Maggie from Donna

onlytoday

Hi Maggie and anyone else interested in learning about SIBO.
In answer to your question re: how in the world did I get Small Intestine Bacterial Overgrowth or SIBO:
Way back in December of 2010 after chemo, I had two upper respiratory infections in a row, treated with antibiotics. From the antibiotics I got a terrible intestinal infection called C-Diff. It lasted 3 months and ironically is treated with yet another antibiotic. Well, I've never been right since even though the C-Diff test came back negative after the 3 months. So I've had diarrhea for 14 months. Finally!!! they did a simple breath test last month and Voila!! I have Small Intestine Bacterial Overgrowth. Cured by..... wait for it..... another antibiotic!!! Ridiculous isn't it!! ???? Until the breath test I had repeated endoscopes with biopsies and 3 capsule endoscopes!! They were very confident it was the NHL - but haven't been able to prove it and now with the SIBO test coming out positive I think they nailed it and with any luck at all its the SIBO and not NHL activity in my small bowel. I've had two weeks of high dose antibiotics and it didn't work so we're doing that again. Have to kill the bacteria- there should only be a little bit in the small bowel not this huge amount I have. I'm off dairy and sugar. Lactose and sugar feed the bacteria and keep it growing.
This all happened from the antibiotics throwing off the ratio of good and bad bacteria. And this happens to the queen of yogurt- go figure!

Oh the things we learn on this journey that we really never ever wanted or needed to know!!

Hey the links you shared are great!! thank you so much!!

How are you doing? I know you said that your journey started with a perferation right? That must have been so painful and scary. How long did it take you to recover|? Hope you are doing well- let me know.

Love,

JoanieP

Donna
Oh my gosh you have really been through a trying time. I hope that you will get better soon. Our bodies are so complex and having had NHl comlicates things. I pray for your steady recovery my friend. Love Joanie

miss maggie

Donna, what all of us learn
Dear Donna,

To answer your question about my perforation in Sept 2009. I must have had terrible pain. I have no memory of the pain to this day. My grandson was staying with me at the time, and
he called 911. After a CT scan, I was rushed into surgery to resect my small bowel. I was in
ICU for one week, and 2 weeks after to recover in the hospital. Total 3 weeks. Donna, what's
so scary, I had no warning and was full of energy. Our lives change in an instant.

Your post was full of information. Very interesting, sugar and dairy feed the bacteria. I eat
so much dairy. Cottage cheese, sour cream and yogurt. I don't have to worry about sugar. My
sugar levels are low. 66 is my level. You would think, eating yogurt would be a good idea to
eat when taking anti-biotics???

Your journey has been so long, and full of tests and questions. If the outcome, as the doctor's think, is the bacteria, and not NHL would be good news. Still, it has not been easy for you. I am so sorry. This muct be one hell of a bacteria. As soon as I sign off, I have to check C-DIFF TEST. I thought I was out of the woods, having my H Pilori test come out negative. Now I wonder if this bacteria caused my perforation of the small bowel?? It took
me 3 weeks in the hospital, and one week at home to recover.

I had an appointment last week for an endoscopy. I cancelled it, for whatever reason. I was
so tired of having so many tests. I am now glad I did. I will re-schedule, ask the gastro
doctor to give me the breath test, and have him look at my records from Sept 2009. I do
remember, i was on lots of anti-biotics. I can thank you for informing me of another
bacteria.

You don't want what happened to me happen to you. Even though I was told NHL caused the perforation. I am glad finally your doctor's have a DX. Now they can correctly treat you.

Please stay strong my friend. Love Maggie

onlytoday

miss maggie said:

Donna, what all of us learn
Dear Donna,

To answer your question about my perforation in Sept 2009. I must have had terrible pain. I have no memory of the pain to this day. My grandson was staying with me at the time, and
he called 911. After a CT scan, I was rushed into surgery to resect my small bowel. I was in
ICU for one week, and 2 weeks after to recover in the hospital. Total 3 weeks. Donna, what's
so scary, I had no warning and was full of energy. Our lives change in an instant.

