• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

27 year old male/Law Enforcement Officer/Diagnosis: Crohn's Disease

My Story...the long and short of it...
(27 year old male/Police Officer/Diagnosis: Crohn's Disease)

So, I've battled stomach issues almost my whole life. Back in 2007, I had an upper endsocopy and they found several ulcers in my stomach and esophagus. They shrugged it off and said it was probably just acid reflux. Then over the years, I started to develop problems with my lower Gi tract. I was then told it was IBS. Two and a half years ago, I started getting into long distance running, because I had set a lifelong goal to run a Marathon. I ran the Portland Marathon and completed the entire race. It was amazing. I felt the best I've ever felt in my life.

However, overtime, my diarrhea would get worse and worse. Especially when I'd run. Most people just told me I had the runner's trots. But it seemed much more worse than that.

In October 2014, I went for a 7 mile run after I got off work. I had severe diarrhea. When I got home, I went to bed. I woke up approximately 15 times to go to the bathroom and found large amounts of blood in the toilet. I went to the Emergency Room and they ran a series of tests, including a CT scan. It showed obvious colitis in my colon. They told me to follow up with my primary care physician. About a week later, I did. I was then referred to a Gastroenterologist.

I had a colonoscopy and it didn't show much. It showed some nodules or inflamed lymph-nodes at my terminal ileum. Biopsies were collected. The pathology report showed active colitis and healing ulcers in my colon, especially around my terminal ileum.

I was put on Prednisone. However, I was never officially diagnosed with anything other than some unexplained colitis. My symptoms seemed to worsen. My abdominal pain became unbearable. I developed mucus drainage problems. I had mouth sores, especially on my tongue. My eyes were inflamed and I had terrible night sweats.

I was given Flagyl, Lomotil, Bentyl...you name it, I've had it. I then had a Barium CT scan. It showed lots of inflamed lymph-nodes around my small intestines. The Dr still wouldn't make a diagnosis. He then had a capsule endoscopy done. The report came back as showing nothing.
As my symptoms seemed to worsen, I wouldn't give up and kept bugging them. I finally had a special blood test done that was sent away to be tested. My DNA that was tested, showed I was positive for an Inflammatory Bowel Disease. However, it didn't specify Crohn's or UC.

My Dr then discovered a Fistula on my anus. After taking all the pieces of the puzzle and putting them together, he finally made up his mind and diagnosed me with Crohn's.

I was prescribed Humira. My body rejected it and I had a bad reaction. It caused severe liver problems and fluid build up around my lungs, that caused me to have difficulty breathing.

I went back for more follow up and he took me off Humira. He then scheduled me for an upper endoscopy. The results showed that the disease had progressed to my stomach and duodenum area. I had severe deep ulcers and erosions that were clearly visible. The pathology report also supported the visual findings.

So, the Dr seemed more confident in his diagnosis after upper endoscopy results. He has now put me on 40 MG daily of Prednisone with no plan yet of a tapper off.

I'm still in severe pain, not only in my lower abdomen, but in my stomach area as well. My symptoms haven't improved, they seem worse. I don't know how long it will take for the 40 MG of Prednisone daily to kick in...but these lovely side effects seem to make everything that much better...NOT!
I've been figuring out what to eat and what not to eat. I've tried getting back into running, by only small distances and I've been going to the gym. But any serious activity seems to exacerbate things. So, it's like a double edged sword. Do things to try to get better and the body says no!

I'm almost to the point where I feel helpless. I can barely function doing my job. It is almost impossible to be out on the street doing my job while having this disease. I have tried to keep the mindset where I won't let this disease take me. However, it seems to have a strong hold on me and I feel like I am slowly going down.

