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View Full Version : variety of illnesses, now IBS different than before


Gail10448
07-08-2014, 06:26 AM
I've had IBS-C for several years. Then, over a year ago, I started havinng neurological symptoms: fatigue, tremors, balance issues, speech problems, brain fog, etc. At first docs thought it was Lyme disease, had various tests that were negative. Symptoms started easing a few months ago. Then I had an acute attack of sciatica (10 on a pain scale of 1-10), had an epidural injection to get that under control. Was seen at Mayo, told I have encephalopathy of unknown cause, but at least back problem was addressed. Three days after we got back from Mayo, I had a gastro infection with watery diarrhea, foul-smelling bowels. GI doc tested me for giardia and about 6 other infectious agents (I had used a public water fountain that was hidden away in a tourist site, so who knows what pathogens could have been in the water). Since then, I have been dealing with severe nausea, loose bowels, poor appetite, can't eat a normal diet, sensitivities to just about everything, and it gets worse every time I have a flare-up. I've lose 18 lbs. in 2 months. Did EGD, which was normal. Two prior colonoscopies were normal. Go back to GI doc in 2 weeks, but my life has been so radically changed for over a year now, and I sometimes feel like ending it all. I don't know where to turn next. No social life to speak of because I never know how I'll feel, or I feel too bad to go out. Nausea has induced anxiety attacks, so now on Xanax. Am trying acupuncture tomorrow. How do I keep going when no one can figure out how to get me to a better place? I'm ready to throw in the towel, can't live like this. Have new grandchild that's almost 5 months old and haven't been able to travel to see her, haven't been able to travel at all. I feel like I'm backed into a corner and don't know what to do anymore, becoming despondent. Afraid to take antidepressants because nausea can be one of the primary side effects, and I don't want to make it worse than it already is. Can anybody help me?

rederyn
07-08-2014, 07:44 AM
I feel for you. While my symptoms aren't so bad right now, I totally understand not being able to be social, being afraid to leave the house. It's tough to make friends when your life revolves around your bowels. I never know when I'm going to have a bad day. I dread trips, dread not being in the comfort of my own home.
Have you tried elimination diets? I have tried the fodmap diet, the candida diet, and I currently avoid dairy and gluten, which helps to a certain degree. I also am sure to take probiotics daily. The next diet I'm considering is the auto immune protocol.
Hang in there. Sometimes I just have to medicate myself to do things, anti nausea meds, anti diarrhea meds, etc. and I don't normally like to take meds.
It has it's ups and downs, sometimes I feel like I'll never have an answer and that my life is a living hell, other times I feel like things will be ok. I truly believe that one day, there will be more answers about our guts, what is wrong, and how to fix it.

worrywort
07-09-2014, 08:53 AM
I am on the same boat.. What's worse is having family talk bad about you because you avoid certain situations. I have 2 young kids. Its truly life altering. I am so you have to deal with it also, I feel that same way :(

ladybud
07-09-2014, 10:26 AM
Gail, Welcome and I am sorry you are going thru such a terrible time. I would try to get into your GI Dr. sooner by calling and saying it is urgent (it is) and seeing if there is any cancellation spot open. I would also want to know exactly what showed up on your tests that were done, and what was tested. Were you treated with anything at all? 18 pounds weight loss in 2 months is a lot. There still could be infection that didn't show up first time, or it could be inflammatory, and more tests need to be done to identify what is going on. When Drs. say see me in 2 weeks, that means if you are doing better. They don't want you to stay sick and not come in all that time. This can get figured out and treated so you can get back to a normal life. A neurologist can be consulted later to get the encephalopathy worked up. Do you have any symptoms of that? I would get on the phone now and try to get in to your Dr before the weekend, and please ask for a copy of your test results. You can post them if you'd like for feedback.

