# Stomach swells and painful after eating



## AgB621 (May 2, 2010)

I posted about this once before, a couple of months ago.  Things have only gotten worse.  Every single time I eat, no matter what it is, and to some extent no matter how much, my stomach swells up (with what, I don't know...air?  Gas?  Food that's not moving?).  It is the most insane bloating you've ever seen.  I feel like the walls of my stomach are being stretched beyond capacity and literally feel like they're going to rupture.  It's painful and uncomfortable and lasts for hours and hours.  I've woken up at 4 am, 8 hours after the last time I ate, still feeling bloated.  It's especially bad at night.  I feel like I have a brick in my stomach, and so weighted down I can barely move.  I mean, more often than not, I literally have to crawl up the stairs to go to bed because my gut is robbing the rest of my body of so much blood that I can barely walk.  In addition to the bloating, I am ridiculously constipated (after CT scan my doctor made me do a round of GoLytely because my colon was so distended with stool...it made NO difference in my condition), I take stool softeners and laxatives every day to almost no effect, and I feel like air and whatnot is moving backwards through my lower esophageal valve for hours after I eat.  Even drinking water will cause me to bloat and produce this movement of my lower esophageal valve.  I'm on probiotics (Align), digestive enzymes (bromelain and similase), antacids (Kapidex), anti-spasmodics (Spascupreel), peppermint oil capsules, and over the counter anti-gas (simethicone), anti-nausea, and antacid treatments.  (These were all added one at a time.)  NOTHING works.  There are nights when I literally can do nothing but curl up and cry.  It makes me feel like I want to die.  This happens to me EVERY SINGLE DAY and my doctors can't figure it out.  This is probably not related to my Crohn's, and above and beyond being simply IBS.  I can't eat anything without my stomach visibly swelling.  The bloating happens throughout my entire digestive system, but earlier in the day it clearly starts in my stomach.  I mean, you can literally see the outline of my stomach bulging out.  I can't live like this anymore.  Someone please please please give me an idea as to what this is and how to fix it!  I've never been so miserable.


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## ChefShazzy (May 2, 2010)

Oh my goodness...  I'm so sorry you are going through so much pain!!  It sounds horrible.  I am worried that it sounds like an obstruction, I've never had one but it might explain why you are in so much pain after you eat, and why you are in so much pain even hours later.  It certainly could be Crohns'-related.  

Did this CT scan check for any narrowing or obstruction??  You really must see another doctor if yours is not helping you...  something needs to be done.  And if it is an obstruction, doctors will do something to fix it...  nothing you can do at home.  What country are you in??  Please see a doc as soon as possible and let us know what happens!!


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## AgB621 (May 2, 2010)

Sharon - 
Thank you for your response and concern!  The CT scan did not show any narrowing or obstruction, though I've had similar thoughts.  I've been seeing a doctor of integrative medicine (he incorporates some alternative treatments) every 2 weeks but so far nothing has come of it.  My normal gastroenterologist literally just threw his hands up and said he had nothing more to offer me. 
I also had a normal gastric emptying study, but motility does seem to at least be a factor, considering the constipation.
Another thing I'd like to say, this is not a diet thing.  I've tried gluten-free and specific carbohydrate to no avail.  I don't eat processed, heavy foods.  I eat a very healthy, clean, unprocessed diet.  Small meals more frequently is helpful but by no means is even close to enough to prevent some pretty extreme misery.


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## ChefShazzy (May 2, 2010)

How long ago was your CT scan, and do you know where they checked?  Surely there must be other tests to run, such as a SBFT, I can't believe your GI said he had nothing more to offer you!  There must be answers...  Anyone else have some ideas?


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## Christy (May 2, 2010)

That is awful, hon!!!  I can't offer any wonderful advice, just do know that I felt something a little like what you are describing for a few weeks back in the fall as I was recovering from a bad intestinal infection.  I never could figure out whether to blame my misery on the bacteria or the cipro/flagyl combo they gave me to get rid of the bacteria.

(((hugs))) and (((healing))) for you!!


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## fateful_one (May 2, 2010)

AgB -

I am so sorry you are having such problems.  Your doctor sounds like a douche!  You need to get another one, cause it sounds like you have a narrowed section or something wrong with you stomach valves.  I hate when doctors don't listen and give up when it isn't the most obvious, easy thing for them to fix.

I too suffer from constipation and feel very full all the time.  I can only eat small snacks throughout the day.  If I eat too much I feel full for 8 + hours.  As a result I have lost a lot of weight because I can't get enough calories throughout the day. I am going to insist some new tests this week when I see my gastro.


Please update your post and let us know how things go with you


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## Crohn's 35 (May 2, 2010)

Sorry you are still having great pains and problems.   I know all about the bloat and every single thing you are taking to get rid of it.  Sometimes all that otc can make things worse.  Have a cupboard full of that stuff too.  I had pains last week pretty bad, 5 or 6 day flare and the only thing that helps to get rid of it is flagyl.. Have you taken Flagyl before, sorry you havent been on here for awhile.  A few days later my bowels go back to normal, and even still that I am on Methotrexate , Flagyl really helped me.  I dont take the full dosage, enough to get rid of it. Sorry but this is all the advice I have.  Wish there was some magic I could send you.  Let us know how you make out ok... and don't be a stranger!


