On the Verge of Needing a Feeding Tube

[lindaneall]

I had posted a while back on "Epigastric Discomfort" and had been put through numerous studies here in Orlando. I was sent to the motility center at Shands in Gainesville and a Gastric Emptying Study was repeated. I finally have the answer after 2 months of rapidly declining weight and inability to eat.....Gastroparesis.  I am crushed!

I've lost 16 pounds in 2 months and am down to an alarming 105.5 pounds. I'm 5"10" and look like a skeleton. Unfortunately, I'm only taking in about half the calories needed to even maintain my weight.  Three days ago the GI doc at Shands started me on Azithromyacin, but said, "I don't think this is going to help in time. I think you are going to have to come up here and be admitted and have a feeding tube."  YIKES!!! She encouraged me to push the caloric fluids and try to eat small frequent meals.

It's hard, though, because I've lost my appetite, and I feel so nauseated and full after a few bites. I am deeply discouraged. She also said that this autoimmune disease needs to be aggressively suppressed. She said, "Your gut is already paralyzed. It will get worse. We don't want you on a long term feeding tube".

I had been on 1 Plaquenil right before this, but quit because it caused a queasy stomach. I needed to see if it was the Plaq. that was causing all the belching and discomfort. I knew it was time for the dreaded "Big Guns".  Sure enough, yesterday my rheumatologist started me on a low dose of weekly Methotrexate injections. Today I've felt a little nauseated, deeply tired, and just "weird".  I am SO sensitive to meds.

Unfortunately, before starting the Methotrexate,  I had labs and my WBC are 2.   Mine usually run 2.9-3.1.  I was alarmed. This is the lowest they've EVER been. I know that Methotrexate can drag those lower. This is scary to me. He did start me on 1 mg. of folic acid.

Also, all these strong meds are processed through the liver. I found out 2 months ago during an ultrasound that my liver has a heterogeneous pattern. The radiologist asked if I had hepatitis. No. But I do have positive antibodies for Autoimmune Hepatitis. So far my liver function tests have been fine. Still, I'm worried how these strong meds might effect it.

Last week was such a tough week all the way around. Two days before getting the Gastroparesis diagnosis (which requires a strict diet), I found out from another doctor that I have a very high sensitivity to wheat, rye, spelt, eggs, and moderately to almonds. Before the GP diagnosis, I picked up some gluten free healthy bars. Now those are out because of all the dried fruit. This has all been a lot to adjust to and I am overwhelmed right now.

All I can say is.  Sjogren's isn't just dry mouth and dry eyes. Unfortunately, this has become a very systemic problem for me.  Thanks for all your prayers and support. 

Linda

[rnathans]

Oh Linda, I have been where you are now so I know what you are going through. I lost so much weight due to gastroparesis that I did have a feeding tube for about six months while being treated with big guns, in my case cytoxan. Plaquenil is not nearly strong enough to address organ involvement from SS and frankly I am not sure whether methotrexate is either. Gastroparesis is often an autonomic neuropathy though it could be a vasculitis as well. Is your rheumy experienced in treating Sjogies with organ and nervous system involvement. This is crucial.

As to the low WBC I struggled with this too and it can be the result of an autoimmune process as well. There is a medication that can be injected if the white counts get too low though this may require a hematologist. My treatment plan was guided by my near and a rheumy but I got my treatments at a heme onc office and he monitored my counts.

If you do have to get a feeding tube find out where they plan on placing it. Feeding tubes are often inserted in the stomach but with gastroparesis they need to bypass the stomach and put it in the intestines. This is called a j-tube.

I am sure you are totally overwhelmed and devastated right now and probably weak and tired from poor nutrition. What I want you to know though is that it is now five years since I had a feeding tube, I am maintaining my weight, and gained some back (I went from overweight to underweight so I did not need to gain it all back). You can get through this and beat it, though initially it will be hard.

Sending hugs and prayers your way.
Ruth

[ohiolady]

Linda,

My heart goes out to you as I, too, was diagnosed with gastroparesis in June.  I have felt the same devastation you are feeling.  When I think about living the rest of my life with this, it can be quite discouraging.  I take Domperidone to help with motility.  Cleveland Clinic sent a prescription to a Canadian Pharmacy and that is how I obtain the medicine.  Domperidone is approved around the world but not in the United States.  

