Upper GI symptoms

[valleysangel92]

Hi all.

As a lot of you know I recently spent time in the hospital (2 weeks) with a suspected crohns flare. Apart from a few deficiencies that are being taken care of my bloods came back clear and so did an MRI scan. I had the scan after 5 days on IV steroids so there may have been some healing.

When I was admitted, my symptoms were mainly abdominal pain, D and vomiting.
I started getting really bad reflux when I was in the hospital, I've had it before, but not like this.
I'm also getting a sensation like food is getting stuck in my throat and a feeling of pressure and some pain at the bottom of my sternum, roughly where the end of the esophagus would be although I'm aware pain can be deferred.

At first, I thought the reflux was a side effect of the steroids, but I'm actually finding that it's getting worse as im tapering down and it's getting harder and harder to eat without feeling like it's building in my throat. Ive also vomited again today for the first time since leaving hospital.

I have an appointment tomorrow with my new GI that I was under when in hospital and will be mentioning all this then. I was just wondering what experience people here have with these sorts of symptoms and what treatments worked for you? I'm already taking omeprazole at 20 mg and although it's helping some it's not making getting the food down much easier and everything I drink gets sent halfway back up.

Thanks all.

 

[Cat-a-Tonic]

It sounds like reflux, but with the food getting "stuck", there could be a motility issue in either your stomach or esophagus. I know there's a test to check esophageal motility - I believe it's called the esophageal manometry test. I haven't had it but my GI has mentioned it to me. I have severe reflux/GERD myself, and I have a hiatal hernia. I think my esophageal motility is fine, but if I ever decide to have the hernia operated on, my GI said that I should have the manometry test first (apparently, if you have abnormal esophageal motility, the surgery would make things worse rather than better).

So there could be a few things going on - besides that, you may also have a hiatal hernia which could cause or at least contribute to the reflux. You also may have gastroparesis (in which the stomach doesn't empty quickly/properly). When was the last time you had an upper endoscopy? It may be time to think about having another one, if it's been awhile.

If your reflux is severe then 20 mg Omeprazole may not be enough. I was on 40 mg omeprazole for awhile but even that lost effectiveness for me. I'm currently on 40 mg Nexium (esomeprazole), 300 mg Zantac (ranitidine) twice daily, and Tums (calcium carbonate) as needed. That sounds like a lot but that's what it takes for me to keep my reflux under control. If you do take reflux meds long-term and/or high doses, just make sure to supplement calcium (magnesium and vit d aren't a bad idea either) as pretty much all the reflux meds are bone robbers.

I hope that helps! Good luck, I hope you can figure things out and get it under control quickly.

 

[valleysangel92]

Thanks cat super helpful.

I saw my GI this morning and we've doubled the dose of omeprazole, so I take 20 twice a day because my issue is that it doesn't help for long enough. I've not had an upper endoscopy since I was diagnosed with coeliac at 14, one was mention a year or so ago but nothing was done about it.

I'm definitely in a Crohns flare, my fecal cal came back as 'very very high ' and I've started on pentasa while I wait for a lower scope. I'm slowing my Pred taper as well and will follow up with the GI in 4 weeks.

I've tried ranitidine in the past and it didn't do anything for me really, but then I was told the max dose was 300.. So maybe I wasn't having enough?

I have vitamin D supplements, they've got me on 1600 ui 2 x daily, but they don't like giving me calcium supplements. I have a problem where my 'calcium receptor ' doesn't pick up when there's too much calcium in my blood and so it doesn't stop producing the hormones for calcium absorption like it should do and my blood calcium can go up to 2.89 or more (3.0 is emergency level here) . It's something that my endocrine team are banging their head together about. I think they will be starting me on alendronic acid the next time I see them in about November. I hope they figure something out, I've had osteopenia since age 17 and really don't want to take unnecessary risks with my bones.