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## AgB621 (May 2, 2010)

There is a test my gastro wanted to do but I just can't bring myself to do it (and I don't think it's the right one anyway).  He wanted to do a 24-hour pH test to see if my problem is severe acid reflux.  I will grant that when I don't take my Kapidex, I feel more awful than I can possibly describe, but somehow I have a hard time believing that acid reflux is causing all of this.  And the test sounds like the most awful thing imaginable...a thin tube that goes up your nose, down your throat, and into your stomach and monitors the pH for 24 hours...especially with all that valve movement happening, not to mention my phobia of things going down my throat like that (seriously, it's a phobia, not just a fear), I'm just not sure I can manage it.  But if someone here thinks it's really worthwhile and worth the discomfort, please let me know and I'll set it up.


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## AgB621 (May 2, 2010)

Jettalady - Antibiotics are next on our list of things to try.  That's one thing I haven't (though I have tried anti-fungals).  I'm just very uncomfortable with antibiotics, since they are what caused the C. Diff that led to the Crohn's in the first place.  Plus, they affect the absorption of my bipolar meds and pretty much guarantee I will get destabilized.  Not something I really want to do right before finals!  And immediately after finals (literally, the day they are done), I'm moving and starting a graduate program a few days later.  There's no good time to do any of this!


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## AgB621 (May 2, 2010)

Question: Would it be at all diagnostic to go on a liquid diet and see if I improve?  If I do, then that makes a bacterial overgrowth less likely, and increases the odds of it being a narrowing or an obstruction.  If I don't, then would that rule obstruction and make bacteria more likely?


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## Crohn's 35 (May 2, 2010)

Yes, it could help you or if anything give your bowels are rest, but I would try to avoid laxatives.  No one should need them on a daily basis. Clear fluids or ensure can help.  Bacteria can produce with or without foods.  At least with me it does.  I would try it, and in the meantime I would get another Gi, or someone with experience to get you some help.


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## Keona (May 3, 2010)

Hey, sorry you are going through all of this pain.  I can totally relate and it is very painful.  I am waiting to do a 24 ph monitoring in June for GERD.  One suggestion (and not sure why you're taking it) is to try to go without the peppermint.  Peppermint makes acid reflux a lot worse and can cause you to bloat a lot.  I don't know why but I have had to cut out all mint of any kind - especially mint gum as gum produces acid as well.  I'm not saying it will clear it up but it might help a little.  Have you tried prilosec?  This will stop production of acid in your stomach all together.  I'm not familiar with some of the drugs you are taking so perhaps one of them is already a PPI.

Good luck and I hope you get some relief soon.
Wendy
________
Extreme vaporizer


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## AgB621 (May 3, 2010)

Wendy- 
Kapidex is a stronger PPI than Prilosec. I've tried Prilosec and it isn't enough to control my acid. The peppermint I started only a week ago. It doesn't make things better but it doesn't make things worse either. My understanding of mint and reflux is that it's an individual thing whether it helps or hurts. For me, my acid seems really pretty independent of what I eat. I don't have food triggers but if I don't take the antacid, I'll be so horribly sick it's ridiculous, and it takes a few days to recover.


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## Liverpool FC (May 3, 2010)

I feel for you and really hope you can get sorted, unfortunately I can't offer any pearls of wisdom, but I will tell you that upon mentioning of a colonoscopy test, I didn't go near a doctor for nearly 2 years because it scared me so much.  I ended up recently undergoing it and the camera down the throat too. 

I genuinely do mean it when i say its nothing as bad as I assumed it to be, so perhaps if you can muster up the courage you may find the same thing too.  Don't get me wrong, there are many other things we'd rather spend our time doing, but if there is just a chance it could work out what is causing you this terrible time, then its definately worth doing.  Plus if it comes back with no results, at least you've tried it and your doctor can move onto the next step having ruled that out...

Is it gagging/choking that worries you?  If so, it might not be too bad considering it goes via your nose, at least your mouth would feel free to breath.

If you think you'd really struggle, is there anyway you could be relaxed such as medication or even something more far out like hypnosis or something.


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## Dustin (May 3, 2010)

Hi AgB,
  I have not had the problems you are going through, and I hope you find some relief soon.  I have had the pH test done, and it isn't bad.  I was around 15 the first time I had it done, and mid 20's the second time.  The description they gave me worried me before the first time, but going through it was nothing like the description.  My mind blew it way out of proportion needlessly.  I can't say it will find a solution for you, but sometimes it is better to rule out an option for sure, in order to narrow the possibilities down.

Hoping you find relief soon


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## Astra (May 3, 2010)

Hi Agb

I agree with LFC, You can ask for sedation, I had a camera down my throat too many years ago, and altho I puked up a bit over his hand, it was ok and the scope is too, I got to watch mine on the big screen. 
Sorry you're going thro a rough patch at the mo, hang on in there
xxx


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## Minxy (May 3, 2010)

Hi AgB ~ sorry you are having such a rough time. I have not suffered anything anywhere near as bad as your problem sounds, but something a bit similar maybe...... I hope this might help a bit......  

First, you mention you have severe constipation?  Can I just say that although the constipation may not be the primary cause of your pain and bloating, it is worthwhile tackling it as it might relieve some of the awful pressure in your gut. 

When constipation is very bad it needs serious measures to clear it, IMO. Laxatives by themselves are not always effective. So I would recommend finding a good, experienced colonic irrigation therapist, and having a few colonics. 
That will not only clear all the backlog in your colon, but will also encourage normal peristalsis, 'retraining' the bowel back into good habits. Once your bowel is working as it should, you will not need the colonics any more.

Home enemas can be quite good at clearing constipation from the lower part of the colon, but are not enough when the whole colon is 'stuck', and that's when colonics are ideal. 

