Why won't my ibs shift?

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groansfromcrohns

Joined
May 8, 2012
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I've had crohns for 4 years but have never had severe ibs. it started happening a month ago with pains and stomach gurgling and really got bad a few weeks ago. i was having crippling pain in the night every 3 minutes and after seeing the doc she said it was ibs and prescribed mebeverine. i changed to a dairy/gluten free diet. a week later i got it again and felt it even worse in the morning (dry heaving etc) saw a different doctor, once again i was told it was ibs and possibly a bug. ive been stressed recently but im trying not to be, also i might occasionally indulge in something i shouldn't just because i miss eating the food i love (and alcohol) even though ive got crohns a lot of foods and alcohol haven't really triggered anything so im miserable. i just don't understand why it wont go away and why the pain is so severe, any ways i can ease the pain when i get it?
 
Hi groansfromcrohns! Have you tried eating smaller meals more frequently? Like instead of 3 large meals a day try 6 small ones? I know that that's helped some on the forum a little. If the symptoms don't go away with meds and a diet change, then you might want to try yet another doctor to see if its really IBS that's causing this issue. Have you had any tests done recently? What do you take for the Crohn's? Where is the pain located and your Crohn's?
 
I had a similar thing with really bad stomach cramps. I love alcohol too, but I think the wine made it worse so I switched to vermouth.

I was prescribed Omperazole to keep my stomach calm as I had a lot of gas and reflux and that seems to have helped a lot. Also, sticking to low acidic food i.e. avoid spicy curries (Korma was okay for me), eat white bread. A low-fiber diet would help too.
 
Hi crabby. No and I should do really.
The doctor recommended I have a bloodtest to check for inflammation, said my guts are working overtime.
I take mebeverine and pentasa for my crohns and with crohns i get the pain near my groin (colon i guess) i know i have that terminal ileum but i haven't had pain there for ages, its just been my stomach recently. it seems like ive been having these horrible spasms once a week (all day) ive noticed that i get this bloating below my belly button, like a little inflatable balls being blown up. even though im not having the pain now my stomach still feels sensitive. its affected me psychologically because i fear the next one and being in peoples company because i fear doubling up in pain, its embarrassing.

i need to find a list of ibs/crohns snacks because I'm worryingly skinny for a guy of of 24 (9st)
i eat porridge with lactose free milk for breakfast , either rice cakes or soup for lunch and jacket potatoes/tuna/chicken/salad that sort of stuff for dinner and alpro soya yoghurt for pudding everyday.
 
bettyboop12 said:
I had a similar thing with really bad stomach cramps. I love alcohol too, but I think the wine made it worse so I switched to vermouth.

I was prescribed Omperazole to keep my stomach calm as I had a lot of gas and reflux and that seems to have helped a lot. Also, sticking to low acidic food i.e. avoid spicy curries (Korma was okay for me), eat white bread. A low-fiber diet would help too.
Click to expand...

eat white bread????? thats the thing that caused me most grief with crohns and i had pizza every week without much trouble haha

because im a fussy drinker ive only ever drank vodka n coke and cider. cider has given me occasional bloating but VnC has rarely effected me. after having this ibs thing ive been afraid to drink alcohol, did it once two weeks ago and felt full on just two glasses. i thought of maybe having a weak screwdriver (vodka and oj)
 
When these doctors blamed it on IBS rather than Crohn's, did they run any actual tests to make sure it's not IBD related? If so, what specific tests?
 
I suggest you stop listening to doctors that tell you that your symptoms are IBS related without making sure it's not IBD related considering you have Crohn's. Find a good doctor that is willing to do their job. Advocate for yourself.

I just read your first thread. Are you still only on Pentasa for the Crohn's?
 
David said:
I suggest you stop listening to doctors that tell you that your symptoms are IBS related without making sure it's not IBD related considering you have Crohn's. Find a good doctor that is willing to do their job. Advocate for yourself.

I just read your first thread. Are you still only on Pentasa for the Crohn's?
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i am yes
 
Considering mesalamine (the active ingredient in Pentasa) isn't even approved for use in Crohn's disease because, well, it doesn't work that well for many people with Crohn's, it's not surprising to me that you're having all kinds of symptoms. And I'd bet real good money that they're not IBS related and it makes me really angry that they're pawning it off as IBS without making sure. Sometimes I wish I could go with some of you to these appointments...

I would demand a referral to a NEW gastroenterologist so they can reevaluate the extent of your disease and likely alter your treatment regimen. In the meantime, I would take a shotgun approach to the treatment of your disease and hit it from every angle:

- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Research it. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one :)
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

You'll need to utilize current doctors for some of the above. Once you get a good doctor, bring them in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above. Have them utilize western medicine as they see fit but be sure to let them know about all the above.
 
