So, what’s up...Care to tell?

HappyKat5

I know some people, don’t like to let others know what their dealing with which I can understand. But, I have always been very honest and open about what my condition(s) are because I think the more that we talk about them, more people will become aware, new research will come and maybe a cure one day. So, if you feel comfortable, please share

I’ll go do first.
I was diagnosed with Idiopathic Gastroparesis in 2008 and Idiopathic Colonic Inertia in 2009. I’ve had my stomach, gallbladder, appendix, uterus and colon removed. My ileostomy was reversed 3 years ago, but I was diagnosed with SIBO in 2016. My diagnosed is finalized as Global Dysmobility. I’m happy to say in a couple of days, I will be celebrating my 10 year anniversary of my diagnoses and I’m still here!

singingflutelady

What are your sibo symptoms?

HappyKat5

@singingflutelady My symptoms were feeling bloated and distention (which feel different to me even thou they’re basically the same thing) after eating something with a good amount of Gluten. I only say that because I have eaten a fried mozzarella cheese stick and felt okay. But a whole slice of pizza? No. And, sometimes feeling nausea, but that usually due to my gastrectomy. I was scheduled for a 4 hour test, but blew in the 1st bag and I was diagnosed quickly. For those that don’t know about a Celiac or SIBO test, you drink some god awful drink and then you blow in a tube, then repeat for up to four hours. Basically, for SIBO, the bad bacteria is better than your good bacteria in your body. Gluten can make it worse.

Jennymarie57

Awesome group idea! I have a severe form of divirticulitis that effects my entire large intestine. Most people get infections in lower left sigmoid colon, I get them in transverse and descending and ascending colon..I am considering surgery, and have had to make major diet changes to avoid flares..Right now I am dairy free, soy free, yeast free, mostly sugar free, nightshade free, and gluten free..So my diet is limited. I'm doing ok with it..I try to add a new food a week and do a lot of journaling..I've lost 20 lbs since Dec, but have only been on MFP since March. It's a big help in tracking nutrients for me..Happy to share my diary to anyone who is interested or to answer questions about divirticulitis.

HappyKat5

@Jennymarie57 Thank you for sharing! I just wanted to have group that eats differently and loses or gains differently. It’s hard to post something in the community and hear...just eat MORE fiber, or you’re eating under your calories, etc. We with DD can’t digest things a lot of the things that would help us lose or even help to gain weight. Seriously, I love salad but can I eat everyday?
Nope

singingflutelady

Salad is deadly for both my conditions gastroparesis and crohn's. I'm always bloated and gassy but who knows if it is from the gastroparesis or crohn's or maybe sibo? @Jennymarie57 like happykat I have also had my colon removed (and rectum.. I have a barbie butt) but have a permanent ileostomy because of rectovaginal fistulas that couldn't be repaired which were caused by Crohn's as well as Crohn's inflammation. My gastroparesis is idiopathic but it did start a few months after surgery. I had a dramatic change in my output which was my first symptom even before the pain, nausea and vomiting.

HappyKat5

@singingflutelady and @Jennymarie57
I hate that all the foods that I really want to eat are not good for us! Illness can make everything change...in an instance. Just like that.
Damn

singingflutelady

HappyKat5 wrote: »

@singingflutelady and @Jennymarie57
I hate that all the foods that I really want to eat are not good for us! Illness can make everything change...in an instance. Just like that.
Damn

Oh i totally agree. I was super into fitness and weightlifting when I was diagnosed. I admit I ignored symptoms for a long time but I went from deadlifting 2x my bodyweight to being in hospital on tpn straight from my colonoscopy 2 weeks later. And bam the fistulas erupted a month later. Most people who get them have Crohn's for at least 10 years before getting fistulas so I probably had a mild/moderate version for many years (that was called ibs/lacrose intolerance etc) until it became very angry and severe. My GI mentioned surgery at diagnosis but I.was scared and overwhelmed but if I knew them what I know now I would have done it at that time as I was made to wait 2 years to see if meds would close the fistulas and it was 2 years of hell. Finally had surgery and thought I'd get my life back but as soon as I started feeling better bam gastroparesis happened. I'm 3 years and 3 months since my crohn's diagnosis, 11 months post op and 5 months post gastroparesis diagnosis. GI diseases are horrible and so misunderstood by the general public.

