Don't know what's going on...

[Mayflower537]

I don't know if I am officially dxed as "IBS" but that's how my doc is proceeding. He keeps telling me that I may develop Crohns later (think he is trying to cover his you-know-what)

Typically, over the last several years, I will have very acute episodes of cramping and diarrhea that typically last 3-4 hours, then get a respite for a few weeks until it happens again.

Starting with last Tuesday (coincidentally the morning of my GI appt) I have had cramping and either loose bowels, diarrhea or really gross looking white flecked stools (mucous?) every morning with the sole exception of the day after I downed 2 immodium b/c I had to go somewhere and needed this crap to stop. It has been like clockwork - about 2 hours after I wake up, it starts until I have anywhere from 1-3 BMs at which point the cramping subsides and I can go about my business as usual. I haven't changed anything supplement/diet-wise, and I'm getting ready to start a course of Xifaxan as soon as I can get my butt to the pharmacy.

This is not typical for me. I am supposed to see my doc again in October and am supposed to keep track of my symptoms to see how they compare (pre and post-Xifaxan).

Is mucous worrisome at all? I am pretty positive that's what it is, but I am not going to examine my BMs unless absolutely necessary (i.e. doc's orders. ) The mucous stuff started last friday. It seems to be the first BM of the morning that is all whitish looking. Not to be gross but it's all intermingled. My stool is not completely white.

Last night around dinner time, I also started to have, what I call, one of my "prickly" stomachaches. There is prickly pain all over my abdomen (mainly around my belly-button), and if I slouch it's more uncomfortable than when I make sure I'm all streched out in my mid-section. Maybe gas? But my abdomen is actually very tender in the LRQ - Like if I do something where I have to raise my right leg I actually say "ouch." I almost thought appendicitis, but it's pretty much gone this morning. And I tried the "press and release" test and the release didn't hurt as much as the press, so I figured it wasn't that. This is the third time I've had this SAME stomachache since March, when I started paying attention to everything with a little more vigilance.

By way of background I have had a c-scope (nothing), pillcam (nothing), EGD (esophagitis and gastritis). The Prometheus test predicted Crohns, for whatever that's worth.

I am actually sorry for posting, as Im always worried since I am not a Crohnie that I am wasting everyone's time, at least the ones who reply. :redface:

Thanks,
May

 

[Dallies]

I don't know if I am officially dxed as "IBS".

I am actually sorry for posting, as Im always worried since I am not a Crohnie that I am wasting everyone's time, at least the ones who reply. :redface:

Thanks,
May

Hello May and welcome. what you are going through is a very worrying time and you will find great support here whatever the outcome. I don't have Crohn's Disease, IBD or UC. My daughter does.

I came here for support and recieved a warm welcome. I wish I had found this when we didn't know what what wrong with Meg before she had a diagnosis.

I hadn't even heard of Crohn's disease and my only reference to the word was "old cronie" which means old people:blush:

Consequently I googled it which was the worse thing I could have done. It terrified me. Meg didn't have any of the classic symptons, the main one being diaarhea or bowel movement problems at all. Only anemia, and continuing tummy ache after an appendicectomy. Vomiting began and luckily a quick diagnosis of CD.

Please let us know how you get on and you are certainly NOT wasting anyones time.

 

[Cat-a-Tonic]

Hey May, sorry to hear you're not doing so well. As you know, I'm in a similar situation to yours - have had many tests but all came back normal, no evidence of IBD or inflammation and still no real diagnosis. I had tried prednisone and it worked for me, so I knew I wasn't crazy. When I told my doc about how the pred worked, he had a thought that I might have Addison's disease. It has similar symptoms to IBD (nausea, vomiting, diarrhea, abdominal pain, unintentional weight loss, fatigue, low blood pressure, electrolyte imbalances). It's fairly rare so not a lot of doctors think to test for it. If you aren't satisfied with the IBS diagnosis (and I don't think many of us would be!), I would call your doc's office and see if it could be anything else besides IBS or IBD. When you said you thought maybe appendicitis, do mention that to your doctor because someone in another thread said that a lot of Addison's cases are mistakenly first diagnosed as appendicitis beccause of the LRQ pain. Sorry if I'm rambling too much about this, I just had another test about an hour ago to check for Addison's, and I'm anxiously awaiting my results! Good luck to you and I hope the meds you are taking work for you.