Thank you for your help. Why do you think they put me on pentasa?

by the way, stress has been a big problem for me recently and since i was a teenager ive had anxiety and depression (i take citalopram for this)
 
Despite unimpressive study results for Mesalamine in Crohn's disease, there really aren't any "mild" and easy (pop a pill) treatment options approved for use to treat it. Some people do ok on it but considering mesalamine is topical (think of it as a lotion) and Crohn's disease is transmural (affects the entire width of the bowel wall) it's like tossing some dirt over hot coals and calling the fire extinguished. It might seem like it on the surface but the coals are smoldering under the surface and just waiting for the right time to start a forest fire.

I also believe the vast majority of doctors have no clue how to effectively treat Crohn's disease (this isn't a slight to them, it's a VERY complicated disease) but instead of referring to a doctor who does, they basically guess, or even worse, blame it on IBS and send you on your way.

Have you ever had your vitamin B12 levels tested? B12 deficiency is VERY common in Crohn's patients and can lead to anxiety and depression.
 
Not sure, its a good idea though.
Do you know what i hate? i thinks and i don't see why nots. that's what i got from a pharmacist when asked if it was ok to take pentasa and mebeverine before a meal (he had to look in a book..) he also asked if i knew pentasa can cause blood disorders. well no because i was never told!
 
i have a feeling i have a wheat intelorance. i had cheerios last night and im bloated now when ive been fine for a few days. the day before i was having really bad cramps i had a supermarket roll and yorkshire puddings so it makes sense. although ive never showed this intelorance before this supposed ibs. (i was tested for celiac btw and i don't have that)
 
Just an update. I was feeling a lot better last week then probably ruined that by eating fast food..
on sunday i felt average but after having a steak that night i was having immense stomach pain, every 5 minutes as usual. and since then ive been having pains but its a little different now, i feel a sensation in my anus and bladder when i get the pain and i can always seem to go. god knows how many times i go a day now. im producing liquid thats like peppermint tea..greenish yellowish that just splatters (was a nightmare doing a stool sample)

ive seen another different doctor who was useless although like me she thought it could be ibs worsened by crohns. i got a nutritionist referral, my november meeting with the specialist brought forward, expecting my blood test results end of the week, possibly stool results too (not sure how long they take)...i am pretty worried but not much i can do :(
 
I might have missed this in a earlier post, but you mention how after certain meals you get waves of pain. Do you vomit? Have your dr checked for a blockage recently. I am having similar issues and just found out I have a partial blockage. The diet they put me on is low-reside (low-fiber). Don't know if it will work today is day one of the diet.
 
Earnellzwifey said:
I might have missed this in a earlier post, but you mention how after certain meals you get waves of pain. Do you vomit? Have your dr checked for a blockage recently. I am having similar issues and just found out I have a partial blockage. The diet they put me on is low-reside (low-fiber). Don't know if it will work today is day one of the diet.
Click to expand...

ello. no, ive never vomited from crohns or ibs but a few weeks back i was feeling unwell all day and dry heaved but that hasn't happened since. doctor said it may have been a bug.

im worried i do have a blockage but no doctor has brought up that possibility, i will have to ask to be checked. currently every day my stomach feels funny like its always filling up with air, which i guess it is because i only get the pain from bloating. when i got crohns pain my stomach felt fine all the time UNTIL i got the pain.
 
Have you still got your gallbladder ?
I'm positive that's your issue either that or crohns not ibs!!
Stones in your gallbladder or just a non functioning one causes ALL of your symptoms , It will get worse if not checked an turn into pancreatitis.
C if this is your problem ASAP .
Jen xx
 
Jenny06xx said:
Have you still got your gallbladder ?
I'm positive that's your issue either that or crohns not ibs!!
Stones in your gallbladder or just a non functioning one causes ALL of your symptoms , It will get worse if not checked an turn into pancreatitis.
C if this is your problem ASAP .
Jen xx
Click to expand...

what checks would a doctor make to see if its gallstones?
would a blood test/stool sample show that?
 
