Undiagnosed Club Support Group

[Cat-a-Tonic]

Kelleh, do you do a lot of abdominal exercises when you're in the gym? I work out regularly but I have a hard time (particularly lately) with working my abdominal muscles - even a little bit of ab work lately will make me feel pretty awful and I end up with diarrhea, nausea, fatigue, abdominal pain, etc. I'm definitely not saying don't go to the gym - I know how much a workout helps me feel better both physically and mentally, so do keep exercising - but try taking it really easy on your abdominal area and focus more on arms, legs, etc. No crunches, no planks for awhile and see if you then don't feel so bad after a workout. And with the joint pain you mentioned (joint pain & arthritis are super common in IBD), try keeping your cardio sessions low-impact. I have arthritis in both hips so I can't jog at all anymore, but things like the stationary bike, the arc trainer, and the elliptical are all fine for me and don't make my hips feel worse.

Moogle, I totally get that. Next time I have a scope I actually need to find out what's covered under my insurance, too. I had a flexi-sig in April and the sedation didn't knock me out this time - although I don't remember much, I was apparently awake and talking the whole time (I do remember trying to look at the monitor to see what was going on, but I didn't have my glasses on and I remember complaining that I couldn't see). So my GI said that next time and for all future scopes, I now get to have propofol instead (anesthesia, rather than sedation) so that I'm fully knocked out - mainly for my own good but I think also partly for my GI's benefit so that I don't drunk-talk the whole time and annoy him, ha ha. So I need to make sure my insurance will cover propofol during a scope. Fun times.

 

[Cat-a-Tonic]

I've tried a few IBS treatments myself. None worked and some made me worse! Adding fiber to my diet definitely made me feel worse and triggered rectal bleeding (the fiber irritated my internal hemorrhoids to the point that they bled for a full month). I tried dicyclomine (bentyl) which does basically nothing for me. I also tried levsin which made me a lot worse - my GI said it was supposed to "calm" my guts, but instead it gave me horrendous nausea and vomiting which is apparently a rare side effect. Lovely. I also take amitriptyline which my GI had hoped would "calm" my guts. It hasn't had any effect on my guts but I stay on it because it helps prevent most of my migraines and it also helps me sleep.

When I tried IBD treatments, they do work for me. Prednisone works fantastically and fast for me - the first time I took it, I noticed a difference within an hour, and my symptoms disappeared within 24 hours and I felt absolutely wonderful. Entocort also works well for me and has gotten me into remission. Asacol worked great as a maintenance med for several years until they stopped making regular Asacol in the US. Lialda is my maintenance med now and that also works pretty well for me and I think/hope I'm back in remission now. So yeah, IBS meds zero, IBD meds for the win!

 

[kellehbeans]

Cat, what type of low-impact cardio are the best? I don't know if you've read a topic of mine in the past - I am a recovering bulimic. (I had a really bad slip-up last week and I haven't been right since, I broke a 2 month 'good' streak, and not the bingeing side). I feel like I have to do some kind of exercise, and I know it keeps my mind at ease. I took it quite easy on the two days where I got into a lot of pain. I did no abdominal work on the first time, I only did one type of abs work yesterday. I have kept well away from planks and also squats. I do a lot of arm work and leg work. I am feel really rather fatigued all the time, so to get myself even to the gym is hard work sometimes. I've felt a little better today, but I feel I need to go. I always find after some time at the gym, the next day I feel constantly hungry - but that hunger, isn't hunger. It's more a gnawing pain, which I can soothe with eating - but only if it's a binge basically. It's horrible. On that point, that reminds me last night I had night sweats (basically my clothing was drenched) but I woke up as if I was hungry? I know it can sometimes be soothed by drinking water, so whether or not I was just thirsty, I do not know. But today has been awful, I've eaten a hell of a lot more than I have wanted to because my stomach keeps making these awful noises at me and just generally uncomfortable. It really does not help me when I am so desperate to stop bingeing.

The fibre definitely does not work for me. I tried to take dulcoease, dulcolax.. Dulcolax being a laxative, just made my stomach REALLY, REALLY hurt. I've OD'ed on laxatives in the past, some in the last 4 months when I've KNOWN to have stomach issues, and I get what I call a 'laxative belly', where it just makes me feel worse and worse! The bulking agents just seem to aggravate my stomach more. I tried fybogel for a week, twice a day, and that just seemed to make the pain worse. Not to mention the trips to the loo.

If you're undiagnosed, will the doctors prescribe you any IBD medication? I've not seen it in the UK to happen, but it seems like it does get used in the US? I'd like to try it and see if it helps me - then surely that is quite a big indicator? Just hoping for these damn tests! Need to check my mail and see if I have an appointment yet or not.. Oh, and just to add, buscopan does not help either!!

 

[UnXmas]

Kellehbeans - the problem with many IBD meds is that the risks and side effects can be awful. A doctor has to know the benefits are likely to outweigh the risks, and without a diagnosis, it's hard for them to do that. You could ask your doctor, but just keep in mind your doctor may feel he/she has to say no, even if he/she really does want to help you.

I'm sorry I'm not aware of the details of your illness, or if you've already mentioned this, but if diarrhoea or frequent bowel movements is a problem, have you tried loperamide (Imodium)? Or Lomotil? These can help with symptoms if you do have IBD, though they don't help get you in remission. But regardless of the cause, they are very safe meds which doctors are unlikely to object to prescribing, or you can buy Imodium without a prescription.

Have you tried a hot water bottle for pain? Heat can be surprisingly effective especially for cramps (though it's the wrong time of year to want to carry a hot water bottle around ).

Also painkillers - you shouldn't need a diagnosis for many of them, and there are a lot of options. Codeine can slow your digestive system as well as helping with pain, but it is addictive.

Have you tried gentle exercises like simple walking, or yoga? Maybe something that doesn't involve the gym, but still helps you feel like you've done enough movement?

I'm sorry if these are really lame suggestions, hopefully there's something helpful there. Let me know if you want to discuss painkillers, as I've had a lot of them!

One other thing - if you've taken a lot of laxatives in the past, that can lead to bowel problems, especially difficulty having bowel movements due to the colon becoming atonic, but other symptoms can occur too. It might be worth asking your doctor if you feel this is a possibility.

 

[kellehbeans]

UnXmas, I can see. I'll just have to see what is happening, I'll have to meet my doctor first! I am hoping to be put into a private hospital (I used to work there), because of the choose and book offer the NHS now has. At least for endoscopies etc. I can go there.

I honestly can't tell you whether I have constipation or diarrhoea. They are very, very frequent, but are more like they are from having constipation! Very odd. Although, had a bit of a weird one on the weekend (after all that vodka I had), where some of it was my usual, then the rest was most definitely diarrhoea. Although, pretty sure I passed a blood clot or two in there. Definitely blood. But again, that could be from an internal hemmy or something of the likes.

Funnily enough, I have only just got a hot water bottle, and I've never used it! I may have to give it a go, possibly tonight after the gym! That and a nice hot bath.

I've been told not to take ibuprofen any more, one because of their side effects, but also they suspected me of stomach ulcers. I may try some more walking tonight at the gym, because you can alter the height, which makes me feel like I've done a bit more. I'll try some lifting too, I know the arm stuff doesn't set it off - but it does set me off with some acid reflux - which results in me having to take some antacids about 15 minutes into my workout!

Not lame suggestions, I'm very grateful! I'm just getting by on paracetamol!

 

[Cat-a-Tonic]

What type of low-impact cardio is best? Whatever doesn't hurt! In all seriousness, it's just going to have to be trial and error the way it is for diet and everything else. I find that I sometimes have trouble riding my road bike - the pressure it puts on my abdomen, both to maintain my balance & steering, and also the way that my abdomen is sort of crunched over on the road bike, that combination can really make my guts angry. My hips are fine with it, my guts are not. I can do things like the arc trainer, elliptical, and recumbent stationary bike with no tummy issues nor hip pain. All I can suggest is that you try various different things and see what causes issues and what doesn't. And if workouts in general are causing so much pain, maybe dial back the intensity or narrow your focus to try to figure out which exercises specifically to avoid in order to not end up in pain.

I also get severe reflux from working out - I always just pre-medicate myself with antacids (300 mg ranitidine and 8 to 10 tums just before a workout) so that the reflux doesn't affect me too badly. I have severe GERD and a hiatal hernia, so my reflux can get quite bad if I don't pre-medicate before a workout.

As for getting IBD meds but still being undiagnosed - my experience is that it depends on which doctor you talk to. My GI is very "by the book" and he said he'd NEVER prescribe IBD meds to an undiagnosed person. The doctor who initially prescribed me prednisone, he actually was a terrible doctor. Both my GI and GP were booked up but I was having a terrible flare (35 bowel movements in 24 hours!) and I needed to see someone that day. So I saw a different GP in the same clinic. This guy was super condescending and rude - he walked into the exam room, glanced at my chart for all of 2 seconds, then declared, "You have IBS. And you look depressed. Would you like some Zoloft?" I basically just snapped. I told him I think I have IBD and I would like to try prednisone. He said okay, but he wanted me to try some IBS meds first. I agreed. The IBS meds obviously did nothing. The pred trial worked miraculously, it was like night and day. My GI was mad at first that I even tried pred, but when he heard how good my response was to it, he changed his tune. Pred only works on inflammatory conditions (so it works on IBD, but not IBS), so he started taking me more seriously and ever since then he's been treating me as though I have IBD (we ruled a bunch of other stuff out, in my case it basically has to be IBD, we're just not sure which one or where it's hiding!). So, long story short, you can always ask to do a trial of prednisone. Say that you understand that it only works on inflammation, so if it works then you and your doctor can shift your focus away from IBS and towards inflammatory illnesses (besides IBD, pred also works on other inflammatory/autoimmune illnesses, so you may still have to go through further testing to rule out/confirm other illnesses such as Lupus, Addison's Disease, Behcet's, etc). So if it were me, I'd ask about it. The worst they can do is say no. There are UK members on here who are undiagnosed and have done trials of pred - I know Stargirrrrl has done a pred trial and I'm sure there are others.

I concur with UnX about the hot water bottle (or heating pad). I love my heating pad!

Oh, and you mentioned bleeding, specifically a blood clot - I have internal hemmies and the blood is always bright red, sometimes a little and sometimes a lot. Never clots for me, though. Clots are likely coming from higher up in the digestive tract, so likely not a hemmie and definitely something to investigate further.

 

[kellehbeans]

Wow, thank you! I may ask for the trial, if it doesn't work, then I may have to shift the focus! Just been to gym, minimal pain, although pushed quite hard. No running, just cross trainer, lifting, minimal abs work & some cycling. Of course my bowels decided to go 'you need to go loo' but didn't pass much! But the one 'constipated' looking stool I did pass, had a patch of blood on. Not sure if I have an internal hemmy, or maybe the blood is coming... Didn't feel pain passing, so not sure. Only red thing I've eaten is a bit of ketchup yesterday with my dinner.

I think I read before about the Zoloft. I think that is sickening that they did that! My doctor is trying to help me get off of Venlafaxine which I'm pleased with and I think I'm starting to settle back on it now!

I'll write it down in my notes that that's what happened and hopefully get some more insight. Most of my pain is down my left side, there are 2 major points that kill! There are 5 'bad spots' as I call them. Which is why I told them I didn't think it was stomach ulcers - plus I didn't respond to the meds!

 

[UnXmas]

Haemorrhoids are usually easy to diagnose with a digital rectal examination, which any GP can do. Tears in the skin and other more superficial causes of bleeding can be found this way too. So it should be possible to get those things diagnosed/ruled out quite quickly. The rectal exams aren't bad, just a bit uncomfortable.

 

[kellehbeans]

I've been to a&e when I was younger with bleeding and they decided I had haemorrhoids, but I don't ever remember them giving me anything. I'll see if I have any more blood, if I do, I'll probably go in to a local walk in medical centre tomorrow and see if they can check it out.

 

[Cat-a-Tonic]

Hemorrhoids sometimes don't need any treatment - often times they will heal up and go away on their own. Or you can treat them with things like creams without needing a prescription. You mentioned being constipated, and that can sometimes aggravate hemorrhoids. (I've also found that, for me, having a lot of diarrhea can also aggravate them.) Straining on the toilet is a big no-no as that tends to just make them much worse, so if you're on the toilet and can't pass a bowel movement, don't strain! If the hemorrhoids are really awful or causing a lot of bleeding, your doctor (GP or GI) can prescribe suppositories or enemas to help heal them. For my recent bout with bleeding hemmies, I was given hydrocortisone suppositories and that helped a lot.