Are you able to eat prunes ? They are one of the best sources of fiber when there is a severe constipation problem. I eat them everyday as a preventative measure.  Soak dried prunes in hot water for several hours so they are soft and full of liquid, and eat a bowlful twice a day. 

Also, try drinking at least 1.5 liters of plain water every day, as this is vitally important as a means of encouraging good bowel emptying. If you can't drink 
much at a time, carry a liter bottle and sip. Avoid tea, coffee and cola.

Re: the bloated feeling, and the feeling of trapped air or gas in your gut.  I get this badly if I eat foods that create intestinal gas. It is v. painful for days, feels as though I could explode, until it clears.  I don't really understand why it gets trapped and doesn't get expelled at either end, but it must be something to do with the inflammation in the small bowel (or narrowing due to scarring) preventing its passage, so it just rumbles around trying to find a way out, causing huge internal pressure. 
The worst offenders for causing it are potatoes, onions, sweet potatoes and most grains. Sugars are bad too.  I avoid all these like the plague. Through trial and error you may find other foods that cause trapped gas.  Even fizzy water is a nightmare for me. 

It does sound as though you might have some kind of a narrowing from a stricture or scarring. Have these definitely been ruled out with CT scan, or Wireless Capsule Endoscopy? They can be difficult to find.  

Your doctor cannot justifiably throw his hands in the air, when there is more s/he can do to help you. If nothing else works, as a last resort it would be worth asking to have a double balloon endoscopy so the small bowel can be looked at in detail.  These are done under a general anaesthetic, or at least under heavy sedation so you would not be aware of the tube going down your throat.  I am like you, I cannot bear the idea of a nasogastric tube, as I have a history of gagging and choking violently if anything touches the back of my throat, so I can understand you not wanting to wear a nasogastric tube for hours at a time. However it probably is nothing like as bad as we fear it might be  

best wishes,


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## dreamintwilight (May 3, 2010)

I agree with what everyone else has said about finding a new doctor who is willing to help you and trying some of the tests mentioned. If they can help you feel better they are worth facing your fears, IMO. And there is nothing wrong with asking for some medication to calm you down for said procedures as well.

I am worried you may have some sort of obstruction as well. Your symptoms sound eerily similar to mine when I had a partial obstruction just last week. Maybe you haven't gone into detail yet, but you should get a barium follow-through or CT scan with IV contrast. I am surprised they haven't put you on any type of steroids either to see if that would work. Keep us updated! I hope you find the courage to go through some of the stuff that's been worrying you so you can start feeling better soon!


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## AgB621 (May 3, 2010)

Thank you all for your suggestions!  To respond to a few of them:
The pH test is a 24 hour thing, where they put in the catheter and then I go home and go about my normal life.  The point is to see what kind of acid my stomach is producing, if it's excessive or not.  I can't exactly be sedated for it.
I am working with a doctor who hasn't thrown his hands up in the air, but he hasn't been able to help me either.  He referred me to another doctor but she's booked up until June so I have to wait awhile.
I cannot take steroids: I'm bipolar and the one time I was put on steroids, when I was 11 or so, they just about made me psychotic.  So that's not an option.
I had a contrast CT (drank barium) and it didn't show anything.  Is that enough to rule out a narrowing or stricture?
Thanks for your help guys!


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## dreamintwilight (May 3, 2010)

The scans that showed narrowing and fistulas for me were the upper GI series (barium follow-through) and lower GI series (barium enema).

Hmm...I understand your dilemma with the medications now. Was it prednisone that you tried for steroids? Forgive me if this is dumb for saying as I am not a medical doc and am just kinda thinking out loud, but wonder if Entocort would work since it's a non-systemic steroid and 90% of it is absorbed directly into the stomach. Maybe it doesn't matter though. That's a tough one! I would say give the pH test a try perhaps.

How long ago did you have the CT scan done? And did you have it when you were experiencing the above symptoms of painful bloating and distention? There could be a chance it wasn't bad enough to be seen then, but perhaps they would now if your condition has gotten considerably worse. Just a thought.  Or there could have been the chance that the barium didn't make its way down far enough to show strictures.


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## AgB621 (May 3, 2010)

The CT scan was done when I was having symptoms, but things have gotten worse since then.  I don't know if it would be worth another look or not, I suppose that's a question for the doc.  As far as steroids, I'm afraid to get near them with a ten foot pole.  It's possible that Entocort would work (it's been suggested more than once) but my reaction to Prednisone (I think that's what I took when I was 11), it was beyond extreme.  I would go into these semi-catatonic states, and when my mom would throw a glass of water on me to get me to snap out of it, I'd start hitting her and just going absolutely nuts.   I just don't want to get anywhere near them!  It might be worth asking my doctor whether an additional CT scan would be worth it though.  I'm probably going to try a round of antibiotics but if that doesn't work I think I won't have much choice but to try the pH test.


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## dreamintwilight (May 3, 2010)

Well good luck with your decision  Sounds like you've got several options now to pose to your doc and see what they think! Hang in there and keep us updated.


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## Keona (May 4, 2010)

Hey 
I was told it is possible to take something before the 24 hour ph monitoring.  Keep in mind the tube they use is A LOT thinner than a NG tube - just enough to attach a sensor to the end.  They would be able to give you something to calm you down enough but not so much to knock you out.  So long as you can still swallow as they will ask you to swallow the tube.  I have decided against any xanax or anything as it can affect the accuracy of the test.   Mine is being used as they want to do a fundo wrap - a surgical procedure on my esophagus.  They are using it to see just how loose my esophageal sphincter is as acid can creep up the throat.  If it erodes that esophagus - it can be dangerous/cancer causing - called Barrets.  Might be worth doing just to get an idea how high your levels are.

