Anyone have brutal diarrhea when in remission?

[Turftech]

Im not certain Im in remission actually, but my bloodwork shows that my inflammation has been reduced. My GI has taken me through a few meds and Im currently almost off prednisone (of which ive had two runs at 40mg/day) and have now been on asatheripurine for a couple months because she decided the pred wasnt really working that well. Prednisone seemed to control my movements slightly, but did little for the inflammation. The Asatheripurine seems to have controlled the inflammation but when I use la toilette.. its just a pouring/spattering of liquid - annoying more than anything because I rarely feel any pain or discomfort anymore.

Anyway... Im curious if anyone else is in the position of not really feeling terrible anymore, but still have the unpleseant symptom of explosive watery diarrhea.

The weird thing is - and this has actually been the case throughout my Crohns experience (for the most part) - I only "go" once a day typically. sometimes once every two days.. but when I go... do I freaking go! Its like a war on the toilet. Often have to shower afterwards too, so thats nice.

 

[DJW]

I've never been "normal" since my diagnosis; even pre-ileostomy.
My be worth a discussion with your GI. My guess is that it also depends on the location of your disease.
I had large and small intestine involvement.

 

[Christi]

I agree with DJW. I still have symptoms every day. Do you have any other symptoms at the moment

 

[Turftech]

Most of my symptoms have been, I believe, due to the prednisone... Tired.. Weak, depressed, emotional as hell... All these have been decreasing as I've been decreasing prednisone. My main symptoms lately have just been a gurggling in my tummy and wicked explosive movements.

Oh... My joints are starting to pain.. And I've always had an issue with random blurriness in my right eye. I've only recently discovered it may be related to Crohns. Anyway.. It's been acting up lately too.

So only other symptoms are my joints and eye.

What symptoms do you guys and gals live with on a daily basis?

 

[ronroush7]

A big part of the time, I still have symptoms. Maybe not every day but a large part of the time .

 

[Christi]

It would be best to talk to your gi about joints and eyes so they can check it out. I have pain most of the time nausea , diarrhea, chills and tired all the time

 

[Turftech]

So Christi.. Is that while you are in a state of remission or are you always in a constant flare? I'm still relatively new to the disease and am still trying to figure it out.

If you are not in a flare currently, and have those symptoms.. Then what happens when you are in a flare?

I know I had lots of blood and pain, weakness when I was really bad.. Now I'm not so bad and as I said my blood shows my inflammation is down. I was also anemic as well but my blood shows that has gone too.

So my question is then... Should I just expect this current state to be the norm?

Is that what it is for everyone? Or are you all normal humans in the bathroom when you are in a state of remission?

 

[Christi]

Turftech im in a flare now my disease now spread to my cecum aswell. When i flare i am much worse i were in hosp in Dec. Also got a fluid build up. When im in a flare its much worse crippling pain tenderness, nasea,weak cant even walk down the stairs my legs are like jelly, fever, stomach that hurts when eating and they also found blood in my urine. I am consripted now. When im in remission although i still get symptoms through out are pain but its manageble, i get the chills allot, nausea now and again , diarrhea and im also tired. I do yoga they say its good so im trying to be as healthy as i can be.Some people in remision are symptom free. What i suggest keep track of your symptoms and diet. You will then see whats normal for you and whats not , if you still have bleeding please see your GI

 

[fuzzy butterfly]

Hi iv been in remision for 22mths . I have bad joint pain. Fatigue. The big D if i dont take questran n loperimide each day n sometimes get it when i take them. Also suffer brain fade, memory is bad, i also sort of go off with the faries as i call it.were i cant think what happened in the last few mins. i go to the loo on average 1/2 times a day relatively normal bms most of the time...

 

[IofNewt]

I used to have to go as much as 10 times a day. Imagine the pain.

I had a resection about 3 years ago and have had poop issues ever since. My doctor and I tried almost everything to try and slow it down and nothing worked.. at least not permanently. Recently... the past 6 months or so, I would say things have improved. I sometimes only go once per day, but generally it's 3 to 5 times a day on a bad day. I am not taking anything specifically for diarrhea anymore except imodium which only works about half the time anyway.

I don't know what.. if anything slowed it down, but I do know that I eat maybe one actual solid meal a day now due to a seemingly permanent loss of appetite. So maybe that is why the frequency has improved. This mode of eating has lost me quite a nice bit of weight, which I love, but I do worry that I can't go on like this long term.

I have a bad cold that's dragging on too long, so I am late on my remicade infusion also, which I am sure doesn't help matters.

 

[ronroush7]

I used to have to go as much as 10 times a day. Imagine the pain.

I had a resection about 3 years ago and have had poop issues ever since. My doctor and I tried almost everything to try and slow it down and nothing worked.. at least not permanently. Recently... the past 6 months or so, I would say things have improved. I sometimes only go once per day, but generally it's 3 to 5 times a day on a bad day. I am not taking anything specifically for diarrhea anymore except imodium which only works about half the time anyway.