And yes, as UnX said, they can do a rather uncomfortable test where they insert a finger into the anus to feel for internal hemmies. There's also something called an anuscope which is a little clear plastic thing that they insert up into the rectum to look for hemmies. Full disclosure, I've had both the finger and the anuscope miss finding my internal hemmies in the past, those tests are not 100% reliable. If they can't find hemmies with the finger nor the anuscope, they may want to do something called a flexible sigmoidoscopy to look for the source of the bleeding - it's somewhat similar but not as invasive as a full colonoscopy (rather than have you drink laxative to clean you out, they just do an enema on you to partially clean out your colon up to the sigmoid). I had to have a flexible sigmoidoscopy recently and I won't lie, it wasn't a super fun time, but they definitely found my hemorrhoids that way.

 

[kellehbeans]

Do haemorrhoids always cause itching? That's the one thing I seem to be lacking. The pain I had yesterday when passing has also lifted, but I haven't had anything like yesterday, and I also haven't strained at all today. Will maybe talk to a pharmacist while I'm in the village tomorrow, however I used sudocream yesterday and it seems to have eased any external pain I had.

I'm dreading the laxative drinking because of the way my body responds to fibre and laxatives! Sat here feeling blocked up, very uncomfortable! Think I may have to go get the water bottle out...

 

[Moogle33]

Hey,

Some of the IBS stuff I've tried includes: probiotics (over the counter), antibiotics, bentyl (which is an antispasmodic), low dose antidepressants like Elavil, meds for constipation such as Linzess, and meds for diarrhea such as Questran, and also pancreatic enzymes (over the counter and prescription).

There are also diets for IBS. One of the ones that is getting popular and recommended by doctors is the low FODMAP diet. It's if you have either an overgrowth of bacteria and some foods (milk, wheat, garlic, beans, etc) actually "feed" the bacteria in your gut/intestines which cause the gas, and diarrhea symptoms. You can google FODMAP diet, and there are some really good blogs and websites for that.

My personal favorite drug is Bentyl. It relaxes my gut, and at the end of the day I kind of use it to unwind and relax. It's not addictive or dangerous, I wouldn't use it during the day too much cause I get drowsy on it.

 

[Hayz]

Had the colonoscopy this past Thursday, my GI has said he is 90% sure it's crohns. It looks like I have a pretty drastic TI stricture so I'm off to have an MRI on Tuesday to assess the extent and whether it is scar tissue or inflammation. If it is rigid scar tissue it will look like pretty urgent surgery. He has found a couple of random polyps too which I will get the pathology back for on Monday. All in all, I'm kinda glad to get some answers but it is pretty daunting thinking to the future....

 

[kellehbeans]

Hey,



Some of the IBS stuff I've tried includes: probiotics (over the counter), antibiotics, bentyl (which is an antispasmodic), low dose antidepressants like Elavil, meds for constipation such as Linzess, and meds for diarrhea such as Questran, and also pancreatic enzymes (over the counter and prescription).



There are also diets for IBS. One of the ones that is getting popular and recommended by doctors is the low FODMAP diet. It's if you have either an overgrowth of bacteria and some foods (milk, wheat, garlic, beans, etc) actually "feed" the bacteria in your gut/intestines which cause the gas, and diarrhea symptoms. You can google FODMAP diet, and there are some really good blogs and websites for that.



My personal favorite drug is Bentyl. It relaxes my gut, and at the end of the day I kind of use it to unwind and relax. It's not addictive or dangerous, I wouldn't use it during the day too much cause I get drowsy on it.

I did the low-fodmap, unfortunately it fed my bulimia because of the restrictions I had to give myself. I did it for quite some time (after being sent away with no form of check-out and being dismissed) & it helped with tenderness of the stomach when pressed, but nothing else.

I will look Bentyl up, it may be pretty useful!

 

[kellehbeans]

Good luck Hays, even though the future may be daunting, there is help you can get to help ease the pain, and also get support from others, so try not to stress out about it! It is a very scary time though, and I'm sending you big hugs.

 

[Izzie]

Been having continuing problems with heart palpitations since I started this journey to get a diagnosis. I think it's a side effect of Omeprazole, my doctors are just confused. And now the big story about PPIs contributing to an increased risk of heart attack and yupp - I'm freaking out a little

Finally FINALLY have an appointment with a gastroenterologist, the week after the next. I'm writing down all my questions/thoughts and I'm just going to refuse to leave until I have them all answered. Maybe now I can get some answers, or if not at least some attempt at treatment.

 

[kellehbeans]

An update on me - I decided to try a different type of IBS medication - this is peppermint oil, I do believe. If anything, I feel worse. Stabbing pains in both right and left upper quadrants. Now I have a stitch mainly in my left lower quadrant while sat down, but it has spread all across my abdomen and it's definitely not wind. I was out with my parents and now all I want to do is go home and lay down!

 

[UnXmas]

Peppermint never helped me. When I was in hospital once, I'd reached the maximum of all anti-nausea meds I was allowed, so the nurses prescribed me peppermint tea. I like peppermint but can't stand tea, and it basically made the nausea worse. I don't think peppermint oil should cause you pain though, unless it's causing heartburn.

 

[kellehbeans]

Tried peppermint tea as well. My stomach is gurgling so uncomfortably that it makes me feel as if I'm hungry, I've felt like I've needed the loo all day and when I did go, pale stool, all looking like hard balls and some of them floated. It was NOT easy to pass at all, and I still feel I have a full bowel. Pain is pretty unbearable again, paracetamol helped the pain a bit.

 

[Moogle33]

I never liked the "natural" IBS remedies like peppermint oil, or herbal teas. Some people swear by them, but I hated them. Not big on ginger either, haha.

kellehbeans, by any chance did your symptoms happen shortly after a bout of food poisoning or antibiotics? I kid of think mine did years ago and my gut never got back to normal. Some research suggests gut bacteria gets messed up post infections.

 

[kellehbeans]

Ugh, I hate ginger too! I don't even like the smell! But I'll quite happily eat gingerbread or ginger cake..... yummy...!

I've just had to call the doctors. 2 more blood tests, plus another stool test, followed by another yet another prescription of - you got it, more IBS medication! Just eating McDonald's (I ate it the other day on an upset stomach, so it may upset it again and I want to prove these tablets ineffective), then I shall take them. They are called 'Colofac' which are 135mg of Mebeverine hydrochloride. She told me that IBS can cause bleeding?! I was like, what?!?!?! Just booked in my two blood tests for Thursday, so hopefully we'll see if I have H. Pylori in my stomach and also having another FBC. Stool is for blood I do believe, which has never been checked.

I have the most awful tension headache today. Tried paracetamol, caffeine and ibuprofen (although I've been told I'm now allowed it, although just wanted to get rid of it). Now I have like period pains, but I'm definitely not due yet!

My symptoms came on at the beginning of the year, after eating far too much nutella and pancakes. I probably ate half a jar in one day, which ran havoc. I haven't touched it since, but my stomach has got worse and worse - especially over the last few weeks, and especially over this weekend. What sort of infection did you have Moogle?

 

[Hayz]

Officially leaving the, undiagnosed club today which is kinda bittersweet. After a MRI enterogram yesterday and the colonoscopy last week, I have a 15cm stricture that is pretty drastic. My GI is putting me on a short course of pred but if it doesn't pick up within a few days (he isn't convinced its going to do much but worth a try) ill be heading for surgery. Thanks for the great support and I hope you all get some answers soon xx

 

[UnXmas]

kellehbeans - I can only guess that your doctor meant IBS can lead to haemorrhoids and tears in the skin and so, indirectly, can lead to bleeding. Mebeverine is one of the first, usually useless, things tried for IBS, but if I remember correctly it's unusual for it to cause bad side effects so it's worth trying. It's interesting that eating a lot triggered your symptoms. I don't eat a lot in one go (I have gastroparesis, so no appetite), but my illness always gets worse when I'm gaining weight and having to eat more. Last year I was in hospital for re-feeding and eating more led to my bowel perforating. :eek2:

 

[UnXmas]

Welcome to the diagnosed side, Hayz. Though I'm diagnosed now and I still hang around here so you can always still post here if you need anything, or to help others who are not yet diagnosed.

 

[kellehbeans]

kellehbeans - I can only guess that your doctor meant IBS can lead to haemorrhoids and tears in the skin and so, indirectly, can lead to bleeding. Mebeverine is one of the first, usually useless, things tried for IBS, but if I remember correctly it's unusual for it to cause bad side effects so it's worth trying. It's interesting that eating a lot triggered your symptoms. I don't eat a lot in one go (I have gastroparesis, so no appetite), but my illness always gets worse when I'm gaining weight and having to eat more. Last year I was in hospital for re-feeding and eating more led to my bowel perforating. :eek2:

Oh my word! That's horrible! I can't imagine the pain you went through!

You'd think she would mean that about the bleeding, however she was deadly serious about your colon bleeding with no hemmy. I couldn't believe it! Needless to say, she annoyed me last time she called me too! I didn't want to tell her she was wrong though. These meds give me such bad heartburn and indigestion - although it's not a side effect!

Well done Hayz! Stick around and let us know how you get on!

 

[Marley0724]

So update... My colonoscopy is scheduled for July 13th. Did my bloodwork tho it showed low TSH and High absolute lymphocytes...not sure what it means haha

 

[UnXmas]

Oh my word! That's horrible! I can't imagine the pain you went through!

You'd think she would mean that about the bleeding, however she was deadly serious about your colon bleeding with no hemmy. I couldn't believe it! Needless to say, she annoyed me last time she called me too! I didn't want to tell her she was wrong though. These meds give me such bad heartburn and indigestion - although it's not a side effect!

Well done Hayz! Stick around and let us know how you get on!

Mebeverine does cause heartburn and indigestion if that's one you're taking.

I wish I could say I'm surprised at what your doctor said about the bleeding, but I'm so used to doctors saying things that are simply not true.

Btw my bowel perforating from eating so much is not at all common, so don't be worried about the same happening to you.

 

[kellehbeans]

Unxmas- read it only caused rashes on the web, was no side effects listed at all in the booklet I got! It's awful, I lay here at night sometimes with really bad indigestion. My stomach is making some awful noises at me at the moment, but I hope that I don't wake up in pain again tonight. I tried sipping water, but obviously wasn't thirsty. Probably was my fault for eating an hour before I went to bed - but not sure why it'd be that painful.

I think most doctors just try and push us away so we leave them alone!

I guessed, considering I'd never even heard of it happening! I eat far too much in one sitting anyway - I think my years of body abuse have finally caught up with me. Stabbing pains galore recently, night time wakings.. Tests tomorrow, not going to get me any further, plus no referral yet... This is 2 weeks I've been waiting now.

 

[UnXmas]

I just suddenly realised my mention of my perforation might have sounded like a warning to you, which wasn't what I intended so I'm glad you didn't take it that way! I did intend it to show that volume of food can have effects. That said, you've not abused your body, if you're referring to having an eating disorder. My understanding is that that is an illness like any other, and as such it may have contributed to your digestive symptoms, and hopefully you will find effective treatments for both the physical and behavioural symptoms, or they may even ease off on their own.

Link to mebeverine info: http://www.medsafe.govt.nz/profs/datasheet/c/colofactab.pdf

(Side effects on page 3)

Good luck with the tests.

 

[UnXmas]

So update... My colonoscopy is scheduled for July 13th. Did my bloodwork tho it showed low TSH and High absolute lymphocytes...not sure what it means haha

TSH is Thyroid Stimulating Hormone I believe, and high lymphocytes can indicate infection or inflammation. I'm not sure what they mean in real terms though. Do you have an appointment to discuss them with your doctor?

 

[kellehbeans]

I just suddenly realised my mention of my perforation might have sounded like a warning to you, which wasn't what I intended so I'm glad you didn't take it that way! I did intend it to show that volume of food can have effects. That said, you've not abused your body, if you're referring to having an eating disorder. My understanding is that that is an illness like any other, and as such it may have contributed to your digestive symptoms, and hopefully you will find effective treatments for both the physical and behavioural symptoms, or they may even ease off on their own.

Link to mebeverine info: http://www.medsafe.govt.nz/profs/datasheet/c/colofactab.pdf

(Side effects on page 3)

Good luck with the tests.