We all know this disease drains us physically and emotionally, but having to basically undress 10-12 times a shift just to go to the bathroom...it's exhausting. It's not like I can just quickly take off my pants and plop down on the toilet. I have to take off my outer duty belt, my under belt, radio, etc. Then when a call comes in, I have to scramble to put it all back on and make sure I don't forget anything. Doing this over and over in a shift is depressing. I don't even want to be here most of the time. Don't get me wrong, I love what I do and I've been doing it for seven years. I dedicated my life to this profession. But it seems like if I can't get a grasp on things, I might have to find a different profession and it breaks my heart.

I am not sure where to go from here. I hope there is some glimmer of hope. I had a TPMT test done yesterday. My Dr is talking about putting me on Imuran.

Thanks for reading my story. I appreciate your time and for allowing me a place to share my thoughts and feelings.
 
Last edited:
Hi!
Thank you for sharing your story. I'm so sorry to hear about your long road to diagnosis and that you are still suffering so badly with these symptoms.

Since you are not experiencing improvement on prednisone, I think it would be worth trying Exclusive Enteral Nutrition - basically a liquid diet (although there are now a couple of protocols that include some normal food as well). EEN is as effective as steroids (short timescale for response, approx 70% achieve reemission) in the general Crohn's population but may be more effective for you than pred. You can do EEN concurrently with your course of pred and this would hopefully give you better results and allow you to taper sooner. Let me know if you'd like more info about EEN.

Also has your doctor talked to you about where to go next with your treatment? It sounds like another biologic would be sensible, probably in combination with an immunomodulator like imuran, 6mp or methotrexate. I think you certainly need to start another medication so that it can help you achieve remission and to give it time to get to therapeutic levels for when you come off steroids.
 
My Story...the long and short of it...
(27 year old male/Police Officer/Diagnosis: Crohn's Disease)

So, I've battled stomach issues almost my whole life. Back in 2007, I had an upper endsocopy and they found several ulcers in my stomach and esophagus. They shrugged it off and said it was probably just acid reflux. Then over the years, I started to develop problems with my lower Gi tract. I was then told it was IBS. Two and a half years ago, I started getting into long distance running, because I had set a lifelong goal to run a Marathon. I ran the Portland Marathon and completed the entire race. It was amazing. I felt the best I've ever felt in my life.

However, overtime, my diarrhea would get worse and worse. Especially when I'd run. Most people just told me I had the runner's trots. But it seemed much more worse than that.

In October 2014, I went for a 7 mile run after I got off work. I had severe diarrhea. When I got home, I went to bed. I woke up approximately 15 times to go to the bathroom and found large amounts of blood in the toilet. I went to the Emergency Room and they ran a series of tests, including a CT scan. It showed obvious colitis in my colon. They told me to follow up with my primary care physician. About a week later, I did. I was then referred to a Gastroenterologist.

I had a colonoscopy and it didn't show much. It showed some nodules or inflamed lymph-nodes at my terminal ileum. Biopsies were collected. The pathology report showed active colitis and healing ulcers in my colon, especially around my terminal ileum.

I was put on Prednisone. However, I was never officially diagnosed with anything other than some unexplained colitis. My symptoms seemed to worsen. My abdominal pain became unbearable. I developed mucus drainage problems. I had mouth sores, especially on my tongue. My eyes were inflamed and I had terrible night sweats.

I was given Flagyl, Lomotil, Bentyl...you name it, I've had it. I then had a Barium CT scan. It showed lots of inflamed lymph-nodes around my small intestines. The Dr still wouldn't make a diagnosis. He then had a capsule endoscopy done. The report came back as showing nothing.
As my symptoms seemed to worsen, I wouldn't give up and kept bugging them. I finally had a special blood test done that was sent away to be tested. My DNA that was tested, showed I was positive for an Inflammatory Bowel Disease. However, it didn't specify Crohn's or UC.

My Dr then discovered a Fistula on my anus. After taking all the pieces of the puzzle and putting them together, he finally made up his mind and diagnosed me with Crohn's.

I was prescribed Humira. My body rejected it and I had a bad reaction. It caused severe liver problems and fluid build up around my lungs, that caused me to have difficulty breathing.

