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Looks like hubby is heading into a flare :-/

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Posted 12/21/2010 3:22 PM (GMT 0)
For the past several weeks, my husband said he's had some extra gas than normal. I just put it down to eating something gassy, like beans, which he does like a lot. Well, over the past 3 days, his farts have gotten increasingly malodorous, and he says he's got a constant ache in his belly (not pain, but discomfort), like he needs to pass gas. Also, his stool quality has gotten worse. He is still only going twice a day, but the stool is less well formed. Also, about 5 weeks ago, when doing some blood tests for other reasons, his white blood cell count was marginally high (which could mean inflammation). For the moment, I have him eating just potato/rice and chicken, and a bagel and banana.

It has been exactly 4 weeks since his last remicade infusion. He also has a history of c-diff. So, I called his GI's office today, and asked for an appt ASAP to see if we can get his stool tested, and some blood work done. I'm worried that this is the holiday weekend, and we won't get any answers soon, and he'll get progressively worse. I sure hope his doc can help him quickly and not let him get as bad as he did 3 years ago.

I find myself hoping that it is c-diff and not a crohn's flare up. With C-diff, take some antibiotics, and in a few months, he'll climb out of that well. With Crohn's, he's already on remicade, and he's got osteopenia from the steroids. What's the next step? Is this a sign remicade is not working?

Gosh, so much worry in my head right now. I know you probably don't have any answers for me, but I just needed to tell someone. I hope things will get better and not worse for him. If you have any pearls of wisdom, I sure will appreciate it.

Thanks,
PV
Posted 12/21/2010 3:49 PM (GMT 0)
Don't get yourself all worked up yet. I think it sounds like a small intestine bacterial overgrowth. I got the same symptoms as he has. I was really gassy (and stinky), especially after I ate. Then I would bloat and my stomach would ache from the bloating. My stools were really soft but kinda sticky too. A quick 10 day course of Cipro knocked it right out of me. I also changed to a better probiotic. Worked like a charm! Talk to your doc about this. My GI didn't have me do any tests, he just went off my symptoms and he was right. I have had this again, and the next time I recognized exactly what it was and started treatment again. Good luck!
Posted 12/21/2010 4:16 PM (GMT 0)
well pv, I don't have any overgrowth, and I get really gassey when things are flareing, I'm on rem as well, and when it starts to wear off I can tell, but i would rather be gassey than be obstructed, that is a sign for me, when passing gas at least he is not blocked, as stated easrlier on another gas post, I eat papayas and that takes odor away, not the gas but the smell.

Posted 12/21/2010 6:20 PM (GMT 0)
Thank you so much for replying. Spoke to his gi today - he suspects some kind of infection. He ordered some blood work (CBC sed Crp) and also a stool test for ova parasites,cdiff and also just a stool culture. He told him to be on a liquid diet today and to start flagyl. We have an appt with him tomorrow, I'll keep you posted.

Thanks so much!
Posted 12/21/2010 6:53 PM (GMT 0)
Flagyl will knock the bacterial overgrowth out of him also. So should it be that, just wanted to let you know that it will work too. Hugs!
Posted 12/21/2010 7:39 PM (GMT 0)
Thanks so much Gail! I sure hope this does the trick. I just got him all set up - he has ensure, some broth, pedialyte, and I'll be making some juice box jello, and picked up his flagyl for him. He seems to be feeling better today than yesterday . . .

It's weird how it seems to vary day to day how he's feeling - over the past 3 weeks, he's been fine one day, fatigued the next, gassy and tired one day, completely normal another. This is such a trying disease to have where everything has the same symptoms - sibo, crohn's, c-diff . . . just frustrating.

I think I'm slowly getting used to this disease. I didn't have a complete panic like I normally do when my hubby starts feeling bad. I think my regimen of mental conditioning, and also the anti-anxiety meds are keeping me in check. Thank goodness for that! Last thing my hubby needs is me running around mad! :-)

Thanks so much for all of your support. I didn't know that bit about papayas. I'll see if I can find any in pill form (I can't stand the smell of papayas, and neither can my hubby).

I'll let you know what the results are as we hear them.

