On the Verge of Needing a Feeding Tube

[anita]

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,

This is a very interesting thread.  I have considered the botox, but have heard mix results.  I guess it's something that could be tried once to see if I benefit from it.  I have also thought of the gastric pacer.  Hopkins can do either of these, but I guess I'm trying to avoid "any" procedures these days with the increased cardiac problems. 

I manage fairly well with the max dose of Domperidone and diet modifications.  I can even enjoy (at times) many foods outside the diet.  I will say, there are "flares" of GP and it's through these rough patches that I once again consider other options.

I'd be curious to know how many have other autonomic dysfunction...other than the GP?   I have always been told, it's the autonomic neuropathy itself that's tied to the SJS, not just GP.  I have every aspect of AN.  From temp control, balance, BP, and heart rate, to now severe vasospasms (medium vessels in all skin & coronary arteries).  GP is just part of the gift (although a big part).

If you do have other AN issues, which ones?

[lindaneall]

Lana---Here is a link to the website that compares the Gastric Barostat to the MR.  MR stands for Magnetic Resonance.

http://radiology.rsna.org/content/224/2/592.full

[BonusMom]

If you do have other AN issues, which ones?

As to other AN issues, my thermostat's broken.

[ohiolady]

Anita,

From the very beginning of Sjogrens, I've had drops and spikes in blood pressure and also increase in heart rate but not extreme.  Though a blood pressure of 72/48 is pretty low, but I've never fainted.  I have mild neuropathy in feet and legs that comes and goes away for months at a time. 

The gastroparesis is constant, though I have days where I'm better than others and I, too, eat things other than a strict GP diet.

Hopefully, when I arrive in Florida I can find someone who does the botox.  I'd like to at least give it a try.

Anna

[anita]

Anna:  I'll be anxiously awaiting the post after you have it done...and whether it was helpful. 

Daisy & BonusMom:  Is there any initial discomfort from the injections itself? 

[Daisy1234]

Anita:

I've had the botox injections done on 5 different occasions and I have not felt any significant discomfort at all.  They are always done under endoscopy and I ask for extra sedation.  The last time I had the botox injections, I was in the middle of a gastroparesis flare and experiencing severe stomach spasms and my gastro gave me an injection of Fentanyl and then Versed and proceeded with the botox injections.  I went home afterwards and slept well and did not experience further spasming.

For the interest of the persons in this thread, another option that was presented to me was Electrical Gastric Stimulation.  Personally, I have not yet decided on whether to pursue this option.  This technique uses electrodes that are surgically or endoscopically attached to the stomach wall and when stimulated, trigger stomach contractions.  It was presented to me as an option for the extreme nausea that I experience.  But so far, I have found the botox injections to deal generally very well with the vomiting and stomach/esophageal spasming that are the worse of my gastroparesis symptomology.  I do still have the occasional gastroparesis flare, but nothing like I would be experiencing without the botox injections.

Good luck with your choices.
Daisy

[irish]

Daisy, It is good to hear that you are feeling better. Isn't it amazing that we can feel so lousy and just keep on beating the sidewalk so to speak and find doctors who can help us.

The problem now days is that autoimmune is so complicated and the issues we have require so many specialists. There is so much information out there that it is a huge challenge to keep on keeping on til we find the docs that can help us. But well worth it.

Also, just imagine having a stimulator And Botox that helps your problems. Just unreal and so welcome. Irish

[BonusMom]

Anna:  I'll be anxiously awaiting the post after you have it done...and whether it was helpful. 

Daisy & BonusMom:  Is there any initial discomfort from the injections itself? 

Absolutely no discomfort from the Botox injections as they are done under sedation--gotta love that Versed

[anita]

There needs to be a holiday for the scientist that came up with versed...LOL

I figured it was done under sedation, I didn't know whether there was any post-procedure discomfort.  Doesn't sound like it.

I will have to ask for more detail from my GI at Hopkins, but his first comment when we last talked about the gastric pacemaker/stimulant, "they haven't worked all the bugs out yet".  Like I said he didn't go into details, but he has always said it should be a last resort. 

If the flares keep occurring with more frequency, I will try the botox first, then pursue details with the pacer. 

Does anyone know someone that has had the gastric pacer put in?  I would love to hear from a patient (or even second hand) whether it was worth it.

[ohiolady]

Anita,

About a month ago, I saw on the today show, a young girl who had it implanted.  She had been throwing up for months and this was placed for her and she was responding well and back to tolerating solid food.  It had literally given her life back.

From what I've read, it is still very new and there are possible risks.  I think your GI's assessment of waiting till they get the bugs worked out, is good advice.

The botox, on the other hand, doesn't seem to come with a lot of risk.  And, it is only done twice a year.  I've had so many upper endoscopies done over the last 3 years, they are no big deal to me, at all.  If it would help with some of the symptoms, that would be great.  I am on a mission as soon as I get to Florida.  I, only, hope I can find someone who does it.

Will keep you posted.

Anna

[genko_b]

Hi Anita:

You asked who has other aspects of autonomic neuropathy. I've had the labile blood pressure, balance problems, unstable heart rate, and digestive problems (terrible nausea, vomiting spells, no desire to put food in my stomach - not to the point of calling it gastroparesis yet, but still very problematic). The blood pressure was the first issue that caused me to talk to doctors about it. No vasospasms yet.

And there are other things that may be related: double vision, tremors.

This is a very helpful thread, letting us know all the possible avenues for relief that may be used for the digestive problems. Just so sorry it is a result of so much pain.

Genko

[Deanna]

HI I'm new to the forum, i have screens and i have been on 1cc.  for 2 years and 600 mg. of plaguing..I recently have been hospitalized i also have had two Nissan wraps, which has come up done again. i found that out when i was hospitalized last week. But the Dr. think my sjogrens is affecting the motility in my esophagus, and is talking about a feeding tube..I'm terrified, but i cant stand the feeling of choking either. Can anyone that is going through this also please tell me a little about it. I will have to have the Nissan fixed again i go Tuesday.

[Carolina]

Ok, just read through this post, with tears.

This is the hardest thing, for some of us.  Others, get off pretty easily (me, I have to say).

I am in awe of both the degree of problems, and the degree of support and sharing that this forum provides.

I've been posting on a forum for autoimmune conditions elsewhere, and am constantly sending Sjogren's angels here to join us.

It's always something!  But thank god (or gods, or goddesses) there are always places and people like this to see us through.

Hugs

Elaine

[Bucky]

Deanna - I don't have any advice/suggestions for you as I have not experienced this, but I did want to welcome you to the forum.

As you have found out, if you do a search on the forum you will find other threads about topics that might be of interest to you.

The forum is made up of members from literally around the world - from all walks of life, and range in age from very young, into their 80's. 

For me, it has been a source of strength to come here and find others who are going through the same or similar experiences and can offer their experiences (although, we all react differently to medicines and treatments).  It helps to know you are not alone on this journey.

I hope you find this forum community helpful to you on your Sjogren's journey.

Good luck with your procedure on Tuesday.

Again, welcome.

Bucky

[Deanna]

  :)Thank you Bucky, im glad i found this forum for before we were lost about the disease..All i know it has changed my life drastically...