I hope you feel better soon


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## acg101 (May 4, 2010)

*Mayo clinic*

Hey, Feel bad that you can not figure out with your GI whats going on.

Generally,  if you did not have CD, it's probably safe to assume that you are experiencing  bloating due to indigestion from eating the 'wrong foods'. 
I am not sure where you live? but if you can go to a Mayo clinic, they bring you in for a full week of observation and testing by the best doctors out there, and its like being on a mini vacation with lots of test and collaboration.

best wishes


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## Minxy (May 4, 2010)

AgB621 said:
			
		

> The CT scan was done when I was having symptoms, but things have gotten worse since then.  I don't know if it would be worth another look or not, I suppose that's a question for the doc.  QUOTE]
> 
> 
> 
> ...


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## AgB621 (May 4, 2010)

Minx - So you're saying it could still be a stricture, even with a clean CT?


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## acg101 (May 4, 2010)

H, yes I believe its still possible even with a clean CT.  A barium test will most likely pick up a stricture. I never had the wireless capsule.


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## dreamintwilight (May 4, 2010)

I agree with the barium test! Though the wireless capsule test I've heard they don't suggest for people with possible strictures because there's chance of the capsule getting stuck. The barium would be a safer alternative.

Oh the 6 different x-ray type/CT scans I've had the ones able to pick up strictures were always with barium as opposed to other types of contrast.


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## AgB621 (May 4, 2010)

I already had a barium CT though.  It was clean.  My symptoms have worsened since then, but they were bad enough to warrant the test so wouldn't it have picked up on a stricture?


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## CodeBrown (May 4, 2010)

AgB...I had and still have the same symptoms as you...extreme bloating (I look pregnant at the top of my stomach, but the bottom does not protrude...it's weird).  I have had this for quite some time...in September, I began having projectile vomiting and had to go to ER.  A CT scan at that time (I had several before this time that were unremarkable) showed the narrowing in the terminal ileum and that is when I was referred to be evaluated for Crohn's.  I have to ask...was your CT scan done with an IV?  If not, it probably would not show...the IV is what puts the contrast in your system.  Also there is a more sensitive CT scan that is done for examining the small bowel called CT enterography.  Of course barium enemas and upper GI series, can also help with determining narrowing.  Can't comment on the pH monitor from personal experience...but from what I have heard, it is not that bad.  Just keep after them to find a diagnosis...I know it's frustrating...been there done that!


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## AgB621 (May 4, 2010)

CodeBrown - Oh wow you sound EXACTLY like me!!!! (Well, I haven't had projectile vomiting, but the bloating you describe is IDENTICAL.)  Please, tell me more about your situation.  Does the bloating happen as you are eating or later?  (Mine starts before I've even finished the meal.)  How long does it last?  How painful is the bloating?  Do you suffer from constipation as well?

I will DEFINITELY contact my doctor and ask for a contrast with an IV, mine did not have one, and perhaps some further tests as well to see if we can't find some narrowing.


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## acg101 (May 5, 2010)

The Ph test is not for everyone. Some people have hard time with a gagging reflex but its not too bad. Here is a website describing the procedure. Codebrown is right regarding the CT and only with IV would the scan pick up narrowing.
Do you live in the US?


http://my.clevelandclinic.org/services/esophageal_ph_test/hic_24-hour_esophageal_ph_test.aspx


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## saidinstouch (May 5, 2010)

If your stricture is in your colon and you didn't have a barium enema (which it sounds like you only did small bowl follow through where you drink the barium?) then it could have been missed.  An MRI with contrast or a CT scan with IV contrast/barium enema will show your colon a lot better. Also, if this doctor can't help you, find a well regarded GI clinic in your area that is a hub of leading experts in the disease.  Places like Johns Hopkins, Cedars Sinai, UCSF. Cleveland clinic, Mayo Clinic all come to mind off the top of my head and I am sure others here know of more.  If one is close to you, this sounds like a rare case with complications(no steroids allowed) that needs to be handled by the best of the best.

I might have missed this, but have you ever been on remicade or humira?  If not, even though your doctor can't see something physically wrong, it might be worth trying these simply because they can control many aspects of crohns that seem like they shouldnt respond.

Good luck and feel better I hope.  You are a strong person completing school and going to grad school right after even in the midst of this crisis you are facing.  Keep that in perspective and keep fighting.  Everyone tells me I'm tough for doing the same thing as you, but to be honest my pain has never come close to what you are facing.  You are a fighter and you need to keep fighting, you just need some new input from new doctors I think to find the culprit and get better!


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## saidinstouch (May 5, 2010)

As a side (embarrassing) note, I can't type at 8am apparently and made so many typos in my previous post I had to correct it made me sad just a little bit.

Also, if you don't mind sharing, where do you live so maybe someone nearby can recommend a doctor they know and trust or a GI clinic to attend?


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## AgB621 (May 5, 2010)

Saidinstouch-Thank you for your kind words and encouragement!  For the next 10 days I'm in San Diego but then I'll be moving to LA.  My mother actually has a connection with the Mayo clinic and is working on getting me an appointment but the next time I'll be free is August.  We can always cancel it if things improve before then, but I figured it would be worth having it in place.

