Newly diagnosed

[Momofboycrohn]

First let me say I do understand that there's a statue of limitations of 3 years on claims but I also know in rare cases (such as mine) things can be changed. My son was recently diagnosed with Crohns Disease. He was hospitalized 5/23/16. He has since been released but the diagnosis is Crohns and of course he'll have to deal with this for the rest of his life. It's manageable but not curable. Unfortunately, he was hospitalized in 2007 for the same symptoms and same problems. I was told that he needed emergency surgery because it was his appendix. It had ruptured, so of course I Ok'd the surgery. I was told AFTER surgery that it wasn't his appendix, it hadn't ruptured but they found a "mass" of some sort. They removed his appendix anyway... stating he didn't need it even though there was nothing wrong with it. They took samples of the "mass" and it wasn't cancerous but they left it at that. Over the years he's still complained about his stomach. I believe most of the times he just tolerated the pain because that surgery traumatized my son. Fast forward to this year. He started experiencing the same pain this year. He's developed diarrhea and lost over 30 pounds within a few months. He missed school and basically our lives have been hell. The pain came from the same area that his appendix was 9 years ago. He went to his pediatrician they only ordered an XRAY which didn't show much. I then asked them to write me a referral to a GI specialist and they did. I took him there. He ran test and he also had a colonoscopy and an endoscopy done and according to the specialist that didn't show much. BUT he was still experiencing this pain and suffering. It wasn't until he was admitted on 5/23/16 where they gave him a CT scan and another X-ray was performed as well as a sonogram (I was confused as to why it took this long to even do the sonogram or CT scan because they give more details as to what's going on). They images came back and they phone a significant amount of inflammation (that we are still trying to get down) and abscess and AGAIN this "MASS". in my research I've found that an Appendectomy in childhood may increase the risk for Crohn's disease. I'm almost certain this is his case. I do understand it takes time to diagnose him BUT not 9 years. And certainly not removing an organ that wasn't ruptured. Our lives have been turned upside down because of this because it's like we're being hit really hard with this disease and I honestly feel that "early detection" could have help us. Yes crohns is a tricky disease but it's manageable and I feel like my son shouldn't have had to suffer because he wasn't thoroughly checked back in 2007. I really pray you can help us.
MS. HINES

 

[my little penguin]

Welcome
Sorry about the dx
The actual cause of crohns isn't known yet

What treatment is he on currently ?
How old is he ?
Is he drinking formula ?

 

[CarolinAlaska]

Sounds like you've been on a terrible journey. It is common for doctors to do appendectomy in these cases. It is not a functional organ. What made them think he had an appendicitis 7 years ago without doing ultrasound or CT scan? They don't like to do CT scans on kids because it involves a lot of radiation. My GI orders MRE instead. Less radiation, but shows inflammation and other problems.

I think you'll have a hard time proving that his appendectomy caused the Crohn's. More likely the other way around. He may have had Crohn's all the time. The mass seemed a likely answer for the problem (to the surgeon), and since you didn't follow up his ongoing symptoms due to his hiding them, so you can't really blame anyone for a missed diagnosis. My daughter went longer than your son before her Crohn's symptoms (before her diagnosis) became unbearable, and I didn't push the issue, because I kept my head stuck in the sand. I could spend days and nights churning over whether I or her early GI was to blame (and believe me, I foolishly did just that in the early days), or I can accept what is now and use my energy to help her overcome her health issues.

I'm sorry that your son is suffering. I wish you both the best in finding what is causing his problems and what will fix them. We're here if you need support along the way.

 

[DanceMom]

My daughter finally got a diagnosis a few weeks ago after 11 years of doctors, procedures, labs, hospital stays, etc. I could be angry at every doctor that couldn't put the puzzle pieces together but I choose to accept that it was part of the path to diagnosis.

I'm sorry that your son has Crohns. I hate that any of our kids have to deal with a chronic illness. We all fluctuate between angry, scared, sad, anxious, etc. Coming here for advice or just to vent can be very helpful. We're here for you if you need us.

 

[CrohnsKidMom]

Welcome to the forum, but so sorry to hear of all the pain and frustration you have been through. Crohns is a sneaky disease that can be hard to diagnosis for a long time. My son became suddenly ill at age 8 and had all the "classic" symptoms. So, for us, a diagnosis came quickly. But, when I look back to years prior to the diagnosis, there were little "hints" that he had Crohns, that neither our dr, nor I, picked up on. It is very frustrating. I hope you find a treatment plan that gets your son on the road to remission soon.

 

[malorymug]

I hear about appendix and crohn's disease combo a lot. I've always wondered what came first, kinda like the chicken or the egg. That area is a notorious spot for crohns to simmer.

For my boy, we repaired an umbilical hernia that was symptomatic (painful, bulgy) and 7 years later a crohn's diagnosis. I really don't know if there is a connection. Either way, Crohn's disease is awful and sneaky and sucks years out of our lives. I'm sorry you and your child are suffering.

I'm glad you have found us.