Diagnosed Today

[Asher]

Hi there, You guys can call me Asher. I'm a 28 year old woman who's been married for a little over two years.

Here's my story:

A few months before I got married back in 2012, I started getting constipated and having weird mucus in my stools. I ignored it due to the demands of my job and the fact that I hate doctors. For that time, I had just weird bathroom habits and found some food made me sick. Mainly bloating and feeling uncomfortable. Never any pain...

Finally after a year and a half of symptoms, I went to a GI doctor. They diagnosed me with IBC - A. Basically, I was either constipated or having diarrhea. But I was mainly C. Every now and then with my C stools, I would have blood. I tried to ignore it again because I was too busy for doctor appointments...

Went to the doctor again and they said well if you had insurance we'd say to get a colonoscopy, but since you don't have it it will be expensive, you probably don't have anything serious because you're young, you probably don't have anything like Crohn's or UC... and you're constipated. Those are usually D symptoms with pain.

Well, cut to last week, out of no where I started to get severe bloody D and after 5 days I decided to go to the ER.

I just got out of the hospital after being in there for a week. I had a colonoscopy and a full barium test. They found Crohn's.

I need to admit that I am trying to be strong to my husband, my family, and my friends, but I am really scared because from what I understand, this disease is very unpredictable.

I greatly fear having embarrassing moments in public. My husband had UC, but after getting surgery and now having a J-pouch, he is doing much better. But I saw what he went through with UC, and I don't want to be that vulnerable... I see that Crohn's is even worse than UC.

I'm transparent when saying I'm upset that my doctor didn't realize I had Crohn's sooner. Maybe I could have avoided ever having a flare up?


I now need to decide what kind of medication to take. Humira or Remicade? Both seem so scary. I fear drugs in my system. I fear decreased my immune system.

I am going to be coming here a lot, to lurk, to research and to seek understanding.

I am excited to learn from all of you and hopefully your strength will pass onto me.



<3 Asher

 

[DJW]

Hi Asher and welcome.

Sorry to hear your diagnosis. Try and take things a day at a time. Their is an adjustment period.

Regarding medications - its very important to treat crohns properly. Untreated or under treated inflammation can cause serious risks and complications down the road. (Inflammation can be present with no symptoms)

I also recommend keeping a food and symptom journal to see if you can pinpoint problem foods.

Sending you my support.

 

[Thaymez]

You shouldn't have to jump straight to humara or remicade. Some apriso and 6 mp might do it for you. Any way I'm not a doctor, but I would ask if there are less harsh alternatives first. I am now at the stage of selecting either humara or remicade because nothing has come close to stopping this nightmare. I chose humara because they are at home injections once every 2 weeks rather than a day at the hospital getting an infusion. Good luck to you- and God help us all.

 

[valvo33]

Crohns is a difficult disease to diagnose for the docs and also not easy to medicate as it depends on what part of your intestine it strikes, personally I would avoid steriods if possible as they have a long term affect on your system , I had a fellow work collegue who was on steriods for a few years and was told he had the liver of a 30 year hardened alcoholic

On the positive side crohns is not usually a terminal condition just very inconveniant especially if you are still off a working age and like socialising

In my case the frustrating thing is its a bit like having back pain in as much you dont have any physically obvious symptoms like a missing limb and as most if not all crohns sufferers are pretty thin ( myself included ) a lot of your friends and fellow workers assume you must be very fit and are just a moaning minnie

anyway I am now 57 and have survived the condition for 38 years and still enjoying a good quality of life

regards Stevie

 

[Clash]

There is no reason not to start with the biologics. It is usually based on the philosophy your GI follows, either the top down approach or the button up approach. For a long time GIs only had the bottom up approach, as each med failed you moved to the next med, but with all this trailing and moving on there was a lot of leeway for CD to summer and create scar tissue which can inevitably lead to surgery.

Now there is the top down approach hitting the inflammation with the big guns in hopes of preventing surgery. There is a study in the research section about this very thing. Apparently starting biologics within the first few month as dx can severely cut the risk of future surgery.

Also, the risks for immune suppressants like Imuran and 6mp are equally scary as well as leaving Crohns under treated or untreated.

Good luck hope you find relief soon

 

[alex_chris]

Asher, I am sorry you got the diagnosis. At the beginning it is really hard to accept. The only consolation I can give you is that Crohn's can be well managed in most cases but required discipline and the right mix of treatment. Also, while Crohn's is not something to be downplayed, there are much worse things in life. I live in a Western country, have a great job, am otherwise healthy, have access to great healthcare and there is no indication my lifespan will be reduced from Crohn's.

In any event, it is great you did the right thing to get information on Crohn's right after your diagnosis. Many people do not do it and get into a lot of trouble because they have no idea about what Crohn actually is.

The first thing to note is that medication is just one part of the treatment equation. Surely in most cases an important part, but it definitely isn't the most important part or something that by itself can treat crohn's efficiently. My personal treatment mix is a. Really knowing what to avoid when eating, which isn't so much avoiding certain foods (except onions, I can't eat them in any shape or form) but how to cook and how to eat, b. Sport, endurance sport at least 3 times a week, c. Stress avoidance, not in the sense of not having any stress, but not reacting to stress "stressed" (I have a job in which I sometimes am in the office 80-90 hours a week, but I am still generally not stressed) and d. The right medication, taken at the right time in the right dosage (including certain supplements which in my case are required - to prevent iron and magnesium and zinc deficiency).

 

[Asher]

Thank you all so much. It's nice having support.

 

[Pilgrim]

Hi and welcome. I found it interesting that you and your husband both have Inflammatory Bowel Disease.

I wonder how often that happens. I usually read about a genetic link, but in this case it would be an environmental link. Or an unfortunate coincidence.

Someone wise said to me on the forum a few months back to give myself time to grieve the diagnosis of my daughter with Crohn's. It's true. So, my heart is with you as you grieve it for yourself. I'm sorry you have to go through it.