Upper GI Issues

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Sophabulous

Sophabulous

Joined
Jun 9, 2016
Messages
667
Hi all

I’m having some issues, I have duodenal activity and ulcers so guessing this is stemming from that although symptoms are new to me.

I am getting terrible upper trapped wind, it feels like there’s a melon lodged between my ribs and I can barely eat for fear of making it worse. Secondly it feels like when I eat the food is ‘backing up’ and if I apply pressure I get a very sharp pain. I ate at around 10:45 this morning and suffered all day no matter how much I belched (sorry I know that’s gross.)

I’m also starting to get pretty bad nausea again despite taking cyclizine which usually helps a lot. I thought at a couple of points today I was actually going to vomit but when I prepared myself for this I just got reflux, which I have had for years anyway but not in combination with the other symptoms.

I really don’t want to go off my food again but it just makes everything worse. It’s taken me a really long time to psychologically recover from food being ‘the enemy’ so this is a slippery slope for me.

I’ve tried taking Rennie etc but no effect whatsoever. I have an MRI on the 14th of June but what can I do in the meantime to relieve the symptoms? I’m going to be going through a real rough patch over the next few weeks so this is the last thing I need on top of everything!

Thanks in advance
 
Can you call your doctor's office and ask if they can fit you in sooner if they can get you in sooner.?
 
ronroush7 said:
Can you call your doctor's office and ask if they can fit you in sooner if they can get you in sooner.?
Click to expand...



Thank you, to be honest I feel it’s a bit pointless. They won’t want to do anything at the hospital until I’ve had the MRI and unless I get to the point again that I’m not keeping down fluids then I don’t want to contact them.

I won’t be able to get in to see my GP for about 3 weeks so I might as well just wait. It’s not unbearable just not ideal and my fear is it’s going to get worse but I don’t feel it will be taken seriously unless it does.

I’m worried it will get worse over the next couple of weeks in which case I’ll contact them but to be honest it’s more stressful to try and justify myself than it is just to live with it at the moment :-(
 
Could it be a stricture? I've never had one myself, but the symptoms sound like it could be one. You could try a low residue diet for a few days and see if that helps. My wind problems have cleared up because my new doctor doesn't want me to eat any dairy other than yogurt. He is from India and has given me dietary restrictions. Worth a try anyway.
 
Thanks all, I have been on low residue for a couple of years as I’ve never been able to get off it. I had an MRI 2 years ago and there were no strictures then, could one have developed in that time? I don’t know how long they generally take to appear. The gallbladder question is interesting, are these the kind of symptoms a gallbladder problem would produce? I don’t know much about the effects of CD on other organs at all.

This morning is much better so I’m going to try going back on the liquid diet for a day or two and then re-introducing food afterwards to see what happens.

It could very well be stress related but I’m more leaning towards the stress kicking off a flare. My Duodenum hasn’t been checked in ages although I haven’t really had any issues with it recently, it’s been lower down I’ve been struggling with. It would be just typical if that’s starting to grumble again as I found that much worse than the TI inflammation.

Thanks for your replies, the 14th feels like ages away but it will soon come around and hopefully will show what’s going on!
 
My inflammation is all in my small intestine, and whenever things start to go south I switch to a liquid diet too. I totally understand the “food is the enemy” problem; since my last flare two years ago my appetite hasn’t been the same. I gravitate towards white starches mainly. They sit best in my stomach but aren’t really good for nutrition, weight, etc. Even chicken is tough to digest. Two weeks is a long time to have severe stomach pain. If it’s a partial blockage clear liquids should help; if it’s a stricture you’ll feel it as soon as you re-introduce solids. It’s frustrating that this disease means a lot of trial and error. Let us know what the MRI shows.
 
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Sounds like it could be your gallbladder. Your symptoms are similar to gallbladder attacks. Fats and meats tend to make symptoms worse. I have problems with biliary sludge and had to cut out my ginger therapy. After a month being off of the ginger, my symptoms have improved, but I still have to watch it.
 
Thanks guys

I totally agree with you there Jabee, white starch is a total safe food for me but thankfully I’m also ok with chicken and fish. I’ve recently tried reintroducing small amounts of red meat and that’s been ok too, although I wouldn’t push my luck and eat it more than once or twice a month. I was vegetarian for many years until the anaemia just got ridiculous so I’m still a bit squeamish with a lot of meat. Potatoes are my ultimate safe food lol.

