old one day and the next I had a debilitating (at the time) chronic illness that had no cure. You will never know how you got it. With time, this will no longer matter to you much. I was severely ill when first diagnosed (same symptoms as you without the vomiting, plus, pain so bad I thought I might be dying; I was sleeping on the bathroom floor and gwtting up every 15 minutes to pass blood), and I responded very well to Asacol (brand name is now Delzicol). He should have started you on mesalamines right away, in my opinion. My doctor did.
34 years old; diagnosed UC March 2007.
Latest scope: 9-29-16: "mild-to-moderate" chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. 25 mg pred. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1981
   Posted 7/10/2018 9:29 PM (GMT -6)   
I feel your pain! I was diagnosed at 38 and other than having had bronchitis 3 months earlier , I was a healthy person. UC hit me like a ton of bricks. I also had two little ones, although at least mine were 6 and 3 at the time. It is hard but once your meds start working you being to feel life slowly creep back to “normal” although I have to say that it is a new version of normal now. Everyone here is so helpful and amazing, glad you found us but sorry you have to join the club.
43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda (sfRowasa when needed)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

limey
Regular Member


Date Joined Sep 2016
Total Posts : 52
   Posted 7/11/2018 5:52 AM (GMT -6)   
Welcome to the club that its members were all very reluctant to join.
My UC came on slowly when I was 62 and now I am 77.
A great forum where you will get very realistic answers to any questions that you have.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12742
   Posted 7/11/2018 8:25 AM (GMT -6)   
Welcome to the forum but sorry you suffer from bowel issues as we do. Take a big, deep breath. You will be fine, thrive, return to your normal life despite whatever they found!

If you have an infectious-colitis, then they will give you a one-time treatment of antibiotics that will clear it up and you'll be back to your normal within a few weeks and then move on with the rest of your life without worrying about it again.

If you have an Ulcerative Colitis then the goal is to get you into what's known as a remission. During a remission, we are essentially normal, like we were pre-diagnosis. They will give you medications to treat your symptoms and you will heal over a series of weeks and months until you achieve a remission. They often give us temporary steroids, which are rocketship fast in healing us, while our other long-term maintenance medications are given time to work.

The cause of UC is currently unknown, so I would not beat-yourself up on the why's. Most of us were young, healthy, and had no health troubles at all and then *wham* a UC diagnosis seemingly out of nowhere. A lot of us are diagnosed in our 20's or 30's. I was diagnosed at 34 and am 6 years into a UC diagnosis. My life is mostly normal, despite the occasional flareups of my UC (UC goes through periods of remissions and flares). Despite UC we have successful careers, wonderful family lives, and enjoy our hobbies and interests. A UC diagnosis is anything but the end of happiness, but just a bump in the road, a temporary inconvenience that you will get over. I know when we're awaiting a diagnosis we tend to assume the absolute worst-case scenario, human nature and all, but that instinct is often wholly wrong and is just needless anxiety/stress/worry.

"Erosion, edema (reddened tissue), and ulceration" are all consistent with an UC diagnosis. Nothing you said screams infectious causes. Not sure if the doctor saw something else that makes him think it very well could be an infection (thinking, yes he might have or else he would have said UC). Although some doctors are inherently cautious and want to see all of the data points before stating a diagnosis (could be him). As a diagnosis is composed of three tests: a stool test negative for infections (nothing wrong with multiple of those tests), a colonoscopy report, and a biopsy report. I guess the doctor said nothing about chronic architectural changes, and that IS needed for an IBD/UC diagnosis.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

With UC, we're much like a footballer on our way to the bathroom: running, jumping over and agilely dodging around obstacles, and knocking out-of-the-way all that are in our path to the end-zone.

Post Edited (iPoop) : 7/11/2018 7:34:02 AM (GMT-6)


Uniform Charlie
Veteran Member


Date Joined Jul 2015
Total Posts : 703
   Posted 7/11/2018 10:35 AM (GMT -6)   
Welcome and sorry you are dealing with this with two little ones at home. No use in trying to figure out how you got here or why your UC is the way it is. Everyone's different. Be prepared for a mental adjustment period while you come to terms with everything. Feeling depressed or worried/anxious comes with the territory for many. Don't be afraid to ask your friends and family for help with the kids so you can give yourself a break.

I happen to have several friends and acquaintances with IBD. Even the ones who are worse off than the rest are working, functioning, raising families and going on with their lives. People come to this forum in the beginning and when things are bad and they need help or advice. Don't assume your life will be all bad like I did.
Diagnosed Proctosigmoiditis (UC) February 2015
Hiatial Hernia w/ GERD
Current Meds: Lialda 1.2gm 2x daily (discontinued for now), duloxetine, rowasa as needed, VSL3 occasionally, One a Day Multi-Vitamin
Did SCD for about 2 years but lost willpower. Want to get back to it at some point.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30676
   Posted 7/11/2018 12:35 PM (GMT -6)   
No meds???

Welcome
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 371
   Posted 7/11/2018 7:53 PM (GMT -6)   
Hi, I was diagnosed at 35, and my symptoms went from mild to 5 bloody a day to agonizing pain with 10 to 15 bloody bms very quickly as you described. I had to wait a little longer than you for an appointment, so by the time I got to a GI, he put me in the hospital. I was losing a lb a day by then. I am a bit surprised as well that there are no meds, but as one person said, perhaps there is a reason he suspects another type than UC. If so, that would be great news for you as your life will return to normal. Hang in there! It is tough with kids, mine are a bit older, but it was hard on all of us.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 2017.
Acute pancreatitis from mesalamines, allergic to Humira. Started Pred to bridge, still on it. Entyvio started 1/12/18. Flaring worse right now. 15 mgs of Pred.
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