FUDiabetes

Intestinal Problems: the latest dx : SIBO and XYFAXAN

well i already have GP as well as IBS, but recently i was dx with SIBO. its been sheer hell going through it. my tummy was growing to the point that i looked about 4 months pregnant (which is medically impossible), and my appetite was completely gone. feeling all bloated and swollen and crampy (and cranky :crazy_face:).

i made it to my GI specialist and the minute he saw my tummy he knew exactly what it was. and, btw, it is not only due to my D, but also to certain meds i take for my scizophrenia (which cause intestinal imobility, similar to GP).

i was immeditately put on XIFAXAN 550mg 3/day. my MD gave me a 3 day sample, and told me that it was entirely possible for it to start working within the first 24 -36 hours. it is a VERY strong antibiotic which is specific to SIBO. so he called in my prescription to my local pharmacy. the cost, if Medicare did not cover it : $2,600. OMG. and in the USA, it does NOT come in a generic form.

i called up my favorite Canadian pharmacy, and found out that outside the US, it DOES come in a generic form and the cost for a 14 day treatment would be $186. (42 pills OOP) quite a difference.

well, i began taking the sample pack from my MD. and within about 1 and a 1/2 days, i felt back to normal. appetite returned, belly bloating disappeared.started feeling like this was the absolute cure to my problems. but then when i woke up this morning, i felt like i had the flu. i ached, i was exhausted, i felt all over generally crummy. and then i weighed myself. somehow, magically overnight i had put on 2 pounds.

so immediately, my husband and i were at the computer looking up side effects of XIFAXAN. sure enough, i was experiencing several of them. but the discomfort of the main problem had gone. (one of the side effects was " rapid weight gain." i was wondering “how rapid, and how much are we talking about here?” then i looked up patient reviews; they varied from 100% the best medication they had ever taken, and the absolute worst medication they had ever taken; there was no middle ground.

i found this very curious. has anyone out there had SIBO? has anyone out there taken XIFAXAN? has anyone who has taken XIFAXAN had good results from it?

please, please chime in. i am very eager to know your experiences!!!

and PS: i am not, as i thought i might be, allergic to gluten or peanuts, etc. no food allergies.

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I don’t have any experience with what you’re talking about, but I’m sending you lot so of hugs @daisymae! Good thoughts and prayers are yours too!

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Tapestry, you are always so kind and supportive to me. i am forever grateful! :grin:

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Just wanted to check in with some AB FAB news: Medicare ended up covering my XIFAXAN medication (no generic available in the USA) which would have cost me $2,600. i only had a co-payment of $194 !!!

its really nice to be able to share such incredible news with everyone.

DM

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DM! You are amazing! What a great write up about your DX and info about the meds they prescribed. Crazy about the cost and cost difference with Canada pricing! Go you for finding that out! Smart!!!

I’m so glad you had some relief!!

The first time I was diagnosed with SIBO it was after a full GI work up. My doctor thought it might be SIBO but shortly after that discussion I contracted C.diff and was advised to follow through with a course of antibiotics. Due to a drug allergy to the standard treatment for C.diff, I took metronidazole 500 mg orally 3 times per day for 10 days. It made my mouth taste awful (which doesn’t seem very bad, but it was). EH reminded me 10x a day that it tasted like not crapping myself, a helpful hint. :rofl:

As an unexpected side effect, once the C.diff infection cleared, my bloating and belly issues reduced and then didn’t return after I finished the antibiotics! Turns out the metronidazole (Flagyl) is an option for treating the SIBO, which is why it resolved after antibiotic treatment. For me the antibiotics kicked off a major issue with yeast and I developed thrush.

SIBO does seem to be coming back into my life. I might try a course of treatment with herbal antimicrobials. They were recommended by a locally respected naturopath that I had an appointment with recently. The key is to cut out sugar in addition to taking the supplements, according to her. There is also research supporting the success of the herbal treatments as well.

Also, you might find the following informative or interesting:

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For diabetic women in particular (tho obviously can happen to anyone), I would recommend getting a diflucan script (preferably for several pills, vs just one) with any antibiotic treatment. Depending on the length of the course of antibiotics, you may want to start treatment for yeast during it if you get symptoms, but definitely afterward. Also use probiotics (refrigerated ones only; the shelf-stable ones aren’t any good), especially for a bit following the antibiotic treatment, but potentially during, you just need to take them offset from your antibiotic doses by at least several hours to have a chance of doing any good.

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You know, that is excellent advice.

I’m considering starting a thread about yeast issues because it’s not just women (and yeast is a fungal infection technically). EH has been struggling on and off with both athletes foot and jock itch. This all became a major issue when I was on a ton of antibiotics because then we’ve passed it back and forth (trust me on this, it is possible). Seen plenty of doctors about it with no permanent success in treatment. :disappointed_relieved: It always comes back. We need to set aside time to find a specialist. We’ve followed all the rules (hot water laundry, long drying of the clothes on hot, cotton only, wash and dry self and apply a myriad of creams, powders, hairdryers for extra dry self, Diflucan repeatedly over and over again…no avail.)

