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My "Young" Crohns Life- Can you relate?

Hello Warriors! I'm a 21 year old Texas resident, diagnosed with moderate-severe Crohns Disease at the age of 13. Still seeking a treatment to propel me into remission. Let me start my story from the beginning- so maybe someone OUT THERE can relate. Hope this helps. I have never gone into detail about my Crohns story like this..
In 2005, my mom decided to drop a bomb on my siblings and I. We were moving from California to West Texas (she acquired real estate after the passibg of her mom-my grandma). At that time, my brother (4yrs older;varsity baseball player) had been in and out of doctors being treated in Cali for "hemmorhoids."
Fast forward -6 months into living in Texas, my poor brother was diagnosed with Crohns disease. Symptoms had become severe throughout high school, constipation, lots of bleeding, fistulas and eventually a couple surgeries. I sat back and watched at a distance someone suffer and be ignored. Goodbye baseball career- ashamed to change his bloody uniform in front of teammates. Mom didn't know how bad it was until finding huge blood stained uniforms in laundry basket. CROHNS PATIENTS: We know suffering.
I say this because, we ALL have a tendency to minimize at times and also are forced to OVER analyze our condition. It's the awful cycle of Crohn's. Right?
-OKAY, focus Natalie! ;)
So, we moved to Texas. Brother was being treated. Then, I began getting sick..
8th grade, Junior High School student, adjusting to a new culture, new town..
I trudged through and landed flat on my butt my Freshman year. Was taken out of school due to absenses. BUT let me back up to HOW my diagnoses came about. Mom finally got us kids insured when we got to Texas. Going into my Freshman year of HS, I began making up to 30 trips to bathroom, very loose "water" poops. Fatigue. Nauseau. Weight loss.
Very unusual. I was seen by a general practitioner, I believe I had some lab work done on stool sample/blood and immediately got a referral to a pediatrics GI specialist 2 hours away in Lubbock. In a 2 month span we made frequent trips and I went from no treatment to 3 week long hospital stays/monitoring, colonoscopies, embarrasing anal exams and Remicade. They determined from enzymes and bloodwork that I had a severe case of genetic Crohns. My mom didn't realize how much suffering my brotger had endured, he didn't TALK. I learned to use my voice throughout this process because with CD, if you don't talk and stay informed, you will allow this to kill you.
I have left out so much, I just realized. Maybe next time I try this , It will be better;) I'm a wife(3yrs) and mother of an almost 2 yr old(in Nov).
So, time is of the essence! Lol. I'm hoping this bring comfort to someone.
Currently, I am still struggling a lot with this disease. Uninsurable because of the pre-existing conditions "clause". I should mention, at the time of diagnosis I started a pretty quick(very necessary) round of Remicade. I went to the ICU and recieved two succesful infusions and then insurance dropped us(2006)
Ever since my mom made $160 over what she usually made a month, I have been "uninsurable" and it's been a bumpy, trying... Well let's be honest, these last 7/8??? years have been hell.
Luckily, throughout the depression. Suicide attempts. Pain. Suffering... I found something bigger then me, bigger then this debilitating disease and bigger then any setback. I found salvation at the age of 15.
I don't have a family history of believers. I have not been force fed "religious babble"... Churchy tendencies.
I found positivity. Something I can cling to when this "America; Land of the free" feels like is literally AGAINST ME. I hope someone can relate to this. I'm young and I have tried so many times to receive help medically and I get refusal. Doctors/caregivers shutting me down because I am uninsured.