I did only do the CT scan where I drank the barium, there was no IV contrast or enema.  I'll give my gastroenterologist a call and see if he can maybe order some more testing.  I will keep you all posted.


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## AgB621 (May 5, 2010)

Oh and no, I have not been on Humira or Remicade.  I was on Imuran but my liver numbers were getting wonky so my doctor took me off.  He wanted to do another colonoscopy but I refused (it just didn't seem like the appropriate test and I react very badly to the sedative, mood-wise...and the prep makes me sick, and I just didn't feel like it would be worthwhile), so in the meantime I'm on a mesalamine drug called Lialda.  He didn't want to do Humira or Remicade until he had a sense of whether or not the Crohn's had progressed, which was why he wanted to do the colonoscopy.  The truth is, my Crohn's is really really mild.  I'll have short flares when I get really stressed out, but the last one I had lasted a grand total of 3 days, hardly worth mentioning on this forum where I see people who suffer from flares lasting months.


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## acg101 (May 5, 2010)

AgB - you know your body best and I totally agree that you should be in charge of what kind of test is administered to you.
the Anti TNF drugs, like Humira Remicade and Cimzia are for severe cases which it does not sound from your description that this is your case.
good luck with the move to LA


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## saidinstouch (May 5, 2010)

remicade and humira dont have to be reserved for a progression of the disease, but can also be used and will be used by good doctors when your symptoms progress.  Sometimes you have to use them to improve quality of life even when your crohns itself doesn't appear to be so serious.  If it is ruining your life, then it obviously is a severe case regardless of clinical markers of the disease.


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## CrohnsHobo (May 5, 2010)

acg101 said:
			
		

> AgB - you know your body best and I totally agree that you should be in charge of what kind of test is administered to you.
> the Anti TNF drugs, like Humira Remicade and Cimzia are for severe cases which it does not sound from your description that this is your case.
> good luck with the move to LA


Compared to most around here I have never thought I had severe Crohn's and I have taken both Remicade and Humiara. I have never had surgery, blockage, only been to the hospital/ER once 15+ years ago etc. 

I originally took Remicade to heal a fistula about 12-13 years ago. I then took it again about 8 years later when 6-MP and Asacol stopped working. 

Remicade stopped working and I had weight loss and D and I switched to Humira and Methotrexate and now I feel fantastic again.


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## dreamintwilight (May 5, 2010)

According to my GI, the severity of Crohn's is based on how it presents itself in the way of fistulas, abscesses, and strictures. I do not by any means suffer from day to day problems like diarrhea and things, but my case is considered moderate to severe based on the fact that I've had abscesses, fistulas, and strictures. My colonoscopy was practically perfect too, minus some minor inflammation in the area leading up to my ileum (where I'm the most diseased).


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## CrohnsHobo (May 5, 2010)

dreamintwilight said:
			
		

> According to my GI, the severity of Crohn's is based on how it presents itself in the way of fistulas, abscesses, and strictures. I do not by any means suffer from day to day problems like diarrhea and things, but my case is considered moderate to severe based on the fact that I've had abscesses, fistulas, and strictures. My colonoscopy was practically perfect too, minus some minor inflammation in the area leading up to my ileum (where I'm the most diseased).


Had 1 fistula in 95'/96' and never had any of the other stuff. Crohn's only in my colon. Still taken both TNF blocker meds.


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## dreamintwilight (May 5, 2010)

Yeah, and I'm on Humira too (it was my first medication right away besides Entocort that was used temporarily)! I guess what I was trying to say was you don't necessarily have to feel like it's severe for it to be severe enough to benefit from the biologic medicines.


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## CrohnsHobo (May 5, 2010)

AgB621 said:
			
		

> Saidinstouch-Thank you for your kind words and encouragement!  For the next 10 days I'm in San Diego but then I'll be moving to LA.  My mother actually has a connection with the Mayo clinic and is working on getting me an appointment but the next time I'll be free is August.  We can always cancel it if things improve before then, but I figured it would be worth having it in place.
> 
> I did only do the CT scan where I drank the barium, there was no IV contrast or enema.  I'll give my gastroenterologist a call and see if he can maybe order some more testing.  I will keep you all posted.


Go to the IDB clinic at UCLA. I am in San Diego, and love my Dr. here (voted one of the best gasto's in SD several years in a row) but my Dr. here recommended me up there to get additional advice. 

I saw Dr. Hollander and he was great! 

This is their website: 

UCLA IBD


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## AgB621 (May 5, 2010)

Wow thanks, I will be very close to UCLA so I will definitely try to get a referral!  Can I ask who your doctor is here in SD?  I doubt we have the same one but I'm curious anyway.


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## CrohnsHobo (May 5, 2010)

This is my Dr. in SD. 

http://sandiegogastro.com/staff/robert-m-epsten-md/


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## saidinstouch (May 5, 2010)

Also, Cedar's Sinai is nearby in Beverly Hills and has a very highly regarded IBD clinic (normally rated top 10 in the country).  Not sure where UCLA ranks typically, but it is an excellent medical center so the doctors there will be excellent as well.


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## AgB621 (May 5, 2010)

Crohnshobo-you're not gonna believe this but we DO have the same doctor! I like him, even though I've apparently stumped him, lol. What a small world!


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## dreamintwilight (May 5, 2010)

AgB621 said:
			
		

> Crohnshobo-you're not gonna believe this but we DO have the same doctor! I like him, even though I've apparently stumped him, lol. What a small world!



That's awesome!


