Undiagnosed Club Support Group

[kellehbeans]

@Izzie - I used to eat 6 times a day. But I mean, I can't even eat snacks any more. I have to stick to 3 meals a day. Her advice was 'drink water'. Thinking about it is making me angry (I'm in a foul mood by the way!), I can't wait to move away from my hometown!

Do what you have to do and keep us updated!

 

[UnXmas]

@Cat, you mentioned you had some issues with arthritis? I've recently started having pain in my knees and ankles and down my entire spine. Has any of this happened to you? Don't know if it's actually arthritis but it feels like joint pain to me, my spine in particular it's the individual vertebrae that hurt sometimes.

I found out recently I have osteoarthritis at the base of my spine. I get episodes of very painful spasms, that are actually much more painful than further up my spine where I have a fracture.

 

[Izzie]

Okay, so the GI doctor called. Went better than expected.

He forgot, apparently. Between my appointment and him dictating the chart - he forgot about everything he said he'd do. He still doesn't think I have GERD because of my clear scopes, he's still pretty dismissive as far as me trying to explain that if I go off Omeprazole I feel like absolute hell so I feel like I should get a reflux diagnosis?! BUT he did agree to actually order the capsule endoscopy that he told me he would, so that's good.

Didn't want to transfer me to a hospital in the city though. Which I'm not too happy about, but at least I'm getting the pill cam as expected, so I suppose it's okay.

Now comes the new worry - if the pill cam doesn't show anything what the hell do I do then

Is it really required for a reflux diagnosis to have visible damage on a scope? I'd only had it for a couple months at the time AND was on Omeprazole for it too. I don't know if I'm just being obsessive and weird but I can't help but think that so many of my symptoms line up with GERD. I mean I CAN'T go off my PPIs or the bleeding starts up within days. But at the same time I'm not sure how they could've missed it on two successful scopes if I had an ulcer or something? Can you have stomach-acid related damage to the small intestine?

I just think there are soooo many things I'd have to accept as coincidences if I come out of all this with only an IBS diagnosis? Like I just happened to have a positive fecal occult blood test along with pain and brand new stomach issues and then just happened to become anemic from periods at the same time even though I never have been before?

This is turning into a rant, I'm sorry, just trying to get my thoughts on track. But yeah it could've been worse.

It's just kind of looking like I won't get an answer here and will have to live with, like, I feel terrible but at least they haven't found something dangerous so I'll just have to deal?

 

[kellehbeans]

@Izzie - Congratulations on actually getting the reign back onto your doctors! Don't panic on what may not happen - the pill can COULD show something, and you've just stressed yourself out for no reason, and probably make you feel worse.

Sorry, I don't know what to say about the Omeprazole. I've never heard of it stopping bleeding, do the doctors know this? I'm sorry, I really have no knowledge (except PPI's and H2's don't actually help my GERD at all).

Please, I know it's easier said than done, but please stop panicking. You'll make yourself more ill! You can't worry about what may or may not happen - because you've proved to yourself today, that things CAN go better than expected and I honestly cannot imagine the torment that has been going through your head, wondering how on earth that call was going to go!

 

[Izzie]

@Izzie - Congratulations on actually getting the reign back onto your doctors! Don't panic on what may not happen - the pill can COULD show something, and you've just stressed yourself out for no reason, and probably make you feel worse.

Sorry, I don't know what to say about the Omeprazole. I've never heard of it stopping bleeding, do the doctors know this? I'm sorry, I really have no knowledge (except PPI's and HC's don't actually help my GERD at all).

Please, I know it's easier said than done, but please stop panicking. You'll make yourself more ill! You can't worry about what may or may not happen - because you've proved to yourself today, that things CAN go better than expected and I honestly cannot imagine the torment that has been going through your head, wondering how on earth that call was going to go!

It's what they've pumped me full of when I've been hospitalized for it, and it's what they continue giving me when I have bleeding and it seems to do something because it always stops? I don't even know.

I wouldn't really say I'm worried so much as annoyed and impatient. I'd just like some friggin answers already. No doctors I've been to so far have expected to find anything really dangerous, so I wouldn't say I'm particularly worried in that sense. It's just the whole process that stresses me out. Having to keep a bunch of facts together and remembering what to ask and who to talk to and what the next steps are and tons of phonecalls etc.

It's like my friend said the other day - most people see things in a pretty straightforward 1-2-3 way, whereas I'm like "ehm, 6, 2, 27, 105?! WHAT IS HAPPENING WHAT IS NEXT I DON'T UNDERSTAND!" I blame my ADHD. :ylol2: I probably sound more stressed than I am tbh.

 

[UnXmas]

Why would he not transfer you to a new hospital? You're moving, right? So you'll be going to a new hospital. I don't see why or how he could object to that.

I'm not sure about the GERD. I was diagnosed based on symptoms, I'm not sure if the diagnosis could have been revoked if my scopes hadn't confirmed it. But I don't think it likely that a scope would miss an ulcer; it seems more likely that you've not had reflux long enough for it to cause inflammation.

Try not to worry about the pill cam. A good doctor will not care about negative results. I have gone through a lot of doctors who've dismissed me (because I have multiple illnesses, I've gone through a lot of difficult diagnoses). The few doctors I've stuck with for years are the ones who just accepted that negative results simply mean that that particular test did not find anything, rather than assuming I'm physically fine. I do not want a doctor who needs objective results in order to believe me and try to treat my symptoms. And I know I've posted before about how I still face sceptical doctors, especially a gastroenterologist who is insisting my weight loss must be due to an eating disorder because my test results don't show any signs that account for the extent of my weight loss. I have an ileostomy, had a perforated bowel, have had more than ten surgeries, but my current tests results just do not show enough signs of malabsorption. Tests are important and some people get concrete answers from them, but if you're a difficult diagnosis like I am, then it may never be that straightforward. So don't feel like a diagnosis is the answer to all this or think that there's nothing else left if you have a negative pill cam. Good doctors who believe you can be more impotant than a positive test result that you may hope will convince doctors there's something wrong.

 

[Izzie]

Why would he not transfer you to a new hospital? You're moving, right? So you'll be going to a new hospital. I don't see why or how he could object to that.

I'm not sure about the GERD. I was diagnosed based on symptoms, I'm not sure if the diagnosis could have been revoked if my scopes hadn't confirmed it. But I don't think it likely that a scope would miss an ulcer; it seems more likely that you've not had reflux long enough for it to cause inflammation.

Try not to worry about the pill cam. A good doctor will not care about negative results. I have gone through a lot of doctors who've dismissed me (because I have multiple illnesses, I've gone through a lot of difficult diagnoses). The few doctors I've stuck with for years are the ones who just accepted that negative results simply mean that that particular test did not find anything, rather than assuming I'm physically fine. I do not want a doctor who needs objective results in order to believe me and try to treat my symptoms. And I know I've posted before about how I still face sceptical doctors, especially a gastroenterologist who is insisting my weight loss must be due to an eating disorder because my test results don't show any signs that account for the extent of my weight loss. I have an ileostomy, had a perforated bowel, have had more than ten surgeries, but my current tests results just do not show enough signs of malabsorption. Tests are important and some people get concrete answers from them, but if you're a difficult diagnosis like I am, then it may never be that straightforward. So don't feel like a diagnosis is the answer to all this or think that there's nothing else left if you have a negative pill cam. Good doctors who believe you can be more impotant than a positive test result that you may hope will convince doctors there's something wrong.

