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12/23/12 10:13 P

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The botox injection helps only if the pyloric sphincter doesn't work. That is the muscle that controls the pylorus, which is the opening that empties the stomach into the duodenum, where alkaline fluids adjust the pH so the jejunum (first part of the small intestine) can uptake the nutrients from the food that was eaten. So if the pyloric sphincter doesn't open, nothing passes out of the stomach and eventually must be thrown up to empty the stomach. A botox injection causes the pyloric sphincter to relax and stay open all the time, which means the person needs to adjust what they eat and how they eat. It is not a permanent fix and progress must be monitored by a GI doctor.

Is she on an acid reflux medication? If not, she needs to get on one right away. An OTC medication like omeprazole or lansoprazole (meds ending in -prazole are PPIs) will help until she can get into a doctor and find out what kind they want her on. Avoid the meds like tagamet and zantec as these can cause further damage to the stomach and are not meant to last more than a few hours. When a person vomits it rarely goes up the nose, as the force of it causes it to come out the mouth. It is possible that her acid reflux is totally uncontrolled and that's what's going up her nose, as it comes up with less force and can bypass the systems that prevent vomit from going up the nose. That happened to me before I was put on PPIs the first time. Also, she should lay off the coffee, as it often makes acid reflux worse and caffeine can cause a host of problems when a person is not eating to dilute it.

My suggestion is to get into a GI doctor sooner rather than later, and if that GI doctor isn't doing what you feel is enough to explain what is happening and what modifications she should make and offer his/her thoughts on treatment, go to another one. There are thousands of GI doctors out there but their knowledge about GP is definitely not the same. Some of them are completely ignorant or prejudiced against GP and believe it doesn't exist, while others understand it well and have a better idea what to do. Also, know that a colonoscopy only looks into the large intestine and maybe an inch into the small intestine. It can't diagnose GP. For a full diagnosis and review, an endoscopy and gastric emptying study are the 2 main tests, and many doctors order several more to rule out the other conditions that have similar presentations to GP.

She should try drinking Ensure. There is the regular Ensure (which seems milky but doesn't bother lactose intolerance) and the new Ensure clear. Avoid the 'plus' and 'complete' types at first, as these have higher fat content. Also avoid Glucerna because it has higher fiber (fake, man-made fiber, which is the worst kind) and can cause problems. There are a few other types out there, and you can check them out but pay attention to the fat and fiber numbers. The store brands that are like Ensure are usually just fine, just pay attention to the fat and fiber numbers also. This will give her nutrition and calories but it is easier to digest than solid foods. Find other sources of liquid nutrition as well, such as hot chocolate and gatorade so she has variety.

Drinking warm liquids is the BEST idea. If it's too hot, it can burn the mouth and esophagus, so be careful of that. Avoid anything that's ice cold or even chilled, as it will slow digestion, cause cramping, and can actually promote vomiting. Lukewarm and warm is best Tip: the reason people drink ice water is because the cold numbs their tongues so they don't taste the 'impurities'. In restaurants they give you ice water so you don't taste your food as well and eat MORE because you're desperate for the tastes you're not getting. It also numbs your stomach so it takes longer to know you're full, then slows down your digestive system so by the time you realize you're full you're painfully full (and paid the restaurant for extra food you wouldn't have eaten otherwise). Drinking ice water before eating is really not good for anyone.

As I had said before, I'm not sure what books you're looking at getting. Be very careful, as no two cases of GP are the same. Every person must figure out what works for their body, and theirs alone. Also, walking into a doctor's office and demanding a treatment that worked for someone else pretty much guarantees doing more harm than good. There are several treatments but none of them are without risks, and some can actually be fatal. The doctor needs to weigh the risks and benefits of each treatment, add in the potential causes, and review previous treatments before deciding what to try. You can't skip the safest treatments to try a dangerous treatment that won't work for people who got it from her cause. Also, there are new treatments that are coming out for the first time RIGHT NOW, so any book more than a year old is already far out of date. It's one thing to read a book that's about a personal journey and another to read something from someone saying 'this works for me and will work for you too!' In fact, a nurse that works in my health care network created paperwork to tell everyone with GP how to eat. I had to then tell other nurses and doctors who believe those are the GP bible that while it might work for her, it's not going to work for about 75% of the people I've met with GP. Each person has to learn what works for them - whether they can't get any liquid to stay down and must be on a J-tube, G/J-tube, or TPN, or whether they can modify their diet slightly to avoid high fat foods and high fiber foods but everything else is fine.