3 steps---->
20 steps <-----
I am about to wrap this up. July 15th I was rushed to the ER, third time in 3year span. Would have been more but ER bills scare me and I am a symptom minimizer :mad:. PROBLEM! I pushed symptoms too far and allowed myself to suffer to the point I was sitting in the hospital, NG tube, NPO, surgery on the table, 3 obstructive blockages, contracted c-diff, couldn't see my daughter; MY BREAKING POINT.
I learned I can't DO THAT. Others needs came before mine, always. I neglected myself. Which is easy to do when you are unable to get proper treatment for CD..
I had a paralyzed ileum, 3 obstructions(was told initially in ER that it was "constipation" LOL since I have had CONSISTENT diarrhea for 7yrs that was a joke) 4 days in and 5 ! intern doctors later, I was told what I already knew was happening. My intestines were giving up. I should mention, the reasons I agreed to be taken to ER was due to severe persisting pain and I hadn't gone #2 in almost 3 days, which we all know for a diarrhea prone individual is NOT NORMAL. Very painful. Anyways after days of pain leading up to this, I was taken to hospital by husband. Was admitted. Did the deal.
Almost had a full small bowel resection- surgeon took it off the calendar because A) I am uninsured :/ B) He f"elt" by looking at one xray and a inconclusive cat scan that I could recover from this with RX and maintenance. They could not do internal exam because of extent of inflammation/damage. If they tried to examine, they would risk perforating more and causing more problems :/
Frustrating! I am currently tapering off of 60mg prednisone. Still on 30mg. Thankful for it being affordable and it did alleviate some inflammation, surprisingly. I am getting NO good responses from any GI doctors in the area since I am not insured.. I am starting to see effectiveness of steroid wear off and my positivity slowing. I woke up at 5am today with the most excutiating pain behind my belly button and it hasn't eased up. Everyone is worried about me and all I can think to do is hold my composure to not upset them? Keep calm so that my sweet daughter doesn't feel sad that mommy is hurting. I don't want that! But here's where I need to remember something. I am NO GOOD for anyone if I'm not taking care of myself.
So, today I will either be heading to the hospital or miraculously making a comeback. I hope and pray something will just move and the pain will subside. My immune system this week is so low compared to last. I was adrenaline high the week after getting out of hospital- I was so thankful to be home in my bed, no tubes no stupid nurses.. Just home <3
But the truth is, I have a chronic disease.
Ha! Can't get comfy for too long..
I am overwhelmed. Financially. Emotionally. PHYSICALLY.
I don't know what I can pull out of my hat this time. I am racking my brain.
I CAN SAY THIS THOUGH. After 8 years with Crohns, a battle. I don't sit in the passenger seat to it. I try to not let it take over the way it used to. Believe me, I know it's easy to let it :/
I don't fear Crohns Disease. I am learning to stay IN the moment so that fears, "what-ifs" and anxiety/stress doesn't CONTINUE digging my grave.
That's where I'm going to stop. I'm not going to reread and edit this cause I just want it to be RAW insight for whoever may need encouragement?
Much love to you. We are all so different and yet so alike it seems. I just needed to reach out somehow.
This really IS a "invisible disease" if we allow it to be. I am proof.
So sorry to hear of all your are going through. My son was dx'ed at 15 and it took some time to find the right treatment, dose and schedule.