Thank you. Just had my tests, didn't feel woozy for once! But been in a lot of pain today. Nearly admitted myself to A&E while I was at the hospital! Spoke to the nurse, and because paracetamol took the pain away (it was right-handed, and I was crippled, if I sat in one particular position, I felt fine. I was hobbling down the corridor at work!) she said it was unlikely to be appendicitis - but bloods may show some sign of inflammation and then it'll have to be investigated further. She said it also maybe UC or CD flaring up, if I do indeed have it.

EDIT: Forgot to add - stabbing pains in the left side have no subsided - and also had my referral finally. Got the NHS choose and book. My appointment is September 10th...

 

[Izzie]

Have discovered lately that drinking alcohol at all makes me terribly sick. Not even just my stomach issues, but I get achy all over, my joint pain gets really bad and I'm basically useless for 24 hours. Wondering if it's something I ought to mention to my doctor. It's not like a normal hangover kind of feeling, and it'll happen if I have a single beer even.

 

[UnXmas]

I think many doctors would respond to that by simply telling you not to drink alcohol, or they'd start seeing drinking as the cause of all your symptoms. I think it's worth mentioning, but only with doctors who you know are taking you seriously and not looking for lifesyle or psychological reasons for your illness.

Does that happen more with some types of drink than with others? Or when you eat certain foods?

 

[Izzie]

I think many doctors would respond to that by simply telling you not to drink alcohol, or they'd start seeing drinking as the cause of all your symptoms. I think it's worth mentioning, but only with doctors who you know are taking you seriously and not looking for lifesyle or psychological reasons for your illness.

Does that happen more with some types of drink than with others? Or when you eat certain foods?

That's what I've been thinking too, and I've been hesitant to bring it up for that reason. Just trying to figure out if it could be diagnostically relevant at all.

My friend suggested that it might be sulfites that's causing the reaction, and she might have a point there.

It doesn't seem healthy though, I mean I'll gladly never drink again if this is how I react to it now, but I'm curious as to what is causing it. I've not always reacted this way.

A hangover is one thing if you drink in excess, I usually get a bit of a headache and some nausea. But lately it's been a whole other animal. From hardly any drinking at all (maybe 2 beers with dinner), I'm in bed the entire day after, really bad joint pains and aches, shaking and feeling like I'm about to get the worst flu ever.

 

[Moogle33]

kellehbeans, I had food poisoning really bad about 5 or 6 years ago and things seemed worse after that. I think I had an ear infection also back in 2007 and took antibiotics. My gut was messed up after that. I think I may have had gut issues before that, but not so noticeable. It's not easy to guess why this stuff happens, but those are my best guesses. A lot of stress also, haha. My next GI appointment is about a week away. I'm going to ask if another colonoscopy is a good idea. It's been about 5 years now.

 

[gadgetninjette91]

Hey guys, hope everyone is doing well. Sorry for my absence on the forums, I've been a little bit distracted lately with various things. Been flaring since Saturday night, came on quite suddenly and was up all night in the bathroom. All of my blood tests were "normal" once again but I do have that scope on Wednesday so I start prep tomorrow. I just hope the doctor finds what he's looking for. I would imagine that it's probably worse than it was six months ago but with the Pentasa, you just never know. That stuff doesn't help me very much at all anyway and this is my second flare whilst on it, last time I was told to "be patient and let the meds work" but I have been taking this crap for two months now and am flaring once again. My biggest fear is a retraction of my diagnosis despite the symptoms being completely there, I'm now clinically underweight which should be a red flag in the first place and my doctor said he'd rather treat the patient than the test which is good but of course I'm worried about the outcome of the scope. But no anemia, no vitamin deficiencies, nothing like that. Blood tests have never been abnormal for me but I've had clear radiological abnormalities all throughout and drastic symptoms. Hopefully this gets better before it gets worse.

 

[UnXmas]

One day I hope they'll have tests that always reflect the severity of symptoms. But a doctor who recognises that currently they don't is a very good doctor to have. Good luck with the scope (and the prep).

 

[Izzie]

Finally have my appointment with a gastroenterologist tomorrow. Still haven't gotten my MRI results back so I'm hoping I'll get them then.

I'm really nervous they'll tell me it's just IBS, but I feel like I have enough "proof" that it isn't due to my test results and such.

At the very least I hope I can try a new GERD medication since the one I am on seems to exacerbate my nausea.

I'm always nervous seeing a new doctor because I've seen so many bad ones. I try to latch on to the ones who don't tell me I'm just stressed and paranoid when I find them. Hopefully this new guy is decent. If not, at least I'll have my mother along for backup.

 

[Cat-a-Tonic]

Good luck, Gadget! It sounds like your doctor is taking your symptoms seriously. Is he also taking the weight loss seriously? I knew my GI was a decent doctor when he took even a 5 lb weight loss seriously - my blood work is almost always normal, too, for whatever that's worth (although recently I actually have become slightly anemic which is new, but is likely due to my body being slow to recover from a recent bout of rectal bleeding). Anyway, good luck and keep us posted! I hope you get the results that you're looking for.

Moogle, you know what I'm going to say. It's been 5 years since your last scope, and you still have undiagnosed issues - I'd be very surprised if your doctor says no scope is needed. I would wager that another scope (or set of scopes) is in your near future. Good luck with your appointment, let us know how it goes!

Izzie, that sounds not unfamiliar to me. I get a fairly similar reaction when I consume coconut or coconut products (coconut oil, coconut flour/meal, etc). Last time it happened, I was in bed for 4 days. It last happened on thanksgiving a couple years ago - I went to my aunt's house for dinner, and she's gluten-free. She offered me gravy for my turkey and I didn't even think to ask what was in it - it turned out that since she can't thicken gravy with regular flour, she used coconut flour. It hit me within minutes - I started sweating, shaking, having stomach pains and feeling really nauseous as I was still eating my meal. It dawned on me that it must have been the gravy and I was so mad at myself for not asking what was in it, as I knew I was going to be ill for days. Thanksgiving is always a long weekend for me, that Thursday and Friday are always days off from work for me and I don't work weekends either. So I had a 4-day weekend and I spent the whole time feeling awful and being ill. I don't know what it is about coconut - no other food affects me to that extreme degree. I don't get joint pains like you mentioned, but otherwise it sounds like my coconut reaction is fairly similar to your alcohol reaction? Unfortunately the only solution I've found for coconut is to avoid it altogether. You may have to do that with alcohol as well. The sad part is, I really used to love coconut before I got sick! I would buy a whole coconut at the store and eat big chunks of it and be fine! Then IBD came along and now I can't touch it with a 10 foot pole for some reason. Hmph.

 

[gadgetninjette91]

He is absolutely taking it seriously which is good...I ended up calling my nurse practitioner today who informed the doctor I was flaring so at least he knows. I mentioned that I'd lost 5 pounds since my last appointment (was 102, 97-98 now, was on the lower end of such this morning). A year ago, I weighed 140 pounds which he also knows...just shows how much misery I went through in the last year. For today I'm confined to bland foods until I start my liquid diet tomorrow and I'm very much ok with that. Got tons of rice and white bread. Ultimately I think things will turn out ok, the nurse practitioner sounded confident that the doctor would want to put me on stronger meds so I have a feeling that biologics are in my near future. Anything to keep this from holding me back in life any longer. I'm 23 and just want to enjoy the rest of my glory years so to speak :joker:

 

[kellehbeans]

He is absolutely taking it seriously which is good...I ended up calling my nurse practitioner today who informed the doctor I was flaring so at least he knows. I mentioned that I'd lost 5 pounds since my last appointment (was 102, 97-98 now, was on the lower end of such this morning). A year ago, I weighed 140 pounds which he also knows...just shows how much misery I went through in the last year. For today I'm confined to bland foods until I start my liquid diet tomorrow and I'm very much ok with that. Got tons of rice and white bread. Ultimately I think things will turn out ok, the nurse practitioner sounded confident that the doctor would want to put me on stronger meds so I have a feeling that biologics are in my near future. Anything to keep this from holding me back in life any longer. I'm 23 and just want to enjoy the rest of my glory years so to speak :joker:

Let us know how it goes - I'd be quite interested to know myself because most of my blood tests have come back completely normal (although just had some more done, which still waiting for results to get back). Good luck to you!

 

[kellehbeans]

Hi all (again, sorry for the double post),

I'm a little troubled. High fibre seems to really hurt my stomach, and seems to make me more constipated. I have had a look around the internet, and seems that this can do this. It just generally hurts me more, so I have tried low-residue, and that seemed to help (so, needless to say, I am going back to it). I am trying low-fibre today, and possibly back to low-residue tomorrow. However, I have a problem. I think I have a fissue or a hemmy inside my actual rectum, that actually hurts when I have a BM? How can I resolve this, because it's not like I can just apply sudocream? Seems today is going to be one of those days where I am in and out of the toilet with stupidly small BM's too. Started tracking fibre and water only (I didn't realise how easy I find it to get myself to 35g of fibre - and well, if this doesn't help formation of my stool, what the hell is?). Even when I get diarrhoea, I still have these really crappy 'pebble' stools, which is expelled as well as loose. Does anybody else have this and what do you they? Psyllium doesn't help. Laxatives don't. I feel so lost and confused right now! Thursday I will call up to see if my blood test results have come in... Which I'm pretty certain, if there is some kind of inflammation, it will show up on these set of tests....

 

[UnXmas]

I used to have similar problems, I have an ileostomy now, and I am so glad not to have those issues any more. I don't know if you're having the same problems I used to, but they sound similar. Fibre is very confusing as it's supposed to be able to help both constipation and diarrhoea, but it can also make both problems worse in some cases as well, so you just have to experiment. I always did better on low fibre.

You can ask a doctor to do a digital rectal examination (finger into your bottom). This can diagnose internal haemorrhoids, rectal prolapse and other abnormalities in the rectum. A GP can do a digital rectal exam, and you don't need any prep beforehand.

If the stool is hard and fibre isn't helping, stool softeners might. However it sounds like you're having trouble emptying the bowel even with loose stool, which may indicate anorectal or pelvic floor problems. A colorectal specialist may be a good idea if your GP can't help. These kinds of tests may be useful: http://www.aboutgimotility.org/site/about-gi-motility/motility-testing/pelvic-floor

Again, I may be misinterpreting your symptoms based on the kind of symptoms I used to have, but any kind of difficulty emptying the bowel that isn't classic slow transit constipation may benefit from anorectal testing and, in women especially, pelvic floor testing. There are many treatments for these issues once they're correctly diagnosed.

 

[kellehbeans]

Thanks for that. Stool softeners do not help. Tried dulcolease and also I try the fybogel. Nothing, just nothing. If they do form, they're quite 'bitty' if you know what I mean? If some form, they can be very thin, and that worries me too. If I'm lucky, I may get one full formed stool. It's getting very confusing.

So, did you suffer with the constipation too? My fibre isn't drastically low today, but tomorrow it is planned to be hell of a lot lower. Really need to see a doctor about what may be causing the pain. It only started last week, so I think it may just need some time to heal.

 

[UnXmas]

Yes I had constipation, especially during one period where it was a side effect of a med I was taking, but I eventually found the right laxatives to treat that. But mostly my Crohn's symptoms involve diarrhoea. But before my ileostomy I also had "obstructed defecation" symptoms - a form of constipation - even though I had diarrhoea. Obstructed dfecation constipation is unlike the slow transit constipation I had caused by the med side effects. Most people with constipation have slow transit constipation: they don't go often, and when they do they have to strain and the stool is hard. With obstructed defecation the stool can be normal consistency or diarrhoea, and you can go frequently, but it's still hard to pass, you have to strain and it can be difficult to finish, and laxatives generally don't help. I also had episodes of incontinence, due to the same colorectal and pelvic floor problems that caused the defecation difficulties.

I have a wonderful colorectal specialist and tried all sorts of treatments which do work for many causes of defecation difficulties, but mine were complicated and other treatments didn't help. So eventually I got an ileostomy and I wish I'd got it earlier. It cured my defecation difficulties. Stomas can never cure Crohn's, and my defecation problems were due to another condition (but were much worse because of all the Crohn's diarrhoea), but having a stoma has ended all the obstructed defecation constipation I used to have.

 

[kellehbeans]

What medications were they, if you don't mind me asking?

So, I go often, but it's more 'constipated'. When I have diarrhoea, I do have some of these stools pass too. I strain literally most times, unless I've been holding it for a while, then I don't have to strain. Sometimes just mucus is passed. The doctors just keep sending me away with laxatives, stool bulkers and 'go do a high-fibre diet'.

What can cause obstructed defecation? Could it be caused by an underlying condition?

