On the Verge of Needing a Feeding Tube

[rnathans]

Linda,

It sounds like you have knowledgeable doctors which is a big plus. I am so glad. I used to be on domperidone and zofran and followed the gastroparesis diet but I have been feeding tube free for over five years and no longer take these meeds. I can eat a normal diet except for large amounts of very high fat foods.

Certainly the first step is to try to manage your symptoms and stablize your weight through diet and medication. If that does not work I really do believe that treating the underlying cause of the problem, your autoimmune disease, is crucial.

My time being treated with cytoxan was not easy but it totally put my gastroparesis in remission so it was well worth it in the end.

There are options . I am here to support you in any way I can.
Ruth

[rnathans]

Bonus Mom,

I just wanted to leer you know that when I was on immuran it lowered my white counts much more than some of the other immune suppressants. I eventually had to stop taking it for this reason.
Ruth

[ohiolady]

Linda,

I do feel the Domperidone helps with early fullness and epigastric pain.  Since taking Domperidone on a regular basis, I rarely have the early fullness.  Some days, I'm just not very hungry but not that awful feeling like I've eaten a truck load of food after a few bites.    Nausea and epigastric pain are my chief complaints.   I notice we all differ on our chief complaints.

You asked if we ever have good days where we can eat a little more normally and the answer is yes, in my case.  Now, I can't eat like before but, at least somewhat normally.  I've been able to maintain my weight which is good because I was thin to begin.   I have Ensure around, as well.

I've said this is a cruel thing for me because I've ALWAYS loved cooking and eating.  I grew up in a southern family with good cooks and lots of eating.

Sending you a big hug.

Anna

[navydad]

My guts are so messed up that eating one scrambled egg sends my guts into spasms,, but this is all attributed to IBS,,, ya ok,, does that mean we wait till I weigh just a 100 lb before we consider something else,, I was at the GP last week and I am down to 130,, from 142, of course I was just told to eat more,, OK doc,,, heres my co pay for those pearls of wisdom

[ohiolady]

Navydad,

Can you ask to have a gastric emptying test done?  It wouldn't hurt to rule out gastroparesis.  Just a thought.

Anna

[Daisy1234]

Linda,

For me the botox shots are for the epigastric pain issue related to gastroparesis and I find that things settle down pretty good a couple of weeks after I get them.  It also starts to allow me to resume eating small meals again.  In my case the epigastric pain is so bad that I go into projectile vomiting spurts which last days and sometimes weeks at a time.  I was also told about a liquid meal supplement at my rehabilitation centre that could be taken orally and that 1 teaspoon would contain 100 calories of nutrition.  The dietician was singing its praises to me as it was very useful for the people who were having digestion issues at that hospital.  Unfortunately,  I can't remember its name but it was new on the market in Canada back in March 2010.

[BonusMom]

Linda-
I'm so relieved that you posted a follow up response today 

Have you had a gastric barostat done?  That's where barostat catheter is advanced into the fundus (while you're sedated during an endoscopy).  When you wake up the technician increases the distention pressure to measure the fullness in the abdomen.  Then, gastric compliance, accommodation and fasting volume are assessed.  The patient then drinks a can of Ensure (with the catheter down the throat it's a bit awkward, but it doesn't hurt) and the pressure, volume and accommodation are all measured post-prandially.

My gastric barostat was abnormal as the pressure remained the same and the accommodation actually decreased after drinking the Ensure when it should have increased.  Normally, the stomach is the size of a fist and expands to the size of a cantaloupe.  For some reason, my stomach was no longer expanding.  It's like I had gastric bypass surgery without having had the surgery. 

In addition to the gastric barostat, I also had an electrical gastrogram performed.  Electrodes are placed on the anterior (exterior) of the abdominal wall to measure slow wave frequency for 30 mins. of fasting and 30 mins post-consumption of a can of Ensure. 

My results showed that the electrical contractions in my stomach were no longer coordinating before or after eating meals.  I was short circuiting!

