Skip to main content

@Jan Dollar - I wanted you to see this

I've been here so infrequently and only posted once over the last several years. But I may be back to vent a bit more going forward. I'm not sure yet.

Quick history: I was diagnosed with UC at age 12 (1981) and had flares every 7 years or so. I could typically manage with sulfasalazine and nothing else until I was 36 (2006). Then I had TFTEAF (The Flare To End All Flares) and landed in the hospital on Feb 6th for 18 days, and left with an ileostomy and no colon. I had several more surgeries that year and have now been the proud owner of a j-pouch for almost 16 years.

Then: In 2009 my older daughter was 6 years old and was diagnosed with UC. She was in the hospital twice between 2009 and 2011, and was admitted to the hospital the second time 5 years to the day of when I was admitted in 2006 - on Feb 6th, 2011 (weird, right?). She was there 8 days, and left with an ileostomy, no colon, and an unconnected j-pouch. She had her takedown 2 months later and has been the proud owner of a j-pouch for 11 years. She is 18, almost 19 years old now.

Today: My younger daughter told me this past Tuesday night that she feels bloaty all the time, sometimes has reflux if she's standing upright and bends forward, and has had bloody stool... for about 6 months. She's 13, almost 14. No, I didn't berate her for waiting so long to tell us because it doesn't matter. Took her to the family doc today and he did blood work. Her hemoglobin is low-normal so she's doing okay, but the doc said she needed to see a pediatric GI and get a colonoscopy. He said, yep - you probably have ulcerative colitis given your dad's history. No surprise there. First available is in May (also not a surprise - they are slammed at our Children's hospital), but we got a telehealth appt. on March 10.

Poor girl. At least she still feels pretty good, although she has been sick with other things this year more than in the past (she rarely gets sick). We have seen her more fatigued than she ever has been - coming home and going to bed and sleeping for hours after school about one night a week. Of course, she is 13/14 too.

So there you have it. We won't know for sure it's UC and not something else (there are, of course, other possibilities) until she's scoped and all the tests are done. But looks like my girls and I defied the %s and the odds. My wife does not have IBD and no history of it in her family that we are aware of. So the 10%-25% chance of my kids getting it... may actually be more like 100%. I told my mom that I hope my girls feel like having me for their dad is worth all the bad genetics

Original Post

Replies sorted oldest to newest

Steve, I hate these stories and I am so sorry you and your family are dealing with this. That said, you and your daughters seem to be taking things in stride. Small reward, to be sure.

I know how you feel (somewhat), with the whole family affair thing. My two boys were fortunate to enter adulthood before developing UC, and neither of them have required colectomy (yet), nor has my husband. For that I am super grateful.

I think you can pretty much assume daughter #2 has UC. While there may be other potential diagnoses to rule out, bloody diarrhea is nearly always associated with UC (particularly with a strong family history). So unless she has been on antibiotics recently, I think you know what is going on. I sure hope that she will be placed on oral meds in the short term and they do not wait for a colonoscopy, as we all know how things can escalate. My youngest son went from complaints of the bloody diarrhea, an urgent appointment with the primary doc, immediately sent for ER consult with GI, and colonoscopy the following day. He was admitted to the hospital right after the scope for IV steroids and antibiotics, due to pancolitis (same as I had when I was 15). Lucky for him, it resulted in a quick remission. That was about 15 years ago and he now only has spotty disease that responds to oral mesalamine.

By the way, my other son never had severe disease and only gets minor flares. My husband’s has stayed in the sigmoid colon the entire time.

Hope this episode stays calm and buys you guys lots of time. Your kids are fortunate to have a dad who can commiserate with them and offer guidance and reassurance!

Take care,


Last edited by Jan Dollar

Sorry to hear you have to deal with this. My mom was dx’d with UC at age 51, she’d had symptoms for about a year. She had a traditional ileostomy 6 yrs later, and had no problems with it at all when she passed26 yrs later. I was dxd at 42 and only made it 2 yrs before having a s- pouch. I am now 64; and in the last couple yrs have had a couple bowel obstructions that have cleared non-surgically, so I am more careful with what I eat and hydration. To add to this wonderful gene pool, one of my male cousins on my dad’s side was dxd with UC in his early 30’s, he also had an internal pouch surgery, and is doing well. My mom’s family was pretty dysfxnal, but I think one of her sister’s may also have had UC, but not sure. I am also an ovarian cancer survivor of 9 yrs, breast cancer is on both sides, so I did not win the lotto in the gene pool!