PV
Posted 12/21/2010 7:57 PM (GMT 0)
I wish him the best of luck. I tend to get more gassy as my flare develops, evenings being the worst.
Ticks me off, because if anyone were to ask us out, I would have to decline, because it's so uncomfortable.
Christmas day is at my sisters, so at least I can change into my pj's and no one will care:)
Posted 12/21/2010 8:47 PM (GMT 0)
pv, does your hubby work? because it is really difficult to work at a job in his condition, I can but only on my terms, I'm on permanent disability, more from post op, than from current, 8ft of small bowel that has been removed, is difficult to be normal, but mind you I'm 60 so not alot of years left for working anyway, we have home based business, but when I'm in rough shape it's evan difficult to do that, at least I'm home and I feel safe, we need money so I still am very nervous about being able to do work when I have it, right now I'm supposed to open up new gallery by mid jan. and I need to because we need to make $ to pay for our home, still have a mortgage, bummer.

Posted 12/21/2010 9:04 PM (GMT 0)
My husband does work. He works in the IT department of a Fortune 100 company. I also work for the same company. They have been very kind to us and very considerate of his health issues (and my difficulty dealing with his health issues). If he's feeling poorly, he can usually work from home - vpn into work, and keep in touch with people via e-mail and instant messaging. I get to take a day here and there to keep some mental sanity, and I too can work from home as needed. We try very hard not to abuse this facility, since we really don't want it to go away.

But (fingers crossed), our managers have been very very kind to us. One of the managers' wife has Lupus, so he knows what it is like to deal with a chronic illness. In fact, my husband and are today working from home, between lab work, and taking naps (had a bad night last night).

I really am very grateful to have a job that affords this flexibility.

PV
Posted 12/21/2010 9:24 PM (GMT 0)
yes feel very lucky. I'm on my own, my wife and I are self employed, ins. is problematic, it is no fun being sick and still have mortgage, believe me it is scarry. sickening scarry,

Posted 12/21/2010 9:29 PM (GMT 0)
I think most of us who are able to reach remission, like PV's hubby and I have, are still able to work. I too am blessed with a job that understands and I am not one to keep things secret, so have been equally blessed with great bosses. Artist guy has had this disease alot longer (but only a few years more than I), and I can see its time for him to get on SSDI. I although in remission right now, see myself as possibly not lasting many years more, but while I can I will continue to work. I think if able, working helps to take our minds a little off of the CD sometimes. But of course, with this disease things can change in a heartbeat. I sure hope its something as simple as a SIBO and he gets feeling better really soon. Hugs!
Posted 12/22/2010 12:20 AM (GMT 0)
Picked up script of flagyl 500 mgs (3 times daily for 14 days for my hubby), and he started this afternoon. And he's only having ensure and some chicken broth to eat. He says he's feeling worse - he thinks it's the flagyl. He says his tummy feels more tender and he has _more_ gas.

Is that normal? If anyone has some experience with flagyl I'd appreciate it. Once when they put my hubby on flagyl (before they knew he had crohn's and c-diff), he had what we thought was severe cramping because of the flagyl, but the doc said it was probably because of how severe the inflammation was. He tried flagyl again once after that, when he was pretty healthy, and didn't really have any bad side effects. But of course I'm nervous that flagyl is going to make him worse rather than better.

Anyway, can any of you share your experiences with flagyl or other antibiotics for crohn's disease/sibo? How quickly do you notice an improvement? Does the antibiotic itself give you runs and gas? How do you tell if you're getting better?

Thanks for any input.

PV
Posted 12/22/2010 2:27 PM (GMT 0)
Honestly Flagyl makes me really sick. Makes me really pukey and everything tastes metallic. The first SIBO I had I took Cipro for 10 days. Had no issues and was feeling better in a couple of days. Got another SIBO and they tried Cipro again, but this time it too made me sick. Next time I tried Xifaxin and it worked well, tried it again later and made me really sick too.

There are multiple antibiotics you can take for SIBO. Flagyl, Cipro, Xifaxan, Tetracycline to name a few. Sometimes one might make you sick and you can try another that might work better. What really helped me the most on the last one I had was that I started taking a stronger probiotic at the same time I started a new antibiotic. I haven't had anymore SIBO since. Just be sure to take the probiotics at least 2 hours after the antibiotics. Hugs!
Posted 12/22/2010 3:44 PM (GMT 0)
Thanks Gail. He survived the night - he's still having some really bad smelling gas, and lots of it. But he thinks it's because of the ensure - he says anything sugary normally gives him gas. But on a liquid diet, if you want calories, pretty much everything has sugar - jello, ensure. He can have just broth - but that's hardly any calories, and he doesn't want to lose much weight, so he wants to stick to the ensure. But other than the gas, he seems ok. His stool has gotten worse on the flagyl - very small quantity, and like soft small gravel pebbles. But I guess that's to be expected on most antibiotics, and also, he's not really had anything to eat other than ensure for about 24 hours.