 

[silver]

You're more than welcome here! My doctor said that most Crohns patients have elements of IBS as well.

After I was diagnosed I was fine for a year or so, then started to have severe pains again, I went to the docs but they said I was imagining it as there was nothing wrong. So for me IBS came hand in hand and it is just as debilitating as Crohns in it's own way.

Whether you do or don't get diagnosed with Crohns/Colitis we'll be here for support, whhich is very important when you're having a bad day, whatever the condition :hug:

 

[Mayflower537]

Thanks, everyone. I've been here for a while, actually, and was pretty dependent on everyone when I was going through the rounds of tests. Everyone here is so supportive and nice! Maybe I should have posted in a different area.

I actually just started the Xifaxan this morning, so I guess I'll see how that goes. I've never gotten an Rx before that didn't come with a novel of patient information. This one said "no known side effects". Wow!! :lol2:

 

[Crohn's 35]

Hi May, I read up on the Xifanan and was what I wanted to get here but not available in Canada. Research shows that using that and VSL#3 is supposed to work wonders. I am on VSL but only have flagyl. Good luck with it. Keep us posted!

 

[Mayflower537]

Hi May, I read up on the Xifanan and was what I wanted to get here but not available in Canada. Research shows that using that and VSL#3 is supposed to work wonders. I am on VSL but only have flagyl. Good luck with it. Keep us posted!

I am sorry that it is not available for you, Pen. I know you've kindof exhausted all available treatments, right? I wish I could send mine to you, as you definitely need it worse than I, but I'm sure that's illegal. :whistleinnocently:

I am currently taking Align probiotics but I don't know that it's doing much of anything. The first four weeks I thought it was a miracle b/c I had no problems, but then I've had the same stuff and more of it, lately. I don't know that it's due to the Align, per se, but I don't see that it's helping. When I run out, I might give VSL a try. Any tips?

 

[DustyKat]

I am actually sorry for posting, as Im always worried since I am not a Crohnie that I am wasting everyone's time, at least the ones who reply.

Awwwww, May don't ever think that. You've got enough on your plate without worrying about if you are wasting our time, 'cause you're NOT!

I hope things turn around for you soon.

:goodluck: and :getwell:

Take care,
Dusty

 

[Silvermoon]

^^^^^ DITTO!!!

Stomach pain is stomach pain...doesn't matter if it's Crohn's or not.... we can definitely sympathize....

I don't see where anyone responded to your question of mucous, so.....

It is not "worrisome" per se, but no, it's not a "normal" thing for a "normal" body to have....

However, because your bowels think there is something wrong with them...some kind of bacteria, infection, whatever.... they are going to shed mucous. Mucous is found naturally along the lining of the intestine to kind of help protect it. When we get a "bug" or whatever, the intestine starts to shed this mucous to try and get rid of whatever is bothering it....

So, in kind of a bassackwards answer...it IS "normal" for someone with IBS/IBD to have a bit of mucous in their poop, as the intestine is trying to get rid of whatever it thinks is making it not work properly (sorry if I have made this sound "simple" but I like to explain things in a way that makes sense to me...so that's how I explain it to others... :redface: ). Not normal, but not real worrisome either... just telling you that you ARE right, something IS going on with your tummy, and keep at the doc's until they find out and help you!

I hope this helps a bit...

 

[Mayflower537]

Thanks everyone. Y'all are so sweet!

And thanks, Silvermoon, for the mucous explanation. That makes perfect sense. I appreciate the simplicity - sometimes I get lost in medical terminology.

Well, I have pretty high hopes for the Xifaxan. If it works, then, it would clearly be a bacterial issue in my case, right?

So then if antibiotics like Xifaxan work for some Crohnies, then, does that mean some people have an underlying bacterial cause for their IBD? Or that SIBO is contributing to the symptoms? What a lovely puzzle.

 

[MapleLeafGirl]

Ditto what Silver said about the mucous. I get it all the time (except for now because I'm on prednisone and everything is working tickedy-boo ) I don't really worry about it but it does let me know that things aren't great in there.