My heart goes out to you and I pray that things will settle down for you and you will stabilize and be able to gain some weight.  If you have any specific questions, please ask and I will try to help as much as possible.  Feel free to PM me anytime.

Ruth has offered you hope and great advice in the previous post.  My gastroparesis is not nearly as bad as the two of you describe, but I have a great deal of nausea and I know all about the abdominal pain.

Sending you a big hug.

Anna

[ohiolady]

I'm bumping this up in hopes that Daisy, Anita and Bonusmom will see your post.  They, too, have severe gastroparesis and will be able to offer some good advice.

Anna

[lindaneall]

Ruth and Anna,

Thank-you so much for your reply and encouragement. This is such an incredibly tough thing to go through, for sure. Ruth, I think my rheumatologist is pretty good in dealing with organ involvement. His name is Daniel Small, and he has been the speaker at some of the Sjogren's Syndrome Foundation conferences, as well as posting in the "Moisture Seekers". I have to drive 2 hours to see him.

The GI doctor at the Motility Center at Shands said that she would try me on Azithromyacin 1st (since that helps motility in both the stomach and small bowel), then Domperidone (which she said just helps the stomach) next if the Azithromyacin didn't help. If neither of those help, then she will do a small bowel manometry and check the motility of the small intestines. If they aren't working, then she said a J-tube wouldn't work (since it goes into the intestines) and I would have to be on long term TPN. I knew that long term TPN can potentially damage the liver. I groaned and told her about my funky looking liver and how this would be super bad news.

She said she has a strong sense that my small intestines are affected. UGH. I truly hope she is wrong about this one and that the meds will work SOON.

Anna, I'm glad you brought up the idea of seeing a hematologist re: the low WBC. I just mentioned to my husband this eve. about how it may be wise to see if a hematologist could get my WBC up into a better level if this continues.

It is so depressing to have the joy of eating taken away. Can either of you eat without discomfort now, or does your stomach still rebel somewhat when you try to eat? Do you have to follow the Gastroparesis diet if the meds are working for you? Ruth, are you on Azithromyacin or Domperidone to treat your GP?

Thanks again for your help.   Linda

[anita]

Thanks Anna for bumping this up...I had in fact missed it.

Linda,

I too have severe gastroparesis and have battled weight loss with it.  My empty test was only 4% after 2 hours.  My GI never even tried the azithromycin, he just went right to Domperidone.  I take the max dose, but find it works well....even for the bowels. 

I will add that diet is just as important as medicine.  I use what is called a mechanic soft diet.  Basically it means grinding up your food to aid the digestion process.   The meats are first on the list to grind up.   Also, stay away from raw fruits, veggies, and nuts...they are the hardest to digest.  The softer you make your food, the better you'll feel.  Of course, eat small amounts (which you're probably already doing due to nausea).

When I'm having a rough time, I use the Ensure drinks to make sure I'm getting good nutrition. 

One other thing is to avoid eating past 4-5 PM so that you limit the discomfort at night.  You can also eat "dinner" at lunch time to avoid a heavy meal later in the day.

This takes time, but once you find your comfort zone, you'll learn what you can tolerate and what you can't.

I wouldn't jump to the feeding tube until you've exhausted other options first. 

Good luck and if you have any questions, please ask.

Anita

[puccini914]

Hi Everyone, I don't have gastroparesis, but I have been having the same type of difficulty eating in regards to no appetite and feeling full after very little food.

I just wanted to mention that I have been supplementing with Boost High Protein shakes.  They taste way better then Ensure and seem to be a bit cheaper.  The taste factor is major.  I tried Ensure at fist and it was really bad, it was work to push myself to drink them, I'd sometimes end up gagging them down.  The Boost is quite yummy, but it smells like vitamins.  The good thing about the smell is that it keeps the kids from wanting to drink them.