 

[gadgetninjette91]

What medications were they, if you don't mind me asking?

So, I go often, but it's more 'constipated'. When I have diarrhoea, I do have some of these stools pass too. I strain literally most times, unless I've been holding it for a while, then I don't have to strain. Sometimes just mucus is passed. The doctors just keep sending me away with laxatives, stool bulkers and 'go do a high-fibre diet'.

What can cause obstructed defecation? Could it be caused by an underlying condition?

I was put on Pentasa which is technically only approved for UC. I have small bowel Crohn's exclusively, no colitis to speak of. It's generally ineffective for Crohn's. Also, in regards to your questions about constipation, I have experienced this as well. With severe pain in my upper intestine at times. I have extensive bowel wall thickening which I assume has been making it more difficult for contents to pass through, hence the pain and occasional constipation. Have you had a CT scan of your abdomen? If not, I'd ask about it. I had a capsule endoscopy which was "normal", but a CT scan I had a couple months later revealed the bowel wall thickening and my colonoscopy revealed inflammation in my ileum that was biopsies and ultimately confirmed my Crohn's upon closer examination. If you haven't had one, I recommend you ask about a CT scan. It'll reveal any bowel wall thickening that you may have which is often characteristic of Crohn's, just make sure you get the both oral and IV contrasts. I hope you find some answers and some relief soon.

 

[kellehbeans]

I was put on Pentasa which is technically only approved for UC. I have small bowel Crohn's exclusively, no colitis to speak of. It's generally ineffective for Crohn's. Also, in regards to your questions about constipation, I have experienced this as well. With severe pain in my upper intestine at times. I have extensive bowel wall thickening which I assume has been making it more difficult for contents to pass through, hence the pain and occasional constipation. Have you had a CT scan of your abdomen? If not, I'd ask about it. I had a capsule endoscopy which was "normal", but a CT scan I had a couple months later revealed the bowel wall thickening and my colonoscopy revealed inflammation in my ileum that was biopsies and ultimately confirmed my Crohn's upon closer examination. If you haven't had one, I recommend you ask about a CT scan. It'll reveal any bowel wall thickening that you may have which is often characteristic of Crohn's, just make sure you get the both oral and IV contrasts. I hope you find some answers and some relief soon.

Most of my pain has been upper. Well, when I say upper, above the navel anyways. Apart from last week. Right-sided pain - gosh, that crippled me! I have just had a look at the all obstruction causes etc. and most of the symptoms fit me right down to a tee! I don't feel constipated, I just feel as if I can't expel everything. I feel I have to go a few times a day, and I don't always get rid of anything - and if I do, it's pitiful.

Not had a CT scan, I'm waiting for my first GI appointment, which is not until September 10th. I've only ever been given laxatives or IBS medications from my GP, none of which have given me any relief. So, for now, I think I am going to have to sit tight. I am going to obviously tell my GI about my issues surrounding this 'constipation', and hopefully he or she will point me in the right direction, but if they don't suggest this scan, I think I'm going to have to myself. Thanks for the advice.

 

[UnXmas]

Amitriptyline caused me constipation (I so love having a stoma and having constipation and diarrhoea not matter anymore!). I treated it with docusate sodium and lactulose.

Many things can cause obstructed defecation. In women, especially those past menopause or who have given birth, it can be related to pelvic prolapses. Neurological conditions can also cause it. The site I linked to above lists some of these: http://www.aboutgimotility.org/site/about-gi-motility/disorders-of-the-pelvic-floor/

This site also has a lot of information: http://sydney.edu.au/medicine/nepea...c_Floor_Assessment/Obstructed_Defecation.html

But this may not be what you're experiencing - it's more a set of symptoms that a specific condition, and it sounds like more of your digestive system is involved than just the rectum.

But there are a number of treatments that can help you empty your bowel, whatever the cause: rectal catheters, and various types of enemas and suppositories, biofeedback, and minor surgery to repair any prolapse if a prolapse is involved. I also had botox injections in my bowel. It didn't help me but apparantly it works for some.

But first you need to see a specialist and get more basic tests done, I don't want you to worry about all these things as they're just possibilities.

 

[Izzie]

Soo, the MRI showed absolutely nothing. Relieved but annoyed.

Had my appointment with the gastroenterologist.

I basically got the old IBS speech and he even tried to write off my really severe reflux as stress, "just in my head" and part of the supposed IBS. Even tried to take away my reflux meds! He basically told me I'm just imagining everything, it's stress, there's no relief to be found and there's nothing he or any other doctor can do.

I gave him a relatively calm (I was pissed but I managed to control my tone) piece of my mind and he changed his tune, though. I pointed out that you do not bleed from IBS, you don't get anemia from IBS, you don't get relief from "imagined" reflux from PPIs. He agreed, after some pushing and me asking questions he couldn't answer.

So now I'm on a new reflux med, iron supplements, and waiting on a pill cam and possibly a fourth upper scope...

If those also show nothing, his splendid advice was: "you'll just have to tough it out I guess."

It was an odd doctor's visit. He went from being completely useless, to sympathetic, to helpful and back again. Overall it could've gone worse, I had to put my foot down but at least he wasn't hard to convince.

 

[kellehbeans]

I've definitely not had any children, and definitely not hitting menopause - at 22! I'm not sure when this all got bad, I've just noticed it a hell of a lot more in the last 5 months, obviously getting progressively worse. What can it mean if laxatives just do not work? I'm highly considering taking some more later, just to see if I can get some proper movement going on, rather that my 'one poop per movement' day that I'm having today.

I will definitely ask for more tests and different ways to help, because this is getting quite stressful, and I just want to feel like my bowels are empty. It seems my bowel movements today, even just one poop, are taking an hour and a half after eating to get through. Just so uncomfortable today, and not to mention stupidly fatigued.

 

[UnXmas]

Soo, the MRI showed absolutely nothing. Relieved but annoyed.

Had my appointment with the gastroenterologist.

I basically got the old IBS speech and he even tried to write off my really severe reflux as stress, "just in my head" and part of the supposed IBS. Even tried to take away my reflux meds! He basically told me I'm just imagining everything, it's stress, there's no relief to be found and there's nothing he or any other doctor can do.

I gave him a relatively calm (I was pissed but I managed to control my tone) piece of my mind and he changed his tune, though. I pointed out that you do not bleed from IBS, you don't get anemia from IBS, you don't get relief from "imagined" reflux from PPIs. He agreed, after some pushing and me asking questions he couldn't answer.

So now I'm on a new reflux med, iron supplements, and waiting on a pill cam and possibly a fourth upper scope...

If those also show nothing, his splendid advice was: "you'll just have to tough it out I guess."

It was an odd doctor's visit. He went from being completely useless, to sympathetic, to helpful and back again. Overall it could've gone worse, I had to put my foot down but at least he wasn't hard to convince.

I would not see this doctor again. You don't want a doctor you have to convince of anything.

 

[UnXmas]

I've definitely not had any children, and definitely not hitting menopause - at 22! I'm not sure when this all got bad, I've just noticed it a hell of a lot more in the last 5 months, obviously getting progressively worse. What can it mean if laxatives just do not work? I'm highly considering taking some more later, just to see if I can get some proper movement going on, rather that my 'one poop per movement' day that I'm having today.

I will definitely ask for more tests and different ways to help, because this is getting quite stressful, and I just want to feel like my bowels are empty. It seems my bowel movements today, even just one poop, are taking an hour and a half after eating to get through. Just so uncomfortable today, and not to mention stupidly fatigued.

Well I developed pelvic floor problems as a teenager, so it's not impossible. What strength laxatives have you been taking? What happens if you increase the dose?

 

[kellehbeans]

Well I developed pelvic floor problems as a teenager, so it's not impossible. What strength laxatives have you been taking? What happens if you increase the dose?

Do you know how it started? I wasn't doubting the pelvic floor problems, by the way, I was just saying I definitely did not get it through menopause or having a baby!

Laxatives have been dulcolax. Not sure what dose they are. I've tried senna too. Senna, I could take up to 6 and not have anything, except a sore stomach. I can experiment tonight, as I have a therapy group tomorrow and not doing anything too strenuous. They are aware of my stomach issues, so will not worry too much if I leave to use the bathroom.

Dulcolax I can use, take about 4 (I know I shouldn't) and just have a miserable stomach. I can be on the toilet 11 times, but not expel anything properly, and still like I have not finished. I can try it again, but are there any others you can recommend from UK pharmacies that are OTC?

 

[Izzie]

I would not see this doctor again. You don't want a doctor you have to convince of anything.

In this entire journey through the lapyrinth that is health care I've hardly ever seen the same doctor twice, so I doubt it'll be a problem.

Besides, I'm moving to a new city in a matter of months, so I'll have to transfer to a new hospital then anyway.

Doctors make the most illogical assumptions sometimes. For a second there he tried to explain away my anemia with "you're a woman, you have periods!" - when I have had periods for 13 years already and I've never once been anemic before this, and my anemia comes with severe stomach pains, actually seeing abnormal black/tarry stools, and fatigue...

A couple questions to those of you who might know more about all this than I do:
1) Is it possible for IBS to mimic reflux symptoms exactly? This doctor claimed I don't actually have reflux, because there's no significant damage to my esophagus. My symptoms have been helped by PPIs though.

2) Does it sound reasonable for bile reflux (not even 100% diagnosed to have this, but it's been suggested), to cause repeated upper GI bleeding severe enough to give you anemia?

3) Will a pill cam only show the small bowel, or the esophagus/stomach/colon etc. as well?

 

[UnXmas]

Do you know how it started? I wasn't doubting the pelvic floor problems, by the way, I was just saying I definitely did not get it through menopause or having a baby!

Laxatives have been dulcolax. Not sure what dose they are. I've tried senna too. Senna, I could take up to 6 and not have anything, except a sore stomach. I can experiment tonight, as I have a therapy group tomorrow and not doing anything too strenuous. They are aware of my stomach issues, so will not worry too much if I leave to use the bathroom.

Dulcolax I can use, take about 4 (I know I shouldn't) and just have a miserable stomach. I can be on the toilet 11 times, but not expel anything properly, and still like I have not finished. I can try it again, but are there any others you can recommend from UK pharmacies that are OTC?

I have really complicated medical problems, I have a genetic condition that affects pretty much my entire body.

The best advice I can give is to find a good colorectal specialist. Or if you have a good GP, they could do an exam to rule out the more obvious rectal abnormalities, like prolapses. You haven't had any bladder symptoms have you?
Nothing OTC ever helped me with those symptoms, laxatives only helped me when I had slow transit constipation as a med side effect. But my specialist tried me on glycerin suppositories as he thought they stood a better chance of emptying my bowel than oral laxatives, and you can get them OTC.

 

[kellehbeans]

In this entire journey through the lapyrinth that is health care I've hardly ever seen the same doctor twice, so I doubt it'll be a problem.

Besides, I'm moving to a new city in a matter of months, so I'll have to transfer to a new hospital then anyway.

Doctors make the most illogical assumptions sometimes. For a second there he tried to explain away my anemia with "you're a woman, you have periods!" - when I have had periods for 13 years already and I've never once been anemic before this, and my anemia comes with severe stomach pains, actually seeing abnormal black/tarry stools, and fatigue...

A couple questions to those of you who might know more about all this than I do:
1) Is it possible for IBS to mimic reflux symptoms exactly? This doctor claimed I don't actually have reflux, because there's no significant damage to my esophagus. My symptoms have been helped by PPIs though.

2) Does it sound reasonable for bile reflux (not even 100% diagnosed to have this, but it's been suggested), to cause repeated upper GI bleeding severe enough to give you anemia?

3) Will a pill cam only show the small bowel, or the esophagus/stomach/colon etc. as well?

Woah Izzy! That is awful! How can anaemia from periods give you black/tarry stools?! I got told IBS could cause bleeding - she must have meant from haemorrhoids, but if she did not - then she was definitely misinformed! You definitely need to have another opinion - or at least keep away from that doctor!

I'm quite interested in your first question. I suddenly have been suffering from some bad reflux, heart burn and indigestion. My symptoms seemed to have worsened after taken PPI's. Anti-sickness pills seemed to help my case though, so may have to get another prescription for this. Just because you have no damage to your oesophagus, I don't think that is a strong indication that you DON'T have acid reflux. To proclaim that you are making it up is ridiculous. I also don't think acid reflux can be a sign of IBS, but then I could be wrong.

