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Re: ? for those with IBS
Barbara57 #212740 07/18/11 05:02 AM
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sorry Nicey, I can relate. I've been have more frequent "flare ups" of the IBS during the summer and have had the barium swallow (found multiple sections of "looped bowel") and a clean colonoscopy and endoscopy. I meet with the gastro surgeon Wed to see if this will require fixing or following. One thing the gastro NP mentioned was the possibility of gastroperisis. She put me on a minute dose of erythromyacin to see if that had any effect (less invasive than the radioactive breakfast scan :-)

No effect. I'm finding right now that the flare ups of both the spondy AND IBS are far worse in the summer. Couple things that seem to help are taking 1 Dulculax stool softener (NOT laxative) every morning with the sulfasalazine and taking my sulfa like I am supposed to...I can't skip a dose or I feel it. I also avoid all fried foods, anything with too much olive oil, onions, all red meat, hard cheeses, all alcohol, processed foods (for the most part) and thick pizza crust (most breads to be honest).
I do find I do better with cooked veggies over raw (although sometimes I have to have a tomato sandwich lol). Cauliflower is easier to handle than broccoli, videlia onions in small doses seem ok as does garlic. Milk doesn't seem to bother me unless I'm actively flaring, then I avoid it. Oh, coffee is ok if I stick to a low acid blend.

Hope this helps!


Kim: finishing the PhD SOMETIME in 2013! Dx'd with Undifferentiated Spondyloropathy (officially!) in October 2010 and gastroperesis in August 2011, now adding Sjorgren's and VERTIGO to the mix. Mom to 1 daughter with AS (on FULL disability), and 2 sons with UDiff (1 a graphic designer-freelance and 1 an elite level soccer player). Taking Enbrel (Oct. 2012) and Sulfasalezine (spring? 2011)
Re: ? for those with IBS
Barbara57 #212752 07/18/11 12:09 PM
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Hello Nisey and everyone!

I am frustruated as well. I went to a gastro that my rheumy sent me and he said to me that there is not much he can do for me at this time but the best thing for me to do is to read this book called (IBS FREE AT LAST) by Patsy Catsos. He said many people have found answers. I don't know if he just wanted sell me the book or if this is helpful at all. He said this book has a step by step method for those who had tried everything to control IBS symptoms by limiting FODMAPS carbohydrates in their diet. I still have not ordered my book yet. I will research about it first. I want to talk to my rheumy and see if he even heard about this. Anyway good luck with everything and please keep us posted. Thanks:)

Alexis

Re: ? for those with IBS
alexis98 #212755 07/18/11 12:41 PM
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I also have IBS that can be difficult to deal with. Opiates add to the constipation, but it does go from one way to the other rapidly! Sometimes it gets so bad it also makes me puke at the same time, luckily this has only happened twice.

For me taking benefiber works ok. I have to be careful with what I eat like everyone else, easy on the fried stuff, onions peppers and garlic (except I found one kind that doesn't bother me as much, so we grow it now in the garden) I can't eat whole wheat breads but I can eat white. Anything not very processed bothers me, I also eat white rice over brown. One thing I can't give up which I know I should is coke and an occasional iced latte.

If i can't go and need to upping the coffee sometimes helps, but now it seems to be the opposite. Eating lots of high fiber fruit like raspberries or cherries help a bit, but can cause pain. But sometimes dealing with that is worth getting things moving again. If the pain is real bad on it's own I use levibid/levsin which works very well, but does slow things a bit, so I need to increase the fiber and water at that point. If things are moving too well pepto works well for me.





Re: ? for those with IBS
garden13 #212769 07/18/11 05:06 PM
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I haven't figured anything out that I eat that will make me go. I have some things that give me gas like raw veggies, but nothing seems to effect whether I'm constipated or have diahrea. It just all seems to stop for some reason. I even had trouble getting the colonoscopy prep drink to go through. I was down to the wire getting it all in because my stomach was so full I was bloated and sloshy. If I drank anymore I would have thrown up. It took a long time for it to go through enough so I could drink more. Just can't understand how it would be a problem for liquid to go through? So confusing. Talking to doc later today. Hopefully he will either have answers or be willing to do more testing.

Blessings,
Nisey


It is what it is!
Re: ? for those with IBS
nisey #212773 07/18/11 05:35 PM
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I have found that when I have a UC flare, I have to stay away from all raw fruits and vegies, also whole grain anything. If it's healthy, it hurts my GI tract. Food with lots of "roughage" in it feels like a Brillo pad going down my intestines. It scratches all the way down. When things get really bad I follow a low residue diet, that really helps sooth all the GI tract. I am posting a link to it.

http://www.mayoclinic.com/health/low-residue-diet/my00745


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
Re: ? for those with IBS
avonldy #212785 07/18/11 08:43 PM
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Well, talked to doc. IBS it is. He isn't going to do any other tests. He thinks the black diahrea I had was caused by iron supplement and that I didn't really have a bleed. I explained about how long it takes my stomach to empty but it fell on deaf ears. He is sure this is all being caused by my pain meds. Tells me it would be best if I got off them. (rolls eyes: in a perfect world I wouldn't NEED them right?) I bit my tongue. I feel like I'm right back where I started. Constipated and using something that is going to give me chronic diahrea. ACK! So disgusted! There just doesn't seem to be anyone who cares that this really sucks! They just want to blame me for taking meds that I need. I had trouble BEFORE I was on all these meds. frown

So depressed.
Nisey


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Re: ? for those with IBS
nisey #212789 07/18/11 10:16 PM
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Nisey, I am really sorry to hear this. He wouldn't even give you the test for the slow emptying stomach? I think he is a jerk for blaming it all on your meds.