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## CrohnsHobo (May 6, 2010)

AgB621 said:
			
		

> Crohnshobo-you're not gonna believe this but we DO have the same doctor! I like him, even though I've apparently stumped him, lol. What a small world!



Very small world indeed. One of the reasons why he sent me to UCLA because he wanted another opinion on possible surgical and other treatment options after I failed on Remicade, 6-MP, Asacol, Antibiotics, etc.


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## acg101 (May 6, 2010)

CrohnsHobo said:
			
		

> Very small world indeed. One of the reasons why he sent me to UCLA because he wanted another opinion on possible surgical and other treatment options after I failed on Remicade, 6-MP, Asacol, Antibiotics, etc.



What I was truying to say that Biolgics are not only for severe cases, very little side effects and the bottom line is that we all know our bodies best and when its time to switch to a new med.

For me the antibiotics worked great for 8 years or so, and I was almost symtom free throughout.

AgB621 I hope your visit to the new dr will give you the answers you need


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## Minxy (May 11, 2010)

AgB621 ~ sorry I missed your question earlier about whether it could be possible to have a clean CT of small bowel but still have a stricture. 

Well it does seem to me it might be possible, as I have all the symptoms of chronic partial obstruction in the small bowel such as only being able to eat small meals, vomiting if I eat too much, post prandial pain and shortness of breath, not able to eat fiber because it gets stuck in the first part of the jejunem. 
These symptoms have been present for 5 yrs, following a 25 yr history of mild Crohn's.  

I can't really think of any other explanation for my symptoms other than scarring or narrowing.

I will probably be having the wireless capsule endocscopy soon.


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## acg101 (May 11, 2010)

Hi Minx, did you have a CT done? I hope you feel better soon
best ACG


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## Minxy (May 11, 2010)

acg101 said:
			
		

> Hi Minx, did you have a CT done? I hope you feel better soon
> best ACG



Yes. I had a CT scan 4 yrs ago, and an MRI with enteroclysis 3 months ago. 
Thank you for your good wishes.


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## AgB621 (May 11, 2010)

To be perfectly honest, I believe my issue is gastroparesis.  I had a normal gastric emptying study, but I hear they are notoriously inaccurate, especially the 1-hour study, which is what I had done.  The reason I think this is that the bloating intensifies about 60-90 minutes after eating, and continues to make me utterly miserable for a few hours after.  Sleeping on an incline helps prevent me from waking up multiple times in horrible pain as well.  In addition, I notice that if I suck my stomach in and stand sideways in front of a mirror several hours after eating, there is still significant swelling in my stomach, as if the food still hasn't left it.  My stomach feels distended and hard, like it's full of solid matter and not just air.  I don't know why my doctors so stubbornly refuse to diagnose gastroparesis.

The good news is I managed to get an appointment at the Mayo Clinic.  The bad news is it isn't until mid-August.  I don't know how I can possibly endure this another 3 months.  Hell, right now, I'm not sure I can endure another 3 minutes.  I just want to curl up and die.

I mean, we won't stop looking for answers before then.  I'll keep working with my doctors to see what we can figure out.  But I'm not at all optimistic.


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## Minxy (May 12, 2010)

AgB621 ~  if you are finding you are full soon after starting a meal, or regurgitating food up to several hours later, or regularly feeling nauseous after eating, then that would certainly suggest gastroparesis.  Have you had any abdominal surgery that could have damaged the vagus nerve, which is a common cause of gastroparesis?  Or do you by chance have an endocrine disorder such as diabetes or thyroid disease? 

My discomfort and pain start 60 minutes after eating, when food reaches the first loop in the jejunem as there is a delay in it getting any further, because of the narrowing or partial obstruction in the small bowel. The pain can be intense, and causes me to be very short of breath.  It also always wakes me several times 
every night.


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## AgB621 (May 12, 2010)

Minx - I have not had any surgery, nor do I have diabetes, thyroid disease or anything.  Most likely the cause is either idiopathic (as 40% of cases are) or the result of a crash diet I went on when I was going through a clinical depression (developed some serious food issues but I'm a lot better now).  To say I feel full soon after eating is difficult because I feel like my brain isn't getting the appropriate hunger/full signals.  There are times when my brain wants food but my stomach doesn't.

I don't get any cramping pain, but rather the distention becomes so severe that I feel like the walls of my stomach are going to rupture.  It's more of a build-up of pressure than the cramping pain I would expect with a stricture.  I get this sensation like I literally just want to force the food out of my stomach, in any way I can.  I get nauseous but I do not vomit. 

The other thing that suggests GP to me is the fact that I will sleep far better with an incline pillow.  If I don't use one, I'll wake up multiple times feeling like there is a boulder in my stomach.  The pillow has made a huge difference for my quality of sleep.

Last night, I had my last meal at 5 pm and was unable to get a single additional bite of food in my mouth the rest of the night.  At 8 or 9, I was severely nauseated and by the time I went to bed at 10:30, the bloating was still extremely intense.  It had been over 5 hours since my last meal and I still felt like there was food in my stomach.  I was miserable.  I dread eating, I don't even want to do it anymore.