Also the kids love Carnation Instant Breaksfast.  These are loaded with nutrition and a whole lot cheaper.  You can even get a much larger variety of flavors, the chocolate malt is my favorite. 

I'm so sorry you guys are suffering so much and I just pray that it is not the direction this is going for me.  I've had to put all my appointments on hold until DH is finished up with working out of town.  After reading these posts and other like them, I know that this is definitely not something to ignore or see as a great way to lose weight.  It really stinks, and I would love to eat a big meal and not feel sick afterward.

The last full meal I ate was September 14, it was my Birthday, my DH made beautifully cooked fillet mignon, topped with sauteed baby potbelly's reduced in red wine, with fresh Brussels sprouts steamed in butter.  It was wonderful, I ate it all, and felt sick later and stuffed for two days afterward.  At least it was a great meal to remember.

I hope that all of you can enjoy a meal like that real soon. Take care of yourselves and may you all find some kind of peace in everday.

Jennifer

[irish]

Linda, I can really understand your feelings of being hit by a ton of bricks. This is truly a lot to try to digest and remember. So many issues, so many meds, so many discussions, so many decisions.

I want to tell you to hang onto the knot at the end of that rope. You are being started on a big gun med---although, I too, wonder if the Methotrexate will do the trick. The cellcept and Imuran are 2 of the stronger ones.There are also some more that can be tried. And yes, they are right about seeing a hemotologist to work with your blood levels during this difficult time.

As time goes on you will hopefully regain some of your peristalsis and be able to eat more. If it was me I would give the new med a few weeks. Remember that they take time to kick in. Also, don't lose faith if improvement doesn't come fast. The other thing is that if the Methotrexate doesn't kick in or give you a glimmer of hope I would ask about a stronger med. Also, don't dismiss IVIG. This is infusion of immunegammaglobulin and it is given for certain disease processes.

Neuropathy problems is one thing that quite often responds to the IVIG. I would talk with your doc about this. If she isn't optimistic ask her for a referral for a second opinion. You need to see an immunologist or someone who does a lot of treatment of autoimmune disease and neuropathy with IVIG.

If you can hold off on the IP it would be good. If you can hold off on the feeding tube it would be even better. If you find that there are times that you need a feeding tube you also have the option of learning how to insert a stomach tube on yourself through your nose--known as a NG tube or nasogastric tube. Believe it or not, it is not that hard and they can train a person to do this. Sometimes people insert the tube and do their feeding and then remove it until the next time.

It is not very comfortable having a NG tube, but, if you are trying to buy time you would be surprised what strength you have within you to accommodate to unusual situations. Please know that I am praying for your situation.

EVen if you end up having an NG tube keep in mind that life will go on. YOu will be able to lead a life. Not what you planned, but still you will be able to do some things that you enjoy. I have a stomach tube on the edge of my horizen and I just choose to wait and wait. I have myasthenia gravis with some swallowing difficulty that has improved since I started IVIG. It truly is one day at a time.

Also, Anita is right about the Boost being better than the Ensure. Ensure just doesn't cut it anymore.Boost has a much more tolerable taste and consistency. Also, the liquid nourishment EQUATE brand at Walmart is not bad either. It is really good with a little ice cream melted in it. Good luck and let us know how you are doing. Irish

[BonusMom]

Dearest Linda-

I have been thinking about you so much these past few weeks, praying that things were improving for you following your visit to Shands.  I am dismayed at the thought of your needing a feeding tube, but if that's what is deemed necessary to keep up your nutritional status, please don't hesitate to have it placed.

Having done "well" with GP since January, I have managed my symptoms by eating smaller meals frequently throughout the day.  I have kept fresh vegetables to a minimum, but have eaten individual portions of fruit.  I've kept dairy to a minimum, but eat chicken, fish, rice, beans, etc.  Since I met you in April, I have intentionally lost 55 lbs. and I actually wish to lose another 20 lbs by the end of the year.  With GP, I gained weight, except when I was on an all liquid (Ensure) diet because all I ate was simple carbs.  I ate no fiber, no fat and no dairy as they all sat at the top of my stomach and made me feel full for hours.  It was the postprandial fullness that bothered me the most.  I had virtually no nausea, just a feeling of fullness 24/7 and horrible GERD.  Oh, and because nothing was going through my system, constipation was a horrible issue as well.

