Newbie to the forum and Crohn's

[tonimacaroni]

Hey all

I was diagnosed with IBS when I was 15. I had a colonoscopy and endoscopy and the GI doc told my mom I had some spots that looked a little "crohn's-y" (what does that mean??) Anyway he put me on lots of meds including hyasciamine and amytriptaline (I know I spelled those wrong) Nothing worked, but diet changes helped. No dairy, no fresh veggies, nothing too greasy, and I stopped dropping weight so fast.

It was very much stress related and when the external emotional stress got better, so did I. I had a couple of re-lapses during college and going off dairy and meditation helped.

Then in 2010 at age 25 after I had my second baby (A surrogate prengancy) my symptoms started up again. Diarrhea was the biggest one, gas and cramping were occasional. I lost quite a bit of weight, but being overweight it wasn't a huge issue. I went from 365 lbs to 280 in about a year. I went of dairy and stayed away from veggies and alcohol and it was manageable, so I didn't go see a doctor (too expensive) Things eventually got almost normal for me, I figured my IBS was just a little worse now.

Then in early 2012, I developed a severe case of erythema nodosum. My legs were covered in nodes, I had constant fatigue, wandering joint pain, and swelling in my hands and feet. My dr. treated it as an idiopathic case with potassium, and it would go away, then come back a week later. I started research and discovered this could be tied to Crohn's or UC. When I got pregnant in June, I had to discontinue the potassium, but my pregnancy resolved both my IBS symptoms and the EN. I figured maybe it was a hormonal case of EN and my birth control had caused it...

Since I had my third baby (this one is all mine!) at age 27, I am now experiencing severe IBS symptoms. I am 11 weeks postpartum and having severe cramps, sometimes so bad I vomit. The gas is insane, and I can feel that my intestines are swollen. My erythema is coming back, I already have joint pain and 7 nodes. I finally have a GP who is willing to investigate and treat what's going on. I have a referral for a colonoscopy which I will have in the next month or so. I have no diarrhea yet, normal stools, but lots of pain and gas.

I find that limiting my trigger foods isn't working. The only days I have relief are the days I eat nothing at all. My GP just put me on prednisone to see if I can get this flare under control until my colonoscopy.

Just wondering if this sounds familiar to any of you? I'm terrified the answer will be inconclusive or I'll be told "IBS" again. Ugh.

 

[Cat-a-Tonic]

Hi Toni, welcome to the forum. I haven't had any children myself so I can't speak personally to this, but I've heard many other women on the forum say similar things about pregnancy. From what I've read, the pregnancy hormones will put some women into remission (or at least make them feel better), and then they feel a lot worse and flare up after giving birth. So yes, to answer your question, this sounds familiar - not to me personally, but generally speaking, definitely yes.

If I read your post right - you were just put on prednisone, and you're having a colonoscopy soon? This is troubling to me. Prednisone is kind of a wonder drug - it blitzes inflammation fast and masks symptoms. That is not good if you're going in for a c-scope though, as things may appear normal under the influence of the pred. What dosage of pred are you on, and how long are you on it for? You may want to ask your doc about either coming off the pred well before the scope, or postponing the scope. My doc feels like it's absolutely worthless to run any tests on me when I'm on something like pred. Yes, it sucks to have to suffer unmedicated before going in for a scope, but you don't want to do a scope for nothing or have to repeat it later. So I'd say definitely talk to your doc about this before the scope is scheduled.

 

[tonimacaroni]

I'm on 20 mg for 3 days then tapering off by 3 weeks. My first time on it so she is starting me low. My test isn't until June at the earliest... I can't afford it before then. Possibly July.... good to know about not being on pred before the test. Like with a few weeks or more?

 

[Cat-a-Tonic]

Yes, at least a few weeks. It sounds like you're on a pretty short taper, so I'm presuming this is mainly just a trial to see if you respond well to pred? Have you ever been on it before? Personally speaking, when I did a trial of prednisone, I felt great when I was on it - but when I came off of it, my symptoms came back with a vengeance. So that may happen, and it sucks, but it should mean that you're still inflamed (in which case, the scope should hopefully see something worthwhile).

I'm also presuming you're in the US as you mention not being able to afford the scope for a little while. Do you have insurance? Either way, you may want to check with your hospital and see if they offer any kind of financial aid or payment plans (they should offer both). I've gotten financial aid in the past - even if you don't meet the qualifications, apply anyway, as I was approved for it even though I did not meet the qualifications. And I'm on a payment plan now for my more recent tests & appointments, I'm paying $50 a month until it's paid off. It's really expensive to be sick in this country, but there are ways around going broke all at once to pay for it.

 

[tonimacaroni]

This is my first time on prednisone, and my doctor wanted to go gentle to see how I handled. I am notorious for getting all the nasty side effects of my meds. I am on day two at the 20 mg dose and already feeling much better. Only side effect so far seems to be energy which I worry might turn into insomnia tonight... But my gut is better and so is my joint pain.