He said something along the lines of it being better to just finish it here? I guess I can understand it, it'd take longer to get the pill cam done if paperwork needs to be processed and stuff.

And yeah I agree with you re: doctors. I am pretty keen on switching hospitals what with this one having such a shit reputation and all, but a test is a test, and I don't think they can eff up a pill cam. It'll be nice to get it done before the semester starts up again.

I think the part that stresses me out the most is not being believed. Getting the old "you're just anxious/stressed" crap. And I mean this is like the first doctor I've had contact with more than once? Which is also stressful, the lack of consistency, and getting very mixed messages all the time.

But yes I really hate the feeling of almost wanting tests to show something so you can have "proof" that you really feel bad. It shouldn't have to be like that. It's difficult too to be picky with specialists, at least here, our health care system doesn't really allow it. You sort of end up with who you end up with. Unless you pay out of pocket for private health care, that is. Which is something I've almost considered doing just to be able to choose a doctor who doesn't suck.

 

[Cat-a-Tonic]

Gadget, yes, I have arthritis. Mine isn't in my spine as far as I know - I seem to have inflammatory arthritis in both hips. My GP did x-rays and at first I just had arthritis in the right hip (that is the far more painful hip) but a later series of x-rays shows that it's now in both hips (and I do have some left hip pain nowadays). I saw a worthless rheumatologist who did an MRI and said he didn't know what was wrong with me - but in his notes, he wrote that I have inflammatory arthritis in my sacro-ilial joints.

I went to physical therapy for my right hip when I first got diagnosed - my arthritis was and still is mild, so physical therapy helped a lot. So, my advice is to see your GP first about it. They should be able to tell from x-rays if you have arthritis, although they won't necessarily be able to tell what type (my GP was thinking osteoarthritis for awhile, but that's a wear-and-tear type of arthritis and he said I'm just too young for that). You may be referred to physical therapy and you could also request to see a rheumatologist (most rheumys aren't as useless as mine was, I just got a bad one!). In the meantime, you can try things like heating pads or ice packs, sports creams, etc. Those things should help a little bit until you can get things figured out.

Do you do any exercise? If you have a bit of a wait to get into physical therapy, you might want to try some gentle yoga/stretching on your own and see how you feel. For me, stretching, strengthening, and cardio exercises all seem to help my hips. The big thing I cannot do is high-impact exercise such as jogging as that just plain hurts (even walking can make my hips feel worse sometimes). For cardio, I typically ride my bike - even when I push myself, do hills, etc, it doesn't hurt my hips. Weightlifting never hurts my hips either and yoga/stretching feels good and I can tell it helps. So if you try to gently exercise your painful joints, just listen to your body. If something hurts, don't do that and try something else.

 

[kellehbeans]

@Izzie - I'm not really sure if this is good advice (in fact it probably isn't), but maybe stop taking the omeprazole (if it stopping the bleeding) and making the doctors listen to you - heck, even show them if you have to. I am still confuzzled as to how it would stop bleeding unless that bleeding is coming from your oesophagus or stomach... which could indicate a bleeding ulcer??

 

[UnXmas]

Cat - I have osteoarthritis, my GP also described it as "wear and tear". I'm not sure how old you are but I'm still in my twenties, so I would have thought it's not something you can be too young for. I do feel like I'm missing something regarding why I have it though. Because I have severe osteoporosis, the x ray that diagnosed the osteoarthritis was to check for fractures as a cause of my back pains. The x ray showed a fracture but showed osteoarthritis as well, in a different part of my spine, and it seems too much of a coincidence for it not to be related to at least one of my other medical conditions. If it is supposed to affect only older people that makes it even more strange that I should have it.

 

[Cat-a-Tonic]

UnX, I'm 35 now and I believe I was 31 when I got initially diagnosed with arthritis, so I'm not much older than you. My 83 year old grandpa has osteoarthritis in his hip and it makes sense to me that at his age he's got wear-and-tear damage going on, but yeah, for someone in their 20s or 30s, it just doesn't make sense. That's why I went to a rheumatologist, and inflammatory arthritis does make much more sense to me than osteo. I know there are people on the forum who have osteo at our ages - like Jennifer for example has it, but she's got a reason for it. She helped her grandfather for years both by lifting him & carrying him, and by helping him with his physical therapy. So for her it makes sense to have some wear-and-tear arthritis, but I agree that for you and I it doesn't make much sense to me.

 

[Izzie]

@Izzie - I'm not really sure if this is good advice (in fact it probably isn't), but maybe stop taking the omeprazole (if it stopping the bleeding) and making the doctors listen to you - heck, even show them if you have to. I am still confuzzled as to how it would stop bleeding unless that bleeding is coming from your oesophagus or stomach... which could indicate a bleeding ulcer??

That's what's so very confusing for me too, yeah.

And I mean I've basically already inadvertedly done this. I was told to stop them, did, a few days later I was in the ER with my worst blood work yet, so. They all know this, I've said it a million times. It is strange that it works, and that they keep prescribing it when I have bleeding yet tell me I don't have GERD, or any ulcers or anything

Also worth noting is that I haven't had visible black stool at all since they upped my PPI dose.

I don't feel the need to do much of anything but sit on my behind and wait, at the moment. Things are kind of back on the right track. It's something I'll continue asking questions about though, because I too find it confusing.

But step 1, pill cam. Step 2, hopefully new hospital. Will have to take things as they come.

 

[Jennifer]

UnX, I'm 35 now and I believe I was 31 when I got initially diagnosed with arthritis, so I'm not much older than you. My 83 year old grandpa has osteoarthritis in his hip and it makes sense to me that at his age he's got wear-and-tear damage going on, but yeah, for someone in their 20s or 30s, it just doesn't make sense. That's why I went to a rheumatologist, and inflammatory arthritis does make much more sense to me than osteo. I know there are people on the forum who have osteo at our ages - like Jennifer for example has it, but she's got a reason for it. She helped her grandfather for years both by lifting him & carrying him, and by helping him with his physical therapy. So for her it makes sense to have some wear-and-tear arthritis, but I agree that for you and I it doesn't make much sense to me.

My doctors (GP, GI and Rheumy) all agreed that the osteoarthritis was caused by my Crohn's. I'll see if I can get them to elaborate on how that's possible. My pain started within weeks of lifting my Grandpa so it's very likely that the arthritis was already there. I had back pain in the same location when I first started High School. There's definitely more to osteoarthritis than just wear and tear on the joints as some diseases can make you be more at risk of getting it. http://www.mayoclinic.org/diseases-conditions/osteoarthritis/basics/risk-factors/con-20014749

 

[Lorikeetie]

I have arthritis - seronegative spondyloarthropy (don't know which one). My lower back, left shoulder, left wrist, left ankle and right knee all bother me :-( I find gentle exercise helps and I have a great physio that helps. I also take methotrexte and sulfasalazine. Really wish I could take NSAIDs but they really hurt my gut. I do take other painkillers most of the time.

Rheumy thinks IBD-related, but not signs of crohns other than symptoms.

I have GERD too - diagnosed by gastroscopy.

