Finally Diagnosed - Crohn's

[tonimacaroni]

Hey all,

I am not that new, I joined about a year ago while I was having a bad flare up. At the time I was still undiagnosed... but not anymore!

A couple weeks ago I went to the dr. for Angular Chelitis that wouldn't go away. She diagnosed a staph infection, and after seeing my nails peeling, she wanted to do some blood tests. I have always been anemic but the last couple months I've felt really down. My Dr. upped my anti-depressents twice in that time. My hemoglobin came back as 7.7, which is the lowest I've ever seen it. I usually hover around a 9.

She sent me for a colonoscopy/endoscopy because due to my history she suspected a bleed. The colonoscopy showed a classic flare up of Crohn's in my ileum. Also, I have H. Pylori in my stomach (I've had two negative tests for that in the last year...)

In August I had my gallbladder out, and now I'm officially a Crohn-y. It's been a rough year, and I'm feeling really quite down about the diagnosis. I'm relieved to FINALLY have the answer after over a decade of off and on symptoms... but now it's official. I have a disease. That I will have the rest of my life. No chance it's a food sensitivity, or stress, or H. Pylori (alone) Nope. It's a permanent disease.

I kept my spirits up through the holiday, but now I find it hard to feel happy about anything at all. My flare is starting to subside without any meds. My doctor is going to look at getting me on a 5 ASA soon. For now I'm just taking antibiotics, iron like crazy, omeprazole, probiotics and vitamins.

Anyway that's my story. Hi everyone.

 

[dave13]

It is rough to hear you have been diagnosed with an incurable disease.I was diagnosed a little over a year ago and clearly remember that conversation with the doc.Knowing what you are fighting may seem like a small consolation,but it is important. You can work with your GI and decide the best approach for you.

It's perfectly normal to feel sad,lost,angry and many other emotions after such a diagnosis.Since you have been a member for awhile I hope you have seen the stories about chronies living and doing and not giving in to this disease.We may have to alter our approach but we can still have a high quality of life.

Have you told your doctor how you are feeling? Do you have family or friends to talk to?

 

[tonimacaroni]

I haven't really told anyone how I feel about it. My mom a little, but she gets really emotional about this for some reason (she's usually not like that) and I don't want to upset her more. My husband doesn't get why the actual diagnosis should be hard for me, when I've suspected it for years. I tried to tell him that there is no out anymore. There is no way it's IBS or stress, or some weird food allergy. It's a life sentence.

I have read a lot of good stories, and I know my life will continue much in the way it has been for the last 10 years... flare ups and months/years of good in between. Once I get this anemia under control I'm sure i'll feel much better about things. It's hard to be optimistic when you are tired all the time.

 

[Pilgrim]

It really and truly will help when the anemia is better. Also if you didn't get them checked yet maybe request Vit. D panel and B12 and the whole works. I noticed a huge difference in my daughter once the anemia was fixed after diagnosis this year.

She still has Crohn's, but she doesn't have to spend most of every day on the couch anymore.

It's a big adjustment for your husband. He's probably frustrated at the thought of having you feel like you do now - forever. But you won't. Because now you have a diagnosis and there will be treatment options and eventually you will find something that really helps. There are a lot of options out there now.

That said, I think in our home we've all gone through a "stages of loss" type of thing and anytime we have a bad reaction to a med here, or a Crohn's flare we kind of do it again. Some denial, some anger, some sadness, some acceptance. I think that's one of the tough bits of a chronic disease that comes and goes. It's a bit of a roller coaster. But in a way it's getting easier because we know to expect the ups and downs now.

I hope the emotional aspect gets easier for you both. I know in marriage sometimes we come to things at different times. That's code for "husbands take longer to get it".

 

[KarmaForHire]

I had a hard time when I was first diagnosed, but now that I am treating the disease, I honestly feel better than I have in my entire life. There is an upside to the diagnosis, you know exactly what the problem is, and you have options to help treat and control it. Keep that in mind. This isn't a life sentence unless you want it to be. Are there any plans to put you on a medication?