I am in the US, I have insurance, but just had a baby 11 weeks ago, so lots of bills from that I'm trying to stay on top of. I have an HSA which helps, but even with my insurance the colonoscopy will be around $300 out of pocket... so gotta save that up on my HSA while still paying on my other bills. Being sick is NOT cheap.

 

[Maree.]

Hi Toni just wanted to say welcome, don't have a lot to add to what has already been said.

 

[Cat-a-Tonic]

Being sick is definitely not cheap! I totally feel for you there! My husband had kidney stones something like 2 years ago, and I *just* paid off the last installment on his medical bills for that. And I don't know if I'll ever get all my doctor bills paid off, I pay one and I rack up 2 more it seems!

Yes, pred will likely give you some insomnia. The insomnia should ease as you taper down the dose though. The fact that pred is making you feel better means that it's working, and it only works on inflammatory conditions, so at the very least I would say your trial is a success and that you can narrow down the potential diagnosis to something that is inflammatory. (In other words, not IBS.)

 

[tonimacaroni]

Thanks, that is good to know. I figured the almost instant relief was a sure sighn I'm dealing with inflammation. Also it's clearing up my extraintenstinal symptoms as well (Erythema nodosum and joint pain)

So far so good, I do worry about the long term side effects, and hope other meds will work for me besides the prednesone...

 

[dannysmom]

Hi and welcome. I am glad the pred is making you feel better. I, like Cat, hope it does not impact the colonoscopy results. Do make sure to tell the GI about the pred.

Enjoy your baby!! Congrats.

 

[Cat-a-Tonic]

Toni, I wouldn't worry about the long-term side effects at this point. My understanding is that you have to be on pred for many months or even years to get the worse side effects. So try not to worry, 3 weeks of pred shouldn't do anything as far as lasting side effects. That's a really short run and you're on a low dose, so you should be fine.

I'm presuming your doctor knows about the EN and the joint pains? Did they do any x-rays on your joints to see if you might have arthritis? It's better to catch arthritis early - they caught mine early (I have it in both hips although for a couple years I just had it in the right hip). I was able to treat my arthritis for quite awhile with just exercise, although more recently it's gotten worse. They did send me to physical therapy for my arthritis, but I find that any type of exercise except for jogging (too high impact I guess) seems to really help my hips. So if you want to skip the x-rays and PT, you may just want to try a bit of gentle exercise and see if it helps any.

 

[tonimacaroni]

So I finished my prednesone taper less than a week ago, and my symptoms are coming back already. Gut first, but skin and joint issues as well. Canker sores in my mouth have begun again, and the fatigue and malaise.

I had hoped I'd get a little more time before things started up again. Damn.

 

[Cat-a-Tonic]

Unfortunately that's what happened to me too when I stopped pred, everything came back right away - literally the next day for me! It sucks, I'm sorry to hear that everything's coming back already - but the good news is, hopefully this means something will be found on your colonoscopy. Do you have it scheduled yet? I wish you luck with it, and I hope your symptoms are at least manageable in the meantime.

 

[tonimacaroni]

I don't have it schedule yet. I'm at a loss of how to do it really. I've never had to just, schedule a procedure. Do I go through the hospital or the GI doc's office?

 

[steffers]

Two surrogate pregnancies before the age of 27...GO YOU! What a wonderful gift to give someone And congrats on the little one you get to keep. xx

 

[dannysmom]

We schedule the colonoscopies through the GI office.
I am glad the pred helped and sorry your symptoms came back with the taper. This should help the doctors understand how to treat you.
Good luck and keep us posted.

 

[Cat-a-Tonic]

For scheduling tests - usually my GI will put in the order for a test, and then the hospital will call me to schedule it. If your doctor has already put in the referral for the scope, then you might want to call the gastro dept at the hospital and see if they have the order in their system. Otherwise, like Dannysmom said, call your GI. Good luck and let us know if you have questions about the test! As you'll come to find, the prep is the worst part, and the actual scope itself is a breeze.

 

[tonimacaroni]

For scheduling tests - usually my GI will put in the order for a test, and then the hospital will call me to schedule it. If your doctor has already put in the referral for the scope, then you might want to call the gastro dept at the hospital and see if they have the order in their system. Otherwise, like Dannysmom said, call your GI. Good luck and let us know if you have questions about the test! As you'll come to find, the prep is the worst part, and the actual scope itself is a breeze.

She gave me the referral hard copy, like a prescription. And my clinic isn't affiliated with a particular hospital. So I'm figuring I can call the GI at my local insured hospital and schedule it through them? (I'm still working with my GP at this point)

 

[tonimacaroni]

Two surrogate pregnancies before the age of 27...GO YOU! What a wonderful gift to give someone And congrats on the little one you get to keep. xx

Aw thanks, actually just the middle one was a surrogate... The first and last are mine (with 6 years between them!)