 

[Crohn's 35]

I am sorry that it is not available for you, Pen. I know you've kindof exhausted all available treatments, right? I wish I could send mine to you, as you definitely need it worse than I, but I'm sure that's illegal. :whistleinnocently:

I am currently taking Align probiotics but I don't know that it's doing much of anything. The first four weeks I thought it was a miracle b/c I had no problems, but then I've had the same stuff and more of it, lately. I don't know that it's due to the Align, per se, but I don't see that it's helping. When I run out, I might give VSL a try. Any tips?

Gotta warn ya though VSL is not cheap, but I did hear from some on here that if you get the double dose amt, you can get it by prescription and if you have insurance you dont pay for it. But dont quote me LOL. You can order it over night, some have it at pharmacies. I use the plain one and drink it with watered down cranberry juice. It has 450 active probiotic critters lol. I take two a day, one at night and one in the morning. Takes about 3 weeks for the flora to kick in. It has to be refridgerated. Good luck if you try it out, I am curious with the combo and see how you feel. Need any more info just pm me!:ysmile:

 

[Dexky]

However, because your bowels think there is something wrong with them...some kind of bacteria, infection, whatever.... they are going to shed mucous. Mucous is found naturally along the lining of the intestine to kind of help protect it. When we get a "bug" or whatever, the intestine starts to shed this mucous to try and get rid of whatever is bothering it....

Hello May!! I just want to say that I never cease to be amazed by the wisdom of our nurses on here. And Silver, thanks for saying it so YOU can understand!!

 

[Regular Joe]

Hi May,

Glad you could join us.

For me, mucous in my bowel movement always means trouble. Whenever I flare, mucous appears. Mucous is pretty consistently there, even if the movements are watery, soft, or "normal". It may be only once a day that it shows up, like you. But it's always a symptom of a flare for me.

If you don't yet have a specialist, a GI doctor, then I'd suggest finding a GI with Crohn's disease or IBD experience. That may help you with a diagnosis and better treatment.

Welcome,
Joseph

 

[Mayflower537]

Hi May,

Glad you could join us.

For me, mucous in my bowel movement always means trouble. Whenever I flare, mucous appears. Mucous is pretty consistently there, even if the movements are watery, soft, or "normal". It may be only once a day that it shows up, like you. But it's always a symptom of a flare for me.

If you don't yet have a specialist, a GI doctor, then I'd suggest finding a GI with Crohn's disease or IBD experience. That may help you with a diagnosis and better treatment.

Welcome,
Joseph

Hey, Joseph,

Thanks for the welcome. I've actually been hanging out awhile on here since the results of my blood test came b/c I was like "what the heck is crohns?" I've posted sporadically, but most of my posts were a couple of months ago when I was having all that fun testing! Things weren't normal of late, so I was just venting, I guess?

I have a GI and I like him. From what I can tell, he's a good, conscientious doc.

I don't know that I have an actual diagnosis, but he told me he just couldn't find Crohn's anywhere after scopes up, down, and all through, so he's just proceeding like IBS is what's going on. If he had done less, I'd be unsatisfied, but he's checked out every weird thing he found.

It was just strange for me to have so many consecutive days of gut issues. Like I said, I usually have a nice long respite in between my episodes.

Interesting about your mucous...it echoes basically what others said. Something's not quite right up in there... Maybe this Xifaxan will sort me out for awhile.

I almost hope it doesn't work. It's bloody expensive and if I weren't getting reimbursed at this point, I couldn't afford it.

 

[Mayflower537]

Awwwww, May don't ever think that. You've got enough on your plate without worrying about if you are wasting our time, 'cause you're NOT!

I hope things turn around for you soon.

:goodluck: and :getwell:

Take care,
Dusty

Thanks, Dusty. Very sweet of all of you.

 

[Mayflower537]

This is for Pen. She asked me to blog my Xifaxan journey. So here goes.

I started the Xifaxan last Thursday, July 22. I had had either cramps and a lovely combo of diarrhea/loose bowels/mucousy stool for 8 of the 9 days preceeding my starting the course of antibiotics. That was very unusual for me, and why I posted this thread to begin with. I would have mentioned it to my GI, but I saw him the Tuesday that it started. Of course.