When you were in the hospital did they mention to you that most of the biologics have a financial assistance program to help those with or without insurance? Remicade has Remistart, Humira, I believe also has a program. I know that doesn't overcome the issue of find a doc to see you without insurance to px the med. I wish I had more to offer in terms of advise as far as seeking medical treatment when uninsured.

You have been so strong through all of this. I do hope that you find some relief soon!
When you were in the hospital did they mention to you that most of the biologics have a financial assistance program to help those with or without insurance? Remicade has Remistart, Humira, I believe also has a program. I know that doesn't overcome the issue of find a doc to see you without insurance to px the med.
Ah thank you Clash for your response and kindness. I didn't knoe there were specific programs for Remicade assistance. I'm curious to see what and how they go about that-with ICU stay and everything.
I'm having such a hard time getting IN to see a doctor right now and I will be tapered off Prednisone completely in 2 weeks. Already showing symptoms again.
I will try and get back on this thread and update :)
Welcome! I, too, was diagnosed young, at the age of 11. I'm 24 now and am married with a 5 month old and 2 wonderful stepchildren, so I relate to you on these levels. I'm currently in the middle of a flare just like you. On 20mg of prednisone and waiting to start Humira. They do have an assistance program and I encourage you to check it out. They're paying all the cost for a full year. (Abbvie patients assistance foundation) It must be difficult not being able to find a doctor because of being uninsured. Stay strong! I've come to realize that God doesn't give us what we can't handle. Anytime you need to vent or just talk come here. Everyone is very supportive and understanding.
Thank you so much for the response!
The day I posted this I was in so much pain- I had to work my memory to remember typing it! Geez.
I am SO thankful for you directing me to that assistance program. I am really needing to get back in to a doctor since my Last hospital scare in July. I am still on Prednisone- down to 20mg from 60mg. It's not working anymore :/
Also, 3 days ago I had a tooth just start falling apart . Thinking it's Crohns related. Such a powerless feeling! :(
I have read others similar experiences. Common factors are prolonged prednisone use/or active Crohns. Teeth are a bone- guess it makes "sense".

Just dissapointing.
Thanks for your encouragement. I will definitely be back :)
Oh no- flaring while taking care of a 5 month old. I know that is exhausting.
Try and stay as positive as you can. You are absolutely right- God doesn't give us more then we can handle;)
Hope to hear from you soon
You're welcome about the Humira information. I hope everything works out for you and you get the help you need!
Thanks for checkin on me! Turns out, the 60mg of prednisone and antibiotics I was sent home with in July wasn't enough. I returned, reluctantly, to the ER on Sept. 16....
Ended up needing a open surgery ileocecectomy and appendectomy. They got in there and took some small, some large and my appendix. On the pathology report, they described it as totally obliterated.
Sooooo.... I was in for a whilrwind after.
I am now 2 months post op. experiencing different types of pain.
GI that I have been begging to take me in as a patient for YEARS, agreed in the hospital to see me after surgery. He said he wanted to put me on Humira after surgery to maintain Crohns. I contaced Abbvie (thanks to your advice) and requested a form.
When I went in to see him, he retracted his suggestion of Humira and wants to start slower with Imuran. I have taken this before.
A little nervous that it won't be enough.
Oh AND I applied for insurance through my husbands job and that starts January! I can't be denied cOverage anymore. Woo!

How are things on your end?

@Clash How are you?

I don't realize how encouraging this forum is. I tend to do TOO much googling and npt enough connecting with experienced people. It's helpful!
Things are going well here for my son, C. He is in full teenage boy mode which means that his CD is apparently doing really well.

So sorry to hear of all you had to go through. I sure hope the Imuran works as a great maintenance med. I know one of the other parents, had two kids that went through CD surgery and have been doing well on Imuran since, I'll tag her and she can give you their experience, calling Dusty! Hopefully she'll be by soon.


Super Moderator
Thanks Clash. :)

Hey NatalieM, :hug:

As Clash has said, I have two children that have had the same surgery as you and it was open for both of them too. Their Crohn’s was isolated to the terminal ileum so surgery put both of them into remission.

Post op:
My daughter was undiagnosed and in very poor condition going into surgery so her recovery time was quite lengthy. I think she probably hit about 70-80% recovered at about 2 months but wasn’t 100% for 6 months.
My son’s diagnosis was very speedy and his surgery planned so he was in a far better place than Sarah. As a result I would say by two months post op he was in a pretty good place but physically he was weak and had a way to go in that respect.

Maintenance meds:
They were both prescribed Imuran as long term treatment. Sarah didn’t receive her diagnosis until her op so had never been on meds prior. Her surgery was 7 years ago this past July and she has remained in remission since that time.
Matt was already on Imuran and Flagyl when he had surgery, he had the complications of fistula and abscess, and has remained on the Imuran since. The Flagyl was continued for 3 months post op. His surgery was 2 years ago this past April and he too has remained in remission.

Are the following blood levels being monitored post op?:
Iron Stores
Vitamin D

If not then have them run the tests as this type of surgery will leave you with the potential to be deficient in any or all of the above.

Good luck! I hope you are soon on top of things. :hug:

Dusty. xxx