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## Keona (May 13, 2010)

I get this often with GERD in my stomach right to my sternum and I don't want to eat.  I was suggested not to eat anything at least 3 hours before bedtime but it can last a lot longer.  I had to sleep sitting up for a long time to feel a little better.  It also helps to sleep on my left side for some reason.  I now have the head of my bed raised but even dread sleeping sometimes.  You asked earlier if you thought the Ph monitoring would be a good idea or not.  You might want to try it to rule things out or to see if that is the cause.  I'm doing it in June - I don't like the thought at all however, I will do just about anything to figure out what is wrong.  Since you dont like the idea of tubes, ask if you can try the Smartpill - it does basically the same thing without wires and will measure gastroparesis.
________
List Of Engines


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## AgB621 (May 16, 2010)

Could the problem be a hernia???  I felt this weird lump on my abdomen, in the classic above-the-navel hernia location.  My gastroenterologist felt it and told me it wasn't a hernia, but I asked my other (integrative medicine) doctor, and he was quite certain it was.  I'm going to get it followed up on to see if I do indeed have one and what to do about it.

I looked up symptoms of a ventral hernia...two of them are constipation and abdominal distension.

Another quick note: I've been on a liquid diet since yesterday.  My stomach still "swells up" some after I drink my food, but I'm not getting any significant bloating.  I am, however, continuing to get reflux and that same regurgitation through my lower esophageal sphincter.  I don't know what this tells me about my problem.  Maybe that GERD really is a significant part of my issue?


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## acg101 (May 16, 2010)

*Functional cysts*

Hi Minx, Sorry to hear about your on-going problems. It is very frustrating not to know for sure. 
I am not sure of your age, but have you ever noticed a corallation between your symptoms and your menstruation cycle? :sorry: 
A symtom of ovarian cysts is  fullness, bloating in the abdoman, heaviness, swelling, nausia or vomiting. its worth checking it out
Best wishes
acg


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## suzielouwhoo (May 16, 2010)

hey there,
your symptoms sound very similar to what i used to experience.  i probably debeloped crohn's when i was 17 or 18 (am 37 now).  they could never figure out what the hell was wrong with me because i wuld get so bloated and swollen after eating that it would sometimes lead to projectile like vomiting.  hours would go by after eating and all the food would still be in my stomach.
doc's over the years never could figure it out and i was accused of being bulimic.  self induced vomiting was sometimes the only way to get rid of the pain.  they dismissed crohn's beacuse it so typically starts in the small intestines.  mine was definitely gastro/duodenal crohn's an it took them years to diagnose it.  could this not be part of your problem?  i also developed a small hernia and that seemed to make it worse too.
susan


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## C-Rohns (May 17, 2010)

Im sorry to hear about all the pain you are in!! I have extreme belly swelling too and i also tend to look pregnant.  Some days it is very painful and makes me feel sick and other days it doesn't bother me at all, and my GI said it was a side effect from taking Prednisone...so at least i know why it is happening to me.  I wish you all the best in trying to figure it out!!


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## Minxy (May 17, 2010)

acg101 said:
			
		

> Hi Minx, Sorry to hear about your on-going problems. It is very frustrating not to know for sure.
> I am not sure of your age, but have you ever noticed a corallation between your symptoms and your menstruation cycle? :sorry:
> A symtom of ovarian cysts is  fullness, bloating in the abdoman, heaviness, swelling, nausia or vomiting. its worth checking it out
> Best wishes
> acg



acg101 ~ thank you for the suggestion. In fact I am post menopausal having had an early menopause at age 39. 
The only correlations I note with my symptoms are eating, any exercise that stretches my abdomen, bending, lifting and any activity where I use my arms repetitively, e.g. gardening.  The eating is less of a problem as long as I keep strictly to the LOFFLEX diet.


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## AgB621 (May 19, 2010)

I do have ovarian cysts. I don't notice any worsening around my menstrual cycle but I will talk to my doctor about the cysts as a possible cause. 

A liquid diet greatly reduced the bloating but not the reflux. But now I find myself even less tolerant of solid food. Last night I felt sick the entire night, I even dreamed about how sick I felt. I was even more careful today and I feel just as bad if not worse. Every time I think I've gotten to the worst of it...things get even worse. I can't take this anymore.


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## acg101 (May 19, 2010)

AgB621 said:
			
		

> I do have ovarian cysts. I don't notice any worsening around my menstrual cycle but I will talk to my doctor about the cysts as a possible cause.
> 
> A liquid diet greatly reduced the bloating but not the reflux. But now I find myself even less tolerant of solid food. Last night I felt sick the entire night, I even dreamed about how sick I felt. I was even more careful today and I feel just as bad if not worse. Every time I think I've gotten to the worst of it...things get even worse. I can't take this anymore.


AgB please hang in there. dealing with our medical condition is not easy and we all had days where we felt 'ok enough' but with the right support system you can win this fight!!
hugs and best wishes
acg


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## acg101 (May 19, 2010)

*Lofflex*



			
				Minx said:
			
		

> acg101 ~ thank you for the suggestion. In fact I am post menopausal having had an early menopause at age 39.
> The only correlations I note with my symptoms are eating, any exercise that stretches my abdomen, bending, lifting and any activity where I use my arms repetitively, e.g. gardening.  The eating is less of a problem as long as I keep strictly to the LOFFLEX diet.


Hi Minx,
How long have you neen on the LOFFLEX regiment? did you introduce new additional 'safe foods' with time?
I follow a glutten free diet and together with meds my pain was reduced significantly.
best wishes
acg


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## Minxy (May 21, 2010)

acg101 said:
			
		

> Hi Minx,
> How long have you neen on the LOFFLEX regiment? did you introduce new additional 'safe foods' with time?
> I follow a glutten free diet and together with meds my pain was reduced significantly.
> best wishes
> acg



About 4 months.  I tried to introduce additional 'safe' foods after 2 months,  but always reacted badly. So now I just stick to the diet, as I feel so much better on it.  There are also some foods allowed on LOFFLEX (such as potatoes), which I cannot eat at all,  much as I would love to, as they give me trapped gas.  
So I guess I am following a combo of  LOFFLEX and SCD, but mostly LOFFLEX.  