So the first day I had these problems as well, but I actually didn't go get the meds until after that was over. I am taking three 550 mg pills a day. I just take them with breakfast, lunch, and dinner.

Second day, I still had cramping and loose, mucousy stools in the morning.

Third day I had no BM at all and no cramping either. Took the kids to the beach. We didn't get any jellyfish stings, but 30 not-so-lucky ones at the same beach did that day.

Fourth day, Sunday, July 25, I had one mucousy BM in the morning but it wasn't loose. I didn't have cramps, just "oh i gotta go" feeling down there.

Fifth day, Monday, I had one BM that was kindof like constipation type. Like in pellets. Gross. In the afternoon, I had very slight cramping and thought I had to go but nothing happened.

Today, day 6, Tuesday, I haven't gone yet so far. Thought I might have to this morning but nothing happened.

I am taking Align probiotics, but once I run out, may switch to VSL. I don't know if I can afford the sachets, though. They are expensive! Maybe the capsules. We will see...I still have 12 weeks worth of Align.

My only other symptoms are intermittant lower back pain (like down in my butt back pain?) and this rash which has been itching me for over a week now (it started before I started the Xifaxan). At first I thought it was from getting too much sun but now I have a bonafide rash on my back, a little on my stomach and on my neck. Don't know what that's about. Itches like heck. Trying to get to a dermatologist anyway, as I've got a few things else I'd like checked out.

 

[Astra]

Hiya May

so sorry I've missed this thread, been AWOL for a bit!
hope you're ok hun?
can't help with this one I'm afraid, never tried VSL.
take care and get your rash checked to be on the safe side
xxxx

 

[Mayflower537]

Yeah, I have a derm appt. next Tuesday. Thanks, Joan. I know you're having your own issues. I hope you feel better soon.

 

[Mayflower537]

Well, I had nothing to report over the last few days so I didn't. All was quiet on pretty much every front. Tomorrow is my last day of popping Xifaxan. Today was not a good day, however. I started my period last night, so I don't know how much that has to do with anything. This morning, I had the cramps and multiple bowel movements, with mucous and each one more loose than before. Then again after lunch with the cramping and some D.
I had my dermatologist appointment today. I like her. She was actually the PA but very thorough. I mentioned I thought my hair was getting thinner up top and she probed me a bit - about stress, etc. I told her about the GI testing and all that. She asked me if I had fatigue (yes), joint pain (my way down lower back - yes). So she ordered a bunch of blood tests. Thyroid tests, hepatitis panel, ferritin levels, total blood count (i think that's right) and i think there was more. Wasn't expecting that from a dermatologist's physician's assistant!
I have dermatitis on my eyelids and she gave me a sample of a steroid cream to use for a couple of nights and then slather Aquaphor lotion on there every night. My rash is pretty much gone (of course) but I told her about these inexplicably itchy areas on the insides of my elbows and up around my armpits and she told me to make sure I moisturize after getting out of the shower. There is nothing to see, so she just chalked it up to dry skin. I mentioned it to my GI in march or april but he wasn't worried b/c it wasn't on my elbows or behind my knees. I guess that's a common area for Crohnie rashes.
So that's that. I hope the hiccup today was menses related although I dont' usually have problems like that. I actually tend to go toward constipation during that time of the month.

 

[Astra]

Hiya May

sorry you're still feeling rotten! I empathise, I really do!
remember my headaches? neuralgia? joint pain? etc
I recommend an osteopath!
He has cracked my back and neck! I had a very deep massage all over my back too!
I've been again today, and he has said my movements and muscle tone has greatly improved! I have no joint pains! Osteopaths deal with digestive issues too! IBS mainly.
I'm going again next Tuesday!
hope you're ok hun?
xxxxx

 

[Mayflower537]

I think it was just a bad day. Thanks for the concern, tho.
Is an osteopath same as a chiropracter?

 

[Astra]

I think they're quite similar but different! if that makes sense!
chiropractors deal with spinal issues, skeletal and nervous systems
osteopaths with deep muscle tissue, ligaments and tendons
both use manipulation techniques and mobilisation

glad you're feeling a bit better today
xxxxx