I worried for years about my son getting sick.  Still do, though he appears to have dodged the bullet.

Our kids take the good and the bad from us. It sounds as though you're modeling a positive approach to living with this disease, and there's plenty good about that  

Your post made me recall that Mount Sinai, many years ago, began focusing research on IBD genetics.  I did a quick search and see that they still do.

Thanks all. Appreciate the empathy and information. This isn't anything to be feared, I know. But it sure is hard seeing your kids go through these things. For myself, I continue to add to my list of inherited crap. My A1C has been borderline for a year, and now my cholesterol is high. Getting old sucks. This is on top of HBP, UC, asthma, allergies, and arthritis. My mom said yesterday I inherited all the bad crap and even came up with some of my own (she was never diagnosed with IBD, but definitely has IBS). Combo genes on the IBD from both parents, I guess.

Had my daughter's appointment yesterday with our PCP. He's so different now than when we first saw him at this clinic. He has a lot more patients now and their practice was bought in between now and then - so I know not everything is the same. But he came in, asked what was going on, felt her belly, and said, "Yep. You probably have UC given your dad's history. Yeah - it's his fault." We know him well enough for him to say that in jest, but he said he would do basic testing for blood in the stool and a CBC but after that - she needed to see a GI. He did not hide his frustration for our Children's Hospital's (CH) GI practice. They are very hard for doctors to schedule and work with due to how much demand they have. But still. I sent him a message this morning just clarifying that the CH wanted inflammation marker tests - and whether he was going to order them or if he was handing things off to the CH. I really tried not directly blaming but let him know I didn't find empathy or partnering with us and the CH in our visit yesterday. And that my wife can provide a direct line of feedback to the CH since she's on the CH GI parent advisory team. He called my wife this morning (her phone # is on my daughter's account) and responded to my email. So we are getting past that.

The CH GI hospital system gave us a first available appt in May. Thankfully my wife has the direct back-channel connection to the IBD coordinators at the CH. We have a telehealth appt on March 10. But sheesh. What about all the other parents of IBD kids? Our system is such a mess right now.

The good news is her Hemoglobin is still in the normal range - 12.4 or so. So no imminent or acute disease at this point. But needs to be diagnosed and addressed.

Thanks again!

Update: we've had the following so far

  1. Virtual appt with pediatric GI at our hospital here
  2. Labs - all the usual IBD labs. Her HGB actually went up between labs a couple weeks apart even though she was still bleeding and had her period. She's in really good physical shape and she's young, so I know that helped. C-Reactive Protein (CRP) and Sedimentation Rate (Sed rate) were normal on all 3 labs so far. The only indicator of IBD has been the fecal calprotectin test which was 397 (reference range is <= 50). Note: Cigna recently decided that fecal calprotectin is unproven and experimental and won't pay for the test. Bastards!
  3. MRE (MRI) of her small bowel looked normal - so no obvious signs of inflammation there (that's good - leans things towards UC

Her EGD and colonoscopy are scheduled for tomorrow afternoon. So our 13 year old is learning the joys of colonoscopy prep today while she's at home instead of at school. But at least Miralax is slow and gentle, unlike GoLytely, Fleets phospho soda, or those other nasty things they used to make us drink.

We should have the visual results tomorrow afternoon and biopsies next week sometime.

And the tentative diagnosis after her scope is: mild UC (not a surprise considering her symptoms. She had signs of inflammation in two places:

  1. The end of the cecum next to the appendix (typically seen in UC)
  2. Almost at the very end of the rectum. The doctor almost missed it but saw it as she was ending the scope. This is undoubtedly what's causing the bleeding

The pathology report will provide the definitive diagnosis, but visually (and given family history), it does appear to be UC.

Not yet. Pretty sure she's waiting for the pathology results first and will then communicate a plan to us through the portal. I'm not sure if she will want to go minimalistic (topical) since it's primarily in the rectum? My kid is allergic to sulfa so sulfasalazine is out as an option. Not sure how well Asacol will do given the issue is towards the very end of the rectum.

Interestingly, she indicated during our first appointment that biologics have become the go-to for pediatric GI patients. Not sure if she'll go there though given the mild nature of the disease so far (although part of the treatment plan has to be to keep flare-ups from occurring). I'll let you know what she comes back with.