 

[UnXmas]

My doctors (GP, GI and Rheumy) all agreed that the osteoarthritis was caused by my Crohn's. I'll see if I can get them to elaborate on how that's possible. My pain started within weeks of lifting my Grandpa so it's very likely that the arthritis was already there. I had back pain in the same location when I first started High School. There's definitely more to osteoarthritis than just wear and tear on the joints as some diseases can make you be more at risk of getting it. http://www.mayoclinic.org/diseases-conditions/osteoarthritis/basics/risk-factors/con-20014749

I did some research into a Crohn's link to osteoarthritis after you mentioned this before but I couldn't find much. My doctor (GP) did say there could be a link when I asked her about it but she didn't know what the link was, just thought it was possible. Do you think it could be related to malnutrition?

 

[Wildmtnhoney]

Not dx Crohn's or anything else, but have on occasion been found to be overweight but w/poor nutritional status (low iron, low calcium and magnesium, etc -- they just tell me to eat better, lovely, right?). I was a dancer in my teens, ran a few 5Ks around that time, too, and just recently found I not only have arthritis in my knees at 38 (and not just starting) but that at some point years ago I *broke* my right kneecap so there is a lot of arthritis there. But the left knee is pretty poor off without a break, too.

So far I have "failed" physical therapy for the arthritis, and am considering hyalaronic (however that's spelled!) injections. Although really, the right knee needs surgery at some point.

No one has looked at anything beyond wear and tear yet. However, I have also had my thyroid totally freak out on me this year -- I had subacute thyroiditis, followed by hypothyroidism and rising antibodies that look like I have Hashimotos now, so I'm on levothyroxine for the first time in my life. So clearly I have some sort of immune dysfunction going on.

 

[Izzie]

I've had horrible joint/bone pain since I was a child. Used to think it was growing pains but it never stopped. Not really getting any answers from doctors, except they think I have hyperflexible joints, though that doesn't really explain the pain. It's strange, I get really bad aches isolated to one limb at a time, and the only thing that helps is heat. I've kind of learned to live with it but it can get pretty bad.

 

[Cat-a-Tonic]

Jenn, thanks for that info, it's interesting that IBD could potentially cause osteoarthritis. My GP always referred to osteo as wear-and-tear and he never mentioned any potential connection between osteo and IBD, and when that rheumy said inflammatory arthritis, I figured it must be that and not osteo. Hmm, interesting! So it could still be osteo for me since the rheumy wasn't for sure that it was inflammatory.

Izzie, I have some hypermobile joints as well. Mainly my elbows and knees (my arthritis is in my hips so I don't think there's a connection for me between arthritis and hypermobility). Certain conditions go hand in hand with hypermobility. I recall BozzyLozzy saying that her chiari malformation and her hypermobility were likely connected. I've also read that Asperger's and hypermobility frequently happen together (I've often wondered if I might have Asperger's and if the hypermobility is a puzzle piece to that - I fit a lot of the Asperger's symptoms, and people with Asperger's/on the Autism spectrum very commonly have digestive issues as well).

UnX, I don't know if arthritis and malnutrition can be linked or not but it sounds logical to me that if you're not getting all the nutrients and calories you need, that bones and joints would suffer along with everything else in the body. I believe steroids and arthritis can be connected - my GI mentioned something about Entocort being the possible cause of my arthritis, but he only mentioned it once years ago so I don't recall exactly what he said or what the reasoning was. Not sure if other meds can also contribute. I know that certain drugs like PPIs can cause bone loss which can lead to osteoporosis, but not sure about arthritis.

 

[Izzie]

Well I do have ADHD so maybe there's some connection there too, who knows.

 

[UnXmas]

I assumed the osteoarthritis was connected to my osteoporosis, as to me it seemed logical that thin, weak bones would suffer more wear and tear, but everything I've heard/read says they're not connected. Same with steroids: I know pred and similar meds weaken bones, it seems logical they could cause arthritis too, but apparently they don't.

 

[Wildmtnhoney]

I am so sorry so many are dealing with joint pain!

I forgot my main reason for coming to this thread today though.

We may have a "partial" reason for my issues.

I had a brief spell of normal stools w/Lotronex, then things started going bad again, and the past week the pain started coming back, with it being severe two nights ago and yesterday in my RLQ. Went to my GP because I was pretty sure it was my diverticulum. She agrees, as I don't have a "true" fever (under 100F) and I've had tons of CTs that have never shown my appendix to be inflamed.

So -- I may "just" have diverticulitis to blame for all of this. I have one, lonely, diverticulum right next to my appendix (verified by both CT and colonoscopy).

Right now I'm on clear liquids until the pain stops, then I'll move onto bland white foods, etc, trying figure out triggers (again!). No antibiotics for now, although we'll reconsider if I get worse, but messing up my gut bacteria last time led to C-Diff, and I don't want that again.

 

[Izzie]

My reflux is really starting to drive me nuts. Every meal, it's just... burning pain and belching and I'm losing my voice. Need to find a doctor who actually takes these issues seriously.

 

[kellehbeans]

@Izzie - Totally understand! Do you take antacid tablets? I cannot recommend the fluid version of it enough - Gaviscon syrup has helped me out a lot. Funnily enough, I've forgotten it today, and I am due to drive 90 miles to my boyfriends tonight... I just ate bacon and I have the reflux + lump in my throat. >:C

 

[Izzie]

@Izzie - Totally understand! Do you take antacid tablets? I cannot recommend the fluid version of it enough - Gaviscon syrup has helped me out a lot. Funnily enough, I've forgotten it today, and I am due to drive 90 miles to my boyfriends tonight... I just ate bacon and I have the reflux + lump in my throat. >:C

I do take OTC antacids when I feel the need but they don't really do the trick. And this is while on 40 mg of Omeprazole daily, so I mean, it's pretty bad

Probably need to tweak my diet a little more. Haven't tried any fluid antacid stuff at all, maybe that's worth a go.

I'm starting to realize that I just cannot drink anything but water. Anything carbonated is pure hell, tea and coffee is a no-go, juice - forget about it. This illness is pushing me to be healthier than I ever wanted to be :lol2:

 

[kellehbeans]

@Izzie - I was on higher Omeprazole than that, and it did nothing for me. I was also on Zantac, and that did nothing either. I am not a big fan of the PPI's or H2's. I was getting extremely down on myself, because nothing was working - so I decided to try the actual liquid. I was pleasantly surprised, as my stomach acid was getting so bad, it was burning my insides and I had horrific nausea. I haven't taken it for a few days, so it's starting to come back. But I found it helps, and I'm glad I have found something. I was meant to post it on here the other day last time we were talking about GERD because I was definitely pleasantly surprised!

Water makes me burp just as much as anything else. P: I can't drink coffee, but I am right now - oops. It's Friday morning and my manager bought me breakfast! But, even a small amount of coffee now goes straight through me, and although I haven't had some for a while, my BM's are becoming more frequent.. again. Which isn't good as my fissure of 5 weeks still hasn't healed, I have internal haemorrhoids (I feel wrong, but I decided to feel what they feel like to touch, and I have 3 hard little lumps, just so if I have a problem again, I know what to look for without having to pester my doctors. But now, it also looks like I have some external haemorrhoids, plus a fissure and maybe another fissure forming. Not sure how sore my rectum is at the moment (definitely had internal fissures too), but if it doesn't clear up in another week (I can't take the HC AnuSol any more), I am going to go get a 2nd opinion, because this is strangely match for match symptom of proctitis (ulcerative or not). 6 weeks makes them chronic rather than acute and I want them sorted!