Fast forward to two weeks ago and suddenly I'm vomiting again and I've got nausea like no one's business.  Zofran and Miralax are two of my best friends.  All I can figure is that I'm going into an AI "flare" and this is my "heads up."  My warning sign:  hiccups.  I never have hiccups unless I'm having GI problems.  Now it's non-stop, just like the vomiting and nausea and breakthrough GERD--even though I take Aciphex daily.

I had labs drawn last week.  The ones that the lab didn't mess up show my WBCs are 3.0(L); EOS(H); PTT 32.4 (abnormal); Vitamin D25 Hydroxy 82 (abnormal).  No reference ranges are listed on my copy for some reason.

I take 4 mg folic acid daily so I don't know why my WBCs are low.  I started Imuran 50 mg on September 10th and increased it to 100 mg two weeks later and decreased the Plaquenil from 600 mg to 400 mg at that time.

I sure wish you were able to tolerate the Plaquenil and didn't have to take the MTX.  Have you tried Domperidone for digestion?  If I recall, it's similar to Phenergan but doesn't cross the blood/brain barrier, therefore, doesn't have all of the horrific side effects of Phenergan.  PM me and I will give you the address of a reputable website that you can order Domperidone from in Canada without a prescription.  It has helped many, many people, but isn't for everyone.

You may have heard of the Oley Foundation.  They have helped many people who are on tube feedings.  I would google them for some good information.  G-PACT is also a great support resource.  Has your motility specialist suggested a gastric pacemaker for you?  My motility specialist said I would be a good candidate but because nausea wasn't my chief complaint as of last January, I declined it as that is the stimulator's primary purpose.

I may reconsider the gastric stimulator given recent events.  I will have to see how long this episode lasts.  I am nowhere near your dangerously low weight, although I am as tall as you are.

Please keep us updated on how you're doing, Linda.  I am very concerned about you.

Lana

[BonusMom]

I've tried the store brand of Ensure--strawberry flavor--and liked it.    I've heard of some people who are really lacking in calories add Carnation Instant Breakfast to an Ensure or Boost to kick up the calorie count.  For me, I think they'd be too thick becasue I don't do well with puddings, mashed spuds and the like.  Yes, I know it's strange.  Give me a piece of white bread (toasted) with a little jam and I MIGHT be able to keep that down.

I've also purchased Yoplait Frozen Smoothies that you add milk to and whip up in the blender.  Since they tend to be thick, I add double the milk that they call for to thin them out.  I purchase the triple berry flavor at Costco--much more cost effective.

[SueAnn]

Linda,

I am glad your doctors are figuring this out!  You are never far from my thoughts.

SueAnn

[LizPetillo]

Would you provide more info on Gastroparesis.  I've never heard of it.

I've lost over 60 pounds since the end of April.  Not trying to.
I poop once every 7 days or so .. on average.
Any kind of bread, pasta, cereal etc flairs my symtoms.

How do you know if tis is Gastroparesis or someting else?

[anita]

Linda,

I'll respond to your PM separately, but a couple things may be helpful for all reading this post.

Any one having gastroparesis and/or celiac (especially both) and having significant weight loss should be seeing a nutritionist....no if, ands, or buts about it.  These are conditions that can make or break you in regards to both sustaining and quality of life.

We can make recommendations here on the board, but when you have lost considerable weight, it's best to get started with a nutritionist.  listening to our suggestions might be more helpful AFTER a nutritionist has determined what important vitamins/nutrients have been depleted and need to be addressed first...then focus on calorie intake and finding foods you both like and can tolerate.

Also, as for Domperidone.  Many (myself included) find it to be very helpful, but be extremely cautious about just ordering it from a place that doesn't require an RX.  If lana knows someone that can be trusted, then that's different.   There's a reason why scripts are required in most places.