Hi Elmer,

I had proctitis and left side UC for 20 years prior to TPC/IPAA.

the asacol was for the left side but not rectum because even at max dose of 6 pills per day, it would never reach the end of the line.

while canasa suppositories were my maintenance drug, what knocked the flares out was Uceris foam. It’s a 42 day course of treatment and is a non systemic steroid. It’s easy to administer via the rectum. It’s very expensive and insurance might not cover it.

I echo New577’s recommendation for Proctofoam (corticosteroid enemas with many different names). They can be a little cumbersome and not sure how old your daughter is and how acceptable rectal meds will be. They worked way better than the Canasa which I always had trouble retaining during a flare. I had proctitis with very mild distal sigmoid involvement for years before extension requiring biologics. I guess one could argue that maybe the topicals are just a bandaid considering I’m here on this forum after requiring emergency surgery but I agree that reaching for a biologic when disease is mild can be a tough decision. Wish you and your daughters the best.

Thanks for the thoughts and advice. Still waiting for the path results. But proctofoam is probably the better option than suppositories. I am interested to see what they say. I do know they do things differently with kids than adults from going through this with my first kid. Things that surprised us like:

  • They will only re-scope them if it is absolutely necessary. They generally don't like to re-scope kids. Adult docs - seems like they have no hesitation
  • Our docs will start with low-dose prednisone and up the dose if needed. With kids they start at a really high dose and wean them off. The thinking is to knock out flares quickly and get them off steroids sooner than later

So it will be interesting to see if there is some thought that is different in terms of treating mild UC than what we would think as adults

Pathology results:

  • Mild acute non-specific inflammation in the esophagus and stomach (surprised by this - they looked really healthy via scope)
  • Acute and chronic colitis in the cecum
  • Mild acute and chronic colitis in the rectum

They have labeled it as indeterminate colitis for now. I realized yesterday that I actually received an indeterminate diagnosis upon visual inspection from age 12 all the way into my 20's. They didn't do biopsies or EGD back then - all just visual diagnosis. In my 20's (early 1990's) I had the doc tell me my disease didn't present as UC or Crohn's exactly but it was closer to UC. So someday, my daughter will probably settle into a UC diagnosis.

For now she is going on omeprazole for the upper GI inflammation, and on Lialda for the colon. I did ask about Lialda getting to the rectum and they said for some kids with mainly rectal colitis, mesalamine drugs seemed to work. We all agreed to try this route first prior to using any topical meds. My kid is almost 14 and was pretty freaked about the idea of having to use topical meds. And it's motivation to get over her issues with swallowing pills We will see how this goes....

Last edited by ElmerFudd

Good morning,

this sounds like a very reasonable plan of action.

the upper GI symptoms should dissipate after the course of omeprazole

i would trust the doctors at this point if they are telling you that lialda can work for proctitis in pediatric patients.

sorry to hear your  kid is going thru this, but at least there is a diagnosis and a treatment plan.

Yeah - not sure how both my kids ended up with it, given the odds. I suppose even though there is no known IBD on my wife's side of the family, perhaps our genetics together upped the odds. Sad for my girls, but my 19 year-old is doing great with her j-pouch.

The biggest med issue is... 1.2 g Lialda pills... totally freaked out my daughter. And come to find out that while I always thought she did fine with pills (has taken Benadryl and Singulair), she actually has a fear of swallowing pills and refused to even try to down a pill last night. What is covered by insurance is an issue, as well as the fact that smaller, non-targeted 5-ASA's don't often reach the rectum so she'd have to double the pills with suppositories. I already told her that's the likely other option.

I was frustrated enough that she wouldn't even try with the pills I kind of handed it off to the doc and my wife and daughter The children's hospital has someone on their IBD staff who helps kids learn to swallow pills so that might be an option. I've tried telling her she is going to have to learn this "life skill" sometime, so might as well be now (of course, that didn't help anything).

Anyway... appreciate the support guys!

Update: so my kid's on Balsalazide and Omeprazole for the inflammation, and she says the bleeding has stopped (yay!). Her multi-disciplinary appt with the Children's hospital is Wed morning to report on things. She's seen a rheumy about joint and leg pain, but does not have arthritis issues at this point (she plays soccer and seems more like a sports medicine issue). Overall, she's doing well with things.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.