 

[Izzie]

That sounds rough, kellehbeans. A second opinion is probably a good choice, from what you said that doctor you went to see last seemed very unhelpful.

 

[Jennifer]

I did some research into a Crohn's link to osteoarthritis after you mentioned this before but I couldn't find much. My doctor (GP) did say there could be a link when I asked her about it but she didn't know what the link was, just thought it was possible. Do you think it could be related to malnutrition?

It's possible that it could be related to malnutrition and I wouldn't be surprised if certain medications played a role.

 

[Izzie]

So today I bought a cookbook and like half the grocery store. Decided to take complete control of this whole diet thing. I've cheated here and there and it's just not working so it's time for a pretty major lifestyle change. I'm actually going to COOK :ywow:

Also hoping to take control of this weight loss. I've been crashing some weeks only to put on a kilo or two on weeks when I can actually eat. I do think I could stand to lose a few and will continue to try and do so, since I hear that can help with reflux, but I don't think it's healthy to jo-jo like I have been.

 

[UnXmas]

What kind of diet are you trying?

 

[Izzie]

What kind of diet are you trying?

I'm just going to very strictly cut out everything I've noticed is a trigger food, and stay far away from additives/artificial sweeteners/things that are obviously bad for you. As well as staying away from sugar, just because I kind of want to lose some weight to see if it helps my reflux.

A lot of it really is just getting used to eating proper meals at roughly the same times every day, cooking them myself, and portion control.

I mean my eating habits before I got sick were abysmal, to be honest. Mostly lived on coffe, and when I got hungry just anything I could get my hands on since I was hardly ever home and never cooked anything for myself.

And since I got sick it's mostly been... eat anything you can get down without horrible pain and nausea. Which obviously is very inconsistent.

I start school again in a few weeks and I just need to figure out a routine that will keep me functioning somewhat. I can't be home sick anymore or I'll never graduate.

 

[kellehbeans]

Sorry I haven't been replying over the weekend, I've been away and I find posts hard to keep up with whilst using my phone and not a PC.

This is a question is for the ladies.

Does anybody get really bad tenesmus and backache during their time of the month??? I'm in agony. I can't sit on the loo, it's starting to get sore to even pass wind, without the HC cream, I'm in pain, and I just feel ugh. Doctors again I guess and see if they can give me anything stronger to heal these damn fissures and haemorrhoids. Not helping I'm going 5 times a day again.

 

[Izzie]

Sorry I haven't been replying over the weekend, I've been away and I find posts hard to keep up with whilst using my phone and not a PC.

This is a question is for the ladies.

Does anybody get really bad tenesmus and backache during their time of the month??? I'm in agony. I can't sit on the loo, it's starting to get sore to even pass wind, without the HC cream, I'm in pain, and I just feel ugh. Doctors again I guess and see if they can give me anything stronger to heal these damn fissures and haemorrhoids. Not helping I'm going 5 times a day again.

I do sometimes get a backache, definitely, but I think that's related to cramps more than anything. Though anything stomach related usually feels worse at that time of the month, for me.

Do sympathize with the frequent bathroom visits since I am in the same boat.

 

[kellehbeans]

@izzie - I'm not even cramping horrifically, well, I am now and yes it has amplified the pain.. I didn't want to take painkillers.. Have now, too much pain and all I want to do is go to bed, it's been a long weekend..

It's annoying, constant urge to go, and it's just hurting now when I do go. Urgh.

 

[Izzie]

@izzie - I'm not even cramping horrifically, well, I am now and yes it has amplified the pain.. I didn't want to take painkillers.. Have now, too much pain and all I want to do is go to bed, it's been a long weekend..

It's annoying, constant urge to go, and it's just hurting now when I do go. Urgh.

I have to be on intense amounts of painkillers every month, I have HORRIBLE cramps, always have.

Sounds like a rough time, the doctors really ought to give you something more effective...

 

[kellehbeans]

Last time I had pain like this with periods was when they diagnosed me with IBS when I was 14. All I wanted was my tablets to reduce the pain! In all honesty, my eating disorder made my ToM non-existent, along with taking the pill, but now I am a healthy weight and no longer take the pill, I still have short cycles. I'm wishing they were longer or non-existent right now, when all I wanted was them back because I knew my health would have returned with them... *sigh*

I had a little chat with my boyfriend last night (left-sided ulcerative colitis dx'ed) and he completely sympathised with me, he said rectal foam helped him BIG time but I know I can't get that unless I was diagnosed myself. Going to call doctor tomorrow for 2nd opinion... See what else I can get to heal this.

 

[Wildmtnhoney]

Sorry I only got rarely drop in, but I've got a question I hope one of you may know about.

I was in ED earlier today due to the suspected diverticulitis and they gave me morphine there, plus Percocet to take at home, which I've had one of so far. The combo would normally lead me out of diarrhea and possibly into constipation, but I finally felt like eating a few hours ago and now the D is back! Is this to be "expected "?

My CT came back with only a ruptured ovarian cyst, so I'm not in any antibiotics, just the pain meds and zofran for nausea.

TIA

 

[Izzie]

Okay so this is a borderline TMI, pretty gross question but here goes: is it ever normal to have white mucus in your stool? Like, very visible chunks of it at that?

And if not, what exactly does it indicate when you do?

I've not had any (visible) bleeding since I started consistently taking a higher Omeprazole dose, so that would indicate I had an ulcer, right? But then my scopes are all clear so that doesn't really make any sense either. The only visible thing wrong now is this mucus situation which I don't know what to make of...

 

[Cat-a-Tonic]

Wildmtnhoney, it's possible to be constipated yet have diarrhea at the same time. What happens is that the diarrhea overflows around the constipated "plug" if you will. It's not a blockage so diarrhea can flow around it. You still might experience symptoms of constipation, though. It's not a fun time.

Izzie, it's hard to say. Everyone, even healthy people, have mucus in their digestive tract - it helps the stool slide through the intestines. An over-production of mucus doesn't necessarily mean anything (it could even be due to things like seasonal allergies - it's the same mucus that you'd find in your sinuses, and the digestive tract actually has the 2nd highest amount of histamine receptors in the body after the sinuses). So it doesn't necessarily mean anything. Are you having any other symptoms? You actually could try taking allergy medicine and see if that helps - certain gut conditions (mastocytic enterocolitis, for one) can actually be treated sometimes with allergy medications. But either way, if that's your only symptom right now, I wouldn't worry too much.

How's everybody else doing? I had a rough weekend. Had a multi-day migraine starting Thursday night, and just as I recovered from that, I had another episode of blood in my stool (I think due to a new fissure - I had taken some Zofran to treat the nausea from the migraine, the Zofran made me constipated, and when I passed a large constipated stool, it felt like I ripped myself a new fissure - yuck). I'm finally feeling mostly better and haven't passed any blood today. Lately it's always something, though. I go from one thing to another, from migraine to blood in my stool to whatever is next. My GI still thinks I'm in remission, but I'm growing increasingly skeptical.

