I'm looking for support, and suggestion on how to deal with my dysphagia and other GI symptoms. I am completely overwhelmed, and quite physically sick. Any suggestions or support would be most welcome, as I feel really alone with all of this.
Some background: I am a 31 year old woman and other than the GI stuff and asthma, I am in good health. In 2006 I had a Nissen fundoplication for severe GERD. The Nissen was wonderful, and it changed my life. No more GERD! I had no complications. So, I was GERD free from 2006-October 2012.
In October, I started having heartburn symptoms, so I started taking ranitidine and omeprazole. I had started a new job with a long commute and thought that stress was causing the heartburn. In December, I started feeling like I had a lump in my throat and I began to have difficulty swallowing solids. I went to my doctor, who upped my omeprazole dose.
Later that week (early Dec.) the swallowing got worse, and I could only handle liquids. I ended up in the ER, where I had a barium swallow that was normal, barring some pooling of the barium liquid in my lower esophagus. No one could tell me if that was normal post-Nissen.
The following week I had an outpatient endoscopy showing mild esophagitis and the doctor had to dilate my lower esophageal sphincter with the scope. She said she met some resistance pushing the scope through, but after she popped it through, she didn't have any trouble. I scheduled an appointment with the GI doctor, who couldn't get me in until 1/11.
Things went okay for a few days, then I woke up one morning and couldn't swallow water. So, we headed to the ER for visit number two, where they did an emergency endoscopy and noted that I now had a small ulceration (although not technically an ulcer) in my stomach. But, they were able to pass the scope easily through my LES, and my esophagitis looked a little bit better.
During the 2nd scope, they took biopsies of my esophagus and stomach. They came back normal except that the one from my stomach showed changes of some sort, indicating that my stomach was trying to heal itself from something.
I continued to have problems eating and drinking, and was scheduled for a manometry and 24 hour ph study. This was a miserable experience, and I ended up in the ER for a 3rd time during the ph study, because I was horribly nauseated and dehydrated. I am still waiting for the results of these studies.
I have been to urgent care for fluids, and the ER a 4th time with chest pain and dehydration. Somehow my labs have been normal, and when they did the endoscopy they said my Nissen looked good.
I am now reduced to water and gatorade to stay hydrated. I can't seem to tolerate milk, or anything warm like broth.
I've lost 15 pounds since the beginning of December. I am almost hoping when I see the GI doctor this week, that they will give me a feeding tube, so I can get some sustenance. However, I am 5'5'' and 154 pounds, so I'm guessing they'll say I don't need one.
I don't know what to do. I am completely miserable and I'm supposed to start teaching in late January but there's no way I can do that in my current state. I am feeling completely demoralized. I also feel that my healthcare system failed me as it has taken me over a month to see the GI doctor (going this Friday).
(I just saw this after replying to your post on another thread about my experience with dysphagia/GERD/hernias, etc)
Wow, I'm so sorry that you've been having so many problems! I really hope that your GI appointment will give you some answers - I actually switched gastroenterologists a couple of years ago, when I suddenly started being unable to swallow anything solid and the one I had been going to said there was no way they could see me in the next 3 months (the new one got me in that week, and I had surgery for my first paraesophageal hernia within the month). It is frustrating when you are having such severe symptoms and you can't see someone. And I'm not sure what they will say about an NG tube, but I am 100% positive that they will not say that you don't need nutrients (and if they do, get to another doctor quickly!). I had to start drinking Boost (with loads of phenergran... I couldn't drink Ensure because it made me even sicker) before my latest surgery because I was losing so much weight (prior to losing weight I was about 142 lbs and I'm 5'3", so losing some weight wouldn't hurt me normally) and they wouldn't have been able to do the surgery had I continued to lose weight (I lost 10 pounds in a little less than a month and had lost a bit before that since I started having the dysphagia). I'm guessing drinking those wouldn't be an option for you (but if you have severe nausea, I HIGHLY recommend getting an RX for nausea meds from your GI doctor to help you get some things down - phenergan/Zofran have been lifesavers for met he past few months), but all that to say, nutrients are EXTREMELY important, especially if there is any chance that you're going to be having surgery again soon (your body can't heal from surgery unless it is nourished).
