Unknown Crohnie for 7 years...

[Boioiod]

Diagnosed, in of all places, Florida. On Pentasa, but still as unhappy.

So my story starts back when I was 21, and started to see blood where should not be any. No matter since there was no pain. Flash forward 2 years, and I have what I now believe to be my first flare up after working in the real world for a year. Not THAT stressful, but I guess just enough!

At the time, I made the diagnosis of uc to the er doctor, but since I finally had my first solid bm in 4 weeks, it was immediately ruled out, and I paid my $1000 bill on my Discover Card (mad Cashback bonus!).

As time went on, my non-painful symptoms got more frequent and more severe, but it was decided to be 'roids, and since my kidneys weren't falling out I figured it wasn't that important.

Finally, I moved to sunny Florida. Got a job as top-dog of my own operation. Within 30 days, boom! From there, it got worse and worse, a bout of antibiotics from a regaled Florida dr that made it worse, severe exhaustion, a colonoscopy, and finally Pentasa.

The story continues... Still painful and bloated, exhausted, and with a diagnosis of a life-long illness - cheerier than ever!

 

[mikeyarmo]

Hi Boioiod,

Welcome to the forum. I am sorry to hear you had some difficulties getting properly diagnosed. I know that can be frustrating and went through an experience like that where for a few years IBD was not even considered a possibility, even though I have a sibling (twin) who has it and the doctor treating me had Crohn's as well!

Hope to see you around the forum!

 

[Boioiod]

I guess my writing did take bit of a turn for the darker, but I find a good bit of all this comical, or at least funny.

The whole doctor thing is fine, my gi charges $3k an hr between me and insurance, so I do mostly reading about ibd in books and online, and now here!

 

[allieinwonder]

wow, what a story! Welcome to the forum. We all share our stories and findings here, and I personally have learned so much from this site. I hope it helps you as well!

 

[ameslouise]

Hi Boi and welcome!

Glad you finally have a DX. Have you and your doc discussed the next steps, since the Pentasa isn't exactly giving you great relief? The usual course of treatment is blast it with Prednisone, then get on a stronger drug for maintenance. Pentasa is usually used for mild to moderate cases.

Exhaustion is one of the worst side symptoms of Crohns IMO. Have you had a full blood work up done, make sure you are not anemic or low in vitamin D or Bs?

Good luck - hope you start to feel better soon! You'll find tons of great information and very knowledgeable people here.

- Amy

 

[Saphira]

What do you think the problem is with making a diagnosis of crohns? We live in Florida too. My son has crohn's the first Dr made the diagnosis, but we had to switch due to insurance and the second one won't commit. I think it is because the prometheus test was negative (even though it is not sensitive for CD in at least 20% of cases).

Luckily I have a copy of the original diagnosis. I needed it for the school 504 plan, and for some financial support programs don't support UC only CD, so it came in useful for a back up for our Remicade payments.

Trina

 

[denisk]

I've learned more here in the last month or so then I have learned since being diagnosed. Hands down my favorite internet site

 

[xJillx]

Welcome to the forum! If Pentasa isn't doing the trick, you need to voice this to your doctor. I sure hope you can find treatment that gets you feeling better, so you can enjoy life in FL! Whereabouts, by the way? My husband and I nearly moved to New Smyrna Beach, but we got cold feet.

 

[Boioiod]

I actually live in nw Florida, the part nobody knows is there! From doing all my reading here, I am of the opinion that I need to step up my game with regrd to meds. If I am supposed to be back to normal, then that has certainly not happened.

As for my doctor, again after doing much of my own research, I am not sure he is the best man for the job to be working with. Besides, he charges $3k an hour ( $200 to me and $300 to insurance for 10 minutes where he says let's wait and see)!

I am finding myself becoming more and more comfortable with the self-directed approach. Since it seems treatment is highly peronalized, and there are at least some natural remedies for the inflamation, and my doctor isn't quite passing muster, it's Pentasa and hipster fixes for me.

Edit: As for the bloodwork, things are a little slower here than most places. My pcp left town for a little while, and though my results are in for anemia and such, the nurse can't tell me what they are. Now thats a business to start, bloodwork results that are actually readable and not just a few numbers. If Excel can do it for a budget spreadsheet, why can't the people charged with our lives do it?

 

[ameslouise]

Hey Boi- Will the nurse let you pick up the blood results? The report should give you your numbers, plus the normal range and then indicate whether your are low, high or in normal range.

There is a lot you can do in researching your own treatment. You'll learn more here than you will from hours with a doctor!

Good luck! - Amy

 

[Boioiod]

First visit to the GI after joining here and since I've gotten worse again! Shall we take bets on what he says?

1) Everything is OK, let's keep doing what we're doing.
2) Everything is not ok, but I have no idea.
3) Everything is not ok, let's juice you with pred.
4) Everything is not ok, let's be crazy and do something different.
5) *crickets*

 

[Jer's Girl]

Haha! Those are pretty much the answers I get every time! Add:

6) Of course you feel terrible. You have Crohns. What am I supposed to do about it? {Insert blank stare here}.

I agree that your own research, mixed with Dr care, is the only way to really combat this disease. Most of the time my Dr asks ME what I want to do about it and just does what I say. I always come with a list of questions and concerns so that I don't get intimidated when I am face to face with Dr X, Y or Z.

Good luck, and welcome to the forum!

 

[Boioiod]

Ha! Choice 7) he was a no show!

Finally I feel like I am getting forward motion. Pred, cipro, and maybe entocort or humira down the road. I can tell you what the best part was - being able to have an intelligent conversation with meaningful back and forth, due mostly to this site! Thank you to all of you!

 

[ameslouise]

Glad things are moving forward!

 

[Snookums]

Hi Boi. I am a newbie and have just been reading your story. The most frustrating thing about this disease is as you mentionned its uniqueness regarding treatment for each individual sufferer. If only there was a manual somewhere that all docs could refer to that had one direct solution to the problem. There are just soooo many different symptoms, meds and treatment methods out there and unfortunately it really is trial and error to find something that will suit your own particular needs. In Australia, not sure if its the same anywhere else, My doctor generally doesnt run anything by me until a team of gastro experts have discussed my case together. From there they have some kind of consensus thing happenning about what would be appropriate for me. I think this is great in the sense that all pros and cons hopefully are being raised but sometimes can mean getting anything done can be a slow process. If i could give you any advice it would be that you need to make sure that when you are seeing a doc you tell them everything about what is going on. Im not sure if you keep a diary of your symptoms but it is a great way to keep them updated and informed about your own individual story. The other thing is to be very upfront and as informed as possible about what is working and what isnt and insist on the doc doing something about it for you. After reading your stories I cant help but feel as though I am a little blessed in the sense that on top of dealing with the disease I fortunately dont have the stress about worrying about the financial aspect of it all. I am sure if i had that to worry about that too, i would be a mess. The medicare system over here means that a lot of my procedures are covered and i do pay a little for medications. Obviously I am paying taxes to cover these perks as are all australians, I just wish it was a little easier for you guys to have your medical needs met without the hip pocket being a concern for you all as well. Without going into too much detail about all of that as i do feel im drifting a bit, do not allow yourself to be fobbed off. Push for answers and continue to do so until you find something to help make your life a little more bearable. good luck with finding the right treatment for your crohns.