Bufford that’s really interesting, I hadn’t made the connection but having gone back through My Fitness Pal for the last few days there does seem to be a correlation with fatty foods. I’ve never had a problem with these before, and for a long time I lived on them just to maintain my weight. I fear I may have brought this on myself over the years [emoji51]

Firstly is this something I should mention to the IBD nurse or my GP? Will anything show on the small bowel MRI? I’m inclined to think not as I have to drink the contrast just to show the bowel lol. Im still going to do the liquid diet for a couple of days as today has been so much better, then maybe reintroduce safe foods and then try something fatty to see what happens.

If it is my gallbladder it would explain why I feel so much better since starting Infliximab in March but still getting these pesky episodes I guess!
 
After some quick googling I can see that the TI being inflamed can lead to issues with gallstones, and mine most definitely is. I don’t quite understand it but I can see there is a link with cholesterol too.

It’s around £15 to get a cholesterol test in a pharmacy in the UK, do you think this may be worth doing or would it be of no value?

Sorry for all the questions, I just know I’m going to have to back up what I’m saying when I go back to the hospital, especially if nothing on the MRI explains this. Any tangible evidence would be a big help as my word for it is rarely enough and I’ve started to feel quite defensive about raising issues or questions [emoji51]
 
I told my GP about my pains, when I did she poked me on my right side by the lowest rib and I flinched. She ordered up an ultrasound which confirmed biliary sludge on the gallbladder.
My safe meats include chicken and fish. Pork is off my menu, and so is pizza which was once one of my favorite foods. I can have a little red meat.

When my gallbladder acts up my stool is lighter in color.
 
Thank you, I would most definitely wince if anyone were to prod me there! So far so good and no pain or bloating. I’ll see how it goes and if anything confirms the suspicion once I’m eating normally again I’ll make an appointment with my GP. Thankfully she’s fab so I have no concerns there!

Treatment wise did anything need to be done or is it just cutting our trigger foods?

Thanks again
 
I also wonder if it could be pancreatitis. It’s incredibly painful and hurts most exactly where you describe. An easy blood test to check your pancreatic enzymes would give you that answer. Glad the liquid diet is helping.
 
Jabee said:
I also wonder if it could be pancreatitis. It’s incredibly painful and hurts most exactly where you describe. An easy blood test to check your pancreatic enzymes would give you that answer. Glad the liquid diet is helping.
Click to expand...



Hm, possibly although I’m not in pain constantly. It’s not even every time I eat, it seems to depend on what I’ve eaten to be honest. I know a couple of people who’ve had acute pancreatitis and were in hospital for weeks and although I know that it’s painful when it strikes I’m not at that stage by a long way. Unless it’s chronic and ‘grumbling’ so to speak in which case the presentation is different?

Saying that I was oblivious to so many Crohn’s symptoms before I was diagnosed until they became a massive problem in day to day life. I really don’t know what to think :-( I don’t have a blood test due until late June before my next infliximab infusion and I don’t even know what they are testing for other than infections. I’m also still on Azathioprine so maybe I should see my GP anyway even if just for peace of mind. I remember the IBD nurse at the hospital mentioning pancreatitis as a possibility when she prescribed the Aza, but until now I’ve had no reason to suspect it.

I think I’m going to make an appointment with my GP and then nearer the time is things have settled down then I’ll cancel. I just worry that without losing weight nobody will listen to me! I’m finally at a healthy weight and it really annoys me that I’m taken less seriously as a result. I’m just better equipped to deal with the disease now I know what’s wrong and can go back to a liquid diet when issues arise instead of not eating at all.

Rant over lol x
 
Sophabulous. I just started 6mp pill and need blood draws every 2 weeks. I am not sure what they are checking either. I see my GI this Friday. The blood draws are probably checking my liver, kidneys and other organs.
 
Both 6MP and Azathioprine can cause pancreatitis, but I think it develops quite soon after starting them. I totally understand what you mean about not being listened too if you’re not underweight. You’d think they would take us more seriously once we have a diagnosis!
 
Recently, after my symptoms got worse and my doctor noticed I had only lost 3 pounds he said "you're not wasting away or anything." Ha Ha.
I failed to mention to my GI that I wasn't "wasting away" because at I was drinking a six-pack of Ensire Drinks every day 😳.
I will mention the Ensure Drinks to him this Friday.
 
My doctor diagnosed me with biliary sludge on the gallbladder said that it could be removed if the gallbladder does not improve. Right now I am being monitored and she asked me to first try the dietary approach.

Avoiding trigger foods does help, but I am not sure if this is a sollution at this point or just delaying the inevitable surgery.
I do feel better at this point, but I still get episodes where eating is difficult and the pains return with a vengeance.