HappyKat5

I agree! I think DD (Digestive Disorders) are so hard to diagnose because many of us appear “normal” on the outside. My MIL had cancer and because her hair/eyebrows fell out and she looked “sick” people took her seriously.
But, me? I was actually told at one point to not wear makeup to my appointments so I would look sick and therefore, be “sick” so the doctor would take care an interest in me.
That pisses me off so much!!

Jennymarie57

I hear you, people tend to not want to hear about digestion issues to more so than others I think...like it's TMI or something. That bothers me. If I can't accurately explain my illness, they couldn't possibly understand it. I'm nervous about my first surgery..Which would be to remove the sigmoid, but also exploratory and I've been told they may remove more if necessary. It's weird to think you'll wake up not knowing the outcome until someone tells you. I have been resisting surgery for year's, have gone on a very restricted diet and some lran hamburger meat a couple weeks ago threw me into a flare. With this flare I will also getting pain when urinating, which I know is not a good sign..So I'm reluctantly agreeing to the surgery my dr. thinks I desperately need..I still feel on the fence, but my risk for a sudden onset fistula like another poster mentioned from a long festering period of symptoms is pretty high .. Anyways nice to meet all of you and thanks for listening. I find your cases fascinating, so please tell whatever more your comfortable with!

singingflutelady

I wouldn't wish fistulas on my worst enemy. My life is so much better poop wise (except the gastroparesis of course) with an ileostomy. I was basically housebound because of the fistulas. Totally tmi but anything liquidy in my colon (which is basically everything when you have Crohn's) came out the wrong holes (i had 3- 2 vaginal and 1 in my skin near there). So painful as they chafed and the whole area was raw from the liquid stool. An ileostomy is so much better than depends! Also I kept getting utis and skin boils and was constantly on antibiotics which cause more issues. I was on 2 immunosuppressant medications (the go to meds for severe Crohn's are all immunosuppressants) so constant infections was scary. I was ready to go off disability and start looking for a job but bam gastroparesis which has made working impossible again.

Jennymarie57

That sounds rough..thanks for sharing because I need to hear stuff like this from others in similar boat. I have fissures and skin ulcers as of now in my nether regions, I can't imagine what you went through. I have to get that surgery, but your experience makes me feel better about it..When you can't see inside yourself to see the extent of the damage and the tests and scans can't see everything..it's just scary..you never know what dangers your playing with.

Aingealicia

Hi, wow, thank you all so much for sharing your stories of the journey we call life. For me, I am just starting with the GI in a few weeks. My 'pipe cleaning' as I have come to call it will be on May 8th. I have two nice bottles of "liquid plumber' and some anti-nausea pills. Ode to joy. For me, this is a long journey of testing to find out what is going on.

I have only had to die and come back 5 times and meet death with 2nd stage Sepsis 6 months ago. We, death and I, played chess, and since he is not typing this, you can tell I won. A list of my issues are not anything close to what you all are going through, however, I do have my own 'special' journeys to share. I highlight 'special' because my PCP and Neuro both told me to stop being so damn 'special.' Haha.

I am finally to a 3 month check up with my PCP and Neuro. Rhumi once a month, just started with G.I., Chiro, PT, and Shrink once a week. A Infectious Disease Dr hopefully never again. Radiologist yearly for Cat and MRI scans both with and without contrast and a Radiation Bone Scan once a year. I think I covered them all, wait, let's not forget the vamps monthly. Honestly I am running out of veins for them to blow up. Haha

So this is what my journey consists of...

Guillain-Barre Syndrome (GBS) - . I was paralyzed twice and in a coma once from GBS. So fun. I also have Peripheral Neuropathy, Fibromyalgia, Chronic Fatigue, Raynaud's Phenomenon, bilateral carpal tunnel, Celiac, am being tested for Lupus or RA that is very active. Oh and I have Chronic PTSD. The GI is to rule out other gastro issues so that we can get the Lupus or RA.