@UnXmas - Ah, I see. I will definitely just have to sit this out. I am going to experiment a little with some laxatives tonight though, I know I probably shouldn't, and it'll probably hurt a little tomorrow, but I'm going to have to see. I may have a look for these suppositories next time I go to the pharmacy. Thank you.

 

[Izzie]

Woah Izzy! That is awful! How can anaemia from periods give you black/tarry stools?! I got told IBS could cause bleeding - she must have meant from haemorrhoids, but if she did not - then she was definitely misinformed! You definitely need to have another opinion - or at least keep away from that doctor!

I'm quite interested in your first question. I suddenly have been suffering from some bad reflux, heart burn and indigestion. My symptoms seemed to have worsened after taken PPI's. Anti-sickness pills seemed to help my case though, so may have to get another prescription for this. Just because you have no damage to your oesophagus, I don't think that is a strong indication that you DON'T have acid reflux. To proclaim that you are making it up is ridiculous. I also don't think acid reflux can be a sign of IBS, but then I could be wrong.

@UnXmas - Ah, I see. I will definitely just have to sit this out. I am going to experiment a little with some laxatives tonight though, I know I probably shouldn't, and it'll probably hurt a little tomorrow, but I'm going to have to see. I may have a look for these suppositories next time I go to the pharmacy. Thank you.

My reflux certainly hasn't gone away with PPIs and the bleeding is still happening so I'm leaning towards that not being the cause of the bleeding regardless. I figure that would've shown up on one of the scopes. Oh well, he was at least willing to prescribe some different meds (Ranitidine this time) for me to try, so if I do have reflux like I know I do, at least it's getting treated.

He didn't exactly claim I was making it up, but that it was a part of IBS, and IBS is - and I'm quoting the man here - "basically just a catch-all diagnosis for people who get stomach problems that are just in their heads". I found it quite absurd that he told me that there is no treatment for IBS, too, since I know plenty of people with IBS who are on various medications and supplements that help them function.

This one was one of the better "bad" doctors I've come across since he at least didn't keep insisting he was right after I told him off :lol2: The worst kind are the ones who make you feel like you're insane for being sick.

In a way I can understand the hesitance, I'm sure there are plenty of people who do complain of stomach problems whose issues are rooted in stress. Stress is taxing for the body, I totally get that. But there are some indicators you can't brush off with "stress".

 

[kellehbeans]

My reflux certainly hasn't gone away with PPIs and the bleeding is still happening so I'm leaning towards that not being the cause of the bleeding regardless. I figure that would've shown up on one of the scopes. Oh well, he was at least willing to prescribe some different meds (Ranitidine this time) for me to try, so if I do have reflux like I know I do, at least it's getting treated.

He didn't exactly claim I was making it up, but that it was a part of IBS, and IBS is - and I'm quoting the man here - "basically just a catch-all diagnosis for people who get stomach problems that are just in their heads". I found it quite absurd that he told me that there is no treatment for IBS, too, since I know plenty of people with IBS who are on various medications and supplements that help them function.

This one was one of the better "bad" doctors I've come across since he at least didn't keep insisting he was right after I told him off :lol2: The worst kind are the ones who make you feel like you're insane for being sick.

In a way I can understand the hesitance, I'm sure there are plenty of people who do complain of stomach problems whose issues are rooted in stress. Stress is taxing for the body, I totally get that. But there are some indicators you can't brush off with "stress".

My GI appointment is for suspected GERD and also whatever the hell is going on inside of me. The fact you are bleeding says to me, that that is more of a red flag that anything else and NOT IBS. Just keep us updated! Stress is definitely a bad thing, and I am also a huge victim to that!

 

[Izzie]

My GI appointment is for suspected GERD and also whatever the hell is going on inside of me. The fact you are bleeding says to me, that that is more of a red flag that anything else and NOT IBS. Just keep us updated! Stress is definitely a bad thing, and I am also a huge victim to that!

The "funny" thing is that I was already diagnosed with GERD by another doctor, but this one apparently decided that his colleague was wrong..? I don't even know. I'm moving to a bigger city with a not quite so second-rate hospital, so I'm hoping to get some better care there if I still need it.

Good luck with your GI appointment, I hope you find a doctor you click with and who listens, that's half the battle won right there.

 

[UnXmas]

I've been diagnosed with GERD and gastroparesis (they often go together). A gastric emptying study diagnosed gastroparesis, and my endoscopies show inflammation from reflux and bile reflux, which they distinguish from Crohn's inflammation. I don't know if they can cause anaemia - I've never been warned about it. I'm on iron supplements anyway, because I've got an ileostomy and suffer from malabsorption of many things, so I've no way of knowing if I'd have got it just from the reflux inflammation.

My experiences suggest most doctors are quite casual about the criteria for diagnosing reflux, like many are with IBS. If they think you have IBS, some will not be put off diagnosing it because you bleed sometimes. I'm not sure if reflux can be officially diagnosed without signs of inflammation. I know it's often diagnosed based on symptoms alone, an endoscopy would only be used if it's complicated (e.g. like you having other bowel symptoms). But reflux is kind of obvious I would have thought. There may be various causes of it, but if you're bringing up food and get that acidy taste in your mouth, along with heartburn (which feels just as it sounds) then I would have thought you have reflux regardless of whether it's been bad enough to cause visible damage.

Though no refllux meds have ever been able to ease my reflux symptoms, so I'm not sure how reliable being responsive to treatments is as a way of diagnosing it.

In answer to the pill cam question, I think it looks at the whole of your digestive tract, but is usually only used when they want to look at the parts of the small intestine that can't be seen with normal scopes. I was supposed to have a pill cam but I refused because I was worried it would block my stoma. But my doctors said that they didn't expect it to show anything not already seen with my upper endoscopy and small bowel MRI, they just wanted to do it in order to be thorough. I have no large intestine, so in my case that was irrelevant. They wanted it because the inflammation they'd already found didn't justify the extent of the malabsorption I suffer from. But I got the impression that pill cams aren't likely to show much that can't be found with other scopes and imaging.

 

[UnXmas]

@UnXmas - Ah, I see. I will definitely just have to sit this out. I am going to experiment a little with some laxatives tonight though, I know I probably shouldn't, and it'll probably hurt a little tomorrow, but I'm going to have to see. I may have a look for these suppositories next time I go to the pharmacy. Thank you.

Good luck! I'm very liberal with my interpretations of recommended dosages for many meds, but laxatives are definitely one to build up gradually until you know how your body reacts.

 

[kellehbeans]

The "funny" thing is that I was already diagnosed with GERD by another doctor, but this one apparently decided that his colleague was wrong..? I don't even know. I'm moving to a bigger city with a not quite so second-rate hospital, so I'm hoping to get some better care there if I still need it.



Good luck with your GI appointment, I hope you find a doctor you click with and who listens, that's half the battle won right there.

That's odd. Although, think they need to do more testing before GERD is actually diagnosed? Again; not entirely sure. Hopefully you'll find better results by changing city, which of course means changing doctors.

Thanks. I'm hoping I get somebody nice at least. Just a long old wait!!

@Unxmas - here goes nothing! Also threw in some stool softeners for good measure. Went to gym (too fatigued and unmotivated to have enjoyed it though), and that has upset my stomach a little, but not enough to get past this problem I seem to have. We shall see what they have done come tomorrow morning.

 

[Cat-a-Tonic]

I've been diagnosed with severe GERD and my initial diagnosis was literally just, I told my GP what my symptoms were and he said "you have GERD." I did have testing for it after that, though. Specifically, I had what's called a pH impedance test. In a nutshell, they stick an NG tube with sensors on it in you for 24 hours and measure how often you reflux, how long each reflux episode is, how acidic your reflux is, how high in your throat your reflux goes, and they make you do trigger things for your reflux such as eating trigger foods or exercising or whatever sets off your reflux. My results were rather shocking - I knew that my GERD had been bothersome but I didn't realize how bad it really was. In 24 hours, I had 48 separate episodes of reflux, and the longest episode was over 5 hours long. Just over half my episodes of reflux reached the top of my throat/back of my mouth. I basically just reflux all the time. They gave me a score on the test, zero means you have no GERD and you're fine, and 100 means you have the worst GERD ever - my score was a 95! It was an extremely eye-opening test to have as I had no idea things were that bad. So for those who have been diagnosed with GERD just based on symptoms and not test results, you may want to ask about having the pH impedance test.

(I feel like I should clarify - some of you seem to be questioning whether or not you have GERD at all. I definitely always felt I had GERD from the initial onset of my symptoms, the test was not to confirm whether I have GERD, it was rather to see how bad my GERD really is as I hadn't been responding so well to medications. Of course, if you do have the test, it won't tell you if there's an underlying cause to your GERD. I have a hiatal hernia which is likely contributing to my GERD, but frustratingly my GI says it's "small and sliding" so it shouldn't be causing such severe symptoms, so the true cause of my GERD is still a mystery. I don't seem to have gastroparesis, either as I don't fit the symptoms, my pill cam showed my stomach emptying normally, and I didn't respond to a gastroparesis med that my GI had me try.)

 

[UnXmas]

I've not even heard of that test. I was told so positively of my diagnosis after my first endoscopy, I didn't think about ways of measuring severity. Not that I particularly want yet another test. Did it mean anything different in the treatments they tried for you?

Has a gastric emptying study ever been suggested for you? I don't respond to domperidone (Motileum) but my results showed severe gastroparesis. It distinguishes rates of emptying of solids and liquids too, I'm not sure whether that's useful information or not! But apparently it's unusal if you're found to have delays with liquids so that can be a sign of needing more investigation. An official diagnosis of gastroparesis was important for me purely for validation purpose - I was so fed up of doctors and everyone else telling me I couldn't possibly be as full as I claimed. Or do you have no appetite problems?

 

[gadgetninjette91]

Most of my pain has been upper. Well, when I say upper, above the navel anyways. Apart from last week. Right-sided pain - gosh, that crippled me! I have just had a look at the all obstruction causes etc. and most of the symptoms fit me right down to a tee! I don't feel constipated, I just feel as if I can't expel everything. I feel I have to go a few times a day, and I don't always get rid of anything - and if I do, it's pitiful.

Not had a CT scan, I'm waiting for my first GI appointment, which is not until September 10th. I've only ever been given laxatives or IBS medications from my GP, none of which have given me any relief. So, for now, I think I am going to have to sit tight. I am going to obviously tell my GI about my issues surrounding this 'constipation', and hopefully he or she will point me in the right direction, but if they don't suggest this scan, I think I'm going to have to myself. Thanks for the advice.

Absolutely ask about that CT scan. It may really help you get a better picture. If you get pain under your rib cage which I do it could mean jejunal (upper small intestinal) involvement is present, it's uncommon but it does happen, happened to me and my unusual presentation baffled my doctor at first. But if there is any jejunal thickening that can be a bit more dangerous than the typical ileum/colon presentation. My new GI was very concerned about those findings but if you do end up having thickening up top, don't panic. I did panic at first, yes, but I just have to stay on top of things and hopefully I won't have too many problems down the line though I do have scary thoughts at times about what could happen. Just try to stay positive. Also, is your right sided pain more upper or lower? If it's lower, it could indicate inflammation in the ileum which would need to be looked at through a colonoscopy and then biopsied. Thankfully for me I had very obvious signs of inflammation down there but don't give up, I'm hoping you can get some answers, let me know how things go and if you arrange that CT scan.

Edit: just wanted to add my two cents on the subject of GERD. I have GERD that was confirmed by biopsy during an upper endoscopy. I would imagine that's the best way to really confirm whether you have it or not, my gastric lining was very red but only mild inflammation thankfully. But the biopsy said the inflammation was consistent with GERD and it remains an additional diagnosis for me. I take Prilosec every day which helps a little but I still have a lot of belching which I think stems from stuff not being able to move through my upper intestine too well. Upper endoscopies can be nerve-racking but I think that's probably the best way to confirm a diagnosis of GERD.

 

[kellehbeans]

Absolutely ask about that CT scan. It may really help you get a better picture. If you get pain under your rib cage which I do it could mean jejunal (upper small intestinal) involvement is present, it's uncommon but it does happen, happened to me and my unusual presentation baffled my doctor at first. But if there is any jejunal thickening that can be a bit more dangerous than the typical ileum/colon presentation. My new GI was very concerned about those findings but if you do end up having thickening up top, don't panic. I did panic at first, yes, but I just have to stay on top of things and hopefully I won't have too many problems down the line though I do have scary thoughts at times about what could happen. Just try to stay positive. Also, is your right sided pain more upper or lower? If it's lower, it could indicate inflammation in the ileum which would need to be looked at through a colonoscopy and then biopsied. Thankfully for me I had very obvious signs of inflammation down there but don't give up, I'm hoping you can get some answers, let me know how things go and if you arrange that CT scan.