No wonder I was so sick---the food was just sitting at the top of my stomach, unable to move into the stomach because the stomach wasn't stretching and then the contents were unable to get ground up and being moved in to the intestines because I had no rhythym---all part of the autonomic process.

I would put money on your having an abnormality of a similar nature based on your symptoms.  If you've not had either of the above tests, I would ask for them so you can identify where in your stomach the problem originated.  Then your doctors will know better what your treatment options are......not just treat your symptoms.

I agree that you should be checked for Long Q-T Syndrome.

I had a Botox injection in the summer of 2008 which relaxed the pylorus and increased my emptying time.  But, since the Gastric Emptying Studies are so fickle anyway, I don't really know how accurate the follow-up GES was.  I was told that if I had good results with the Botox that perhaps a pyloroplasty might be a good option. I haven't discussed it since as it is a permanent "solution" and my symptoms are cyclic in nature.  Also, one of the potential side effects of a pyloroplasty is "dumping syndrome".  I have "C" now and I don't wish to have scope out the nearest bathroom prior to the consumption of any food if you get my drift......

At first, I didn't just vomit randomly.  I kinda vomited to make myself feel better--not stick my finger down my throat kinda thing but I felt so full after eating and the food was just sitting there and making me feel so uncomfortable that I "forced" myself to get sick to relieve the pressure.  Hence, no nausea.  Now, I have true nausea and have projectile vomiting (Linda Blair has nothin' on me) and sometimes vomit in my mouth if lying down (my apologies for TMI, but wanted to relay that my GP sx have changed considerably since 11/05). 

At first, I still had an appetite and stubbornly wanted to continue eating. The social aspects were very difficult to deal with--not being able to go out to dinner with friends or have extended family over. This time, I could care less about eating and can sip on my Ensure while they chow down unless I am experiencing nausea.

Linda, please find out where in your stomach your problem originates.  That will help the doctors (and you) determine the best course of treatment.

Thanks for the tip on the Peptamen.  I've not ever tried it, but will be on the lookout.

I think there are more people with SjS and GP than there are people with SLE and GP from my unscientific observations between this forum and a SLE forum I belong to.  There's got to be a connection with the GERD/no saliva issue which, by the way, I NEVER had a problem with until several months after I developed GP sxs.

My heart goes out to all of you that have digestive issues.  It can impact all facets of your life.


Sorry for the lengthy post, but this is one subject that I feel I can positively contribute to the forum on.

[ohiolady]

Bonusmom,

Do you mind if I ask why you didn't continue with the botox injections since it did provide some relief?  I know Daisy gets them periodically and it helps her epigastric pain and nausea, my two chief complaints.  I'm thinking of this for myself.  Having it done every six months and having improvement in my symptoms seems very reasonable.  I'm curious as to why you didn't continue with the shots.

Daisy, what do you think about the botox injections for me?  How long does the positive effects last? 

Anita, I'm curious as to why you haven't gone this route because I know you go to John Hopkins, one of the top five hospitals.

Thanks for your help.

Anna

[Daisy1234]

Dear Anna:

I think that I would certainly give the botox injections a try if I were you, there are very little trouble, only an endoscopy and I get mine every six months.  For me they have been a life-saver, literally I would have very little quality of life if it wasn't for this procedure.  The shots do wear off on me about the beginning of the 7th month.  Last year I let things slide until the end of the 7th month after my last botox shot because for some reason it had worked really well on me up until that point that made me think for some reason that perhaps my issue had "gone away" on its own.  But the laugh was on me as I went into a major gastroparesis flare and had a real time getting things back under control.

When I get this type of endoscopy with botox injections, they inject 300cc of Botox into both my pylorus and esophagus and I always ask for extra sedation.  My gastro uses Versed as his sedation of choice and I ask for the full dose not the light sedation that they normally give for an endoscopy. 

I truly hope that this works for you as it has for me.

