Missed First Day Of Work Due To This Crohn's

[lorij]

I was diagnosed with Graves disease (overactive thyroid) in 2005. I was diagnosed last year (2015) with Crohn's after I did a wellness physical and all that came with it because insurance paid for it. The Dr called me on a Sunday to tell me that I had Crohn's. I was pretty familiar with it because I have a cousin near my age (55) who has been disabled for probably the last 15 years with it. I told the Dr that I was going to have a hard time taking it very seriously though because I had no symptoms. He said that was great and that I must be in remission and to call if I ever needed them.

As I thought about it and it started to sink in I didn't want to tell anyone because I didn't want anyone to feel sorry for me. I told my sister and daughter , then gradually started telling other family and friends. I also started to realize that the burn I had felt in my belly must have been Crohn's all along.

Yesterday I missed my first day of work due to this Crohn's. I'm not happy about that at all! I don't miss work. I have been absolutely miserable for going on 2 weeks now. I thought it would just pass like every other time I had the "belly burn". It hasn't. I'm feeling a little better today and did go to work. I had to wear droopy pants because I can't stand anything around my belly, never have been able to stand anything too tight. I have also been researching soothing belly foods, that's how I wound up here.

Anyway, I'm going to check into intermittent FMLA.

 

[my little penguin]

Are you seeing a Gi ?
Did they dx your crohns by colonoscopy( with biopsies) and MRe ?
You can't dx crohns with a blood test.
What meds are you taking ?

Once you get in the right meds things are a lot better

 

[ronroush7]

Welcome. You have come to a great support group.

 

[lorij]

Yes, I know Crohn's can't be diagnosed with a blood test. I did have a colonoscopy and a biopsy. Why would anyone want to just say they have Crohn's. I am not on any meds. I said I didn't have any symptoms and this was the first time I had to miss work.

If this becomes more than I can tolerate I will call the Dr but I haven't needed him yet.

 

[my little penguin]

I am just trying to understand.
You had a colonoscopy with biopsied which presumable showed signs of damage ( inflammation /ulcers etc either visually and/or on the biopsies ). Your only symptom is abdominal tenderness but you haven't had any imaging of the small bowel to look for strictures /or thickening .
Did your Gi offer medicine to stop the inflammation and get it under control ?
Did the doctor recommend imaging to determine the extent of the disease ?
Is the doctor at least monitoring your inflammatory markers through blood and stool tests regularly ?
Symptoms on the outside typically don't determine how crohns is treated .
Some folks have a ton of symptoms but not active inflammation going on vs others who have next to no symptoms but have silent inflammation that results in surgery if left untreated.
Tagging Clash.
Her son falls into the no symptom catergory .

Having no symptoms makes the decision to treat with meds harder since you can't physically see the damage being done or feel it .
Were you given steriods at dx to at least take the inflammation down ?
Some use EEN ( exclusive enteral nutrition ) formula only no food to treat the inflammation Instead of steriods .

Your doctor may have gone through all this with you but some do not explain the seriousness of untreated crohns ( even though you have no outside symptoms ).

Fwiw there is a blood test through Prometheus that helps determine whether a person is more likely to have crohns or UC - more than a few folks have been given that blood test and told it's highly likely they have crohns but at the end of the day after further testing they did not . It wasn't something they wanted to have they were just given the wrong information. Others have had the blood test when their colonoscopy results were borderline for dx . Which is where the blood test comment was from .

Hopefully you can get into to see your Gi and get the abdominal pain evaluated with imaging and get started on the right meds to stop the inflammation .
Good luck

 

[lorij]

I guess I don't understand what you don't understand. YES I had a colonoscopy and a biopsy. The Dr said it (the biopsy) showed I had Crohn's. He gave me a collage of the pictures that they took during the procedure that showed ulcers. I told him I had no symptoms and he said there were treatments if I ever needed them. He offered and I declined. I do not take medication I don't need and I don't feel I need it at this time. I even told my family Dr that maybe he made a mistake and she said no that there was a biopsy.

You didn't ask a question about a blood test. You stated "You can't dx crohns with a blood test."

My experience with this is limited as this is the first day of work that I have missed because of it. My pain is gone today after about 2 weeks and I won't be going to the Dr until I need him.

This may not be the place for me because I don't understand what you are getting at. Good luck to you.

 

[ronroush7]

Sometimes , we don't always know all the damage going on in our body so we need to have a doctor to monitor us.

 

[Clash]

Welcome to the forum. Sorry to hear you have been diagnosed.

My son was diagnosed almost 5 years ago now.

He is asymptomatic, meaning he doesn't have any outward symptoms, yet his Crohn's is active and causing damage to his intestines. Without symptoms the active CD caused enough damage that he required surgery.

It's important to remember that the treatment standard isn't based on whether you are experiencing symptoms but on whether a not your disease is active meaning inflammation is causing damage that can be irreparable. The inflammation doesn't have to be severe, even simmering inflammation can cause permanent damage.

Even if you choose to not treat your disease with medication it is important to monitor your disease with blood work and or fecal calprotectin. You definitely don't want to be in a position where inflammation(with symptoms or without) causes permanent damage.

As far as FMLA, your GI should be able to help you with submitting a letter and filling out paperwork.