When I couldn't move - the pain was lower on the right side. earlier it was upper. Most of my pain is left-sided however. Definitely need scans. Somebody told me to push for a barium meal because apparently that is one of the best to do. I want the CT scan now though, but just a long wait. How long have you been diagnosed and what symptoms did you have before you were?

 

[gadgetninjette91]

When I couldn't move - the pain was lower on the right side. earlier it was upper. Most of my pain is left-sided however. Definitely need scans. Somebody told me to push for a barium meal because apparently that is one of the best to do. I want the CT scan now though, but just a long wait. How long have you been diagnosed and what symptoms did you have before you were?

Yeah lower right sided pain is definitely a red flag. I've only had a so-called confirmed diagnosis for a couple of months but I had suspected Crohn's going on for a good four months before my diagnosis was finalized. A lot of mixed bag test results brought me into this club in the first place but I pursued answers after seeing two horrible doctors. Symptom-wise, it basically started very gradually and started with short episodes of diarrhea every couple of months, eventually became once a month and I started to feel nauseous when I got up in the morning. Then I started to have diarrhea for weeks on end. Then my symptoms disappeared spontaneously for a good 7 months but came back much more strongly when they did return. Had diarrhea several times a week and sometimes for months at a time. I started becoming more sensitive to certain foods and stuff started to make me throw up, I used to throw up maybe once every 5 years but two episodes in a two-month period was very alarming for me. Changing my diet helped the vomiting but not the nausea. I've also experienced very dramatic weight loss, a year ago I weighed 140, a year later with typical Crohn's flares that come and go I now weigh 97-98 pounds and am clinically underweight. So that's how it played out for me. Mixed bag of results but lots of radiological abnormalities and very dramatic symptoms helped secure my diagnosis. Wishing you the best of luck!

 

[kellehbeans]

Wow gadget, that's insane! That's a definite red flag! I think if I got like that, I'd be all over the place and keep pestering my GP!

The right sided only happened once, was calmed with paracetamol. So, I'm not sure what happened there and I've started to class it as a one off. That was a week ago, tomorrow.

Random question for anybody really - can't find too much on the internet about it. I have a reddy-orange 'cloud' around stool. I can only find bleeding being either bright red, or dark. My stool has got a bit darker, but I'm concerned I've started to bleed. I'll watch it for a week but do I go back to my GP and complain (so see if it's a hemmy or fissure)and maybe get an emergency GI appt or do I just sit it out?

 

[Cat-a-Tonic]

I've not even heard of that test. I was told so positively of my diagnosis after my first endoscopy, I didn't think about ways of measuring severity. Not that I particularly want yet another test. Did it mean anything different in the treatments they tried for you?

Has a gastric emptying study ever been suggested for you? I don't respond to domperidone (Motilum) but my results showed severe gastroparesis. It distinguishes rates of emptying of solids and liquids too, I'm not sure whether that's useful information or not! But apparently it's unusal if you're found to have delays with liquids so that can be a sign of needing more investigation. An official diagnosis of gastroparesis was important for me purely for validation purpose - I was so fed up of doctors and everyone else telling me I couldn't possibly be as full as I claimed. Or do you have no appetite problems?

The pH impedance test did initially mean that I got a bit of a change in medication - instead of the usual 40 mg dose of Nexium, my GI bumped me up to a double 80 mg dose to see how I did with that. I unfortunately did quite poorly with that - at the time I was still on Asacol, which requires a certain pH in the intestine to break down in the right spot (I'm sure it's more complicated than that, but that's my very general understanding of how it works). My pH was so thrown out of whack by that much Nexium that I wasn't able to break down my Asacol. So I went back down to 40 mg. I did get to go on a higher dose of Zantac (ranitidine) - I take 300 mg twice a day, once before working out and once before bed. So 600 mg ranitidine and 40 mg of Nexium has been working pretty well for me for awhile now. I do think the test was worthwhile even with just those minor changes to my medication regime - my GI now definitely takes my GERD very seriously. He knows I'm not exaggerating when I tell him it's been bad. (Lately it's actually been not too bad at all, possibly because I've been avoiding abdominal exercises.)

I think Motileum was the one I tried as well, that sounds familiar. No, I don't really have appetite problems. I think I'm in remission and I mostly have good days lately, and I have no trouble eating a lot. Like, I sometimes eat too much and I actually have a bit of weight to lose! (I'm about 10 lbs heavier than my usual "healthy" weight thanks to the steroids I was on last year and earlier this year.) I'm fairly confident that I don't have gastroparesis, as the pill cam should have picked up on it and I have a very good appetite most days. The only times that I don't have much appetite are when I'm experiencing other symptoms such as nausea, diarrhea, abdo pains, etc. I don't think I ever have low/no appetite by itself without anything else going on. I know that with my GERD it's something I should probably be tested further for, just in case. If/when the GERD gets really nasty again then I'll bring up the topic with my GI. There's one other GERD-related test that I should have at some point, anyway, which is esophageal manometry - to see if my esophageal motility is normal or not (in layman's terms, to see if my esophagus moves food into my stomach normally, or if food just sort of sits there too long, much like gastroparesis except in the esophagus rather than in the stomach). If it's normal then I'd be a good candidate for the nissen fundoplication surgery to fix my hiatal hernia. If my esophageal motility is abnormal, my GI said that the fundoplication would actually most likely make my GERD far worse. So if I ever consider the surgical route, I need to have more tests first anyway.

 

[Izzie]

I've been diagnosed with severe GERD and my initial diagnosis was literally just, I told my GP what my symptoms were and he said "you have GERD." I did have testing for it after that, though. Specifically, I had what's called a pH impedance test. In a nutshell, they stick an NG tube with sensors on it in you for 24 hours and measure how often you reflux, how long each reflux episode is, how acidic your reflux is, how high in your throat your reflux goes, and they make you do trigger things for your reflux such as eating trigger foods or exercising or whatever sets off your reflux. My results were rather shocking - I knew that my GERD had been bothersome but I didn't realize how bad it really was. In 24 hours, I had 48 separate episodes of reflux, and the longest episode was over 5 hours long. Just over half my episodes of reflux reached the top of my throat/back of my mouth. I basically just reflux all the time. They gave me a score on the test, zero means you have no GERD and you're fine, and 100 means you have the worst GERD ever - my score was a 95! It was an extremely eye-opening test to have as I had no idea things were that bad. So for those who have been diagnosed with GERD just based on symptoms and not test results, you may want to ask about having the pH impedance test.

(I feel like I should clarify - some of you seem to be questioning whether or not you have GERD at all. I definitely always felt I had GERD from the initial onset of my symptoms, the test was not to confirm whether I have GERD, it was rather to see how bad my GERD really is as I hadn't been responding so well to medications. Of course, if you do have the test, it won't tell you if there's an underlying cause to your GERD. I have a hiatal hernia which is likely contributing to my GERD, but frustratingly my GI says it's "small and sliding" so it shouldn't be causing such severe symptoms, so the true cause of my GERD is still a mystery. I don't seem to have gastroparesis, either as I don't fit the symptoms, my pill cam showed my stomach emptying normally, and I didn't respond to a gastroparesis med that my GI had me try.)

Very fascinating. I also have a hiatal hernia, that AND the GERD was already diagnosed by the doctor who did my last scope, but this last doctor claims that "everyone" has a hiatal hernia and it's still just IBS. He also kept correcting me when I told him about my really bad pain. He kept refering to it as "a bit of discomfort". Ugh, for some reason in my experience male doctors have a tendency to talk down to female patients as though they are complete idiots.

I didn't know there was such a test. If this new reflux medication doesn't siginificantly ease the symptoms I'll definitely ask about it.

@UnXmas: Yes, I was also under the impression that they're not expecting to find much on the pill cam. Which still leaves me with the question why the heck am I bleeding and from where. I'd happily accept an IBS diagnosis if I thought it seemed like an adequate explanation but it just isn't.

But it's like one doctor told me: they try to rule out anything dangerous and then sometimes they don't find what the actual problem is until years down the line because someone missed something or it wasn't obvious or whatever.

 

[kellehbeans]

Laxative update - Pain is almost so bad, I can barely move. I'm going to head to the pharmacy later and see what else they can give me. I took quite a few, so I thought this would cause some movement - even ate liquorice. However, the pain culprit of sharp pain is left upper quadrant - but pain is pretty much wide spread. I could try eating a Big Tasty for McDonald's - I know my stomach hates those - but I don't think that's going to work right now! Shame, as somebody bought me a pack of Minion Haribo and left them on my desk. I'll just have to sit and stare at them. :-(

 

[UnXmas]

Edit: just wanted to add my two cents on the subject of GERD. I have GERD that was confirmed by biopsy during an upper endoscopy. I would imagine that's the best way to really confirm whether you have it or not, my gastric lining was very red but only mild inflammation thankfully. But the biopsy said the inflammation was consistent with GERD and it remains an additional diagnosis for me. I take Prilosec every day which helps a little but I still have a lot of belching which I think stems from stuff not being able to move through my upper intestine too well. Upper endoscopies can be nerve-racking but I think that's probably the best way to confirm a diagnosis of GERD.
__________________

I was knocked out for my last upper endoscopy, I don't remember a thing. Different doctors/hospitals seem to have different preferences. My first was done years ago and I wasn't given a choice, I had to be awake through it. It wasn't the most awful test I've had done, I think if someone's ok with dentists an upper scope won't be too bad, but I still opt for full sedation at the (far superior) hospital I go to now.

 

[UnXmas]

Laxative update - Pain is almost so bad, I can barely move. I'm going to head to the pharmacy later and see what else they can give me. I took quite a few, so I thought this would cause some movement - even ate liquorice. However, the pain culprit of sharp pain is left upper quadrant - but pain is pretty much wide spread. I could try eating a Big Tasty for McDonald's - I know my stomach hates those - but I don't think that's going to work right now! Shame, as somebody bought me a pack of Minion Haribo and left them on my desk. I'll just have to sit and stare at them. :-(

If the pain's getting worse, I'd stop the laxatives. Most laxatives can cause cramping and other nasty side effects, so if they're not clearing your bowel, they are more likely to make pain worse. Sorry, personal question, but have you had a bowel movement recently? And if you had, was it watery? (No bowel movement or only watery bowel movement could mean a compaction or blockage.)

If it's really bad, I'd maybe see if you can get an urgent GP appointment. They could do an abdominal and rectal exam, an abdominal exam might reveal more if done when you're feeling your worst.

 

[kellehbeans]

If the pain's getting worse, I'd stop the laxatives. Most laxatives can cause cramping and other nasty side effects, so if they're not clearing your bowel, they are more likely to make pain worse. Sorry, personal question, but have you had a bowel movement recently? And if you had, was it watery? (No bowel movement or only watery bowel movement could mean a compaction or blockage.)

If it's really bad, I'd maybe see if you can get an urgent GP appointment. They could do an abdominal and rectal exam, an abdominal exam might reveal more if done when you're feeling your worst.

I've had 4 bowel movements this morning, before 12pm. They're not watery. Just the same old pebbly thing, and I get random urges to go - stomach is really crampy. I had to run out of a therapy group to use the bathroom. Not going to take any more laxatives. I took them last night, but that is all. No more today, and I didn't intend to take any more. I'm just armed with sudocream. Doesn't seem to be any more blood today. I don't know what that was last night.

 

[Izzie]

I've had 4 bowel movements this morning, before 12pm. They're not watery. Just the same old pebbly thing, and I get random urges to go - stomach is really crampy. I had to run out of a therapy group to use the bathroom. Not going to take any more laxatives. I took them last night, but that is all. No more today, and I didn't intend to take any more. I'm just armed with sudocream. Doesn't seem to be any more blood today. I don't know what that was last night.

I've heard from my doctors that if you suspect of have confirmed GI bleeding of any kind you should be real careful with laxatives since they can cause further irritation. I actually felt a lot worse after I took them and ended up having an enema to resolve my constipation issues.

 

[kellehbeans]

I've heard from my doctors that if you suspect of have confirmed GI bleeding of any kind you should be real careful with laxatives since they can cause further irritation. I actually felt a lot worse after I took them and ended up having an enema to resolve my constipation issues.