Hugs,
Daisy

[lindaneall]

BONUSMOM----Wow! I had never heard of those other tests and will ask my doctor about them. Yesterday I was thinking that there was probably more to this Gastroparesis than just how long it takes food to empty the stomach.

  A few months ago I had printed out "A Registry of GI Motility Laboratories for Patient Evaluation" (Compiled and Maintained by The Am. Neurogastroenterology and Motilty Society). It lists all the locations of motility centers across the US, Canada, and Mexico and what tests are performed at each center.

The tests listed for these centers are the Esophageal Manometry, Esophageal pH monoitoring, Electrogastrography (EGG), Antroduodenal Manometry(Incl. gastroduodenal manometry and small bowel manometry), Anorectal Manometry , and Hydrogen Breath test. Not all of these are performed at each center. 

I believe the Electrical Gastrogram must be the EGG, and if so very few centers perform that. Unfortunately none do here in FL. No one listed the Gastric Barostat.  When I googled, "Which centers perform the Gastric Barostat", Stanford University popped up with Dr. Linda Nguyan's name. Is this where you went and is Dr. Nguyan the doctor you saw?

It is interesting that Stanford Univ. wasn't even listed on my GI Motility Center master list.  Dr. Nguyan's CV looked very impressive.  I had never heard of a "Neurogastroenterologist", but I think this is who I would need to perform these more specialized tests if they are indicated.

With your abnormal results, what is the recommended treatment?  Is Botox the best option?  Would that help you now with your persistent vomiting issues? Oh, I feel so bad for you. I hate throwing up and thankfully that hasn't been a problem for me yet. 

How long ago were your studies done?  I'm wondering if there is a more advanced technique that is done now at these centers to get the same results. When I researched it, there was some discussion about an MR procedure that was less invasive than the Gastric Barostat.  This is just all so interesting. Thank-you SO much for bringing this up.

Linda

[ohiolady]

Thanks, Daisy.  I will be pursuing this avenue for me.  Now, I have to locate a physician who does the injections.  We are leaving for Florida soon and I have an appointment with my GI on November 18th.  If he can't do this for me, I hope he knows someone who can. 

When I come back in the spring, I will have an appointment at Cleveland Clinic.  You would think they would do the botox injections. 

Daisy, after reading your posts, I'm kind of excited.  It makes sense the shots would help the spasms in the stomach and if helps with the nausea, that would be great.

Thanks so much for you help.

Anna

[kwolfsheimer]

I am so glad to read all of these posts!  I have severe nausea, diarrhea, and acid reflux.  My gastro doc is very sympathetic and aggressive, but my past rheumotologist says emphatically that SJS has nothing to do with any of this.

The diarrhea is under control with meds- for the most part.  I just had an endoscopy done and at first my doc said that he thought it might have been the gastric emptying.  He wanted me to take Reglun--which is a controversial drug that has a lawsuit out against it.  Then after consideration, he labeled it dismobility.  Of course, he spoke with my husband because I was knocked out.  It's been a few weeks and I'm still not better.

I'm going to look into some of these tests.  I've had the gallbladder emptying test but not the stomach. I'm not sure that is all of it because I am sick even i I don't eat.  It does give me some comfort to realize that I'm not just crazy.

Linda-- I've never had a feeding tube but you've got to do what you need to get healthy again.  If you've tried Ensure and other things, then maybe this is a necessary thing. 

[rnathans]

I find it so interesting that one rheumatologist can say that gastroparesis has nothing to do with Sjogrens while my rheumy and neurologist looked into Sjogrens as a possible cause of my GP. That is what led to my ultimately being dx with SS.

On another note, I am glad bottom has worked for some of you. It did not do anything for me. Again we are probably looking at subtle differences in what is causing GP .