Gail10448
07-09-2014, 02:30 PM
Doc tried me on Xifaxan in case SIBO was contributing. Started me on Align instead of the probiotic I was taking. I'm also lactose and fructose intolerant -- can't eat anything with high fructose corn syrup! He also suggesed FODMAP diet, but it eliminates too many things. If it weren't for toast and crackers (wheat-based), I'd probably have lost 50 lbs. I was tested for celiac disease, as well as about 8 infectious agents (giardia, etc.), all came back negative. EGD showed mild stomach inflammation on biopsy, but doc says that's normal because stomach is an acidic environment. Meanwhile, I'm on very bland diet, obviously not enough calories, and if I take the anti-nausea meds, I'm pretty out of it for the rest of the day. Also on Bentyl for diarrhea/cramps. Went for acupuncture today and actually feel a bit better.

This has been an awful year for me. Been working with a neurologist and rheumatologist, originally thought I had an autoimmune disease (neuro lupus) because tests were coming back abnormal, but the neuro symptoms are subsiding, and by the time I got to Mayo, bloodwork had returned to normal. I'm able to physically function much better (had tremors, balance issues, speech problems, brain fog, fatigue). Fatigue still lingers, but based on what I'm dealing with, that's no surprise. It's just been one thing after another for 13 months now, and I feel like I'm at the end of my rope!

Gail10448
07-09-2014, 02:32 PM
Doc tried me on Xifaxan in case SIBO was contributing. Started me on Align instead of the probiotic I was taking. I'm also lactose and fructose intolerant -- can't eat anything with high fructose corn syrup! He also suggesed FODMAP diet, but it eliminates too many things. If it weren't for toast and crackers (wheat-based), I'd probably have lost 50 lbs. I was tested for celiac disease, as well as about 8 infectious agents (giardia, etc.), all came back negative. EGD showed mild stomach inflammation on biopsy, but doc says that's normal because stomach is an acidic environment. Meanwhile, I'm on very bland diet, obviously not enough calories, and if I take the anti-nausea meds, I'm pretty out of it for the rest of the day. Also on Bentyl for diarrhea/cramps. Went for acupuncture today and actually feel a bit better. He's also recommending I take Florastor.

This has been an awful year for me. Been working with a neurologist and rheumatologist, originally thought I had an autoimmune disease (neuro lupus) because tests were coming back abnormal, but the neuro symptoms are subsiding, and by the time I got to Mayo, bloodwork had returned to normal. I'm able to physically function much better (had tremors, balance issues, speech problems, brain fog, fatigue). Fatigue still lingers, but based on what I'm dealing with, that's no surprise. It's just been one thing after another for 13 months now, and I feel like I'm at the end of my rope!

MountainReader
07-09-2014, 10:53 PM
Well, I don't have a lot to add, but want you to know you aren't alone in this. My IBS triggered in 2008 at the same general timeframe as a bunch of other health issues too. I'm convinced one of the meds they had me on triggered it.

Anyway, what have they done for you to help with the nausea and diarrhea? Do you have any anti-nausea meds? I've been taking anti-spasmodic to help with the diarrhea for a few years after diet alone stopped working as well. Mostly my other digestive issues seem to keep it in flare. Anyway, This last week, I started taking Lotronex for the IBS-D. I worried because it is 'black box' and delayed starting it, but I saw my GI doc last week after losing 9 lbs in 7 days with no diet change. He convinced me to start it on an every-other day basis and work up if I need to. The IBS impacts my work quite frequently and I worry about my job so I figured I should give it a try. I'll post later how it works. For the Nausea, I prefer the Zofran. Phenegran helps some though.

With all your tests, you've probably had the basics, but have you had a recent C. Diff stool test done? My GI doc does them frequently on me when I have those flares of going 20 times a day. With my other health issues, he worries about me being more susceptible to that one.

I second calling the GI doc to see if you can get in sooner. Mine usually gets me in same-day or next day when I'm having serious issues. I feel 'silly' going in so frequently for something I'm already diagnosed with, but he is great about exploring options for my treatment to help me find my balance again. I haven't been there for a while, but do have some times better than others.

