Newly diagnosed and having a hard time...

[maideniles]

Hi, all.

My name is Michelle. I'm a mother of 3 and I'm a stay-at-home mom.
I received my diagnosis of crohn's about 3 weeks ago. I've been sick since 2000 or so, and I'm still sort of reeling from the diagnosis. In more than 10 years of suffering, crazy amounts of testing, hospitalizations, etc...not one doctor has ever been able to figure out what was going on with me, until now. I'd been told everything from the good old "you're depressed, or it's anxiety" or "it's severe IBS-- worst case I've ever seen" but despite taking whatever medication they promised would make me feel better, nothing worked.

So, here I am, after all these years of pain, nausea, diarrhea and humiliation--not to mention a plethora of other "crazy stuff" I've had to deal with--and all of a sudden this guy has it figured out. Everything he has said makes perfect sense...right down to the "unexplained" vitamin deficiency I've had since 2006. (According to him, that's from the crohn's not allowing my intestine to absorb nutrients properly)

But I still don't feel like I can relax and I don't know why. Maybe it's because I've gone for so long being told it's all in my head and they will never figure it out; I don't know. I'm just having such a hard time accepting it. On one hand, I'm thrilled to finally have an answer after all these years, but on the other, I'm skeptical. Did any of you go through this or am I just nuts?

My diagnosis was given by exam, medical history (he listened to me blubber on with my sad story and looked over years worth of test results/lab work for well over an hour) and finally blood tests. I'm still so confused though because we haven't ever "seen" the crohn's. He believes it is in my small intestine, hiding somewhere that they can't get a scope into. I asked about the pill cam, but he said that it's not an option for me--I have a history of inflammation and strictures--but he is absolutely certain that Crohn's is what has been ruining the entirety of my adult life. Oh, and that's along with Hashimoto's Thyroiditis and Psoriatic Arthritis--two more diagnoses that he gave me that day. (from blood tests)

He started me on the "typical treatment for crohn's". (he said)

I've been taking Flagyl and Cipro, along with sulfasalazine and diclofenac for about 3 weeks now. Normally, any one of those antibiotics will make me sick as a dog, on its own. But together---oh, my word. I've not been this nauseated since I was pregnant. He's not been too kind about that, either. When I called today to report that despite taking them with lots of food, and using pepto bismol, and taking prilosec (prescription) and every other suggestion he had for me, I am still narfing some of my meals and sometimes the pills, too. I was told to stop the antibiotics to see if they are what is causing my nausea.

Here's my problem with that though--I think they are working, so I'm not sure if I want to stop them. I mean, I've been feeling AWFUL since I started them--lots of flu like symptoms and such--but I was told that's all part of it, something about the bacteria granulomas dying and toxins and I think something called a herx. But my belly has started to improve. I think I've actually had normal bowel movements over the last few days. (I'm not even quite sure what a normal one really is, isn't that sad?) I am staying nauseated 24/7 but I am no longer running to the bathroom 20 times a day and I don't feel like I'd rather be in labor when the stomach cramps hit--come to think of it, there aren't even any more "cramps", now it's just more of a "I gotta go NOW" feeling.

So, I guess I'm wondering, do they actually have to FIND it in your belly (colonoscopy or endoscopy) to give you the diagnosis, or is the blood work, history and other stuff enough?

And these meds--these awful, awful meds....how long do you typically stay on them, and HOW ON EARTH can I cope with the nausea, bad taste in my mouth, etc? I could really use some help here...I'm used to being able to take a zofran or a phenergan when things got real ugly and now I'm not allowed to anymore.

Stuff I've tried so far, but to no avail: Pepto Bismol, benadryl, Maalox, tums, Emetrol, ginger root capsules, pro-biotic (2 million bact) pepsid, prilosec, peppermint tea, peppermints, chewing peppermint gum, sipping ice cold water, nausea wrist bands. So far, the only thing that has helped (not totally, but better than anything else) has been zofran, but I've run out. I still have a little phenergan left but I can never function on that stuff and I have 3 small children. Not really an option, unless it's night time. And even then, it's questionable.

Should I stop the meds or just tough it out, since I'm improving? What else do they use to treat this stuff? I took prednisone for about 8 months or so (a rheumatologist I saw thought I might have lupus) I noticed some improvement but I also stayed stopped up on it, too. I weaned myself off it when we found out I developed osteoporosis a few months ago.

Sorry for the long post. I'm just a mess and it's so hard to lump all of this into a few sentences. Forgive me.

~Michelle

 

[David]

Hi Michelle,

My goodness, you poor thing I wish I could give you a big hug, you've been through so much and deserve better. I wish I could say your story of pain and humiliation is unique, alas, we see it time and time again here

With that said, you've got a diagnosis now! WOO! Here's to getting on a treatment plan that will work for you now that we understand what we're fighting! And yes, a diagnosis can be given without seeing the actual inflammation if everything fits, though many doctors will try their best to get that confirmation. I'm curious what method was used that saw strictures and where your inflammation (that you have a history of) is located.

Other questions:

1. Being on sulfasalazine, were you given a folic acid supplement?
2. What kind of doctor diagnosed you? A Gastroenterologist (GI)?
3. You mentioned a "vitamin deficiency". What were you deficient in and are you still?
4. Did the doctor say what he specifically gave you the diclofenac for?
5. Other than the symptoms you mentioned, do you have others?

I'm sorry to hear you're so nauseous What a terrible feeling that is. As for continuing on the drugs or not, that's not for me to recommend. But I will say we're glad you found your way here and we're here for you through and through.