The only thing I occasionally allow myself, off the diet, is a cup of coffee (once a week).

I did OK on a gluten-free diet for about 22 years, then my symptoms became uncontrollable until I changed my diet again.


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## acg101 (May 21, 2010)

Thank you Minx, very helpfull. My issue right now that I continue losing weight because my diet is so limited to few things.
best
acg


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## Keona (May 21, 2010)

Have you been tested for a candida overgrowth?  This can also cause bloating, abdominal pain, reflux, etc.  The more I hear about this yeast/flora, the more I realize just how much damage it can do... scary!  Just a thought..
Hope you are feeling better acg101


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## rissa (May 21, 2010)

*hi there*

registration finally went through and i can post!!

i wanted to write to you before but my account wasn't ready yet.  i started having that same feeling a few months ago.  i have been dealing with UC for years but never with this particular "bloating" feeling.

anyway, i tried eliminating all kinds of foods to no avail.  i ended up on a near starvation diet that kind of helped.  it consisted of me eating poached eggs and toast for breakfast and then only tiny things like applesauce or liquids the rest of the day.  at this point i decided to try the SCD diet.  the thing that had freaked me out about it before was the elimination of all grains, but after the near starvation diet i didn't really have anything to lose.  i was barely eating as it was.

anyway, the scd diet made the pains go away completely!!!  i know it sounds crazy but i noticed a huge difference the very first day i tried it.  it must be the grains.  i'm still shocked it has worked so well.  of course, it might not work with you but give it a try!!  i cheat on things like having a mocha in the morning.  and the yogurt i've been eating a ton of isn't homemade like they say it needs to be in the book.  but the one thing i haven't cheated on is that i really don't eat any bread, pasta, grains, rice or potatoes.  it really seems like a miracle to me.  that bloating feeling was just killing me and making me depressed every day.

anyway, i hope this helps!!  if you need ideas of what to eat just ask.  i can tell you what seems to be working for me anyway.  take care.


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## rissa (May 22, 2010)

just me again.  i wanted to say that although i think it has done wonders cutting out grains and most sugar i sometimes have bad days (yesterday!!) when i worry it's all starting over.  but it never gets as bad as it did before, so far anyway.  and today i'm feeling good again.

i so hope you are feeling better.  the worry that comes through in your posts is heart wrenching i guess since i've spent all too much time there.  of course everyone on this site has for sure.  it's so hard sometimes to just get through the day with these stupid bowel problems.   i'm looking forward to even just a 24 hour period of not worrying.  although i feel much better i still have plenty of UC symptoms and as stupid as it is i spend my "healthy feeling moments" worrying that i'm going to start hurting again.  good luck.

rissaxo
UC since 2002
no meds


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## acg101 (May 22, 2010)

Keona said:
			
		

> Have you been tested for a candida overgrowth?  This can also cause bloating, abdominal pain, reflux, etc.  The more I hear about this yeast/flora, the more I realize just how much damage it can do... scary!  Just a thought..
> Hope you are feeling better acg101


Hi Keona - thank you so much for the follow up. I have never heard of Candida. How dows one get tested for candida?
I asked my GI and he has never heard of it?
best
Acg


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## acg101 (May 22, 2010)

*candida*



			
				Keona said:
			
		

> Have you been tested for a candida overgrowth?  This can also cause bloating, abdominal pain, reflux, etc.  The more I hear about this yeast/flora, the more I realize just how much damage it can do... scary!  Just a thought..
> Hope you are feeling better acg101



Hi Keona - thank you so much for the follow up. I have not heard of candida and when I asked my GI he dismissed it?
how can one get tested for candida?
thanks and best wishes
acg


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## elycans (Jan 16, 2013)

AgB - Any word on diagnosis? Were you able to figure out why your stomach was swelling? I'm having identical symptoms! I've lost almost 25 lbs in the past couple months. My doc has put me through the CT scan, xrays, ultrasounds, the barium test, and an endoscopy. I can't go to the bathroom without Miralax; and even that isn't helping very well. My doctor found an ulcer during the endoscopy but I'm still having stomach swelling, nausea, and the acid reflux every day. The next test he's putting me through is a gastric emptying scan to test for gastroparesis. 

Medications I'm currently taking: 
Entocort
Pentasa
Sucralfate
about to start probiotic called Theralac (anyone heard of this probiotic?)


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## tek254 (Jan 17, 2013)

I have had 2 strictures in 2 years. Ct did reveal them, but a fluro-scope was the key. They were able to see it in real time. that test is were you drink 1 to 2 quarts of barium then have several xrays taken over a period of 1 - 5 hours depending on the rate the barium moves through your system. The last is the "live" x-ray where the radiologist moves a Doppler like device around your abdomen looking for problems. My strictures were severely painful ( i am 6'4 and 200 pounds) and they have me doubled over screaming for pain meds. Pain usually starts intermittently then becomes steady after a few hours. The pain is always there but flares. Best of luck


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## elycans (Jan 17, 2013)

I'm sorry to hear about your trouble as well. That sounds really painful. I've never had strictures before. My doctor had me go through the barium xrays as well, but found nothing with this test. When I had my endoscopy he found one ulcer. Could an ulcer be the cause of this constant and extreme swelling? Or can simply acid reflux cause this? I'm afraid to eat anything because it will only get worse.


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