I don't get to read all the posts, so maybe this was already talked about, but have you tried Miralax? I remember others saying it helped with the constipation. I think it is basically magnesium. I take a lot of magnesium (1000 mg a day of magnesium citrate), and I have several movements a day, every day. Doesn't give diarrhea. If it gets too loose, just back down the dose. Sorry if this has already been suggested.

I'll keep praying.


Brenda

undifferentiated spondyloarthropy, HLA-B27+, iritis, Vit D3: 6000 IU/day, trochanter bursitis, Joint Hypermobility Syndrome, migraines, SI joint dysfunction/hypermobility, DDD L4/L5 and L3/L4, straightening of cervical spine, impaired glucose tolerance, sleep apnea.
Re: ? for those with IBS
poodlegirl #212790 07/18/11 10:39 PM
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Nisey, iron supplements can cause black stool, that's true, but it seems like the black stool along with the other symptoms that sent you to the ER point more toward a bleed. But what do us folks w/o fancy diplomas and white coats know? wink I would say to find out how you should store stool for testing (sometimes it needs to be refrigerated or frozen for X number of hours) to verify the presence of blood if it ever reoccurs, so that you can prove your case.

While I understand not wanting to come off as a pain medication addict, in general, please don't bite your tongue when the person managing your care is being an ignorant a**. If you don't point out why you feel they're wrong, or why you can't and won't follow part of their instructions, you can't move forward on your care together as a team. Now, this guy may not be the right fella' for your team anyway, by the sounds of it, but that's all the more reason not to pussy-foot around the issue. Just my 2 cents from dealing with gastrointerologists who haven't taken the big picture into consideration well enough. They're not internists like our rheumatologists are, so maybe they tend to struggle a little more with the "big picture."


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: ? for those with IBS
iviary #212792 07/18/11 11:32 PM
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Hi Nisey, So sorry you are having to go through this. Something my gastro explained to me is that my IBS is primarily constipation - until I eat something that is a trigger and then all hell breaks loose - literally! So he said the goal is to not get constipated and keep everything moving. I not only take a Fibercon daily but I take two stool softeners as well. That seems to keep me regular and not set up the scenario for a bad episode. I don't take much in the way of pain meds but I work with clients who do and they all complain about constipation. The book I recommended discusses how a soluble fiber diet helps with both constipation and diarrhea and she explains how that works better than I can explain it.

As far as the gastric emptying possibility my two year old grandson has delayed gastric emptying (also called gastroparesis.) His causes frequent vomiting (this grandma has been thrown up on more times than I can count but it's ok 'cause he's so darn cute!)and he is on low-dose erythromycn and it has really helped. The study they did with him is to feed him some food with a radioactive tracer in it and then scan his belly to see how fast or slow it digested. They found moderate delay and have him on the erythromycin, low fiber, low fat, and frequent smaller meals. Not sure how they would scan given that your problem is lower in to the colon. The erythromycin has a side effect of speeding up digestion and it's used for this in a lower dose than it is used for antibiotic purposes. There's a website on motility disorders. If you can't find it let me know and I will find a link for you.

Will be thinking of you and hoping this gets resolved. It's awful to be hurting in your digestive system on top of everywhere else!



Barbara/Age 66. Diagnosed with SpA in 2009. Unable to take NSAIDs due to gastritis. Failed sulfasalazine, Humira, Actemra, Enbrel, Rituxan, Orencia and Xeljanz. Currently taking Cosentyx and prednisone.
Re: ? for those with IBS
Barbara57 #212813 07/19/11 02:55 PM
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Barbara,

I firmly believe I have what you are describing. (gastroparesis) I looked it up and it makes more sense than IBS. I can only eat one big meal a day. If I eat a big lunch, I am not hungry again at supper time. I still feel full. The colonoscopy prep liquid took forever to leave my stomach. Once it did things went fine. I just am not emptying very fast.

Mary,

The doc knows that I am not going to stop taking my pain meds. I bit my tongue because he keeps harping on it. I would have come back with something not very nice. Obviously, this man has no idea what it is like to have the kind of disease we do. I take the minimum of pain meds. I'm not even on the heavy hitters. I take Ultram. The thing I couldn't seem to make him listen to was that I had this problem BEFORE I started any of these meds. My plan is to follow his advice to the letter (not the stop taking meds part and he knows it) and when/if it doesn't work I will have some ground to stand on to ask for further testing. In the mean time I am going to keep an eye on things as far as bleeding. I also am going to ask my GP to keep a check on my anemia.

It's just so depressing that he didn't even try to find an answer. He just slapped me with IBS and that's it. There is only one drug used for treating it successfully and I'm allergic to it. I just feel like he is abandoning me to a "syndrome" that gives no answers when he hasn't done everything he could to find the problem.

Thanks for your help and concern. You all are great!
Blessings,
Nisey


It is what it is!
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