I went back for more follow up and he took me off Humira. He then scheduled me for an upper endoscopy. The results showed that the disease had progressed to my stomach and duodenum area. I had severe deep ulcers and erosions that were clearly visible. The pathology report also supported the visual findings.

So, the Dr seemed more confident in his diagnosis after upper endoscopy results. He has now put me on 40 MG daily of Prednisone with no plan yet of a tapper off.

I'm still in severe pain, not only in my lower abdomen, but in my stomach area as well. My symptoms haven't improved, they seem worse. I don't know how long it will take for the 40 MG of Prednisone daily to kick in...but these lovely side effects seem to make everything that much better...NOT!
I've been figuring out what to eat and what not to eat. I've tried getting back into running, by only small distances and I've been going to the gym. But any serious activity seems to exacerbate things. So, it's like a double edged sword. Do things to try to get better and the body says no!

I'm almost to the point where I feel helpless. I can barely function doing my job. It is almost impossible to be out on the street doing my job while having this disease. I have tried to keep the mindset where I won't let this disease take me. However, it seems to have a strong hold on me and I feel like I am slowly going down.

We all know this disease drains us physically and emotionally, but having to basically undress 10-12 times a shift just to go to the bathroom...it's exhausting. It's not like I can just quickly take off my pants and plop down on the toilet. I have to take off my outer duty belt, my under belt, radio, etc. Then when a call comes in, I have to scramble to put it all back on and make sure I don't forget anything. Doing this over and over in a shift is depressing. I don't even want to be here most of the time. Don't get me wrong, I love what I do and I've been doing it for seven years. I dedicated my life to this profession. But it seems like if I can't get a grasp on things, I might have to find a different profession and it breaks my heart.

I am not sure where to go from here. I hope there is some glimmer of hope. I had a TPMT test done yesterday. My Dr is talking about putting me on Imuran.

Thanks for reading my story. I appreciate your time and for allowing me a place to share my thoughts and feelings.
First of all, thank you for your service.

Second off, I'm really sorry to hear about your struggles. This is a physically and emotionally draining disease, but keep your head up. The right combination of therapy is out there for you.

Think of each failed treatment as another step forward in finding what actually works for you. I know this sounds odd, but it's what has kept me going.

Take care, and keep us updated on your progress.
 
I know how you feel. Im a 26 y/o and I am an RMA. I run to the bathroom a lot as well sometimes when I have patients. It is hard to maintain your career with these kind of issues but hang in there and know you are not alone! If you ever need to talk you can always message me! hope you get to feeling better.
 

afidz

Super Moderator
I am sorry you are having a hard time, this disease is awful.

I would try to back off of the workouts until you get things sorted out. Being sick (with anything) takes a lot of energy. When you have a disease that prevents your digestive tract from absorbing nutrients, the last thing you want to do is burn off the already limited amount of calories that you are getting. Your body is trying to tell you that by the exasperations that present themselves during or after your workout. I understand you are a police officer, so staying fit is probably important to you. However, it sounds like you are pretty sick right now, and you don't need to make anything worse. Can you take time off of work with short or long term disability until you get things straightened out? I know that is probably the last thing you want to do, but it may be the missing factor in getting better.
Prednisone is an effective med to bring down inflammation quickly, but it is not recommended for long term use because of the dangerous side effects that come with it. There are a lot of doctors that won't even prescribe it because of the risk of steroid dependency. Have you talked to your doctor about long term meds? A lot of times, doctors will start someone on a long term med and use prednisone until the long term med as a chance to build up and take effect. If your doctor is not willing to start you on a long term med now, to me that is a red flag.
I hope you start to feel better soon, talk soon.
 
I am so sorry you are going through all of this. I pray you move beyond this rough spell and find a treatment that works for you. Thank you for your service in law enforcement. Try to stay positive and be your own best advocate while you navigate through this. Take care, we are all here to support you!!
 