But the Diflucan is probably the best option we have, and it works quickly!

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Ugh that sounds so frustrating! One thing re: diflucan/fluconazole, is I find you need to use minimum 2x, 1 tablet on day 1 and another on day 3 or 4, to really work. In Europe it is sold in multi-packs and in multiple strengths, whereas the US default is the single pill packs. That said, I know for women anyway, the prescription formulation topical treatments are the most effective option and will work sometimes if diflucan does not. Also definitely try good probiotics in the mix if you haven’t yet, maybe as maintenance following treatment?

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Traveling, when you were having your SIBO symptoms, did you have weight gain as well?
i have gained almost 5 pounds since this started. and i have cut out so many of the suggested foods (rye, wheat,seeds,fruit,etc). if anything, i should have LOST weight :crazy_face:

i am so bloated and uncomfortable. does that go away?

DM

Thanks for the dosing ideas!

Interesting! During this time I realized I had an allergy to Monistat, so that’s out. Although all ladies topicals can be used by men according to our doctor (and they actually advised both people use the same regimen if it’s clearly a “related” condition.) I’ve had good luck with Terconazole. We tend to rotate through options as it comes back. Most of the doctors/NPs we’ve seen say that it’s common to have persistent yeast/fungal issues in a person diabetes.

I have gained about 10# with the SIBO, but I don’t know how much of it is that condition versus crappier eating choices on my part. It’s funny, I should be motivated to cut back on carbs and sugars and focus on not having a bulging belly, but they seem even more attractive now than ever before.

When I was just off the antibiotics for the SIBO the bloating did resolve. I looked normal! I would say it lasted for about 4 months. But I would also say I didn’t follow a specific diet during that time, and I ate a bunch more carbs and sugar than I had been in the past, so I am not surprised it has returned.

DM, I’m so sorry you’re feeling so crummy. I’m guessing the weight gain is related to the antibiotics and my hope for you is that it’s time limited and you’ll be back to normal after your course of Xifaxin!!

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Thanks for the info and care. i HAVE cut out all the things i should not be eating. when i mentioned eating bread to my GI specialist, he turned purple. my CDE suggested that if i were to stay away from wheat and rye and nuts and seeds, etc, i would need to replace them all with "safe"and healthy carbs if i wanted to continue swimming. but everything i found on the internet was consistant( NO CARBS). none of this, none of that, none of that, either. well i might as well be like Ghandi and go on a fasting diet. and i LOVE to eat.

now i am on the XIFAXAN for about 4 days, and i must say that i no longer look pregnant. and although i inticially gained weight, i have not gained any more (PHEW). i am living in leggings bc they have an elastic waistband and are stretchy and i am afraid to try and fit into my blue jeans.

my CDE wants me to use a GI nutritionist specialist. even though she, herself, is a nutritionist and NP, she feels that what i truly need is out of her rhelm of expertise. UGH, just one more medical professional… :money_mouth_face::face_with_raised_eyebrow:

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it would help to know what SIBO stands for. sorry you are having such a struggle!

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SIBO stands for Small Intestinal Bacterial Overgrowth. it takes its place in the Gut of the small intestine and prevents food from moving along through the intestines and colon/bowel. so eventually, that food becomes rotten and just lodges itself there, turning into bacterial mass. it is very painful, the side effects stink; (there are many of them) and it can raise your BG.

but, as just a side-note, it can be different for everyone who gets it.

i hope i answered your question; if you have any more, please feel free to ask!!!

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i too have this problem along with gastro paresis. i’ve found that a good probiotic does help. the one i take is expensive though… it contains 61 billion CFU. there are many on the market that are inadequate. the brand i use is 1MD. there may be another as good at at a cheaper price. i wish you well.

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i currently take 30 billion in a Vitamin Shop (their own brand) container. i also take an herbal supplement called Diegestive Enzime. i also take (prescription) Donperidone (from Canada) and Dicyclomine.

does your probiotic come refridgerated or is it shelf stable?

btw, how expensive is your probiotic?

hi. my 1MD brand 51 billion cost 48 bucks for 30 caps - that is a month’s supply. but i hear there is a similar and considerably cheaper version on Amazon though i can’t remember the name of it right now.
my GI symptoms are not as bad as yours. mostly bowel cramping and having to go a lot at this point. lots of gas too. i am sorry that you are suffering so. if i learn anything more about dealing with symptoms i will surely let you know. how long have you had type 1? me, 52 years.
warms wishes to you!

ive been dx since 1987 (32 years), but i am certain that i was on the precipice long before that as i had all the symptoms. ( i was also dx with Graves disease earler on and had to have radiation treament for that. now i have been in remission for a long time and only have to take a small dose of synthroid every morning.)