These conditions are also partyly due to aging issues, so if it becomes worse I will ask and push for the surgical removal.


Sophabulous, please keep your appointment, the symptoms do come and go and give the feeling that the issue is resolving itself. However, it usually keeps returning at some point.
 
Bufford sorry to hear about your gallbladder. They use laparoscopic surgery now to remove the gallbladder, so no big cuts. I felt great the very next day after my gallbladder surgery.

If you start losing weight that is bad. Keep us posted. 🌼
 
I was losing weight last year, but right now I am holding a steady weight after getting off of the ginger therapy that was aggravating the gallbladder further.
 
Bufford said:
My doctor diagnosed me with biliary sludge on the gallbladder said that it could be removed if the gallbladder does not improve. Right now I am being monitored and she asked me to first try the dietary approach.

Avoiding trigger foods does help, but I am not sure if this is a sollution at this point or just delaying the inevitable surgery.
I do feel better at this point, but I still get episodes where eating is difficult and the pains return with a vengeance.

These conditions are also partyly due to aging issues, so if it becomes worse I will ask and push for the surgical removal.


Sophabulous, please keep your appointment, the symptoms do come and go and give the feeling that the issue is resolving itself. However, it usually keeps returning at some point.
Click to expand...



Thank you, I can’t get an appointment online with my usual GP so I’m going to wait until she’s available. Ironically I can see a different Dr next Friday but I can’t get an appointment with my own unless it’s urgent and even then it won’t be until the 13th ha ha! Never mind, I’ll give them a call and see if they’ve had any cancellations in the morning :)
 
Strange question I know, but could any of the issues mentioned above tie in with some strange little red dots I’ve developed recently? They are raised and quite hard and itchy, mostly on my upper body and particularly arms.

Might be no link but the timing is very similar!
 
Hey Soph,

Skin problems can coexist with many autoimmune disorders. Eczema and psoriasis are quite common to show up as well as other mystery rashes and blotches, I think all it could be related. Low vitamin D levels don't help your skin either, that's something I learned by tweaking my diet and vitamin supplements.
 
cmack said:
Hey Soph,



Skin problems can coexist with many autoimmune disorders. Eczema and psoriasis are quite common to show up as well as other mystery rashes and blotches, I think all it could be related. Low vitamin D levels don't help your skin either, that's something I learned.
Click to expand...



Thank you, I’ve had eczema all my life (alongside Asthma and hayfever, I believe all caused by the same gene.) That’s actually quite under control at the moment and the areas affected aren’t dry. The lumps look like they have a little pinhead sized dot of blood in them. Very strange!
 
Hmmm, more proof that we are all different. I haven't had that type of spot...yet. I have had to see a dermatologist a few times myself. I believe it was betamethasone valerate that was prescribed. I can't remember the strength, it is a steroid cream that clears up my skin issues. You probably have heard of it, having eczema and all.
 
Strange question I know, but could any of the issues mentioned above tie in with some strange little red dots I’ve developed recently? They are raised and quite hard and itchy, mostly on my upper body and particularly arms.

Might be no link but the timing is very similar!





Are you on a biologic like Remicade. They mention these red spots as a possible side effect.



Quotes are not working on my end for some reason.
 
Bufford said:
Strange question I know, but could any of the issues mentioned above tie in with some strange little red dots I’ve developed recently? They are raised and quite hard and itchy, mostly on my upper body and particularly arms.

Might be no link but the timing is very similar!





Are you on a biologic like Remicade. They mention these red spots as a possible side effect.



Quotes are not working on my end for some reason.
Click to expand...



Ah perhaps that’s it then. I started Remicade (or Infliximab as it’s known here across the pond [emoji4]) in March, although the spots have only appeared in the last few weeks, probably since my third dose at the beginning of May. Coincidentally it was only after the third dose I started to improve so I wouldn’t be surprised if there is a connection!
 
Not the best picture in the world but hopefully you can see what I mean!

c63c16f5db3e3f9bc22db03b78c20735.jpg
 
Lynda Lynda said:
Bed Bugs.
Click to expand...



I would have thought they would be all over if that were the case? And some of them have been there for weeks and no sign of going away, more keep springing up though! They seem to go quite hard once they’ve been there a while too. I did manage to book a GP appointment today though but it’s not until the 25th of June so maybe I’ll ask her about them when I go if it’s still ongoing but I feel a bit silly when it’s something so minor lol
 
If it's bed bugs it isn't minor that's for sure.
I hope you and your doctor figure it out.
I had bed bugs in my apartment in 2013.