~ Sheri ~

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12/22/12 10:42 P

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Just saw the title for this thread. My partner (Sherry) had the inj many years ago, we're actually thinking she's due for another one. It seemed to REALLY help her. This may be in another thread, but the past day or so she,s been drinking broth, coffee (no creamer or anything. And in her terms, once she drinks it, it's like it has nowhere else to go, so it comes back up her nose. Is this just because the drinks are warm/hot? I plan on getting books, & we're scheduled to see her GI dr soon & schedule a colonoscopy. I can't help (now that I've found this board) that they realized she has it & were just like "ok, have a nice day"... like there was no info or anything on it.)

Jennifer :-)

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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
6/21/10 10:17 A

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Linda, you are such a giving, patient and gracious person; many, many thanks for your words and thoughts...I wish you all the best and a speedy recovery...please keep us posted.

I just wanted to update y'all as you have been kind enough to listen as I have vented initially...Last Thursday, I went to Yale to meet with the surgeon that I was referred to by my GI doc...the surgeon said that he did not think that a Whipple procedure is appropriate for me, which threw me off guard as my GI doc seemed to think that the Whipple, although quite invasive, would be "curative"...the surgeon said that the growth should be able to be removed endoscopically and that, yes, I would have to go back for endoscopic ultrasounds annually, but that should be sufficient...then, he proceeded to communicate to me the details of a Whipple; surgery is five hours (minimum), NONE of my stomach is removed (my GI doc said that part of my stomach would be removed), my gastroparesis could become even WORSE (some GP patients, post-op Whipple, stomachs STOP working altogether, causing a tube to be put in temporarily until their stomachs begin working again, prompting a 6-8 week hospital stay), infection possibility (my biologic that I am on for the rheumatoid arthritis put me at a high risk of infection)...the surgeon told me that if the growth was not able to be removed endoscopically, THEN I would go for a Whipple...soooooo, I was thrown for quite a loop as what the surgeon told me differed from what my GI doctor told me...now, I have been referred, yet again, to another Yale doctor that specializes in endoscopic removals of growths, whom I will see on the 13th of July.

After that appointment, I immediately called to make an appointment with my GI doctor because I am confused and at a crossroads...while I have a clear understanding of the two procedures, I do not know what to do.

All the while, my gastroparesis is becoming worse and worse...for me, it's the bloating...I am eating less, and less, and less....I bloat even when I consume water....I participated in a 5K mud run this past Saturday and, after I came home and viewed some of the photographs, I was shocked...I looked like I weigh about 30 pounds more than I do; I had about three rolls on my abdomen, which was hugely protruding...and all I had consumed that day was coffee, a bit of water and a gel packet pre-race...emotionally, I finally went off the edge Saturday night and have begun to shut down on people...yesterday morning, I was in tears because I am angry at the situation, angry at my body and completely frustrated...people do not understand, and I really don't expect them to...one of my girlfriends, who is aware of the situation, said that I do not give people a chance by not communicating...well, i have communicated to her and all she said was "I was bloated that day, too"...so, now, I don't want to speak to anyone.

I will get through this, like I always do...it's just that, right now, I am soooo angry and want to isolate myself from everyone...does anyone else go through periods like this?

As always, thanks for listening...


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6/2/10 6:08 P

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Dear Nikegirl,
If I were in your shoes, I would make the same decision that you have made and opt for surgery #2. It sounds initially more invasive but overall less stressful. I agree that having the onus of cancer hanging over your head every six months is a burden that no one needs to carry if there is another option.

As far as dreaming and thinking about death, that's normal. You have been dealt a double whammy. The diagnosis alone is traumatic. The surgery, while not as complicated as an organ transplant, is not a simple tummy tuck. You are being realistic. However, don't dwell on the idea of death. Plan for your future. Yes there are things that could go wrong during the surgery, but that is true with what I'm facing on Friday (an exploratory laparoscopy). To help me keep from dwelling on the negative possiblities of the surgery, I have made some exciting plans for the middle of July when my recuperation is complete. You have dealt with your problem for so long, it might be a good idea for you to do the same thing. Schedule your surgery and then plan a "fling" for right after your recuperation is over. (DON'T go right from recuperation into work!) You have earned it.

For someone who is reticent to share their feelings, it is important to keep doing so. This is a good place to do it. I will add my prayers along with Lucky so that you will find peace during this whole process. Take care. I will be off-line from Friday the 4th through the 11th because that's how long I've been told I'll be in the hospital. But I'll be back then to offer support as you need it after that.

Hugs,
Lynda
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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
6/1/10 9:10 A

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G' morning, y'all..to Linda - please never feel like you are intruding...i try to reply to everyone personally who responds to something i post....Lucky is right; if it were not meant for public reading, we wouldn't post here - LOL!...you are so kind to offer a shoulder, and to a complete stranger, at that...a very gracious and kind gesture; thank you SO much!!