 

[Izzie]

I still have the pain. And have to go to the bathroom waaaay too often (like 10+ times a day, it's kind of ridiculous). But no bleeding in a while now so I'm stoked about that.

 

[Wildmtnhoney]

Thanks Cat, that makes sense, and explains how I felt yesterday.

Now here comes a GP vent:
So, short recap: RLQ pain since last Tues, saw GP Weds and was told probably nothing, but go to ED if vomiting or fever. Started vomiting Sat evening, still Sunday morning, so I went in Sunday. They did CT, found a ruptured ovarian cyst, nothing in bowels, and sent me home w/percocet w/zofran. Saw same GP yesterday for followup.

She came into the office, not even pulling up my chart, and says "so, what exactly is it that you are wanting?" Ummm, to be WELL? We go round in circles for a bit, then she tells me, basically, to STOP trying to get a diagnosis, that I just have IBS, and I need to stop seeing drs, stop going to the ED for pain, vomiting, or fever (didn't she send me there???) and just learn to eat better (I told her the FODMAP diet didn't help even after 3 weeks on it, but she didn't hear me), calm down, and stop thinking about it so much. I asked how to stop thinking about going to the restroom 5+ times a day for D. She said to get back on the Lotronex, and she added an antispasmodic (that my pharmacy has to order, it's called...hang on, let me look it up...hyoscyamine) and told me to try VLS#3 too.

I can't tell if she just told me to get over myself or not, but it sure felt like she did.

And this is all so frustrating, because I had a spell of NOT having the constant RLQ pain, but now it's back and no wants to hear about it or do anything about it, except, it seems to me, to tell me it's somehow my own fault.

I had pain like this once in '08 when I was first told about my diverticulum, but never to this extent until Dec '13, when I *was* diagnosed, by CT, with a pretty severe case of cecal diverticulitis that had me admitted to the hospital for 2+ days on IV antibiotics, which lead to a C-diff infection and another hospitalization 2 weeks later. I haven't been the same since.

 

[Cat-a-Tonic]

Wildmtn, you need a new GP! She sounds awful. You know your body and you know things are not right, so don't listen to her and do keep pursuing a diagnosis. IBS doesn't cause vomiting nor fever! Hyoscyamine is an IBS med, so it might not help, but it's worth a try. It can cause bad reactions in a small percentage of people - I know this because I'm one of them, it caused me horrific nausea and vomiting. I'm in the minority though and it shouldn't do that to you.

 

[Camilynn]

Hi, I am new and posted but didn't get any replies so I am trying here.

I'll try to make my "story" as short as possible with all the info.

I'm 38 yr old female. I have had D ever since I can remember...not so much liquidity but alway soft, clay colored or yellowish. I have random (never know when it will hit) excruciating stomach pains where is literally feels like a million knifes are going in at once. I am usually awaken in the middle of the night with the pain and have really bad nausea and feel like I am going to vomit but never do. I also break out in a cold sweat all over and feel very faint. Along with it I have explosive diarrhea (very watery) and continue to be in excruciating pain until I eliminate all the stool. Then I am weak for hours afterwards

To cut my story, I strated having continuous nausea and went to my primary dr. Found out I had h pylori and he referred me to gi and started treatment. Did the antibiotics and prilosec for 2 weeks and then gi dr scheduled upper scope and colonoscopy.

Results of the upper scope...relux, barrets esphogus, esphogeitis, ulcer on the top of my esphogus, gastitis, and ulcerated polyp in my stomach.

Results for colonoscopy...internal and external hemorrhoids (which are STILL driving me nuts), polyp in sigmoid (removed), inflammation of the ileum and 3 small aphthous ulcers in the terminal ileum.

GI dr spoke with me afterwards and suspected crohns. Put me on prilosec, carafate and GI cocktail. I later found out from reading my report he prescriped Pentasa 500mg 2x, at 4x a day but I never got the script (they have now called it in and I'm waiting for it in the mail) he also ordered the pill cam.

Results from biopsies...well I have only spoken to a nurse over the phone and have gotten 3 different results. 1st result...lots of inflammation on all of the biopsies but no crohns or cancer. 2nd result...you just have inflammation from reflux and if dr suspected crohns he would have ordered more test...made me feel like a damn idiot! 3rd results...your biopsy came back positive for h pylori we néed to start antibiotics...me, really I just got off? Well I have to be off antibiotics for 4 weeks and all stomach meds for 2 weeks to do this breath test.

Anyone ever been given pentasa wight diagnosis...I'm scared to take it.

Now just to this past fri...woke up 11pm and 4am with what I will call a flare...see my description above. Called gi and they told me go to the er. By the time I go the excruciating pain is gone but I felt very very sick and weak. Dr have fluids (but I wasn't dydrated) iv nausea meds and bentyl. I felt normal when I left.

I constantly feel my stomach or insides. I rarely ever don't notice something just isn't right in there. Can h pylori cause ulcers and inflammation in the ileum?

Like most of you, I don't want crohns but I also would just like to know what is wrong.

Oh and I go D ag minimum 3 times a day on a good day but upwards of 15 times a day.

Thanks for listening/reading. Hope you all feel better and get some answers as well.

 

[Izzie]

Thanks Cat, that makes sense, and explains how I felt yesterday.

Now here comes a GP vent:
So, short recap: RLQ pain since last Tues, saw GP Weds and was told probably nothing, but go to ED if vomiting or fever. Started vomiting Sat evening, still Sunday morning, so I went in Sunday. They did CT, found a ruptured ovarian cyst, nothing in bowels, and sent me home w/percocet w/zofran. Saw same GP yesterday for followup.

She came into the office, not even pulling up my chart, and says "so, what exactly is it that you are wanting?" Ummm, to be WELL? We go round in circles for a bit, then she tells me, basically, to STOP trying to get a diagnosis, that I just have IBS, and I need to stop seeing drs, stop going to the ED for pain, vomiting, or fever (didn't she send me there???) and just learn to eat better (I told her the FODMAP diet didn't help even after 3 weeks on it, but she didn't hear me), calm down, and stop thinking about it so much. I asked how to stop thinking about going to the restroom 5+ times a day for D. She said to get back on the Lotronex, and she added an antispasmodic (that my pharmacy has to order, it's called...hang on, let me look it up...hyoscyamine) and told me to try VLS#3 too.

I can't tell if she just told me to get over myself or not, but it sure felt like she did.

And this is all so frustrating, because I had a spell of NOT having the constant RLQ pain, but now it's back and no wants to hear about it or do anything about it, except, it seems to me, to tell me it's somehow my own fault.

I had pain like this once in '08 when I was first told about my diverticulum, but never to this extent until Dec '13, when I *was* diagnosed, by CT, with a pretty severe case of cecal diverticulitis that had me admitted to the hospital for 2+ days on IV antibiotics, which lead to a C-diff infection and another hospitalization 2 weeks later. I haven't been the same since.

I know doctors like this all too well. Ugh! So frustrating. I've had similar experiences with several doctors. Unless you have "proof" in the form of test results that you're feeling bad - and sometimes even when you do - they act like you're making it up, crazy, looking for attention or all of the above.

Definitely sounds like you could use a new GP.