I wish you well.

ladybud
07-10-2014, 01:38 AM
I too like Zofran for nausea. Bentyl and some of the nausea meds certainly cause drowsiness so make it hard to function. Has anyone in your family had inflammatory bowel disease like ulcerative colitis or Crohn's? The colonoscopy would have ruled out UC but not necessarily Crohn's. Do you have mucus or blood in stools? There is a test done with a swallowable camera in a capsule that can check out the small bowel. Lupus can cause many GI problems, and since that was questioned before, it would be reasonable to check for it periodically. It can take months or even years before the lab evidence shows up-long after symptoms have been present. It is also a cause of encephalopathy, so I would keep that on the list of possibilities. The good news is that all of these things are treatable and you feel better once the culprit is identified and treatment begun. So hang in there, some answers will come with persistence,

Gail10448
07-10-2014, 07:11 AM
I'm on Bentyl, Zofran (or phenergan), Xanax (anxiety/panic that comes with nausea). I had C. diff. 20 years ago, which is when the nausea/anxiety link staarted. I was tested for it this time, came back negative. My usual is IBS-C, but whatever I got sick with almost 2.5 months ago changed it to IBS-D. I guess it's mixed or alternating. No one in my family has IBD or Crohn's, no bloody stools, etc. Doc is also looking at the possibility of gastroparesis -- I have no idea what they do for that -- but he said something about testing me for it. I have many drug sensitivities, so am cautious about starting something new; not even sure I want to take an antidepressant because common symptom is nausea.

Encephalopathy was worked up locally and at Mayo. No definitive cause can be found. Brain MRI done last June was negative, and none has been done since then. Only positive symptoms showed up as what are called oligoclonal bands in my spinal fluid, which is usually a sign of brain inflammation. Anyway, the neuro symptoms seem to be resolving, thank goodness.

Bottom line is I've been sick for 13+ months with one thing or another, and there's been no respite. I just want my life back.

kesae
09-30-2014, 01:47 AM
Hi Gali10448. It sounds like your earlier stomach illness from drinking public water has left you with an imbalance of healthy bacteria in your gut. I know people who were prescribed different Rx drugs for their symptoms and have had tests done with unclear results. This is what happened to my aunt who suffered for so many years until recently. She was told by her doctor to try a medical grade probiotic called VSL #3 (there's a Rx version in which you need a prescription from your doctor, and an OTC version you can just ask for at the pharmacy counter). She took this and most of her symptoms went away. Also I have had lasting affects of suffering from a handful of giardia episodes as a teen until I tried VSL#3. I've been using it for a week now and I feel SO much better. I noticed my stomach doesn't feel bloated or painful after eating. I wish I knew about it 12 years ago. Anyways, it is expensive at almost $50 a bottle and depending on your insurance, the Rx version may not be covered. But I get mine at Costco for $46 and this is a better deal than on their website. I really think you should try it and I hope you get better. Good luck!

Gail10448
10-02-2014, 09:35 AM
So, I went on a very restricted diet per my gastro doc -- the FODMAP diet, except I didn't eliminate gluten since I'm not sensitive to it. It took a while, but feeling much better. Constant nausea has abated, and I was actually able to take a trip in late Aug./early Sept. My state of mind has definitely improved. In total, I lost 20 lbs. in 2 months (May/June), then it stabilized, now have regained 3 lbs. My diet is no longer quite so restrictive, thank goodness. I hope I never have to go through a hell like that again! :)

MountainReader
10-02-2014, 07:23 PM
Thank you for sharing. Just this week, I bought 2 FODMAP diet books to research possible trying it. It is nice to hear it has helped you. It makes me seriously consider making the leap to see if it would help me.

Gail10448
10-02-2014, 08:20 PM
I ended up buying some FODMAP cookbooks on ******. Very helpful due to all the dietary restrictions.