Take Care 🌻
 
Lynda Lynda said:
If it's bed bugs it isn't minor that's for sure.

I hope you and your doctor figure it out.

I had bed bugs in my apartment in 2013.



Take Care [emoji258]
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Oh no! I’ve heard they are a real nightmare to get rid of once they’ve made themselves at home. I’m washing all my bedding on a high temp and I’ve just hoovered the mattress (lol) but I didn’t see any evidence of them. I feel all itchy now 🤭
 
Good news that the Remicade is working. Keep an eye on the side effects, when this treatment works its a miracle for many. I don't think the red dots are reasons to worry, but do show them to your doctor on your next visit.

Unfortunately I developed lupus like side effects when I started Remicade and had to go off after the 3rd infusion.


Bed bugs are itchy and can produce a soft welt. Check the bed sheets; bed bugs leave stains that look like small blood stains. Their eggs are tiny about a millimeter or less and they will leave bits of egg shells and bad odors.
 
I did not mean to scare you about the bed bugs, but my apt was infested in 2013 and it was a nightmare.
Not all bed bug bites are "welts." Some folks react terribly to the bites and some folks do not react at all.
My bed bug bug story is too long to write here.
But one good thing about the bed bugs is that they do not transmit diseases ! So they are just irritating invaders. Unfortunately though they multiply fast.They love the dark
Don't itch the bites !
( I never saw a bed bug stain, never saw bed bug blood and I never even SAW a bed bug and never smelled odors.But they were in my apartment.)
I hope you find your answer soon.
 
Lynda Lynda said:
I did not mean to scare you about the bed bugs, but my apt was infested in 2013 and it was a nightmare.

Not all bed bug bites are "welts." Some folks react terribly to the bites and some folks do not react at all.

My bed bug bug story is too long to write here.

But one good thing about the bed bugs is that they do not transmit diseases ! So they are just irritating invaders. Unfortunately though they multiply fast.They love the dark

Don't itch the bites !

( I never saw a bed bug stain, never saw bed bug blood and I never even SAW a bed bug and never smelled odors.But they were in my apartment.)

I hope you find your answer soon.
Click to expand...



Oh no! That sounds awful :-( I did go away a few weeks ago and now I’m wondering if I’ve brought them back with me or something [emoji51]

I’ve lifted the mattress and checked the bed frame etc but nothing there.

How did you discover the problem in the end?
 
Lynda Lynda said:
The bed bugs were detected in my love seat. I had been sleeping on my love seat one evening and started itching. It looked like a large mosquito bite and of course got more irritated by me itching it. I had no idea what caused it. The next night I slept on the loveseat again. I woke up with another "bite" on my upper chest area that looked like a look large mosquito bite. I called the Manager at my apartment complex. The post control guy came over with his bed bug sniffing dog. The dog did NOT detect bed bugs but I knew they were in that love seat ! Since the dog got a negative reading on the bed bugs my Management couldn't treat my apartment. Treatment costs them a lot of money and there are 352 apartments here.



This is the truth, I never slept or sat or got near my loveseat again !! It sat in my apartment and I did not go near it. ( I probably should have thrown out the love seat but that darn dog said no bed bugs.) That was April 2013.



Six months later I was an idiot and sat on the love seat. This was when they started to bite me again, but I was getting bit when I was sitting in my recliner and the bites were tiny dots that itched. Bed bugs can crawl but they cannot jump or fly. When the bugs came back the dog detected the bugs and my apartment was treated. Those dogs can have many false positives and false negatives.



I suffered massive anxiety. But now I know not to panic if the bugs come back because they do not transmit diseases. They are just irritating critters that only like human blood. If you have bed bugs you cannot get rid of them yourself, you must call a pest control company.



This will be my last bed bug post because this is probably making you freak out. You could have bit by something else. There is a lot of information on Internet but go to a website like Orkin.



If you stayed at a hotel then they can come from there.



They banned DDT in the USA a long time ago because it was dangerous, I do believe the bed bugs would be gone if we were still using DDT but then we would be dying of cancer from the DDT.



I am not a bug expert so this is not advice, it is just information based on my personal experience.

Dont panic. Like I said the bed bugs do not transmit diseases and there are pest control people to help us get rid of them. Lynda.
Click to expand...



Oh dear, that sounds stressful! You poor thing. I’m not freaked out lol, it’s just something I hadn’t considered before. Maybe it’s fleas from the cat or something, she is due a dose of frontline. I don’t usually react to fleas (or maybe they just don’t usually bite me lol) but that could have changed with going on the Remicade.