We see the doc today. I think today we'll find out if he has any inflammation going on (CRP, SED, white blood cell count) - if he does, then, he's probably having either an infection or inflammation, as I don't think SIBO causes any of that to go up. I think the doc put him on flagyl because of his history with c-diff, and also because it can help SIBO. I'm keeping my fingers crossed and hoping all his blood work turns out normal. I think we wait one more day for his stool tests to come back - and if he's clear of c-diff, and his blood work shows no inflammation, then, the doc will be willing to change and try a different antibiotic.

He is already been taking 2 sachets of vsl3 daily along with scd yogurt. He's been doing this for years, without any issues. I wonder if we need to change that. Right now, he's eating yogurt with vsl about 2.5 hours after taking flagyl. Do you think we need to re-address his probiotics?

Thanks so much for being so supportive. I really appreciate it! I hope you are feeling good today.
((Hugs))
PV
Posted 12/22/2010 5:58 PM (GMT 0)
I think his probiotics sound good. I have heard the SCD yoghurt has LOTS of good stuff in it, along with the VSL3 he should be fine there. I had to go on a stronger probiotic as the one I was using only had like 5 billion in it, and you are suppose to have at least 10 billion.

Keeping my fingers crossed its just something easy to treat like SIBO and no inflammation going on. Hugs!
Posted 12/22/2010 6:48 PM (GMT 0)
Well, the doc visit was a bust. They had none of the lab results in, so the doctor didn't really have much to go on. He did push the abdomen in etc. and said all the stomach noises, etc sound good, and that he feels this is either a mild infection or maybe ibs. He said people can develop food allergies over time, and maybe he's now allergic to lactose. He suggested cutting out all lactose. He also ordered a celiac test. In the meantime, he asked my hubby to stop the flagyl since it was making him feel worse. Given that there's no bleeding, and no mucous and not diarrhea, he felt it is better to wait for the test results.

So, now we just wait for the test results, and see what turns up. In the meantime, I'll cut out all the lactose in his food, and serve him a bland chicken and rice/noodles for now. He'll call us once the test results are in, hopefully thursday, or at the latest on Monday I think.

Thanks for giving me so much support. You are totally awesome! ((Hugs))

PV
Posted 12/22/2010 7:01 PM (GMT 0)
PV, I don't think you can be "allergic" to lactose. You can be allergic to the proteins in milk (casein) and you can be lactose intolerant.

Lactose intolerant means that you aren't producing enough lactase, the enzyme we need to digest lactose. I think this is pretty common in people with terminal ileum involvement in their Crohn's. You can get lactase tablets at any drugstore or grocery and he can take them before a meal that includes dairy. This should resolve any problem with lactose.

An allergy to casein is something else and I think the only way to deal with that is to avoid casein, which is in a lot of foods other than dairy products. Of course, many people just reduce dairy and find relief. Other people have found that they can tolerate goat's milk but not cow's milk!
Posted 12/22/2010 7:17 PM (GMT 0)
Kasbern is right and she describes me to a tee. I can eat some ice cream and some cheeses, but if I drink a glass of milk or even lactose free milk I get diarrhea, gassy and stomach pain.

But...I think it still might be a good idea to limit his lactose for a bit and see if he feels any better. I would also do as you are and have him stay on a lighter easier to digest diet until he feels better. I get so frustrated when I go into the docs and all my labs are perfect and yet I feel so rotten. I know you didn't get his results back yet, but also just didn't want you to be surprised if they are normal.

To be honest I don't think much ever shows in my labs, as I can be really ill with good labs. Uggghhh!! Usually its the more invasive tests that show me whats really going on. Hugs!
Posted 12/25/2010 4:02 AM (GMT 0)
Hi. Just wanted to give you an update. Since stopping the flagyl, my hubby actually seems a little better. Of course, he's been on a very restricted diet - just chicken, rice, noodles, broth, grape jello, and plain bagel, and scd yogurt (now made with lactaid mild), and vsl3. He was eating more variety before he started feeling poorly, so I don't know if it is the diet that is helping or if it was the day of flagyl.

Either way, he has some gas (not as much as before), his stool is not quite well formed (not unexpected having just finished a day of flagyl), but the gas is not smelly, and he stool quality seems to be improving gradually, and his tummy discomfort is diminished.

No test results back yet . . . not surprising given Christmas is tomorrow. I'm just glad to have a hubby who isn't hurting over Christmas. That is the best christmas present we could be given, and I'm grateful for it. We decided to just spend a quiet day at home, watching movies (we're currently watching Knight and Day - which so far has been pretty entertaining, btw).