*hugs*

 

[maideniles]

David,

No, I was not given any kind of supplement with the sulfasalazine. Is one necessary?
The doctor who diagnosed me is a Rheumatologist, Nutritionist and also practices sports medicine. The GI doctor I had been seeing pretty much washed her hands of me when my colonoscopy came back normal. (I had one 5 years prior in which they could not even finish the test because I was so "twisted". I think they called it 'tortuous' or something.)

I have had a chronic problem with being low in potassium (probably all the D) magnesium, calcium (i'm osteoporotic despite taking supplements and vitamins for years) and iron. (I'm on-again, off-again anemic) I also have a chronic low wbc (lymph) count, and my platelets go back and forth from "low-normal" to "low", but I'm not sure if that has anything to do with any of this. Last check, only my potassium and lymph count were low. Everything else was "low-normal"

He said the diclofenac was going to help with the pain, along with the joint issues I've been having.


Other stuff that I have along with the crohn's:

Hepatitis, (unknown cause, he says it's from the crohn's)

Endometriosis/adhesions, (hyst. done in December, follow up exploratory lap found even more endo up behind my liver and along the ascending colon)

Arthritis (recently changed from dx of rheumatoid to psoriatic)

SEVERE keratosis pilaris (he said it was a sign of a chronic infection, I.E. chron's)

Hashimoto's thyroiditis (thyroid "levels" are still normal as of yet, but the inflammation test was through the roof, and he said he could feel it during the exam)

Optic neuritis, reynaud's disease, psoriasis, asthma, interstitial cystitis, Hemi-plegic migraines. (they mimic a stroke)

As for the inflammation/strictures...I had an endoscopy done last year and they said I had inflammation in my stomach, duodenum and esophagus. They said it was "mild gastritis and reflux" and had no other explanation for me. I still get severe esophageal spasm, although those seem to be improving, finally, too.

I've had x rays, ct scans, ultrasounds, upper GI with small bowel follow through, etc. The upper GI/sbft came back normal, too. Although, on the evening of the day that i had it done, I wound up in the ER because of intense pain and cramping. They did an x ray and said it showed a stricture and referred me to a surgeon. He is the guy who found the remaining endo along the ascending colon and behind the liver, along with numerous adhesions all over my bowels, etc. He said it did not look like crohn's to him, though. (that was one possibility at the time)

FWIW, I only felt better during the first week after the surgery--in which I was taking flagyl. Right after i finished the flagyl, all the pain, n/v/d started back up again. Go figure...

He mentioned starting me on methotrexate by injection (to bypass the GI effects) when I go back for my follow-up at the end of september.

Do any of these medications/treatments sound "right" for crohn's? I saw them listed on the CFA website but nothing about taking them all together.

~Michelle

 

[David]

WOW. You poor thing. Let's see, where to start...

When you said you were on diclofenac my antenna went up a little and I wondered if your doctor wasn't a GI. It's a very strong NSAID which is typically not prescribed for someone with Crohn's Disease, especially if they're in an active flare. Now, this is a case by case basis thing, so I'm not saying your doctor is wrong, I'm just regurgitating what I've read

Flagyl or Cipro are quite common to have prescribed.

Folic acid supplementation is often prescribed alongside sulfasalazine as it can impair absorption.

It sounds like you're potentially anemic. Have they mentioned that at all? And do you know if they ever checked your vitamin B12 and folate levels?

As much as you have going on, if the roles were reversed, I would seek out a well-recommended GI for another opinion as I don't like the sound of your last GI. But that's just me. If you're comfortable with your Rheumy handling this, especially since you're feeling some improvement (other than the nausea), that's great.

 

[xJillx]

Hi Michelle and welcome. Yes, many experience the bitter-sweetness after getting a diagnosis. It's good to put a name to what is going on with your body, but no one wants to be diagnosed with a chronic illness.

I am happy your meds seem to be working, but I don't like the side effects you are experiencing. Also, I don't like how your doctor isn't concerned with your discomfort. Furthermore, I am not so sure why your doctor is writing off the pill cam. I can understand the concern of it getting stuck, however, that is very, very rare. If he does believe the Crohn's is in your small intestine, the pill cam would be the best way to know for sure.

Have you considered trying to find another GI? Perhaps your Rheumatologist can recommend one.

 

[Astra]

Hiya Michelle
and welcome

Wow, you've been thro so much, so much time wasted too.
I can relate tho, I was labelled mental for 15 years before my diagnosis, and I can't tell you the relief I felt when I finally got it!
I snogged the doc's face off and framed my letter!

David has voiced all my concerns too, and this is what I would do - research the treatment section on here, there are loads of other meds out there.
Metronidazole (flagyl) made me sick as a dog too and the metallic taste, YUK
There are non sulpha meds too, such as Asacol and Pentasa
There are other painkillers out there, you shouldn't really be taking Diclofenic.
Can you get a second opinion?
Really hope you get something sorted, even if it means another go of Pred
lotsa luv
Joan xxx

 

[maideniles]

I suppose I could go back to the GI doc who had written me off and tell her I've been diagnosed with crohn's. She's the one who did the scope that was 'normal'. But if I've already been on these meds, would she still even be able to find it with a pill cam? Sorry for so many questions, I just don't even know where to begin. :-\ I wondered why he was giving me diclofenac, but I'm guessing it's because of the arthralgias and such.

 

[David]

Continue with your Rheumy but I'd recommend going to a new GI for an additional opinion since this would be their specialty. Start fresh. That's where I'd begin

 

[maideniles]

Ok, I think that is what I'll do. Thanks for the advice.

 

[xJillx]

I agree with David. Start fresh with a new GI.

I am sorry about the UTI. Antibiotics can be tough on the gut, so you want want to consider a probiotic to balance things out. I'd ask your doctor what he suggests.