I'd not thought about a hital hernia though.. It's definitely a possibility from what I know about them.. Am I right in thinking that they can be a result of being sick a lot? When my crohns flares vomiting can be one of my main symptoms.

Thankyou for the detailed reply

 

[Cat-a-Tonic]

Ranitidine isn't super strong on its own so that's understandable that it didn't do much for you. I take it twice a day, usually once before exercising and once before bed, just to keep things in check as lying down & exercising are two of the worst times for my reflux. There was a short period of time when I was only on ranitidine, but it wasn't enough on its own to keep things under control. After maybe 3 weeks of being on just ranitidine by itself, I had a dream one night that my reflux was going crazy and I was super nauseous and felt awful. Then I woke up and realized it wasn't just a dream! That was a pretty miserable experience and I refuse to only be on ranitidine by itself after that! But using it as an aid to my "main" reflux med (Nexium) has worked out pretty well.

As for hiatal hernias - mine is kind of a mystery. My GI says it's "small and sliding" meaning it's not always causing symptoms and shouldn't cause severe symptoms. But, my GERD is severe and I seem to have symptoms often, even when the hernia is not contributing. I fortunately don't seem to get vomiting as a symptom, neither the GERD nor the IBD cause me to vomit often. Having said that, I do get frequent nausea (probably from both the IBD and the GERD/hernia) but I'm one of those weird people who just hates to vomit, and I stubbornly refuse to vomit unless I'm given no option. So I guess I can't quite answer your question, as I'd likely vomit more often if I was one of those "just vomit and get it over with and then feel better" type of people, but I'm not.

That stinks about the osteopenia. Since you're in a flare, I presume you're not well enough to do weight-bearing exercise? That's what I do to keep my bones from crumbling, I try to lift weights as often as I can (plus other exercise like yoga, bike riding, etc). But I am in a flare lately as well and I haven't been to the gym in a little while myself. If you can get the flare under control, see if you can do some gentle weight-bearing exercise maybe with light hand-weights. That kind of thing is great for muscles as well as bones (I lost a lot of muscle mass and probably bone mass too due to flaring/being on Entocort a few years ago, and have been lifting weights ever since to try to correct that!).

If you're concerned about the severity of the GERD, there is a test you can have. It's not super pleasant - it involves having an NG tube in for 24 hours and eating your reflux trigger foods (if you've identified any) and just basically trying to cause a bad episode of reflux so that the NG tube can measure how high in your throat the acid gets, how acidic it is, how many episodes of reflux you have, etc (the NG tube is hooked up to a little computer/hard drive thing similar to the pill cam). I had that test about 2 years ago, and my result was shocking. I knew my GERD was bad, but the test revealed that it's even worse than I thought. In 24 hours, I had 48 separate episodes of reflux, and the longest single episode lasted for about 5 hours! The test revealed that when I'm lying down, I reflux more often than not. And I forget the exact number, but something like half of my episodes of reflux reached the top of my throat. My hospital gives a score from 0 to 100 - 0 means you're normal, no reflux, and 100 means you have the worst reflux ever. I scored a 95! The test is called pH impedance if you're interested in asking your doctor about it. It was definitely enlightening for me.

 

[valleysangel92]

Hm that would explain things.. Don't you just love the things doctors forget to mention. Wow that sounds horrid! I've thankfully never had anything quite like that from reflux.

I know my dad had one when I was younger, but his didn't need surgery..he does smoke and drinks beer quite often though. I hate vomiting too, but my body refuses to give me a choice.

Currently, I'm supposed to rest as much as possible, I've recently been diagnosed with fibromyalgia just to add to things, so I'm trialing treatments for that. Exercise is supposed to help that too, but I've been told not to start yet as my joints pain and fatigue have really flared up with the crohns flare. Once things are a little more settled I want to start a gentle exercise plan. I really love walking and we are surrounded by mountains, I've grown up walking them and I can't wait for my joints to settle so I can get back up there, it's literally opposite where I live so it's free exercise in the fresh air. I also have these exercise bands that I got when I did physiotherapy. I have three different difficulty levels, you stand on one end and then pull them up in front of you or out to the side.. That's weight bearing isn't it?