 

[Cat-a-Tonic]

Hi Camilynn, welcome to the club. Yes, I've taken Pentasa without a diagnosis. It's a very mild medication with a low risk of side effects. It might help and shouldn't hurt. It's normally prescribed for maintenance of remission - it isn't likely to get you out of a flare by itself though.

I don't know much about h pylori so I can't answer those questions. I wish you good luck on the pill cam! Keep us posted on how it goes.

 

[Camilynn]

Thanks. I was scared of the medication after reading side effects.

I forgot to add that I did the pill cam and the nurse called and said no signs of crohns...haven't gotten or seen the actual report but curious how I had ulcers just a week before that they didn't mention.

Also forgot to add that I have lost over 30 lbs without any effort what so ever. Not complain about that though because I have a lot more to lose.

My next gi appt is this thurs and can't get here soon enough. I'm only disappointed because I'm not seeing the dr that did the procedures. Ugh I just hope for some answers.

 

[Wildmtnhoney]

So I've left a message for the GP who prescribed it, and am on hold for the pharmacist...but does anyone here know why hyoscyamine comes with a side effect warning for increased diarrhea? I've already had 7 bouts in the 3 hours I've been up this morning, and that's just feeling ridiculous.

EDIT should have mentioned - I picked it up last night, took the first dose this morning, so this is my very first experience with it!

 

[kellehbeans]

Okay so this is a borderline TMI, pretty gross question but here goes: is it ever normal to have white mucus in your stool? Like, very visible chunks of it at that?

And if not, what exactly does it indicate when you do?

I've not had any (visible) bleeding since I started consistently taking a higher Omeprazole dose, so that would indicate I had an ulcer, right? But then my scopes are all clear so that doesn't really make any sense either. The only visible thing wrong now is this mucus situation which I don't know what to make of...

I have mucus a lot, usually more often when I am finding it harder to pass, although I do get it at other times too.

 

[kellehbeans]

Sorry for double post - but I've just had to look through all of the posts and realised I had to go back through the topic and read everything - I've been away for 2 days and it seems everybody has been quite active!

@wildmtnhoney - I definitely feel your pain on the bad GP's there - mine basically told me to get over it too. I don't think it's even worth mentioning now that my knee has started to kill now my stomach is flaring up badly because they'll probably just tell me I'm getting too fat (or something..) but I do have osteoarthritis in the family - both of my parents have it in their knees (my dad's came out when he was late 20's/30's), so I probably want to find out more. But I have requested a second opinion from a GP which is going to happen on 11th August.

I've been tested for H. Pylori but it was never found, so they've since moved on. They tried me with the FODMAP too and it really wasn't that great.

@Camilynn - May I ask what they have told you to do about the internal/external fissures and haemorrhoids? I have the exact same issue for 6 weeks and they just seem to be getting worse, even after using HC cream, normal anal cream and bah.. I'm at my wits end.

Also, welcome to the forum! Not the best place to be, but let's hope for a quick diagnosis so you no longer need to struggle. It sounds to me they are helping you out with medication, which is great.

Personally, I have been struggling with my stomach, probably set off by crap food that I had while away - namely ice cream. I had one cone, and ever since it's got ridiculous. I'm pretty sure I have another fissure, I now have external haemorrhoids and I'm not even straining for god's sake!! There's now days where I can't fart because I may poop my pants! I'm starting to go a lot more again and a lot of my stool are pretty pale. But I'm not even concerned about it any more - just want all the external and internal nasties to heal! I requested a 2nd opinion from a much better GP but I can't go for another 2 weeks. :-( Time to hold out..

Sorry if this message was a bit bitty, I've tried to keep up!!!

 

[Izzie]

I too have found I don't even want to mention other medical issues I'm having (like joint pain, or my heart palpitations, for example) because I'm already such a frequent flier at my GPs office at the moment.

I've been moving for the past few days. A lot of lifting and sloppy eating (my pots and pans aren't here yet, total disaster!), but it's actually been quite alright. I've been in a fair bit of pain, but no bleeding whatsoever in a few weeks now and it makes me feel pretty hopeful.

Still have to stay very close to a bathroom at all times. Had a very close call when I was on my way home from shopping, had to sprint for my front door

The belching persists, however, no matter what I do or how I eat. Is that something to be concerned about on its own? I mean it's annoying but not painful when it's moderate.

In other life news, I'm waiting to hear back from my university regarding whether or not I'll get into the major program I want. Which is not a sure thing considering my absence last semester. If I do get it, I'll be studying on a campus that is literally 2 minutes from my new home, which would be such a blessing on difficult days. Knowing that you can at any time get home quickly would make life a lot simpler. If I don't get it - it's a 30 minute commute again. So keep your fingers crossed for me!

 

[kellehbeans]

@Izzie - I really don't want to add to my problems to my GP. I think I'm going to have to mention it though, because it only usually goes like this when I've been heavy on squats, and I most certainly haven't. I'll randomly get twinges. I don't want to add to my list.. but this is more than likely stress on it throughout the years, rather than any connection - but I could be wrong.. I'll try and remember to mention it...

Have you stopped the Omeprazole?

I don't think you should worry *too* much about the belching on its own. I do it, constantly, even on water. So, don't panic, I don't think it's really that bad of a thing - just another symptom of GERD etc. Just hold out.

I'll be keeping my fingers crossed!

Oops, I should not be drinking caffeine - let alone two energy drinks in a row... OOPS!!! I was warned off of this, but I am SO tired I thought I'd take the risk (I've driving 350 miles in 3 days)

 

[Izzie]

@Izzie - I really don't want to add to my problems to my GP. I think I'm going to have to mention it though, because it only usually goes like this when I've been heavy on squats, and I most certainly haven't. I'll randomly get twinges. I don't want to add to my list.. but this is more than likely stress on it throughout the years, rather than any connection - but I could be wrong.. I'll try and remember to mention it...

Have you stopped the Omeprazole?

I don't think you should worry *too* much about the belching on its own. I do it, constantly, even on water. So, don't panic, I don't think it's really that bad of a thing - just another symptom of GERD etc. Just hold out.

I'll be keeping my fingers crossed!

Oops, I should not be drinking caffeine - let alone two energy drinks in a row... OOPS!!! I was warned off of this, but I am SO tired I thought I'd take the risk (I've driving 350 miles in 3 days)

Wow that is a lot of driving.

And nope, still on the Omeprazole, 40 mg a day. It must be doing something since I don't have bleeding anymore. If I miss a dose all hell breaks loose though.

The belching doesn't really bug me as long as it's not craaazy overboard, which it is if I skip my meds, it's just a very new thing for my body to do. Literally had never happened until this year. Must be because of the hiatus hernia that air can suddenly pop up in a place where it couldn't before...

I'm having a good week. Symptoms seem to kind of come and go for me. They never disappear completely but I have some weeks where I can be sloppy and it's mostly fine, I'll feel a little worse but still function, and some weeks where I live off boiled fish and soup in order to not be bedridden. Still haven't figured out what triggers those bad weeks.

Hope everyone else is doing alright too. I read all your posts even though I sometimes don't know enough about your predicaments to formulate a worthwhile response. You're in my thoughts though!

 

[kellehbeans]

@Izzie - As I said before, I honestly don't think the Omeprazole is making you bleed - it only really stops the irritation on the upper levels by reducing your stomach acid - and I thought, if you'd have a bleeding stomach ulcer or anything on that level, it'd come out as either occult or black, opposed to drops of red. I do know that if a dose is missed out of Omeprazole, it can cause major problems in terms of acid reflux and heartburn/indigestion.