Did the GERD meds actually help? When I started having my symptoms in June/July, the first thing they did was up my reflux meds, figuring that something might have gotten irritated from a round of vomiting I had. 60mg of Prevacid and 2gm of sucralfate a day didn't help in the slightest. Sometimes dysphagia can feel incredibly like GERD. Enough so that I thought my initial symptoms were a return of my reflux. In reality, nothing was getting out of my stomach and back into my esophagus because things weren't properly getting into my stomach to begin with. So I could feel things that were getting stuck in my esophagus or very slowly moving out, and to me it felt much the same as the sensation of acid being in my esophagus.
With the barium swallow, did they have you swallow a pill? Did it get stuck? On mine (with the most recent round of severe dysphagia), the liquids were slow, and the pill was quite firmly lodged (enough so that drinking the thick barium wouldn't make it budge).
I know that the dehydration is awful. Last January, I had a large paraesophageal hernia (the 2nd) and it occurred quite suddenly and completely prevented me from eating or drinking anything (but not from dry heaving in case I was thinking about drinking anything) and I was in and out of the hospital until I had surgery 12 days later. I was finally able to get down tiny amounts of liquids at a time (1 or maybe 2 oz sometimes), so I just tried to sip little bits ALL of the time. I also started juicing and was able to get down little bits of juice at a time which made me feel SO much better to be getting at least a little nutrients (my favourite was carrot/apple/lime juice). During my last (June-December 2012) round of dysphagia, I could get liquids down, so I made smoothies and loaded them with protein powder, fruits and veggies. I still had a hard time drinking them, though, so I might have only been able to get down one a day (which is why I started having to try to drink Boost - you could get calorie-dense enough varieties, that even if I could only drink 4oz at a time, I could get a couple of hundred calories). I haven't ever tried drinking it without phenergan, though. =/
Good luck! I really hope that you're able to get some answers SOON! And let me know how it goes - I've been through numerous rounds of severe dysphagia and various subsequent surgeries for 5 diaphragmatic hernias, then converting my Nissen to a Toupet, widening the hiatus, and removing some scar tissue from previous surgeries. If you do need surgery again, you want someone who really knows what they are doing (sometimes numerous surgeries is inevitable, like in my case, but you still want to lessen that chance as much as possible).
Thanks for your reply, InTheShelter. Reading your experience is helping me feel much less alone in all of this.
If my GI appointment goes poorly on Friday, I am definitely switching doctors! I wanted to stay in this health system because it's the same one that did my Nissen, but I shouldn't have to be miserable for a month and a half while waiting for an appointment.
For awhile I was drinking Carnation Instant Breakfast with whole milk to get calories and nutrients, but I've been finding that my stomach is having a hard time with dairy. It also seems like if I drink more than a few sips at a time, it just sits in my stomach, and then I reflux it up into my mouth (gross, sorry). I'm wondering if I have some sort of stomach motility problem (gastroparesis) and I'm going to mention the possibility on Friday at the GI clinic. Dairy also seems to irritate my esophagus, in that I get really phlegmy and have a hard time clearing it out of my esophagus.
I do have Zofran and Phenergan (total lifesavers!). Zofran is my go-to anti-nausea med, and it has been so helpful. I'm glad it's helped you, too.
The GERD meds seemed to have helped with the acid, but not the reflux if that makes sense. Then again, I'm still getting sore throats from what I believe is the acid (throat hurts after refluxing). I started with 40mg omeprazole/day, plus ranitidine as needed, but had to go off of it because it gave me heart palpitations. I'm currently on 30mg lansoprozole/day and still taking ranitidine as needed, with little to know improvement. I will definitely be mentioning this at my appointment. I'm also taking carafate as needed, but it makes me horribly nauseated, so I haven't been using it much. I do think I'm having reflux, as well as the dysphagia.