Your post was full of information. Very interesting, sugar and dairy feed the bacteria. I eat
so much dairy. Cottage cheese, sour cream and yogurt. I don't have to worry about sugar. My
sugar levels are low. 66 is my level. You would think, eating yogurt would be a good idea to
eat when taking anti-biotics???

Your journey has been so long, and full of tests and questions. If the outcome, as the doctor's think, is the bacteria, and not NHL would be good news. Still, it has not been easy for you. I am so sorry. This muct be one hell of a bacteria. As soon as I sign off, I have to check C-DIFF TEST. I thought I was out of the woods, having my H Pilori test come out negative. Now I wonder if this bacteria caused my perforation of the small bowel?? It took
me 3 weeks in the hospital, and one week at home to recover.

I had an appointment last week for an endoscopy. I cancelled it, for whatever reason. I was
so tired of having so many tests. I am now glad I did. I will re-schedule, ask the gastro
doctor to give me the breath test, and have him look at my records from Sept 2009. I do
remember, i was on lots of anti-biotics. I can thank you for informing me of another
bacteria.

You don't want what happened to me happen to you. Even though I was told NHL caused the perforation. I am glad finally your doctor's have a DX. Now they can correctly treat you.

Please stay strong my friend. Love Maggie

Good luck
Maggie,

Good luck with your appointment when you do go. If you have SIBO you would be experiencing explosive diarrhea, bloating, gas, stomach pain,and malabsorption of nutrients,which usually results in weight loss. I lost over 20 pounds during this period without trying to.

I am well into my second round of antibiotics for it and yet had a real bad night with symptoms. Thought it was starting to ease but not yet.

I am so so sick of it!!

Thank you for your response. Boy that must have been terrifying for you when you realized what was going on when you had the perforation! So so glad you are doing good now.

Love,
Donna

onlytoday

JoanieP said:

Donna
Oh my gosh you have really been through a trying time. I hope that you will get better soon. Our bodies are so complex and having had NHl comlicates things. I pray for your steady recovery my friend. Love Joanie

Thank you
Joanie,

Thank you for the note. We've all been through it that's for sure. I am very anxious to get rid of these symptoms- it's been a long time coming!


Love,
Donna

allmost60

onlytoday said:

Good luck
Maggie,

Good luck with your appointment when you do go. If you have SIBO you would be experiencing explosive diarrhea, bloating, gas, stomach pain,and malabsorption of nutrients,which usually results in weight loss. I lost over 20 pounds during this period without trying to.

I am well into my second round of antibiotics for it and yet had a real bad night with symptoms. Thought it was starting to ease but not yet.

I am so so sick of it!!

Thank you for your response. Boy that must have been terrifying for you when you realized what was going on when you had the perforation! So so glad you are doing good now.

Love,
Donna

Thinking of you..
Hi Donna,
I'm so sorry you are having to deal with this for so long. I sure hope this second round of antibiotics gets this cleared up. I hate hearing more suffering for any of us. Crumby cancer! Much love, prayers and positive thoughts coming your way from me. Love...Sue

onlytoday

allmost60 said:

Thinking of you..
Hi Donna,
I'm so sorry you are having to deal with this for so long. I sure hope this second round of antibiotics gets this cleared up. I hate hearing more suffering for any of us. Crumby cancer! Much love, prayers and positive thoughts coming your way from me. Love...Sue

Thank you
Sue,

Thanks for the note. It's always nice to hear from my "old" friends!! Sounds like you are handling the Rituxan maintenance well! I am so glad! It also seems like your docs have you on the right plan for you to keep the beast at bay. Having your beautiful grand daughter around is of course THE BEST medicine!!

My daughter got married in October, as you know. They want to wait a bit to start a family but want children down the road one way or the other. Meaning that if they can't get pregnant they'll adopt. So I'll be a grandmom one day for sure!! Can't wait! Being Grandmom to her cats is fine but the real deal sounds AMAZING!


I hope you continue to gain strength and do so well!! This crazy journey sure is made easier by the love and support of people like you , the old gang and our newer friends.

Love ,
Donna