So that is me. I do have a personal side I promise. Thanks for reading.

singingflutelady

Hi there. From your list I have had carpal and cubital tunnel (surgically repaired. From overpracticing flute and ignoring pain). I don't have a fibro or neuropathy diagnosis but pain management has me on pregabalin which helps my body pains (but not my stomach). Gastroparesis is usually due to damage to the vagus nerve (happykat and I are both idiopathic so they habe no clue why it happened). On top of GI and PCP I also see a therapist (bipolar type 2, anxiety and mostly recovered anorexic) and pain management dr for chronic pain (officially for my abdominal pain but autoimmune disease are systemic so everything hurts). Luckily I have never been septic but have had several colon abscesses and am immunosuppressed. That's my biggest fear.

HappyKat5

I just want to thank everyone that has shared their story I just want people to share their experiences because THAT'S how we will finally get a commercial. Seriously, it's only been in recent years that we have seen commercials for Crohn's and now Celiac. I remember hearing about IBS commercials, but only because it seemed to be an "inconvenience" for people. Fast forward to 2018, and people don't even know how to spell what you have! SMH!!

Spread the word! I think we will be a cool @ss group!

VeggieGirlforLife

About five years ago, I went in to a digestive urgent care after experiencing pain when trying to eat. This had become progressively worse over a couple of months and I ignored it, but eventually I got to a point where I would take one bite of food and it felt like a fist in my stomach. I was very bloated (new for me as I'd always had a very flat stomach) and in a lot of pain and couldn't eat anything. At the digestive urgent care, I saw a nurse practitioner who was concerned about my family history - my maternal grandmother had stomach cancer. She scheduled me for an upper GI endoscopy to check for cancer, ulcers, h-pylori and gastritis. On the day of the procedure, I met the doctor who was a recent graduate from medical school - I was reluctant to let him touch me because I wanted someone well experienced, but as it turned out, he had a great deal of new knowledge that other doctors in my area don't. As I described my symptoms and he asked me questions, he said he was going to test me for SIBO while checking for other issues. When I woke from the procedure, I immediately asked if I had cancer. No, thank God, I didn't. He diagnosed me with SIBO. I had never heard of it before that day. He started me on the horrible antibiotic treatments and I became very sick from them. I was quite upset at having to take them anyway since I do not normally take antibiotics. They ended up having to give me anti-nausea medication as well. The Ciprofloxacin is what made me so sick and I will never take it again.

Note: Normally SIBO is diagnosed with breath tests, but those were not available in my area at the time and I had already been scheduled for the upper GI to check for other gastro issues.

My diet had to change with this new condition. I found a book that was highly recommended for various digestive and bowel problems called Breaking the Vicious Cycle by Elaine Gottschall. I borrowed it through an Interlibrary Loan and that's where I learned about the Specific Carbohydrate Diet. I am a BIG believer in eating for your health, so I knew I should try this diet.

I very strictly follow the SCD diet and I do not cheat. Any cheating would result in extreme pain as I had before and I will not risk it. I am also a vegetarian which I will not give up for any reason whatsoever, even though an animal bone broth is supposed to be the most healing thing for your gut. I am gluten free, grain free, corn free, processed and refined sugar-free (the only sweetener I am allowed is honey and it's become so sweet for me I very rarely ever use it) and with SCD there are some vegetables that are off limits, the only allowed carbohydrates are monosaccharides. There are many other restrictions to this diet as well. Needless to say, this new way of eating wasn't easy to begin, but it has become my life.

The one positive out of this diagnosis is that it forced me to start cooking everything. I had been eating a primarily raw diet before, so I had a lot to learn. I frequent Farmer's Markets and stay on the outside perimeter of a grocery store. I love cooking now and have enjoyed purchasing new kitchen gadgets and making lovely presentations for my meals. I watch a lot of Food Network and the Cooking Channel. I've become very good at alternating recipes and even creating my own recipes!