Tomorrow, we're just going to take it easy - I shelved all my cooking plans, since my hubby can't eat most of what I cook. So he's going to eat his limited food, and I'm going to binge on Chicken Tikka Masala, and read a book, and snuggle by a fire.

Merry Christmas to all! I hope everyone has a fun, peaceful and healthy holiday, and I hope the new year keeps you in good health and happiness and prosperity.

PV
Posted 12/26/2010 8:26 PM (GMT 0)
Just an update. Hubby is holding steady. Still has a lot of gas, but the smell has reduced a little. Still has small soft bowel movements once or twice a day. Because the gas is so uncomfortable he has trouble sleeping at night (and therefore so do I). So, we're a little low on sleep. But other than that all is well. It seems later in the evening, his gas gets a lot worse - maybe because he is laying down? Also, he's lost some weight (about 5 lbs), but I guess that's to be expected, given he's not eating as much as he normally does, and may be having problems absorbing nutrients.

I think the lack of sleep is affecting him. So, I told him to give gas-x a try today. He had some after lunch, and he seems more comfortable. I don't think gas-x is contraindicated for people with crohn's, and it isn't absorbed systemically, and it doesn't prevent gas, it just makes the gas easier to pass, thereby relieving symptoms, so I think it should be ok. I just want him to sleep well at night.

If any of you have information about gas-x (or why we shouldn't be taking it), please let me know. I don't want to inadvertently hurt my hubby.

I hope you all had a wonderful Christmas! We had a quiet one, and I am still grateful that I didn't spend it in the ER.

Thanks,
PV
Posted 12/26/2010 8:52 PM (GMT 0)
I was put on 500 mg of Flagyl 3 times a day by an ER doctor (he told me I had diverticulitis - which I did not). It was such a high dosage that I developed Thrush. I have had thrush since September and it has not gone away. The lack of taste is a real downer especially for someone that is supposed to be gaining weight. Hope things look up for your husband and you. It is great how supportive you are. My wife is just as supportive. Without her I don't know where I would be. Especially since I am constantly on drugs and don't seem to be "with it" very much.

 

Posted 12/27/2010 12:29 AM (GMT 0)
I take gas-x every morning, and it really helps "me" alot. Its okay for us to use. Hugs!
Posted 12/27/2010 12:58 AM (GMT 0)
Thanks folks! He's been taking 1 gas-x after each meal, and seems to be doing fine today. The gas still smells, but it comes out less frequently, and he doesn't feel the bloating pressure. And his energy is better today as he was able to take a nap in the afternoon.

My hubby did mention the coating on his tongue is kinda funny, but it seems to have passed. In any case, we aren't going to be doing anything until we get the test results back, hopefully at least by Tuesday. And after that, if it shows nothing, maybe we'll get him tested for candida and/or sibo.

I've been really worried that his remicade is not working well anymore - I guess we'll find out when we get the lab results; I am however, encouraged by the fact that he doesn't seem to be getting any worse.

Hugs to you to Gail! I hope you and your hubby had a wonderful Christmas!

PV
Posted 12/27/2010 10:23 PM (GMT 0)
Gail, you were right. The nurse called today and said all the tests came back normal. Found nothing abnormal, but my husband feels abnormal. He has a follow up visit in about 2 weeks, I guess I'll ask the doc about treating him for SIBO with another antibiotic and/or testing him for candida then. I really hope it is as simple as SIBO.

In the meantime, things seem normal as long as he takes the gas-x after every meal. Hopefully it'll stay that way. While I'm relieved to hear things are normal, I am left wondering why the heck he has such large amounts of foul gas - it just seems like he's got indigestion.

I'm going to suggest to my hubby that he try a low carb diet for the next 2 weeks, and see if that resolves the gas issues. Maybe the SCD diet or a version thereof, and just keep the carbs low and see if that helps resolve the excessive amounts of gas.

Any other suggestions?

Thanks!
PV
Posted 12/27/2010 10:43 PM (GMT 0)
my gas gets that way as well pv, when mycd flares, it produces more gas and stinkier, papaya will take smell away, for me I feel so much better knowing i won't kill anybody with the smell, it's cheap and works wonders, and easy to digest, all I know when I'm in the public and I have to cut the cheese, i let loose because it doesn't stink, and that goes for inside your house, our house was so smelly from me it was embarrassing for our daughter when she would bring friend over, smelled like sewer in our home, plus my chair that I would sit in stunk bad, it doesn't stop gas. gas x was killer for me, I thought the top of my head was going to blow off, I need to get rid of gas, sounds like he is actively flareing, does he have pain or any discomfort?

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