[BonusMom]

Bonusmom,

Do you mind if I ask why you didn't continue with the botox injections since it did provide some relief?  I know Daisy gets them periodically and it helps her epigastric pain and nausea, my two chief complaints.  I'm thinking of this for myself.  Having it done every six months and having improvement in my symptoms seems very reasonable.  I'm curious as to why you didn't continue with the shots.

Daisy, what do you think about the botox injections for me?  How long does the positive effects last?  

Anita, I'm curious as to why you haven't gone this route because I know you go to John Hopkins, one of the top five hospitals.

Thanks for your help.

Anna

Anna-

I didn't continue with the Botox injections because I still had the post-prandial fullness, even after having the injection.  Maybe I wasn't vomiting as much, but I still felt "full".  I wasn't as faithful about keeping a symptom diary then as I am now, so I really don't recall why I didn't have any other injections.  I'll have to check with the motility specialist the next time I see the physician's assistant.  It may be in her notes.

I would definitely consider having the Botox injection in the pylorus at least once, Anna.  And, I would also ask about the gastric stimulator if your chief complaint is nausea.  Another term for it is Enterra Therapy.

Lana

[BonusMom]

My local GI couldn't do much for Gastroparesis, other than order a gastric emptying scan and tell me to eat smaller meals.  That's when I went in search for a motility specialist, a GI who has extensive training in digestive disorders, to further diagnose and treat me.  Truly, it's made all the difference in the world.  You may need to find a motility specialist to do the Botox injections and all other care and diagnostic studies related to gastroparesis.

If your insurance balks (as my secondary carrier did), you may need your GI to write a letter to the insurance company stating that they don't offer the specialized services/care that you need.  Now, if I get to the point where I need a feeding tube, my local GI could probably handle that, as well as an endoscopy/colonoscopy.  Everything else is handled by the William Snape, MD at California Pacific Medical Center in San Francisco.  It's well worth the 3 hour trip to see him or his PA-C, Shelly Gray.  I'm in good hands and I know it--especially after reading about how many others struggle with getting diagnosed/treated.  It was, in fact, Dr. Snape who asked me to participate in a gastroparesis research study and found all kinds of markers for AI diseases.  If not for the GP study and the blood draw, I'd still be considered to be an "idiopathic" GP patient.

When Shelly Gray, PA-C called and told me that they felt I needed to see a rheumy, I told them I wanted to see one that was familiar with GP and interested in the possible correlation between GP and AI diseases--whether it be in San Francisco or Sacramento.  They referred me to Nancy Carteron, MD (author of Body Out of Balance and was a guest speaker at the Conference in April), a SF rheumy, who has proven to be a godsend, and a physician who absolutely believes there is a connection between GP and SjS.

Interestingly enough, when I first went to CPMC and met Dr. Snape it was Nov. 2006 and I had reached my OOP max for the year, so I was trying to get all tests done before year's end.  Linda Nguyen, MD (now with Stanford) was working with Dr. Snape at the time (she had just returned from maternity leave) and was available to conduct my tests.  Talk about lucky!  She is an awesome and knowledgeable doctor.  I highly recommend her as well.  If you are somehow able to get in to see her or Dr. Snape at CPMC here on the West Coast for testing, I would encourage it.  They won't accept the results from other facilities.  The want to conduct their own tests under their protocols.   Yes, it may seem redundant and perhaps a waste of money, but there is a reason for it and when all is said and done, I agree with their thinking.

What does the term "MR proocedure" stand for?  I'd like to research that and ask Shelly some questions about it as it's unfamiliar to me.  Yes, the EGG is the Electrical Gastrogram.  I've also had the Hydrogen Breath Test done--which showed I had Small Intestinal Bacterial Overgrowth--twice.  Of course, I didn't have the "normal" sxs of SIBO.  And, I had the anorectal manometry done as well due to "C" which showed that I needed pelvic floor retraining (interestingly enough when my GP improves, I don't have issue with "C" and suddenly my pelvic floor works just fine.  Go figure).

I think you're on the right track, Linda!  Keep doing your research and asking questions!