To Lucky; i can't thank you enough, m' dear...to answer your question, I met with my GI doc last Friday morning to discuss surgery options...the first option is to go in laparoscipally (sp?), scrape the growth off, put in a couple of stents to keep pathways open and keep them from swelling shut; go back in a few days to get the stents out; go for an endoscopic catscan and biopsy every six months thereon out to make sure it didn't come back and turn into cancer - all the while holding my breath and praying that I don't have cancer.

The hell with that crap.

The second option is a total curative surgery...I will be in the operating room 2-3 hours (if all goes well) and have part of my stomach, pancreas and duodenum removed...I will be in the hospital for about 4-7 days (if all goes well)...I will be out of work for one month and out of the gym for two months...the drawbacks of this surgery are as with any surgery; possibility of pulmonary embolism, blood clots, etc...there is a remote possibility that I could become diabetic due to partial pancreas removal...however, once the surgery is done, it's done...no going back and holding my breath every six months.

I have decided to opt for the second surgery; i have too much in life to do...i am not willing to walk around holding my breath for the rest of my life praying that, every six months that I go for an endoscopic catscan, I don't have cancer.

I will be going back to Yale and my doc called the surgeon last Friday, so I will be touching base with the surgeon this week, hopefully...I am terrified, truth be told, of this surgery and have been having dreams about death, which doesn't help...but i don't have a choice.

We have interns at work for the summer so I will be scheduling this surgery ASAP so my position can be at least partially covered...the fall tends to become busy again so I want to get it done by end of August.

I will let y'all know when I go in.

Can't thank you enough for listening; you have to remember that, for me, it's HUGE for me to show vulnerability - something I have been working on...so, talking to you is a bit therapeutic for me...:-).

Cheers-
D

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/29/10 3:59 P

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NikeGirl,

Your strength shines through like the sun on a clear day. emoticon

I hope the surgery is successful and that you'll keep us informed as to how you're doing. Do you know yet when you'll be having the surgery done?

You're in my thoughts and prayers every day!

Hugs,
Lucky


Edited by: LUCKY-13 at: 5/29/2010 (16:01)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/29/10 3:34 P

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Lynda,

Please don't feel as if you're intruding! If it wasn't meant for everyone to read or know, it wouldn't be on the thread.

This is the only team I've ever been on that people are truly open with their feelings, emotions, reservations and questions. Our motto should be, "There's no such thing as TMI." LOL The more open we are, the more we stand to learn and help each other, but anytime anyone would prefer more privacy, there is always Spark Mail or personal email: SequoyiaSun@bellsouth.net

Your offer to help is welcomed and we all appreciate your advice and words of wisdom!

Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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5/29/10 1:32 P

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Nikegirl, I almost feel as though I am eavesdropping on a personal conversation between you and Lucky about your cancer and your surgery. I am not a cancer survivor -- just a survivor. I will not offer advice, but I am ready to listen if you ever need to talk and Lucky is not available. Take care and best wishes on your surgery and your recovery.
Lynda
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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
5/27/10 10:13 A

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G' morning, Lucky...Like you, I don't think I am afraid to die (I could actually use the sleep...LOL!) - but I am not READY to die...over the past few years, I have finally reached the point of happiness and emotional freedom, am pursuing my dreams and have begun living life as I want to instead of how others want me to; if that makes any sense...actually, I was pretty shocked at the emotions that I went through as I tend to think I can deal with just about anything life throws at me; I may not get through rough patches gracefully at times, but I do get through them...hahahaha!...I am much better now emotionally than I was a month ago, as now I know I do not have full-blown cancer - yet...but the thought of yet another goddamn surgery (along with the ever-lasting side-effects) pisses me off.

For me, I tend to withdraw during really rough patches because I am not the type of person that likes to talk about something constantly, or dwell on it, to process it...many times, I find that, if you tell someone, they start to CONSTANTLY ask about whatever it is and offer remedies and such...when I flared a few years ago with the rheumatoid arthritis, I had a girlfriend become, unfortunately, diagnosed with fibromyalgia about 1.5 years after I flared...her way of dealing with it was to talk about it DAILY and fire off emails about her doctors appointments, "cures" that she would find on the internet, her symptoms, etc., etc...the same thing that had brought us closer (both having a chronic condition) was the exact thing that blew our friendship apart; I became extremely stressed out and depressed from focusing on the issue on a daily basis...when I tried to distance myself from it, she noticed and blew up on me...the friendship eventually imploded...support groups don't work for me; same thing - people tend to be negative and focused on one thing only...so, i say all that to explain why I just crawl into my shell for awhile...:-).

My hat is off to you, my dear; I had no idea (nor should I have) that you are a cancer survivor...your personality shines through your writing a bit - I can tell you are a strong person...but, even the strongest of us tend to crack a bit under pressure such as that!...I am so sorry to hear of your father's passing - it sounds like you have been through a bit of hell yourself thus far this year.