I don't know what.. if anything slowed it down, but I do know that I eat maybe one actual solid meal a day now due to a seemingly permanent loss of appetite. So maybe that is why the frequency has improved. This mode of eating has lost me quite a nice bit of weight, which I love, but I do worry that I can't go on like this long term.

I have a bad cold that's dragging on too long, so I am late on my remicade infusion also, which I am sure doesn't help matters.

Sending support.

 

[Turftech]

Yeah.. Hope you straighten that out. I hope we all straighten our **** out. Literally and figuratively. I'm still just dumping water out of me every day. Wish I could try remicade but it's to expensive.

 

[DJW]

Yeah.. Hope you straighten that out. I hope we all straighten our **** out. Literally and figuratively. I'm still just dumping water out of me every day. Wish I could try remicade but it's to expensive.

If you cant afford medication, check the link in my signature higher up. We have the Trillium Drug Program in Ontario. It's in place specifically so people who need medication can have it, even if they can't afford it.

 

[Trysha]

The Ontario Trillium Drug Plan paid for my Remicade and your Doctor should help you with that.
The eye problem you have concerns me since it could be uveitis and needs prompt attention by an ophthalmologist,a medical eye doctor.
You should lose no time getting it checked out or go to ER if you have trouble getting an appointment
Your address places you close to St Michaels hospital where there is a big and very good GI department.
Feel better soon
Trysha

 

[ronroush7]

Yeah.. Hope you straighten that out. I hope we all straighten our **** out. Literally and figuratively. I'm still just dumping water out of me every day. Wish I could try remicade but it's to expensive.

Have you tried Remistart?

 

[Turftech]

Never heard of it
I'll look into it.

 

[DJW]

I don't believe Remistart is available in Ontario because we've got the Trillium Drug Program.

 

[ronroush7]

I am sorry.

 

[DJW]

I am sorry.

No worries Ron. :thumleft:

 

[Turftech]

I just applied for the trillium drug program but I've been told it's difficult to get if you aren't on welfare or something. Pardon my ignorance but that's just what I've been told. I'm hoping the people who told me are wrong.

 

[ronroush7]

I hope the best for you.

 

[DJW]

Hi.
I'm glad you applied. It is available to everyone. People on welfare and ODSP have other coverage.

The deductible is based on income.

 

[Lady Organic]

The objective GI has is to put you in full remission, this includes symptoms free (so no explosive Diarrhea) and normal blood works and normal endoscopy views/biopsies. It is quite typical for disease to crawl back when prednisone is decreased or stopped. Step now is to see if maintenance medication, AZA, can keep you healthy, in remission or not. Your doctor shall evaluate your response to AZA soon and if not satisfactory, may want to increase it, change or combined other medications with it. when is your next appointment? if your next appointment is far away, dont be shy to call the GI or nurse soon to report your symptoms, , especially that you have other symptoms (joints, eyes) that yes, could be extra-intestinal manifestations of crohn's. Good luck.

 

[Turftech]

Thanks Lady that e explains it well. I've had to bump up my prednisone to 40mg twice... Get into a relative state of normalcy, then ween off. I've been holding back telling my GI about my current condition because I've had enough of the prednisone. I've been on it straight for 6 months at a relatively heavy dose (I believe) and I'm concerned on going to get osteoporosis.
Is that an ungrounded concern? Are many people on prednisone regularly? How long are people on prednisone before they start having bone problems.

Not to mention the other less serious but still annoying side effects. Like the hair growth. I have very thin head of hair and a receding hairline to boot. Could the prednisone increase the amount of hair I have up there? NO! It increases it everywhere else so I look like a freaking balding sasquatch. And then.. The weight gain loss gain... My body looks like the penguin in batman, which doesn't help me at all because my face kinda resembles the penguin in batman! I'm surprised people aren't coming up to me and asking for an autograph now. Anyway, sorry for the rant.

 

[ronroush7]

I had the weight gain and osteopena. Best to you.

 

[Ian_H]

Never heard of it
I'll look into it.

Remistart is great. I started Remicade about 8 months ago. My hospital signed me up. They sent me a Remistrart Debit Card in the mail. When I get my infusions and my insurance company processes the visit, you or your healthcare provider sends your EOB to the remistart people and they add a sizable portion on the prepaid debit card. Use the card to apply to your medical bill!

Hope this helps!

 

[Lady Organic]

Hi again Turftech, I understand your concern about prednisone. It is indeed difficult to accept it and also all these drugs that are prescribed to us people with IBD. They all carry possible negative side effects. I have been through several rounds of prednisone too over the years. Unfortunately this is often part of our reality and we often need strong medication in order to be healthy again.
My best advice is to always be in contact and discussion with your GI. Do not hold any important information as this could lead to more distressfull situation regarding your intestine or overall health and this is far more to be feared than the side effects of pred. Prednisone is a ''rescue drug'' that is not intended to be used in the long run. Your GI does not plan to keep you on it for the long term. Since when are you on AZA? Do you know if you are at maximal dose? (As the GI increased your dose significantly already?) I would not be surprised that after a third round of prednisone in 6 months, your GI has another plan of action in mind in case of non-response to AZA. Contact them asap and express all your concerns. Your intestine will thank you