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
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
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
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
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
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
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
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 ;D
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
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.
Linda,
I am glad your doctors are figuring this out! You are never far from my thoughts.
SueAnn
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?
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
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 :)
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.
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
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
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
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
Navydad,
Can you ask to have a gastric emptying test done? It wouldn't hurt to rule out gastroparesis. Just a thought.
Anna
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.
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.
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
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
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
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
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. :-[ :-[
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 .
Quote from: ohiolady on October 30, 2010, 07:51:28 AM
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
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!
Quote from: ohiolady on October 30, 2010, 07:51:28 AM
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?
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
If you do have other AN issues, which ones?
As to other AN issues, my thermostat's broken.
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
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?
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
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 ;D
Quote from: anita on October 31, 2010, 01:20:46 PM
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 :)
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.
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
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
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.
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
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
:)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...