Eh, try burping constantly, even on meds. It's horrible, but you get used to it, and you end up liking being a really unclassy girl. :lol:

That's good to hear that you're having a good week. I wish I was! But you seem to be doing well at finding triggers. I have been doing the same. Trying to stop myself from eating ice cream right now.. Oops.

 

[Izzie]

@Izzie - As I said before, I honestly don't think the Omeprazole is making you bleed - it only really stops the irritation on the upper levels by reducing your stomach acid - and I thought, if you'd have a bleeding stomach ulcer or anything on that level, it'd come out as either occult or black, opposed to drops of red. I do know that if a dose is missed out of Omeprazole, it can cause major problems in terms of acid reflux and heartburn/indigestion.

Eh, try burping constantly, even on meds. It's horrible, but you get used to it, and you end up liking being a really unclassy girl. :lol:

That's good to hear that you're having a good week. I wish I was! But you seem to be doing well at finding triggers. I have been doing the same. Trying to stop myself from eating ice cream right now.. Oops.

It's been basically black, when it happens. And occult, apparently, since I've tested positive for it. Really don't know if that's still the case bu the anemia is sort of staying at an even level so I don't think it's getting worse in any case.

It is a bit of a mystery as to why I bleed and why it stops with Omeprazole since I've had nothing strange show up on scopes. But I guess that's why I'm having a pill cam :lol:

But with how I've felt for most of this year, "kind of okay" is a huge win, even if it's just temporary :biggrin:

Ice cream is the literal devil. Tasty, but evil

 

[kellehbeans]

@Izzie - Ah, so you can see it though? Well, maybe stick to the Omeprazole. It sounds to me you may have an upper ulcer somewhere that needs to heal. Have you had an endoscopy? Pill cam will hopefully be your saving grace, fingers crossed.

'kind of okay' is a great feeling. I think I'm getting man flu. The men in my office said I definitely can't because I'm a female. But, nope. It's man flu. I know it. :lol:

 

[Izzie]

I have had several endoscopies. That's still the mystery, none of them have shown anything.

Went out for dinner with some coworkers yesterday and of course they all wanted to go to a Thai place. I'm suffering for it today I get this pain under my ribs that gets worse when I move certain ways. It's so weird.

But yeah spicy foods are not my friend. It's so awkward though to have to ask for special treatment so I just suffer through it. Which is DUMB. How do the rest of you handle social situations? Avoiding alcohol and coffee, trying to avoid certain foods AND having to run to the bathroom every 30 minutes through an entire dinner - it's awkward and I still don't have a good strategy on how to deal with it.

 

[kellehbeans]

@Izzie - Ah, I see. That is odd. Hopefully the pill cam will be your saving grace.

Thai, aha. Sweden loves Thai food, but surprisingly does not have any Chinese restaurants, and if they do, they're pretty rare. My friend in Karlstad misses Chinese, so she always demands we have Chinese and KFC when she comes back to England. I haven't heard of hurting when you move a certain way (unless you press it down of course!), unless you've had a heavy workout or something?

Spicy food is probably not your friend because it sounds as if you have GERD.

I don't really deal with social situations. I just do it, and then pay. I've suffered a lot today, I've eaten too much with the promise to myself I am going to do the specific carb diet on Monday (boyfriend is coming down this weekend and I know I can't stick to it during that period), so I thought I'd be 'clever' and eat whatever today. So not clever.

My boyfriend however (dx'd with UC) just turns down the social situations and tells them the truth. Maybe it's because he is a man, but he just tells them quite bluntly. With alcohol, he does get pestered a lot. He just has to stay strong, and treats himself to a nice coke instead :lol:
I do find it pretty hard though on the more serious side. I'm suffering with tenesmus today pretty badly, and it's being awful. I'm hoping I can use the bathroom before my OH turns up, I don't really want to spend the first hour of him travelling down 90 miles with me in the toilet! :lol:

 

[UnXmas]

I just order soup and ask for it to come as a main course. I've even asked for ice cream to come with the mains, or I just have a drink and no food. It's not worth it. I hate the taste of tea and coffee, so I'd be stuck with being weird even if I weren't ill. The only hot drinks I'll have are hot chocolate or hot malt drinks. I don't ever drink enough alcohol to get drunk either. But I don't ever go to any formal meals.

 

[Cat-a-Tonic]

I don't often go out to dinner, either, although I did go out with the hubby last night for Korean food. (Japchae and bibimbap! Yum! *drools*) Oddly, I used to not be able to tolerate spicy foods at all, but now I can do a moderate amount of spice and it actually usually makes me feel better. It's weird! I have a Korean-American friend who had recently gone through a very rough pregnancy, and while she was pregnant, she told me that when she was a little bit nauseous but not super nauseous, that she'd eat something spicy like kimchi and that would help her feel better. So I cautiously tried that myself and surprisingly had good results! Now I keep kimchi in the house at all times. You would think that something that is made from cabbage (nope) and hot chili spices (nope) and is fermented (gas!) would be awful on my guts, but it's surprisingly calming and easy on me. It's also delicious, and I've never been a fan of spicy foods before - certain spices can have anti-inflammatory properties though, so maybe that's why, it's something my body needs. Also maybe part of it is because I'm (supposedly) in remission? I don't know what kimchi would do to me if I had a lot of active inflammation, it probably wouldn't be so good for me then.

Anybody have fun weekend plans? I'm exhausted but hubby and I have decided to paint our house (we've done a bunch of work on the inside, but the outside is still ugly and needs paint - it's currently an ugly shade of pink, so we're getting rid of the pink!). I am so tired that I'm not quite sure how I'm going to manage painting, but hubby knows that I'm not feeling great today (I woke up and my head was trying to go into migraine territory - fortunately I got that stopped so my head is okay now but I'm seriously exhausted and fatigued). So yeah, it's a paintbrush for me, no rest for the wicked I guess.

 

[Izzie]

I have pretty tolerant and cool friends and coworkers so really it's more about me getting comfortable. If I had asked I'm sure we could've gone to a non-Thai place it's just that I feel awkward and nervous and don't say anything. And suffer for it later, obviously.

As for fun weekend plans I'm stil in moving mode, assembling a lot of IKEA furniture and unpacking. Feels great to live in a city. Strange thing to be happy about but now I can actually get myself to my hospital appointments via bus rather than have to beg my parents for a ride.

 

[Izzie]

Baaaad day today. It's 2 pm and I've had 7 bowel movements. Yeah. And now I have diarrhea too, which is rare for me. Feel altogether horrible.

 

[kellehbeans]

@cat-a-tonic - my other half came to visit me, but turns out when my eating disorder isn't covering up my other mental problems, that I'm an absolute pain and blame myself for everything and I'm going to end up pushing him away [emoji26][emoji26]! Stomach hasn't got no better, and my moods could do with improving more at the moment. I've just had to write a huge email to my psychologist basically begging for more therapy, although I am skeptical 1-2-1 meetings are going to help me right now. So all in all, I feel pretty [emoji107][emoji107][emoji107] right now.