I’ve got all freshly cleaned bedding and cushions etc so we’ll see if this makes any difference!
 
Flea bites are usually long and flat. There are rashes that occur with celiac and crohn’s, though. Do they hurt at all or just itch?

Regarding bed begs I think they can congregate around the divets most mattresses have but I’m not sure. Is it worse in the morning or while you are in bed? It actually doesn’t sound (or look) like bugs to me.
 
Before jumping to conclusions, observe whats going on and see if its something else or if its related to the side effects of the Remi. On the next doctor visit, take this up with the doctor. Red dots can be caused by many things.
 
Bufford said:
Before jumping to conclusions, observe whats going on and see if its something else or if its related to the side effects of the Remi. On the next doctor visit, take this up with the doctor. Red dots can be caused by many things.
Click to expand...

Yes, I agree. Just think of all the different spots we have ever had... mine were nearly all small and red. JMO- Best wishes with finding the cause Soph.
 
Tuff said:
FDA reports that pinpoint red spots are a side effect of Remicade.

https://www.ehealthme.com/ds/remicade/pinpoint-red-spots-on-the-skin/

I've had red ones and brown ones on my stomach, and they took months to go away, so they weren't bug bites.
Click to expand...



Ah thank you Tuff! I was pretty certain they weren’t bites as I’ve had some of the oldest ones for many weeks, I was sure they would have faded by now. My only query was whether the Remicade could be affecting the reaction time if they were bites but I’m pretty certain they’re not. It’s hard to tell without a close up picture but they just don’t look like bites and they don’t itch as badly either.

Did you continue to get them the whole time you were on the Remicade or did they stop appearing after a while?

Thanks again :)
 
I just got the one patch on my stomach and they never spread anywhere else. But show them to your doctor. An antihistamine might help with the itch.
 
Thanks again Tuff! Back to the original subject, I’m not having much luck narrowing down what is causing this.

Fatty/greasy food definitely causes the worst symptoms, but I’ve also had terrible nausea from a chicken salad. This is not something I would usually eat though due to the fibre although historically fibre causes pain rather than nausea.

Tonight I’ve had a chicken breast and rice, and feeling a horrible pressure/stabbing pain on the upper right hand side behind the ribs.

I’m going to try a day or two with no chicken to see if that makes a difference but I really hope I won’t have to cut it out long term :-(
 
Sometimes one can see gallstones and sludge in one's stool. I have had pains and then find what looks somewhat like corn in my poop. I looked it up online and compares well in appearance to sludge and stones that are being passed through the intestines. As they pass they can also cause blockages.
Two weeks ago I stopped taking the calcium magnesium supplements to see if my problem maybe related to calcium forming the sludge and stones.
 
I do believe it could be related to the calcium and magnesium, I think it's hard to tell how much hurts us and how much helps us. I have had to experiment myself with many substances, it's not easy. You might be onto something, Bufford. I wish you the best and am hoping that you have no more gallbladder issues.
 
It maybe a bit early, but it seems that I am doing better now after about 3 weeks off the calcium. Less cramping, yet there are times I have to reposition myself to relieve the pain. I'll mention this to my doctor when I see her next week. If this is the case, then I will have won a very large round.
 
So quick update all :)

I haven’t had one of these attacks for a couple of weeks but I have avoided the ‘trigger’ foods like the plague during this time. Saw my GP this morning who pulled up the MRI I had on the 14th, which shows ‘acute disease activity’ in the TI but nothing showing higher up. I’m not sure how good the images came out as I was late to the appointment (couldn’t park) and had to down all the contrast in half an hour despite being told not to as it would just cause everything to swell!

Anyhoo, as that doesn’t really explain my new symptoms and I’m actually starting to feel better Crohn’s wise, she agreed it was a good idea to check out my gall bladder to see what’s going on there. She’s asked me to check with the IBD nurse whether this can be done looking at the MRI images so I’ve left her a message, but if not she wants me to have an ultrasound instead.

The other thing is the strange red spots which I’d had for weeks have nearly all cleared up. Only 3 are left and although these were among the first to appear and so have been there the longest, they are also nearly gone. I have another infusion on Thursday so it will be interesting to see if they come back after that for sure.

Thanks for all of your responses and I’ll come back and let you know what happens!
 
Sophabulous said:
Not the best picture in the world but hopefully you can see what I mean!

c63c16f5db3e3f9bc22db03b78c20735.jpg
Click to expand...

Sending you my support. Hoping the Remicade works for you. Maybe your doctor can take a look at those spots on your arm. Crossing my fingers there is a cancellation and you can arrange an earlier appointment.
 

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