Oops. Oops is all I can say. :-( Doesn't seem to be any more blood, however, I actually have a full formed stool just now! :dusty: I feel like I shouldn't be happy, but I am! It's been a long time. It doesn't look smooth though, but it's not cracked. I don't know how to describe it. Maybe like a piece of tree bark that has been broken off or something? Haha, sorry for the vivid imagery at lunchtime!

 

[Izzie]

Oops. Oops is all I can say. :-( Doesn't seem to be any more blood, however, I actually have a full formed stool just now! :dusty: I feel like I shouldn't be happy, but I am! It's been a long time. It doesn't look smooth though, but it's not cracked. I don't know how to describe it. Maybe like a piece of tree bark that has been broken off or something? Haha, sorry for the vivid imagery at lunchtime!

That may not be true for all kinds of laxatives, but I thought I'd warn you just in case. It's what I've been told.

And one thing this illness has done for me is completely get rid of any sensitivity to TMI that I ever had. My family has gotten to the point that we discuss various bodily functions at the dinner table :ylol:

 

[kellehbeans]

That may not be true for all kinds of laxatives, but I thought I'd warn you just in case. It's what I've been told.

And one thing this illness has done for me is completely get rid of any sensitivity to TMI that I ever had. My family has gotten to the point that we discuss various bodily functions at the dinner table :ylol:

The doctors kept prescribing me them, so I think they'll be okay with me taking them - especially as they've never tested for occult bleeding, and they seem to just brush any other sort of bleeding (including a clot) away with a wave of a hand!

I have lost my sensitivity too, just by being on this forum!

 

[Izzie]

The doctors kept prescribing me them, so I think they'll be okay with me taking them - especially as they've never tested for occult bleeding, and they seem to just brush any other sort of bleeding (including a clot) away with a wave of a hand!

I have lost my sensitivity too, just by being on this forum!

That's funny, my doctors have been the complete opposite. They're quick to brush off my positive occult bleeding test - but when I tell them I also see blood - that's when they get a move on.

Or like my last doctor, insist that it's all just because I get periods. The fact that I tested positive for occult bleeding? Periods. Even though I wasn't actually on my period at the time, it's apparently still periods :shifty-t:

A clot sounds scary, I find it really stressful to have bleeding somewhere and not be able to see it or know where it is or what's causing it.

 

[kellehbeans]

That's funny, my doctors have been the complete opposite. They're quick to brush off my positive occult bleeding test - but when I tell them I also see blood - that's when they get a move on.

Or like my last doctor, insist that it's all just because I get periods. The fact that I tested positive for occult bleeding? Periods. Even though I wasn't actually on my period at the time, it's apparently still periods :shifty-t:

A clot sounds scary, I find it really stressful to have bleeding somewhere and not be able to see it or know where it is or what's causing it.

That's strange! I just haven't had the occult bleeding stool test. I need to request it, but I really do not fancy doing it again.. I've had one for bacterial culture (which still waiting for results) and also one for calprotectin. I haven't actually told anybody that would listen to me that I had a clot (I did tell one, but she ignored me), but that's after I drank a lot the night before and I actually ended up with D, but did notice some blood.. and that clot.

Periods? That's odd. I think we'd know if we were on it! :ylol:

I just want to know if there is any other bleeding elsewhere - definitely need to request me thinks!

 

[Izzie]

That's strange! I just haven't had the occult bleeding stool test. I need to request it, but I really do not fancy doing it again.. I've had one for bacterial culture (which still waiting for results) and also one for calprotectin. I haven't actually told anybody that would listen to me that I had a clot (I did tell one, but she ignored me), but that's after I drank a lot the night before and I actually ended up with D, but did notice some blood.. and that clot.

Periods? That's odd. I think we'd know if we were on it! :ylol:

I just want to know if there is any other bleeding elsewhere - definitely need to request me thinks!

Yeah alcohol is not a friend I've found. Alcohol and caffeine just wreak havoc on my digestive system to the point that I've decided to cut them out entirely.

Yes, that is my question as well. Why is there bleeding, where is it, and will there be more? I'm just hoping I can find ONE doctor to consistently see rather than one-off visits to random doctors here and there, it's hard to get any kind of consistent care that way...

 

[kellehbeans]

Yeah alcohol is not a friend I've found. Alcohol and caffeine just wreak havoc on my digestive system to the point that I've decided to cut them out entirely.

Yes, that is my question as well. Why is there bleeding, where is it, and will there be more? I'm just hoping I can find ONE doctor to consistently see rather than one-off visits to random doctors here and there, it's hard to get any kind of consistent care that way...

I cut out caffeine for about a month. It didn't really do much to help - but it did something, and that's the goal - right? Alcohol, I'm going to go tee-total for a bit. 1) For me and 2) to support my UC boyfriend who is currently going through a very bad flare and has been for some months now.

This is true. I have become a little paranoid every time I do go to the toilet because I am concerned there is going to be more bleeding. But, at the same time, if there isn't, I start to wonder if it was all in my head originally?

 

[kellehbeans]

Ok - the laxatives have worked, possibly too many - but they never used to work on this many. I now have D. Argh!

 

[Izzie]

Ok - the laxatives have worked, possibly too many - but they never used to work on this many. I now have D. Argh!

Yikes :frown:

At least it'll clear out the ol' system?

 

[kellehbeans]

Yikes :frown:

At least it'll clear out the ol' system?

That's what I thought - so it's kind of a good thing - I think!

 

[gadgetninjette91]

Well, I'm back from my scope. I'm extremely confused and basically have one foot in the club and one foot out of the club. Doc hasn't changed my diagnosis but I have a very different picture of what was going on versus what the scope found today.

Surprise, surprise, my ileum was "normal". However, I do have what's called a tortuous colon which I did not have six months ago. Read up about it a little, says it's mainly caused by constipation and poor diet. Suggests more fiber as a treatment. The heck? If anything fiber makes me hurt more and makes me have diarrhea. I looked at the pictures from the colon and there are areas that appear narrowed. Correlating them to the CT findings, they seem to be narrowed where they found the jejunal thickening but who's to say that's even still there anymore? I would imagine so given the horrible cramping I get up there so soon after eating, and if that's the case then my jejunum could be pressing on my colon and narrowing it, just a theory. Still have to wait on biopsies but I fear that they'll come back normal as well, but if they do, I would imagine it has to do with the Pentasa. Maybe it healed me mucosally somewhat, I don't know, but I believe it's only released in the terminal ileum and nowhere else because of how effective it is for colitis. If there's still jejunal involvement it probably wouldn't be helped by the Pentasa and could be most likely causing my flares. I understand there's no way they can biopsy up there, but I have a feeling that more small bowel imaging will be in order. But like I said, I have absolutely no idea. I doubt this so-called tortuous colon is caused by any kind of constipation as I usually have regular bm's while low-residue and not actively flaring. He has me still on the Pentasa for now but hasn't changed my diagnosis, still said biologics could be in order. He will probably want to run a few more tests. But I'm worried about being undiagnosed again and worried about being written off as "IBS, eat more fiber." Probably not the most rational thing to happen given my 43-pound in a span of a year weight loss and other early telltale signs including an inflammatory-positive biopsy of my ileum from six months ago that looked like Crohn's before I was on any treatment at all. Trying to think as rationally as possible but I know something is still very wrong.

 

[kellehbeans]

Well, I'm back from my scope. I'm extremely confused and basically have one foot in the club and one foot out of the club. Doc hasn't changed my diagnosis but I have a very different picture of what was going on versus what the scope found today.

Surprise, surprise, my ileum was "normal". However, I do have what's called a tortuous colon which I did not have six months ago. Read up about it a little, says it's mainly caused by constipation and poor diet. Suggests more fiber as a treatment. The heck? If anything fiber makes me hurt more and makes me have diarrhea. I looked at the pictures from the colon and there are areas that appear narrowed. Correlating them to the CT findings, they seem to be narrowed where they found the jejunal thickening but who's to say that's even still there anymore? I would imagine so given the horrible cramping I get up there so soon after eating, and if that's the case then my jejunum could be pressing on my colon and narrowing it, just a theory. Still have to wait on biopsies but I fear that they'll come back normal as well, but if they do, I would imagine it has to do with the Pentasa. Maybe it healed me mucosally somewhat, I don't know, but I believe it's only released in the terminal ileum and nowhere else because of how effective it is for colitis. If there's still jejunal involvement it probably wouldn't be helped by the Pentasa and could be most likely causing my flares. I understand there's no way they can biopsy up there, but I have a feeling that more small bowel imaging will be in order. But like I said, I have absolutely no idea. I doubt this so-called tortuous colon is caused by any kind of constipation as I usually have regular bm's while low-residue and not actively flaring. He has me still on the Pentasa for now but hasn't changed my diagnosis, still said biologics could be in order. He will probably want to run a few more tests. But I'm worried about being undiagnosed again and worried about being written off as "IBS, eat more fiber." Probably not the most rational thing to happen given my 43-pound in a span of a year weight loss and other early telltale signs including an inflammatory-positive biopsy of my ileum from six months ago that looked like Crohn's before I was on any treatment at all. Trying to think as rationally as possible but I know something is still very wrong.

The fact they are seeing narrowings, that should be a sign, right? To me, it doesn't sound like you should be undiagnosed, especially not piled off as IBS. I hope things get better for you, this must be horrific for you. I've never heard of torturous colon before though!

 

[kellehbeans]

Got my test results back today, and I have come to my own little conclusion that it is all in my head or I do in fact have IBS.

My FBC came back completely normal, no raised WBC, my H.Pylori test came back normal (so, that rules out stomach ulcers, and maybe healing them with antibiotics) and also my stool bacteria culture came back normal. I was wondering if they test for occult bleeding during that stool test or even the calprotectin one, does anybody know? But I'm pretty sure there's not a lot of action going on.

I'm so fed up with this, and also very fed up with these week. It's one thing after another. So, I am now no closer, and have to wait until 10th September, probably to be told that it is IBS.

Just found a site that literally describes my left-sided pain (adjacent to belly button, which feels like a stabbing) as IBS, down to a tee..

"8. IBS

Irritable bowel syndrome (IBS) causes symptoms of abdominal cramps as well as gas and bloating, diarrhea and passing small hard stools. This is a disorder of the gut that gives structural problems as well as physical issues. It can cause the bowel movement to be any range from constipation through diarrhea"

Pretty much think it's that now.

 

[Izzie]

Got my test results back today, and I have come to my own little conclusion that it is all in my head or I do in fact have IBS.

My FBC came back completely normal, no raised WBC, my H.Pylori test came back normal (so, that rules out stomach ulcers, and maybe healing them with antibiotics) and also my stool bacteria culture came back normal. I was wondering if they test for occult bleeding during that stool test or even the calprotectin one, does anybody know? But I'm pretty sure there's not a lot of action going on.

I'm so fed up with this, and also very fed up with these week. It's one thing after another. So, I am now no closer, and have to wait until 10th September, probably to be told that it is IBS.

Just found a site that literally describes my left-sided pain (adjacent to belly button, which feels like a stabbing) as IBS, down to a tee..

"8. IBS

Irritable bowel syndrome (IBS) causes symptoms of abdominal cramps as well as gas and bloating, diarrhea and passing small hard stools. This is a disorder of the gut that gives structural problems as well as physical issues. It can cause the bowel movement to be any range from constipation through diarrhea"

Pretty much think it's that now.

Did your problems come on very suddenly?

That's the thing I'm having the most issue with understanding, why IBS would start literally over night. That and the bleeding part.

I had a long discussion with a friend today where I wondered when it's time to just be like "okay, so I have something, and I bleed internally sometimes, but whatever life goes on" rather than badger unwilling doctors to find what's wrong.

Once you've had enough tests, and if most of them come back okay and no one is finding a cause of your problems, I mean... you have to live with it, I guess?

Probably a question better posed to the veteran undiagnosed people in this thread :ycool:

 

[kellehbeans]

Did your problems come on very suddenly?

That's the thing I'm having the most issue with understanding, why IBS would start literally over night. That and the bleeding part.

I had a long discussion with a friend today where I wondered when it's time to just be like "okay, so I have something, and I bleed internally sometimes, but whatever life goes on" rather than badger unwilling doctors to find what's wrong.

Once you've had enough tests, and if most of them come back okay and no one is finding a cause of your problems, I mean... you have to live with it, I guess?

Probably a question better posed to the veteran undiagnosed people in this thread :ycool:

They told me I had IBS when I was 14 (I went in asking for more pills to control the pain I had during periods), which is pretty absurd to me! This has been going on for 5 months, gradually getting worse. Last week, being the worst with the pain that almost crippled me. They do suspect I have GERD though, so not entirely sure if these relate.