Downsides: There is only one restaurant in my city that I can eat at and it's only one thing they serve, so there is no variety. I simply don't eat out. Yes it makes it hard for social things and if I have to attend, I just sip on water. Note that this makes everyone else very uncomfortable, but I'm okay with it. I'd much rather eat safely and happily at home with food I love.

I am still having bloating issues which are horribly uncomfortable and unsightly. But most days I do okay. I joined MFP to lose some extra weight gained by all the yummy food I make and am hoping that may make a difference in the amount of bloating. Logging everything helps me to cut down on the portions of food I eat and also to be aware of meals which might have a trigger ingredient that I hadn't noticed before.

Sorry this is such a long post!

Aingealicia

singingflutelady wrote: »

Hi there. From your list I have had carpal and cubital tunnel (surgically repaired. From overpracticing flute and ignoring pain). I don't have a fibro or neuropathy diagnosis but pain management has me on pregabalin which helps my body pains (but not my stomach). Gastroparesis is usually due to damage to the vagus nerve (happykat and I are both idiopathic so they habe no clue why it happened). On top of GI and PCP I also see a therapist (bipolar type 2, anxiety and mostly recovered anorexic) and pain management dr for chronic pain (officially for my abdominal pain but autoimmune disease are systemic so everything hurts). Luckily I have never been septic but have had several colon abscesses and am immunosuppressed. That's my biggest fear.

Thank you for your reply @singingflutelady. It is nice to have a group to belong to that we can talk of situations in our life not only to share, to learn. I am learning about some of these new things to me. Like Gastroparesis and Idiopathic that you and happykat have. I want to learn.

It seems like the GI is leaning towards RA for me, he looked over my medical records and said that the 'cleaning of the pipes' is to eliminate things for the Rhumi. All my Drs have no clue on my GBS because I only had a flu shot in the 70's and have never had one as an adult, ever.

My Shrink is a pain management therapist.

I don't wish Sepsis on anyone. You get a new Dr that no one wants. The Infectious Disease Dr. -Bomm, bomm bomm- (Sound effects.)

I use humor to get through things as you all will see.

@VeggieGirlforLife Hi, wow, I just keep learning more. Thank you for sharing. I currently am on a plant based diet. I have found the change unbelievable because I have so much energy.

I count myself very lucky I have what I have. I want to thank you all for sharing and allowing me to see how fortunate I am to be here to learn.

Thank you @HappyKat5 for being my friend and for starting this group.

singingflutelady

@Aingealicia strangely there is a lot of overlap between RA and Crohn's/UC drugs. I'm currently on Humira and used to be on Remicade (both are tnf inhibitor biologics) and both are also used to treat the autoimmune arthritis diseases and psoriasis. There are a few others used in both as well so IBD and RA must be closely related.

singingflutelady

Oh i meant idiopathic gastroparesis not idiopathic and gastroparesis as opposed to diabetic gastroparesis or drug induced gastroparesis. Gastropatesis is a pretty mysterious disease. It literally means stomach paralysis/ gastric emptying delay. It basically means food sits in your stomach much longer before it leaves (if at all) as well the stomach doesn't grind the food well. It causes upper abdominal pain, nausea, vomiting, lack of appetite, feeling full after only a few bites, malabsorption, etc. There are a few drugs that can speed it up a bit in some people but they have nasty side effects. There aren't really many treatment options. The standard test is a gastric emptying study where you eat radioactive eggs and they watch where they are in your GI tract for 4 hours. Normal is 10% or less still in stomach at 4 hrs. >50% means severe delay. Mine was 70% @ my last test and I believe happykat's was 93% or around there.

HappyKat5

Sorry, so late with responses, I will catch up tomorrow , but I have been dealing with kid crap. For those, that have children, you know when they say that they have a project due TOMORROW...it means, I’m spent the whole day looking for poster board, glue sticks AND glitter. Really? And I’m finding out a day before it’s due and you knew about this 2 weeks ago?
I might have to look up silver glitter calories because I know I have ingested at least 259 calories worth.
Smh.

Jennymarie57

lol, gotta love those school projects:)..Funny I've learned to avoid glitter at all costs!