 

[lorij]

Clash
If you don't mind me asking, If he has no symptoms how did you find that your son has Crohn's?

 

[eleanor_rigby]

Before I was diagnosed, I used to have very few symptoms - occasional stomach cramps. Then one day after about 5 years of these occasional cramps, I got sudden extreme pain on the right side and a fever. I was hospitalised thinking that I had appendicitis. Turned out I had Crohn's and one of the ulcers had perforated my bowel so I had a hole in it where waste was leaking out. An abscess developed around the hole. This is a medical emergency that you can die from. I later had a bowel resection. I think everyday about how maybe if I had known about the Crohn's and been on treatment, all that mess could have been avoided. Untreated Crohn's is often a ticking time bomb.

 

[Clash]

lorij my son didn't start out asymptomatic. So at dx he was symptomatic but had only been so a couple of months. The scope, though, showed that he had had simmering inflammation for much longer than he exhibited symptoms.

He was placed on meds and has been through a lot of them. He has become asymptomatic even though his level of inflammation has been unchanged.

The important take away though is that no matter your approach to treatment disease monitoring is key.

The old treatment standard was to treat to clinical remission (the absence of symptoms). It has now been shown that deep, stable remission which includes clinical, endoscopic and histological remission with full mucosa healing is important in ensuring that permanent damage doesn't occur. This lessens your risk of stricturing, accesses, fistula surgery etc.

 

[danmc]

I found out I had Crohn's after going to the ER with what I thought was a hemmorhoid from Hell but turned out to be an abscess. Had to be cut open and I missed 5 weeks of work on disability.

I think that being diagnosed with Crohn's while asymptomatic, rather than waiting until you need surgery, would be a blessing actually.

 

[lorij]

danmc... You may very well be correct that it's a blessing. Please keep in mind that I am trying to adjust to having any symptoms or feelings about my condition at all.

At this point in time for me I'm trying to figure out what to do next. My priority right now is trying to protect my job that provides me with income to live on and health insurance that I will most certainly need.

 

[EmbraceJoy]

Hi, lorij.

Forgive our eagerness to make you take drugs.

My daughter has rheumatoid arthritis (dx at 10) and is now 19. The damage to her joints continues at some rate, even when she feels no (or minimal) symptoms. Crohn's is similar.

It's an accelerated jump from no meds to finding about intermittent FMLA. I had to use my short term disability and a few FMLA days when I was diagnosed and hospitalized twice in April/May. I am the sole provider for one still minor and two college kids; I get your concern about income and continued benefits!

A burning belly for 2 weeks is too long - go see a Dr, especially when you have had a significant diagnosis in the past related to that body geography.

Crohn's meds are used to treat acute (flares) and reduce additional flares. While they don't address the disease, they do help with symptoms, comfort, etc.

 

[Jennifer]

Welcome to the forum lorij.

We have many members who continue working and manage their disease and appointments as well. We understand the need for income and health insurance all too well yet sometimes we do see members who wind up needing to go on disability etc because their disease eventually prevented them from working.

If you still aren't interested in medication at the moment then you could check out the forum's section of diets to try and reduce symptoms and maybe some inflammation but keep in mind that medication has a much higher success rate in terms of controlling your symptoms, going into remission and avoiding surgery and other complications. http://www.crohnsforum.com/forumdisplay.php?f=17

Since your scope showed ulcers that means you were and possibly still are dealing with active inflammation even though you have very few symptoms right now. If you want you could make a new thread in General Discussion to discuss how to juggle working with managing the disease so you can maintain income, health insurance and go into remission.

 

[lorij]

Thanks to all the comments here. I started this thread on 7/21. Called the Dr on 7/27. The nurse took my info and told me they were scheduling into October. I wasn't comfortable with that so the nurse said she would give my problems to the Dr. They called back within the hour to put me on steroid, Prednisone 5mg - 4 every day for a week then 3 every day for a week, etc.

This is my 4th day taking and just now starting to feel a little better. We'll see what happens but pretty sure that I may have to find another Dr who actually has appointments available. It's just that my Dr is about the best in my area although there is one other that is really respected as well.

I have also checked out the foods that are less aggravating to my symptoms. Hate to eat avocados, rice and mashed potatoes all the time. Good thing I really like them all

 

[danmc]

Took me 3 months to get an appt. with a GI MD, who I see tomorrow. I have been working with a PA though who is very good.

 

[MissLeopard83]

Thanks to all the comments here. I started this thread on 7/21. Called the Dr on 7/27. The nurse took my info and told me they were scheduling into October. I wasn't comfortable with that so the nurse said she would give my problems to the Dr. They called back within the hour to put me on steroid, Prednisone 5mg - 4 every day for a week then 3 every day for a week, etc.

This is my 4th day taking and just now starting to feel a little better. We'll see what happens but pretty sure that I may have to find another Dr who actually has appointments available. It's just that my Dr is about the best in my area although there is one other that is really respected as well.

I have also checked out the foods that are less aggravating to my symptoms. Hate to eat avocados, rice and mashed potatoes all the time. Good thing I really like them all

That's the unfortunate thing about good doctors - they are harder to get an appointment with. My former GP is a good example - she was often booked up 3 months in advance. My insurance doesn't cover her, so I had to see a new GP - internal medicine specialist - who I really like.