I'm not too concerned just yet, but I think I will ask for more investigation if things don't improve with higher omeprazole and lower steroids.. I've never heard of that kind of test before, it doesn't sound fun but it does sound very interesting and informative. Thankyou!

 

[Cat-a-Tonic]

The mountains sound lovely! I had to google about resistance bands as I wasn't sure - this link indicates that they're a good strength-training exercise, so they should help muscles as well as bones. (Sorry, it's from a menopause site which obviously you don't have yet! But it's got good info about exercises for bone health.)
http://www.menopause.org/for-women/menopauseflashes/bone-health-exercise-is-a-key-component

That's actually how I got started with regular exercise as well, my physical therapist also had me use resistance bands. When that went well, I decided to try lifting some very light weights to see how my body responded. Fortunately that went well (I was in remission at the time so I'm sure that helped!).

My hiatal hernia doesn't need surgery right now either (my GI offered it, but he also said he doesn't think it'd do me much good since my hernia doesn't seem to be the main source of my symptoms, and I agree with that). Apparently hiatal hernias are pretty common in older people, but in young people (I'm 34 so young-ish I guess) it's far less common. But, hiatal hernias are pretty common in the IBD population from what I've read so that's the likely explanation for why I have one.

Yeah, that reflux dream-coming-true thing was really awful! I woke from that dream at like 2 AM, had to run for a puke bucket (fortunately didn't need to use it, but it got very close), and had to sit bolt upright and sip water and take antacids. Finally after about 2 hours of that, things calmed down enough to where I felt like I wasn't going to barf. That was a really miserable night though!

 

[valleysangel92]

They are awesome although I'll have to set myself limits, it's very easy to get carried away up there. That sounds good, haha, everything I've seen about bone health seems to be for the menopause!

I had physio at 14-15 and still have all the exercise sheets and things somewhere. I have been told that if I want I can have physio for my fibro, which I might look into when I've started uni and know my routine.

I've heard they are more common in older people, and I guess it makes sense that they are more common with IBD too. Is your GERD pretty well controlled at the moment?

That really doesnt sound fun! I've done a few 2-3 am sprints to the bathroom myself, and ours is down stairs, racing your gut is never good.

 

[Cat-a-Tonic]

That's funny, I've recently been re-offered physical therapy myself (I went about 4 years ago due to hip arthritis). Rheumatologist was clueless and couldn't figure out my arthritis, so my GP said I can go back to PT if I want to. The weird part is, my hip pain is way worse in the winter, particularly when it's bitterly cold and/or snowing. So I may go back to PT in the winter, but not for the time being.

Yes, my GERD is reasonably well controlled at the moment - I don't really notice it that much (it sort of acts up a little bit all the time, but it has to get to a certain level for me to be bothered by it, and most of the time it isn't at that level lately). My IBD is the thing that's out of control right now - I had been taking Entocort, and m GI said that I could stop taking it if I was feeling well. I was feeling well, so I stopped taking it, and I flared up like 3 days later. Ugh! So I'm back on Entocort and trying to get back to feeling well, but still kind of flaring.

Yeah, I had read somewhere that hiatal hernias sometimes form as a result of too much straining on the toilet. I tend to have more d than c, so I didn't think I did that much straining, but I guess I did enough to cause a small hernia. And I guess that's why IBD'ers are more likely to get hiatal hernias, more toilet time means more likelihood of hernia or something like that.

Oh dear, a downstairs bathroom and an upstairs bedroom! That's no good. We only have one bathroom in our house, but it's just across the hall from the master bedroom so it's not too far to make a dash to. It's kind of hard if we have people over though, just one bathroom gets kind of complicated when multiple people are involved!