Just read all of your posts I can't believe that your doctors are not sending you for investigations!!! gurgling and bloating can be caused by IBD too. I think they are being very careless!!!!! i was diagnosed with crohns in terminal illeum but of late mine has moved to large colon, specifically the left side sigmoid colon. so like it can move around. i am also on pentasa and that wasn't enough on its own. my doctor recently started me on remicade and i'm feeling a lot better and i only got my first infusion monday. i really think you need to be referred on for tests. also definitely get checked for iron / vitamin b12 deficiency like David said because I know how it feels I am anemic and it can cause all sorts of things like anxiety, depression, breathlessness etc. the yellow stuff is it mucus, that is what i get but also i have a lot of blood but thank god that is under control now and is not a much since i started the remicade. Bottom line is you need to be checked out. And i would eat light, i have been sticking to salmon and baked potatoe, carrots and parsnips for dinner, no sauce or salt just maybe goats cheese over the potatoe. did i read you eat oatmeal, i found oatmeal very bloating and can give a lot of wind, maybe try another cereal instead i was actually told corn flakes or rice krispies would be better while in a flare put . at the moment i have cornflakes, banana and psyllium husks fhalfor breakfast. followed by big glass of water. then for lunch i am having either omlet of scrambled egg. recently i purchased a juicer and this is where i plan to get the nutrients i am missing. today i mixed half a cucumber, cup spinach, 2 carrots, 1 apple, sprig parlsey and 1/2 lemon. i feel great, it gives a real energy kick. and it is anemia fighting juice. try and eat snacks in between, i find the only think i can have as a treat at the moment is queen cakes, and you said you need to put on some weight so they might suit you? they usually just contain flour, margarine and eggs. look at the ingredients. following thisa low residue high protein diet might give yourself a chance to get well again. but the doctor really needs to get you referred i think. i too am avoiding dairy and all types of bread at the moment. Try and research easy lunch recipes you need to try and come up with a routine that will fit in for you . that is what i plan to do when i get back to work. make my own sandwiches and soup in a flask! it is hard work but it pays in the long run. sorry for going on have a lot of time in my hands at the moment!! :)
 
karj said:
Just read all of your posts I can't believe that your doctors are not sending you for investigations!!! gurgling and bloating can be caused by IBD too. I think they are being very careless!!!!! i was diagnosed with crohns in terminal illeum but of late mine has moved to large colon, specifically the left side sigmoid colon. so like it can move around. i am also on pentasa and that wasn't enough on its own. my doctor recently started me on remicade and i'm feeling a lot better and i only got my first infusion monday. i really think you need to be referred on for tests. also definitely get checked for iron / vitamin b12 deficiency like David said because I know how it feels I am anemic and it can cause all sorts of things like anxiety, depression, breathlessness etc. the yellow stuff is it mucus, that is what i get but also i have a lot of blood but thank god that is under control now and is not a much since i started the remicade. Bottom line is you need to be checked out. And i would eat light, i have been sticking to salmon and baked potatoe, carrots and parsnips for dinner, no sauce or salt just maybe goats cheese over the potatoe. did i read you eat oatmeal, i found oatmeal very bloating and can give a lot of wind, maybe try another cereal instead i was actually told corn flakes or rice krispies would be better while in a flare put . at the moment i have cornflakes, banana and psyllium husks fhalfor breakfast. followed by big glass of water. then for lunch i am having either omlet of scrambled egg. recently i purchased a juicer and this is where i plan to get the nutrients i am missing. today i mixed half a cucumber, cup spinach, 2 carrots, 1 apple, sprig parlsey and 1/2 lemon. i feel great, it gives a real energy kick. and it is anemia fighting juice. try and eat snacks in between, i find the only think i can have as a treat at the moment is queen cakes, and you said you need to put on some weight so they might suit you? they usually just contain flour, margarine and eggs. look at the ingredients. following thisa low residue high protein diet might give yourself a chance to get well again. but the doctor really needs to get you referred i think. i too am avoiding dairy and all types of bread at the moment. Try and research easy lunch recipes you need to try and come up with a routine that will fit in for you . that is what i plan to do when i get back to work. make my own sandwiches and soup in a flask! it is hard work but it pays in the long run. sorry for going on have a lot of time in my hands at the moment!! :)
Click to expand...

Thanks for your advice. i'm seeing the doctor tomorrow, she may have the results of my blood test and stool sample.
 
So it turns out you guys were right, I'm having a flare up! everythings normal except for my inflammation markers which are at 86. i've been asked to have another blood test so they can keep an eye on me. plus i'll be seeing my specialist soon. but what happens now, how long does a flare up last? ive never had one before.
 
I guess it depends on the person? Are they going to do something with your meds? Or do you have to wait for the specialist. If your inflammation markers are up shouldn't they be putting you on something like prednisolone or some other drug. But I suppose it will be the specialist that decides that. In the mean time, i have been told by other people on this forum that aloe vera juice is good for inflammation? maybe try that? and a low residue diet - i think the diet is very important really.
 
karj said:
I guess it depends on the person? Are they going to do something with your meds? Or do you have to wait for the specialist. If your inflammation markers are up shouldn't they be putting you on something like prednisolone or some other drug. But I suppose it will be the specialist that decides that. In the mean time, i have been told by other people on this forum that aloe vera juice is good for inflammation? maybe try that? and a low residue diet - i think the diet is very important really.
Click to expand...

I've read aloe vera helps with weight loss, i can't afford to lose any more. any other suggestions?
 

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