When I did the barium swallow, I did not swallow a pill. Just the barium. And they saw that the liquid was very slow in going through my esophagus, it pooled above my LES, and then went down very slowly.
This week, I've been doing well with clear liquids, most of the time. I've been trying very hard to stay hydrated. I've mostly been drinking water and gatorade. Dairy is a no-go, and I tried broth yesterday but it seemed to irritate things, because it was slightly warm (I have found that warm stuff does not go down well, but ice-cold things do). I'm a bit hesitant about juice because of the acid in most juices. My throat/esophagus is already sore and inflamed and I don't want to irritate it more.
I'm hoping to avoid surgery (I'm really hoping all I need is another dilation...or something) but I am at a very good place for GI surgery and I have good health insurance, so if I have to have surgery, I know it will be okay. I just want some answers!
I will definitely update after my appointment Friday. Thanks so much for your support!
I'm glad that I can make you feel a little less alone, glitterbot. I felt so incredibly alone when I was facing this because I wasn't ever able to find *anyone* else who had experienced the same thing and even my excellent surgeon who has a lot of experience with thoracic/abdominal surgeries had never seen a case like mine where someone had all tests be normal except the Upper GI/barium swallow that obviously showed things getting stuck (I was also his first 4th surgery in that exact area - unusual to begin with, but extremely unusual for my age (25), he said). Anyway, I know how frustrating and scary that is, but I know that there are other people who go through it too!
I'm lactose-intolerant, so I can't drink milk anyway, but I was surprisingly able to drink soy milk okay. I actually hadn't been a huge fan of soy milk until I was on a liquid diet and for some reason, it was something that I could get down okay. If dairy is bothering you, you might try dairy alternatives like soy that will still give you some protein but might not make you sick (or some sort of nutritional supplement drink - I recommend the chocolate ones because I could at least get them down with phenergan - I tried a vanilla and the phenergan did nothing). If cold things go down better, go for it! I've been off and on bothered by temperature, but I would drink my Boost with ice to make it a bit easier to drink. Some hot things can be hard, I think. Since I haven't had any erosion in my esophagus at the same time that I've had any of my severe dysphagia, I didn't have a problem with the juice being too acidic. It was definitely a lot less acidic than, say, store bought OJ. But find what works for you and try to get as much protein and as many calories as you can to help stay nourished and slow down the weight loss.
Since the dilatation did help, it could be promising that another one would be more helpful. That is what they told me before the first. Even though my first dilatation didn't help me at all, they tried a second time (the first time they used bougies, the second was a balloon dilatation). Since yours helped, maybe that's a good sign. I know that wanting to avoid surgery is good (and I agree!), but do keep in mind that you do want things to get better. Before I actually had my last surgery, I started wondering if I should have surgery at all or if I should try to live with it. But I had been living with it for months and and to realize that it was getting worse, not better, and that I didn't really want to stay on liquids the rest of my life. Plus, the stress on my esophageal muscles of working so hard to try to get things out of my esophagus that had gotten stuck there could, over time, cause more problems because I could develop motility issues. So if you DO end up needing surgery (and hopefully you won't!), it sounds like you're in a good place to do so. Oh, and I know what it's like wanting to stay in the same health system, but switching hospitals can be okay too. I had my first 2 surgeries at one hospital in Atlanta (good hospital, not huge), then switched to the largest health system for my second 2, and I'm really glad that I made the switch, even though I was happy with the surgeon who did my Nissen and the first surgery thereafter. I absolutely LOVE my surgeon who has done my last 2 surgeries, and even though with my last surgery, I considered going up to Boston (I have a sister who is a surgeon there) to see one of the top surgeons for this particular thing, I was really comfortable staying with my surgeon because I trust him so much. So go with your gut. Staying in one healthcare system is great, but if you find someone you love somewhere else, don't be afraid to switch.
Good luck tomorrow! Fingers crossed that you get some good answers...