I'm really jealous of the mountains, they sound lovely. We don't really have any mountains here, we're in the mostly flat northern/middle part of the US so there are some hills but nothing like mountains. Although, when I'm trying to ride my bike around my city, the bigger hills can definitely feel like mountains! Ha ha.

 

[valleysangel92]

I find things get worse in the winter too, specifically the bottom of my back and my hips, so perfect timing for me getting back into uni. We're hoping that by then things will be well controlled with the amitriptyline and I wont notice so much of a deterioration.

Urgh, my previous consultant was convinced my stomach issues 'would never come back' so didn't put me on maintanence medication, so, hello flare. My new consultant seems much more clued in, and looked like he was about to have a fit when I said i'd been told I was fine. In fairness, the previous doc was a liver specialist, not an IBD one, and just got landed with him because my original specialist never has time to see me. Thankfully my new consulatant and all of his team are the total opposite and seem like they'll bend over backwards for their patients. When I was in the hospital on the gastro ward, one of his registrars (Sophie) over heard one of the elderly patients saying she wanted ice-cream at lunch, but she asked a bit too late and missed the trolley, so Sophie went to the canteen in her break and bought her a proper magnum one with her own money. I thought that was so sweet, and really shows she cares for her patients, I tend to find a lot of the consultant is reflected in the doctors under them, plus both sophie and my consultant seem genuinely concerned for me . Gosh im waffling now..

Hmm I guess that would make sense.. I know we're more at risk of normal hernias for that reason, especially once we've had surgery.

I know the feeling of one bathroom to many people, there used to be 6 people living in my house, thankfully before I got any IBD symptoms, or that would of been a nightmare!

 

[Cat-a-Tonic]

So you're on amitriptyline specifically for arthritis? Can I ask, what dose are you on? I am on 25 mg myself - my GI put me on it because he hoped it would "calm" my bowels, but I haven't really noticed anything in that regard. Honestly, I don't think it's helped my arthritis either. I stay on it though because it helps me sleep, and it also helps prevent my migraines. I hope it does more for you than it does for me!

Oh gosh, 6 people in one house with one bathroom! Eek! Right now it's just me and the hubby (my brother lived with us for awhile but fortunately he's got his own place now), but even so, when hubby goes into the bathroom and takes awhile in there, I start to get nervous. At some point when we have the money to do so, we're going to remodel our basement and add a bathroom down there. That will be a massive relief when we get that done!

That's really sweet about Sophie buying the ice cream with her own money for her patient! It sounds like you've got a great gastro team now. I remember seeing a thread of yours recently about being in the hospital - is this team one you've just acquired from that hospital stay?

As for maintenance meds, I had to beg my GI for them. His line of thinking was that amitriptyline would be enough on its own to keep my guts in remission. I was like, I don't think so! So finally after some arguing on my part, he agreed to put me on Asacol, and that kept me in remission for about 2 years. But then they stopped making regular Asacol in the US, so he switched me to Asacol HD. I couldn't break down those big tablets though so they just went right through me undigested, and that's when I first fell out of remission - that was just over a year ago and I'm still trying to get back into remission. So I agree with you, having a good maintenance med is vital!

 

[valleysangel92]

I take it for fibromyalgia, I started on 10 and now I'm on 20 and I'm finding I've had quite a good improvement in most of my joints, my swelling has disappeared, my mobility is much better and I can sketch again which is something I'd not been able to do for months because my hands were just too sore. I think part of the improvement is the warmer weather we're getting though, and I've not been as active as I usually would be because of my gut having a hissy fit whenever I try and do something, plus I'm not sure if the steroids have done more for the swelling, so it'll be interesting to see how things are when I'm off them. It's made a huge difference for my headaches too, I think I've had 3 since I've been on it, when I had been getting week long headache 2-3 weeks out of a month. Have you ever been offered pregabalin? It's supposed to be really good for long term pain, I haven't tried it myself but it's something that keeps getting mentioned to me to try if amitryptiline fails me.