I am saddened to hear of your stomach polyp and hope that it is not cancerous...it's ironic how strong, yet fragile, we are...and isn't it funny (ironic funny, not funny funny) how we put our jobs before our health?????..stop that!!..

I am sure that I will be fine - it's just a bit of a speed bump in life.

Cheers!
D


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/26/10 9:52 P

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Wow! I'm really sorry to hear about the diagnosis and hope that the surgery is a success. I know how it is to have cancer and have it turn your world upside down. Like you, I went through a wide range of emotions, which is typical to grieving, not because I was afraid to die, but because I knew my health as I once knew it was gone, so I can understand the emotions you went through, and they are phases of grieving that follow no rhyme or reason and revisit us whenever they want.

I'm still using the Domperidone and am having some limited success with it. I'll feel like I've found some other things I can digest, like eggs, and then the next time I have them I'm back to being sick again.

My Dad was never able to understand what GP was all about - until his last few weeks as he was suffering from pancreatic cancer (yes, there's a lot of cancer on both sides of my family). He died April 16th, and during his last 3 weeks GP was a constant visitor.

My last endoscopy showed a stomach polyp and I'm going for a stomach ultrasound to see how deep it is and will take it from there. I'm waiting until August because my work is now approaching the busiest time of the year and I don't have a back-up at work. I'm not thinking cancer, but I will most likely have surgery to remove the polyp.

Please let me know how you're doing. You seem to be handling it very bravely, but if you need someone - like a cancer survivor - let me know. It took two surgeries and four months of radiation, but hopefully next year I'll be in remission! I'm going to be thinking healing and positive thoughts for you, and even saying some prayers.

Sending lots of hugs,
Lucky



Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
5/26/10 12:59 P

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Hey, Lucky...it's been awhile since I have been on Spark...life is a bit complicated these days...no, no luck with the Botox...actually, the bloating is worse than ever now; ridiculous.

Now, that being said, when my GI went down into my innards to inject the Botox, he saw a "growth" and biopsied it...he never said anything to me until a few days later, when I get a message from him to call and review the results of the scoping, which I thought was odd since there are no results from a simply injection.

Well, he believed that I had cancer; i have an adenoma of pappillae of vater...i went through a couple of weeks of intermittent sadness, anger and rebellious denial...i then went for an endoscopic catscan at the cancer hospital at Yale...their biopsy showed it is a pre-cancerous growth which, if not removed, will certainly turn to cancer...I have researched it a great deal and it appears to be a rare cancer (gee, shocker there with my body!!)...

I go in to speak with him on Friday to discuss surgery and the side-effects of said surgery...it looks like it is a major surgery which includes removal of part of my stomach, liver and pancreas....I will be in the hospital for five days, out of work for three weeks and away from the gym for two months...the time off from the gym is freaking me out..LOL!

So, I have been a bit withdrawn over the past few weeks, thus my absence from Spark.

I have only told three people, and now my friends at Spark...this is something that people really don't know how to respond to and it is scary as hell, so I tend to keep these things to myself until I have dealt with them

That's the update...thanks for checking in on me...

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/22/10 3:18 P

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NikeGirl,

How are you doing? Any luck with the Botox?

Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
4/21/10 12:30 P

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i think it could last like six months-ish...thus far, i don't feel any different...i will give it to the end of the week.

thanks for your good wishes!

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
4/20/10 6:37 P

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I hope it works for you!!!

How long is it supposed to last?

Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
4/20/10 12:40 P

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Well, yesterday I had the Botox injection...my doc said that, if it works, I should see a difference in 2-3 days...he is optimistic, I am not so much at this point...cross your fingers...

I was done in, like, 30 minutes...it's amazing how fast you go to sleep under the anesthesia and then how quickly you wake up...i would rather stay asleep for a bit..LOL!

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
4/3/10 1:52 P

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Here's a clinical study on the botox injections and GP:
clinicaltrials.gov/ct2/show/NCT00372
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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
4/3/10 12:52 P

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NikeGirl: Sorry I've been so busy that I'm just now getting around to looking into the Botox and GP issue. I'm interested in it also so I Googled it and found this on the Mayo Clinic Site:

"Injecting a nerve toxin to allow the stomach to release food. Botulinum toxin (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment."

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
3/31/10 11:27 P

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I haven't heard of anyone having the procedure, just read some articles on it. Will they have to repeat the injections?

I hope it works for you! Please keep us informed.
Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
3/29/10 3:24 P

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Well, I have been scheduled to have a Botox injection to see if it can relax my pyloric muscle so that food can pass through more easily...the Domperidone didn't work and I am pretty frustrated...slowly, my food consumption is lessening and lessening...I am not willing to try the pacemaker yet as it is so new and experimental.

My GI doc said that he has had decent success with the Botox, so cross your fingers, y'all.

If anyone has had this procedure, please, let me know your experience.

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