I am having the exact thoughts at the moment of, do I carry on wasting people's time, or do I carry on? In my distress, I've joined an IBS forum and see if anybody else has the same. I still refuse to want to be tarred with the 'IBS brush'.

I don't want to live with this, I know something is up, no IBS meds are helping so I feel really lost?

But yes, thank you so much. I feel so down and fed up right now.

 

[Izzie]

They told me I had IBS when I was 14 (I went in asking for more pills to control the pain I had during periods), which is pretty absurd to me! This has been going on for 5 months, gradually getting worse. Last week, being the worst with the pain that almost crippled me. They do suspect I have GERD though, so not entirely sure if these relate.

I am having the exact thoughts at the moment of, do I carry on wasting people's time, or do I carry on? In my distress, I've joined an IBS forum and see if anybody else has the same. I still refuse to want to be tarred with the 'IBS brush'.

I don't want to live with this, I know something is up, no IBS meds are helping so I feel really lost?

But yes, thank you so much. I feel so down and fed up right now.

It's INCREDIBLY frustrating to not get an adequate explanation for your issues. I certainly don't want to live with my issues either, I completely understand that feeling.

My problems have been going on for about 6 months now, so probably not that long in the grand scheme of things, but going from being completely healthy to this has been rough.

The only medication that has helped me has been the Omeprazole. And it only helps marginally, but it's still something.

I'm still annoyed with the "specialist" who told me there's nothing to be done for IBS when I know plenty of people who take supplements and medications and all kinds of things that at least ease the symptoms somewhat.

It's nice to talk to other people in the same boat though, sometimes I feel like this is taking up far too much of my mental space and then it's nice to come here and rant a little to people who understand the situation.

I've decided myself to take a little "break" from doctors this summer - unless my symptoms suddenly worsen again, of course - but I have a move coming up and I figure I can give myself a little time out and recharge before my pill cam. Sum up the whole thing for myself and then see a specialist in a hospital that doesn't suck :ylol:

 

[kellehbeans]

It's INCREDIBLY frustrating to not get an adequate explanation for your issues. I certainly don't want to live with my issues either, I completely understand that feeling.

My problems have been going on for about 6 months now, so probably not that long in the grand scheme of things, but going from being completely healthy to this has been rough.

The only medication that has helped me has been the Omeprazole. And it only helps marginally, but it's still something.

I'm still annoyed with the "specialist" who told me there's nothing to be done for IBS when I know plenty of people who take supplements and medications and all kinds of things that at least ease the symptoms somewhat.

It's nice to talk to other people in the same boat though, sometimes I feel like this is taking up far too much of my mental space and then it's nice to come here and rant a little to people who understand the situation.

I've decided myself to take a little "break" from doctors this summer - unless my symptoms suddenly worsen again, of course - but I have a move coming up and I figure I can give myself a little time out and recharge before my pill cam. Sum up the whole thing for myself and then see a specialist in a hospital that doesn't suck :ylol:

I know. Surely we should get some relief from IBS medication? Omezaparole made me actually feel worse - until I got Domperidone! May ask for some more when I go to the doctors next week.

It's definitely nice to have somebody who feels the same as I do, and going through the same. It certainly feels great to share a burden. It's just so hard when test results come back normal (prior to colonoscopies etc.) because nobody will actually listen to you until that point! And even then, they don't judging by what I've read on these forums!

 

[UnXmas]

Got my test results back today, and I have come to my own little conclusion that it is all in my head or I do in fact have IBS.

My FBC came back completely normal, no raised WBC, my H.Pylori test came back normal (so, that rules out stomach ulcers, and maybe healing them with antibiotics) and also my stool bacteria culture came back normal. I was wondering if they test for occult bleeding during that stool test or even the calprotectin one, does anybody know? But I'm pretty sure there's not a lot of action going on.

I'm so fed up with this, and also very fed up with these week. It's one thing after another. So, I am now no closer, and have to wait until 10th September, probably to be told that it is IBS.

Just found a site that literally describes my left-sided pain (adjacent to belly button, which feels like a stabbing) as IBS, down to a tee..

"8. IBS

Irritable bowel syndrome (IBS) causes symptoms of abdominal cramps as well as gas and bloating, diarrhea and passing small hard stools. This is a disorder of the gut that gives structural problems as well as physical issues. It can cause the bowel movement to be any range from constipation through diarrhea"

Pretty much think it's that now.

It's not all in your head.

I'm diagnosed, last year I was in hospital with a perforated bowel and so ill my surgeon rang my parents in the middle of the night and told them they had to come in now because she wasn't sure I was going to survive the surgery. A month later, after I'd recovered enough to be discharged home, my gastroenterologist (who I'd been forced to see) came and tried to stop my discharge and have me sent to the eating disorder unit instead because she said my bowel problems were caused by stress and my weight loss due to an eating disorder.

You may find that hard to believe, but maybe given the way you - both of you, kellahbeans and Izzie - have been treated you'll know that some doctors are just insane in their wish to accuse us of stress and mental illness.

You just have to find the good doctors and run from the bad ones.

 

[kellehbeans]

It's not all in your head.

I'm diagnosed, last year I was in hospital with a perforated bowel and so ill my surgeon rang my parents in the middle of the night and told them they had to come in now because she wasn't sure I was going to survive the surgery. A month later, after I'd recovered enough to be discharged home, my gastroenterologist (who I'd been forced to see) came and tried to stop my discharge and have me sent to the eating disorder unit instead because she said my bowel problems were caused by stress and my weight loss due to an eating disorder.

You may find that hard to believe, but maybe given the way you - both of you, kellahbeans and Izzie - have been treated you'll know that some doctors are just insane in their wish to accuse us of stress and mental illness.

You just have to find the good doctors and run from the bad ones.

Thank you - I guess it is not all in my head, but why are all my blood tests and stool tests coming back normal? That, I don't understand. I just want to find some relief somewhere and not just be told 'get on with it'. I guess that's a pretty global wish.

 

[Cat-a-Tonic]

Kelleh, I feel your frustration. Have your doctors only been testing for IBD? Have you had other tests to rule other things out? My GI ran so many tests on me to check for/ rule out other things that can cause IBD-like symptoms. You might want to shift your focus for a bit, if only to rule out some other things. Here's what I was tested for off the top of my head:

Addison's Disease - responds to prednisone and can cause gastro symptoms, so can appear really similar to IBD both symptom-wise and med-wise. Addison's can be looked for with a blood test which I believe is called ACTH (it's been several years since I had that test so I'm slightly foggy on the name, but I'm sure you can google Addison's and ACTH and find more info).

Lupus - Lupus can apparently sometimes cause IBD-like symptoms. A blood test to check your ANA can usually confirm or rule out Lupus, and that same test can also check for other things such as rheumatoid arthritis.

Thyroid - thyroid issues can cause IBD-like symptoms too. A simple blood test is again all it takes to check on this.

Gallbladder - if your gallbladder isn't functioning properly, that can lead to IBD-like symptoms. I had an ultrasound of mine which showed that mine is working fine. There's another gallbladder test, I believe it's called a HIDA scan (I didn't have that one).

And there are other illnesses such as Behcet's which don't really have a set test to check for it, but can also cause IBD-like symptoms. And there are things like grumbling appendix, abdominal migraine, etc which are definitely illnesses in the digestive tract but aren't IBD. So if you feel like you're hitting a brick wall with IBD testing, you may want to do some research and have your GP run some bloodwork for some other illnesses while you're waiting for that GI appointment. Good luck!

 

[kellehbeans]

Kelleh, I feel your frustration. Have your doctors only been testing for IBD? Have you had other tests to rule other things out? My GI ran so many tests on me to check for/ rule out other things that can cause IBD-like symptoms. You might want to shift your focus for a bit, if only to rule out some other things. Here's what I was tested for off the top of my head:

Addison's Disease - responds to prednisone and can cause gastro symptoms, so can appear really similar to IBD both symptom-wise and med-wise. Addison's can be looked for with a blood test which I believe is called ACTH (it's been several years since I had that test so I'm slightly foggy on the name, but I'm sure you can google Addison's and ACTH and find more info).

Lupus - Lupus can apparently sometimes cause IBD-like symptoms. A blood test to check your ANA can usually confirm or rule out Lupus, and that same test can also check for other things such as rheumatoid arthritis.

Thyroid - thyroid issues can cause IBD-like symptoms too. A simple blood test is again all it takes to check on this.

Gallbladder - if your gallbladder isn't functioning properly, that can lead to IBD-like symptoms. I had an ultrasound of mine which showed that mine is working fine. There's another gallbladder test, I believe it's called a HIDA scan (I didn't have that one).

And there are other illnesses such as Behcet's which don't really have a set test to check for it, but can also cause IBD-like symptoms. And there are things like grumbling appendix, abdominal migraine, etc which are definitely illnesses in the digestive tract but aren't IBD. So if you feel like you're hitting a brick wall with IBD testing, you may want to do some research and have your GP run some bloodwork for some other illnesses while you're waiting for that GI appointment. Good luck!

So, I have had all of my micronutrients checked, calprotectin tested, CRP, stool bacterial culture, and a FBC. As far as I know, this is all that has been done. Do you think if I ask for these blood tests that I can get them? Or should I wait until I see my GI? I do believe my thyroid functioning has been tested, as well as my liver (I'm not sure if gallbladder is also tested in this as well? Seemed pretty specific to a few different organs). Not sure if it is one that can be requested through a GP or not.

I was just talking to somebody at work and he told me I need to smile because his partner had all the same as I, and did not get diagnosed with Crohn's until she was hospitalised and a week away from death. He said it's not a quick process, and I just need to hold out and learn my own body. (He added - not the birds and bees kind of experimenting here! Which did made me chuckle!)

 

[UnXmas]

Neurological and rheumatological conditions (and there are many of them, lupus is one rheumatological example) cause digestive symptoms as well. Often they involve completely different tests from the scopes and things used for IBD, e.g. MRIs of spine and brain. All the pelvic floor problems we talked about a bit earlier on this thread can occur with normal blood results. A colorectal surgeon could assess you for obstructed defecation. Another option to try would be seeing a GI motility specialist.

I think sometimes it can be a good thing to take a break from diagnosis-seeking, but if you do think you can stand more appoinments and tests, you still have options. You can also ask doctors for more help with symptom management.

Also I'm just wondering about this from the description of IBS you quoted:

Irritable bowel syndrome (IBS) causes symptoms of abdominal cramps as well as gas and bloating, diarrhea and passing small hard stools. This is a disorder of the gut that gives structural problems as well as physical issues. It can cause the bowel movement to be any range from constipation through diarrhea"

Does IBS involve structural problems? I didn't think it did.

 

[kellehbeans]

Neurological and rheumatological conditions (and there are many of them) cause digestive symptoms as well. Often they involve completely different tests from scopes, e.g. MRIs of spine and brain. All the pelvic floor problems we talked about a bit earlier on this thread can occur with normal blood results. A colorectal surgeon could assess you for obstructed defecation. Another option to try would be seeing a GI motility specialist.

I think sometimes it can be a good thing to take a break from diagnosis-seeking, but if you do think you can stand more appoinments and tests, you still have options. You can also ask doctors for more help with symptom management.

Also I'm just wondering about this from the description of IBS you quoted:



Does IBS involve structural problems? I didn't think it did.

Tbh, I didn't think it did either. However, now I'm starting to doubt even that quote I posted. I must have completely read passed that part of the quote.

You know, I think I'm going to do some more research into pelvic floor exercises and give them a go. See if that helps. Although, yesterday, I thought I was completely cleared out and could start anew. However, now I'm faced with crampy and sharp pains in both upper parts of stomach, and lower left. Probably wind. Think I'm going to stop diagnosis seeking, possibly just ask about the other things from my GP next week, but just begin to learn my body a little better right up to the GI appointment in a few months time.

 

[Cat-a-Tonic]

Kelleh, I had all that testing done through my GP, although I'm not sure if things are done differently in the UK than they are in the US. But yes, it's definitely worth asking about. Like I said, do a bit of research first, so that if/when your GP inquires as to why you're asking for certain tests, you're able to justify your requests.

Ending up at death's door is one way to get a diagnosis, but it's far from the ideal way! DustyKat hasn't been active on the forum lately so I'm not sure if she'll see this, but her daughter got diagnosed that way, with emergency surgery and everything being very touch and go. It was awful for both Dusty and her daughter. Getting a diagnosis does not and should not mean that you need to be nearly dying.