It was certainly... Interesting.. I'll be sharing a house with 6 people in university, but there's lots of bathrooms and my bed room has an ensuite, so that will make things so much easier.

I've never seen a doctor do something like that, I almost got up and hugged her because it really made the lady happy and that was so nice to see. It's such a shame that doctors like her get dragged down by all the bad ones. I spent two weeks there in total, yes the teak I have now is from that, and they are soooo much better for me. I've made a point of personally requesting to stay under this team, at first the consultant thought it would be awkward for me, since his clinics are in a different hospital to my normal one, but it's actually closer to my home, it just means getting two buses instead of one, which is totally worth the care, and the hospital he uses for clinics generally runs to time better too which helps.

Hm, that's a strange one, I've heard of it being used for IBS and to calm the gut, but I don't see how it would stop inflammation, especially on the lower doses we take. I started pentasa yesterday while I wait for my scope with the hope it stops me getting worse as I taper Pred and controls things a little, then we'll chose the long term plan based on what the scope shows. I had all the bloods for the immunosuppressants while in hospital, so I know that he's been considering those too.

 

[Cat-a-Tonic]

I have not been offered pregabalin and I honestly don't know much about it at all, so I think I will do some research on it. Thanks for the suggestion!

I think the thing about my GI is, he seems to think that I have both IBD and IBS (I disagree, I tend to think IBS is essentially a made-up catch-all that's used too frequently for any and every type of bowel symptom). So I think that's why he put me on amitriptyline in the first place, to calm the supposed IBS. I'm still not fully diagnosed so that makes it difficult to argue that I have IBD but not IBS. I almost certainly have some form of IBD, but it's been elusive to diagnose. Still, I respond to meds such as pred and Entocort - I've had multiple doctors tell me that those meds only work on inflammation, so they wouldn't work on IBS but would work on IBD. My GI is a very "by the textbook" kind of person, so in his mind, if my test results are okay but I'm having some symptoms, then therefore it must be IBS. Like I said, I don't agree with that and I sometimes really have to argue my case that I feel what is causing my symptoms is IBD and should be treated as such! He's admittedly not the best doctor - but, I know that if I am just a huge pest to him, that he eventually gives in and gives me what I want. Not the best system, but it's been working for me so far.

That's great that the amitriptyline has been helping your fibro! Gosh, that sounds terrible that you couldn't sketch for awhile, I'm glad to hear things are improving now. And yes, I get those week-long headaches too, particularly when I'm on Entocort - they start in my sinuses and wrap around my head and go down into my neck. Amitriptyline isn't much help against the Entocort headaches, but it works for non-entocort headaches & migraines quite well. I used to get (non-entocort related) migraines with auras maybe once per month, and now it's more like once or twice per year. That's a definite improvement!

 

[valleysangel92]

No problem

I've encountered a few like that myself, it has to be there in black and white or it doesnt exist, which in the UK can be a huge barrier because docs are under a lot of pressure to be very very careful who they prescribe the more expensive treatments to. I'm of the same train of thought really, IBS seems to just be they're cover if they can't figure out whats really going on with someone. We know our bodies, so if we don't think it fits then that should be enough for them to try and do something more about it I think.

Those entocort headaches sound nasty, I actually had my first proper headache in ages last night, which I'm going to guess was the pred, since I never seem to get the same set of side effects each time I'm on them, I also have a horrible itchy rash on my arms. Wow thats certainly a good improvement .

 

[Daisy123]

I am on amitryptline for post neuralgia pain after shingles. When I had a flare over Xmas it was upped to 100mg (I was originally on 50mg). I find it helps me sleep and not get up during the night to go to the toilet. I have had acid reflux for a while, sometimes food comes back into my mouth hours after I have eat. I am on lansoprazole 30 mg in the morning which does help. I was diagnosed with reflux after an endoscopy. I suspect if it is really bad, then it probably is related to a flare.