I know the company I was getting mine from in Canada started outsourcing the script to a company in India who sent me something called Vomistop with not one word of English on the package.  Could have been perfectly good medicine, but I wasn't risking it.  I now pay a little more to have it filled right in Canada. 

Also, if you've discussed this with your doctor first and they are on board with using Domperidone, then they certainly won't have a problem writing a script.


Liz,

Gastroparesis is an autonomic dysfunction that decreases gastric movement/emptying.  It causes early fullness (satiety), nausea, etc.  It can be diagnosed with a simply gastric empty test (eating from eggs with contrast and laying on a table while being scanned over the next 2 hours watching the movement of the contrast).

Problems with breads, pasta, and/or cereal could mean celiac.  You should follow up with a GI for a work up for both.

Good luck all

[Daisy1234]

Linda,

Sorry I had been away from the room for a bit and didn't see this thread until now.  I am so very sorry that you are going thru this.  I also too have severe gastroparesis and have lost 22lbs in the last 4 months unintentionally.  I been managing to get thru the nausea and have been able to slow down my weight loss lately.  I only lost 2lbs in the last 4 weeks so that's a huge improvement for me.  The feeding tube option was also discussed with me by my drs and its very scary.   Do your doctors have you on all of the anti-nausea meds like Nexium, Ranitidine even gravol, which I also take?  Are you also on domperidone at a maximum dose and taking probiotics?  For myself, I was still feeling the bad nausea and loss of appetite until I got the botox injections into my stomach and esophagus under endoscopy and that is where the major change too place in my case.   I had the gastro give me a major dose of Versed and a shot of Fentanyl to get me thru the endoscopy as well.  Please feel free to PM me if you wish and we can talk offline in detail.  You have all of my empathy and sympathy for what you are going thru.

Biggest Hugs,
Daisy

and grateful thanks to Anna (Ohiolady) for bumping this post too so I could read it

[lindaneall]

Wow. You all are so great.

BONUSMOM-- I am SO sorry that you are going through a nasty health crises now, too. I am grateful that I don't have the nausea (much) or vomiting with this (yet, anyway). It's interesting that you have hiccups. Belching is my nemesis.  What is strange, though, is that the other day I tried to exercise just a bit because I am loosing major muscle mass. It created the same symptoms that I have when I try to eat. Tremendous belching, nausea, and a "pit" feeling in my stomach.

I asked the GI doc.at the motility center about this.  She said she knows this can happen, but isn't sure why. I haven't tried Domperidone, yet. She likes to start with Azithromyacin, but is fine if this is something I would rather try. She just requires an EKG beforehand to rule out Long Q-T syndrome (something like that). I had an EKG last month, anyway, when I thought the epigastric pain might be a cardiac issue. I will PM you to find out the website of Domperidone in case I want to try it down the road.

My GI dr. didn't mention anything about a gastric pacemaker yet. Nausea isn't my chief complaint, either. I just can't eat very much without my stomach hurting and feeling like it is blowing up like a balloon. Then the yucky belching begins. I did also read in a research article that said that prokinetics don't help with epigastric pain and the feelings of early satiety. These are my main issues!!  Have you found this to be true?

ANITA--thanks for your reply. I'm also posting what I sent you so other can see. I have been emailing the dietician at the motility center at Shands and she has provided me with some info. However, I think it would be helpful for someone to help plan out some meals/snacks to make sure my nutrition is balanced. I have also met with a Naturopathic doctor and had 5 IV Vitamin/Amino acid infusions over the last 2 months.

Something helpful that my GI doctor recommended is a product called Peptamen. It is a feeding tube solution that is in a carton and can be also drunk. It has 237 calories and is a complete nutrition. It is very expensive, and I found it the cheapest online at Walmart. Nobody sells it locally in Orlando. That arrived a few days ago. The taste reminds me a lot of Ensure. I certainly don't like the sicky sweet taste, but I know at this point I certainly can't be picky.

DAISY---I'm sorry you've lost so much weight, too. Maybe you should try the Peptamen that I mentioned above. I was glad to hear about this and at least know that I was getting complete nutrition. I am on Azithromyacin, but will try the Domperidone if this doesn't work. I  am taking probiotics.