My story is very similar little brother... I'm very sorry you are experiencing such complicated and painful circumstances, while performing the extremely stressful and physically demanding duties of a cop. I know exactly what it feels like to work a double and make the mistake of eating a cheeseburger to try to get you through the second shift. Already exhausted.. 30 minutes bleeding like a stuck hog in restroom... foot chase & a fight.. DUI with a wreck.. & a Sgt. who doesn't understand what's taking you so long to clear your call!!! That junk knocks the wind right out of your sail, and then you go home and try to keep the boat floating there. DO NOT GIVE UP. People you don't even know are counting on you to respond to all this the right way.... to encourage them to not be shaken by their circumstances.

I have 23 years of police work behind me and I was a super-sick dude most of the first 20.... maxed out on steroids and every other thing known to man to try to manage Crohn's. Don't know if you'd be a candidate for this, but ask your doc about J-pouch surgery..... it has changed everything for me.

I'm praying brother.. thank you for giving me a chance to encourage you the way so many others have done for me. Cancer finally had it's way with my old patrol Sgt..... but the last words he spoke to me were "just keep putting one foot in front of the other." I've always interpreted that to mean, "Just trust and obey... God is not confused about your circumstances."
 

Tesscorm

Moderator
Staff member
I second the exclusive enteral nutrition (EEN) suggestion. It was this treatment that took my son into clinical remission (no outward symptoms). It`s not easy... :( as it entails eliminating all food and taking in all nutrition through nutritional formulaséshakes for a number of weeks. However, my son felt relief almost immediately - he did it for six weeks. There are no side effects with EEN and, as was said, it can be done in combination with any medication. However, do speak with your GI - you want to be sure you are taking in enough calories each day. FWIW, my son took in 3000 calories per day.

I`m glad your doctor is looking at a maintenance med like imuran. Most of the maintenance meds, immunosuppressants (like imuran, 6mp, azathioprine) and the biologics (remicade, humira, etc.) take some time to become effective. It`s not unusual to continue with steroids or EEN until the maintenance meds kick in. My son has been on remicade for two years now, however, he continues to drink one or two shakes per day - mainly to ensure nutrition is at a good level.

Did your GI decide on imuran and not remicade because of your reaction to humira?

I do hope you find relief soon! It's very hard to get through each day struggling with so many symptoms. :( Do be careful of too much exercise at this point... inflamed areas of the intestine do not absorb nutrients - it's very possible you are low in vitamins/minerals and the extra exercise may just be draining you of limited energy. Take care!
 
My GI Doc emailed me yesterday. He pushed my appointment up to June 3rd, so we can get this straightened out. Otherwise, I was going to have to wait until the end of June to see him.

In his email, he mentioned putting me on Methotrexate and Remicade. He said he might avoid Imuran, because I'm under the age of 35 and "Imuran has an increased risk of a rare but fatal form of lymphoma." :-/

He also mentioned another Cimzia. We are going to talk about all of this on June 3rd and see what direction we are going to go. I just want to start getting better and get off this 40 mg a day of Prednisone.

Thanks again for all of your replies and input.
 
I am so sorry your still having problems. I was about your age when
I was diagnosed. It's got to be hard on you with such a physical and
stressful job!

I know we all appreciate the job you do!

I hope you start feeling better soon.

Lauren
 
Hi cwt!

I ran across this post while researching for help with issues I am dealing with. I'm in LE on the federal side and have had crohn's disease for 27 years. I was able to manage my symptoms easily when I was younger, but in the past 5 years, things have gone haywire. I'm on Humira now (5 yrs) and I am going to have to go off of it because it is causing me to have other issues. I stopped for 1 month and my crohns symptoms came back. In addition, I have joint pain (especially in my wrists) quite a bit.

I'm having to make some difficult decisions related to my job and wondered how you are doing now.
 
Top