 

[tonimacaroni]

The GI that diagnosed me wanted to put me on Remicade or Humira. I really didn't like him though so I'm looking for a new GI. If I have to do this for the rest of my life, I want a GI I like. So at this point I'm just trying to get my anemia and vitamin levels up... then we'll move forward with meds. I'm having a flare right now on top of the anemia so I'm pretty miserable at the moment.

I wish sometimes I could just let him inside to know how I feel, because I worry he thinks I'm faking or milking it... Like, I don't want to lay in bed all day at all, but I'm just so tired.

 

[Pilgrim]

I didn't like our GI either. REALLY didn't like. But after awhile I realized that a lot of the problem was that I didn't like the treatment options he was offering, and that I had expectations of his staff that weren't realistic.

Once we settled on taking his treatment advice. We were all a lot more comfortable. Sometimes they are simply 'numbers guys'. They prefer to look at your labs and charts and make the decision from those, instead of the symptoms you are telling them - because of the subjectivity factor. He could well be a jerk, too, but I'm just thinking that when you are exhausted beyond belief it's going to seem like climbing a mountain to get into a new practice.

It's a big decision to go on meds, but they also could change your life for the better. It's a lot to weigh. I hope things turn around for you soon.

 

[dave13]

The GI that diagnosed me wanted to put me on Remicade or Humira. I really didn't like him though so I'm looking for a new GI. If I have to do this for the rest of my life, I want a GI I like.

Having a GI you can trust is important.Do you not like him because of the Remicade and Humira recommendations? A good doctor tells us what we need to hear,in their medical opinion,to fight this disease. Are there other reasons?

I hope you find one you can work with.

 

[Catherine]

Here my 2 cent worth.

Anemia is a symptom that the Crohn's Disease is out of control. Your GI believe the best way to fix the anemia is to hit the Crohn's with the big guns.

 

[tonimacaroni]

Having a GI you can trust is important.Do you not like him because of the Remicade and Humira recommendations? A good doctor tells us what we need to hear,in their medical opinion,to fight this disease. Are there other reasons?

I hope you find one you can work with.

No I'm sure I'll start on Remicade or Humira soon, as I need to get things under control. I didn't like him because he was very quick with me, and didn't explain anything. he was in and out. Kind of frustrating.

There are a ton of other GI's at his practice I'll probably see if I can meet with a different one.

 

[dave13]

No I'm sure I'll start on Remicade or Humira soon, as I need to get things under control. I didn't like him because he was very quick with me, and didn't explain anything. he was in and out. Kind of frustrating.

There are a ton of other GI's at his practice I'll probably see if I can meet with a different one.

I switched GI's myself. My current GI is great with answering questions. He is very patient with me and my concerns and he doesn't keep his nose in a laptop during the visit. He actually sits and talks. I'm a very visual person and he will use the various posters and charts in the office to help me understand.

Let us know how the search goes.

 

[liscol]

Good luck with finding new GI and getting long term treatment. I also wanted to say I was anemic for a long time over (12 months) took lots of iron tablets but it just keeped getting worse, finaly got an iron infusion and it made such a big difference so if your levels don't inprove ask for an infusion.

 

[Grotbags]

Sorry you've been diagnosed with Crohn's, but now that you have been diagnosed, you will get the treatment you need, and your life will improve, that's all positive, and stuff to be thankful for in my book .
You've had 10 years of struggling with it, without the proper medication, imagine what you'll be like once your med's are in place and taking effect .

I agree if you don't like your consultant, you should change, I've been lucky, my original one, I really trusted, he retired, I got one chap that I really wasn't keen on, saw a different one ( my pocket rocket ) last time I was in hospital, and requested him as my consultant.
So pleased I did as he's more than likely saved my live.