@Izzie - rest up! That's horrible to hear, I hope the D clears up soon. [emoji17][emoji17]

 

[Izzie]

That sounds really difficult kellehbeans, hopefully your psychologist will get back in touch. I'm on a bit of a sabbatical from relationships currently because I have far too much to deal with even being on my own

I'm just going to sleep the day away as best I can. Completely exhausted even though I've gotten nothing done.

 

[kellehbeans]

@izzie - oh dear [emoji29] I have loads to deal with but I guess I hate being alone - although that's the first and only time I will ever admit that!!! I'm just scared at the mo of losing him and losing my sanity - haha. These hemmies and fissures are driving me mad, but on the positive, he has now met my parents - so one situation out of the way!!!!!

Hope you get some well-deserved rest!

 

[kellehbeans]

Been given prednisolone hexanoate, so possibility that they're taking me seriously now. They haven't even checked me over yet, but they seem to realise I am in a lot of pain! All I really did was try and call to see if I can have ibuprofen gel to help my knees which are cramping and keep locking!!!

 

[Wildmtnhoney]

kellehbeans - that sounds very ouchie! glad they're helping. but so sorry about the relationship status.

izzie - hope you're feeling better today?

cat - my weekend included shopping for the kids for school, ack! I can't believe summer is, for all intents, OVER!

so, throughout all my other stuff, I've also had issues w/fainting spells, often brought on by exertion, but lately just happening. my cardiologist is working me up (again) but thinks my tummy issues are at least partly to blame for the worsening, because I now show symptoms of orthostatic hypotension (new for me, my bp has always been on the low side, but this is worse) and she thinks that's due to all the D and not holding onto salt properly. So now I'm on florinef and a high salt diet (weird) and waiting until I can have my stress test on the 17th to see if my heart is doing anything to exacerbate issues.

 

[kellehbeans]

@wildmtnhoney - We're OK, really! It's just that I know I need to sort things out or I'm going to continue thinking I'm going to be losing the best thing in my whole life, which in turn probably will end up that way if I don't get my act together! It is all very ouchie in terms of the physical health, but need to go pick up a prescription which I think is quite promising.

Oh gosh, please let us know how you get on!!!

 

[kellehbeans]

Just going to post this as well as I have on another thread... This is what is going on basically...

I am SO ANGRY.

My surgery is the biggest joke I know. The pharmacist made me wait for half an hour to tell me they'd recalled the ointment, so then told me they'd ring for permission to give me the suppositories rather than the ointment. Half an hour later, doctor calls back and faxes through my new prescription.

When I get it home, I found she'd given me hydrocortisone AGAIN, when in my notes it'd have said it wouldn't have any effect as I've only just stopped taking it with no improvements.

I am so angry and upset right now, I thought my surgery had stopped being a joke. Now I'm crabby from very achy joints from standing too long and just being messed around. I've just lost £8.20 to something that I won't use, and then another £8.20 to get THEIR correction prescription.

I just want to cry and cry and cry.

 

[Cat-a-Tonic]

Aw, Kelleh, that's awful. That they wasted your time, money, caused joint pain and made you cry - I wish there was something I could say or do to help! I don't suppose you can see a different doctor, as it sounds like you've had some ongoing issues with this one? Were you able to get the correct meds eventually?

Oh, and I feel like I'm the opposite - I looove being alone. I love working out alone, I love having the bed all to myself, I love having the remote control all to myself, I just love every bit of solitude. I'm definitely an introvert and I treasure my "me time". My hubby goes out of town for work sometimes, and I look forward to those times probably way too much - I get so much done and I sleep so well and just plain enjoy life when he's away! Then he comes home and snores and hogs the bed and watches stupid TV shows (seriously, the Andy Griffith show?). I'm not going to divorce him or anything like that, I do enjoy his company, but I definitely appreciate and enjoy being alone too. Possibly a bit too much.

Wildmtn, I'm the same with sodium. It's the thing I lose the fastest when I'm having diarrhea, I just cannot hold onto my salt and that in turn drops my blood pressure too low. There have been times when I literally have drank soy sauce straight from the bottle (it's super high in sodium) - gross, but it helped. I also seem to benefit from a higher-sodium diet. Sometimes if I can tell I'm a bit low in sodium, I buy potato chips and tell my hubby that he can't have any, as they're my "prescription chips" ha ha.

Izzie, I hope today is a better day. Oh, and I love Ikea! The closest store is about a 2.5 hour drive from where I live, so I get really excited when I get to take a road trip to Ikea. I hope you're rested and doing better and settling in well to your new place.

How's everyone today? I'm exhausted. I never sleep well on Sunday nights, I don't know if it's stress about the upcoming work week or what. This week is shaping up to be quite stressful, too (a co-worker has taken this week off for vacation, so basically I have to cover her job and my own, yuck). So I'm just tired and stressed.

 

[kellehbeans]

I'm marching back into the doctors today and will be demanding they sort it out. The doctor that prescribed me pred is the doctor I'm seeing next week - the one that reverting me back, God knows who she even was. My night got worse & worse - I realised I'd lost a whole lot of new underwear (mainly all not thongs, I was very short of fissure friendly underwear!!) and a bra (which I didn't need to lose at all!) at the hotel I stayed at - then I cheered up, but got shouted at for basically being ill by my Dad, so I ended up in bed at 8:30.

 

[kellehbeans]

So, I've had a word with my doctor and decided to take the Uniroid - which is Hydrocortisone with some opiate as a local anaesthetic. He told me to give it until Thursday/Friday and call back if I've had no sort of relief from it - although I've told him that I am just going to leave it until Tuesday when I actually have an appointment. I do not have high hopes that this is going to kill my inflammation, but I guess I'm just going to have to give it a go now. My knees are so painful today, my left shoulder is all seizing up too - I feel like I'm falling apart! The ibuprofen gel is not helping - and I naughtily took some ibuprofen this morning but nothing is helping... just a damn stomach ache and waiting for a BM now to use this cream... Argh. At least I am nowhere near as stressed as yesterday...

 

[Izzie]

@kellehbeans Wow you've had some days! That pesky stress is the worst. As if it's not enough to feel physically horrible, you also have to deal with the stress of it. Hopefully the cream does something, if nothing else helps the pain until your appointment.

I'm okay, but annoyed. The D stopped after little over a day so that's good. However, still have not heard anything about the pill cam. The idea was to have it done before I start school again, which I do in two weeks, and I feel like I should've at least been sent the information and everything. Will have to call again if I haven't heard back by the end of the week.

I've started considering going to see a GI at a private practice once I've had the pill cam. I'm just really really sick of the attitudes, and the wait, and the mixed messages of public health care here right now. I'm especially sick of not being able to see the same doctor twice, like, ever.

There is just no consistency at all. And even if I won't get any clear answers as to what's going on, whatever condition I have definitely needs managing in order for me to live some kind of regular life...

I haven't decided, but it's an option at least. And it's very nice to feel like you have options, I've realized

 

[kellehbeans]

@Izzie - Already tried it, omg the nozzle really hurt!!!! Ah well, it has begun, we shall see where we go from here... I am definitely suffering - my joints hurt, my head keeps hurting - paracetamol does nothing and nor did ibuprofen. The nausea is back... I just want it all to end right now, I feel rough. Driving or walking makes my knees feel just achy and ugh. Even sat down...

Did they tell you when you'd hear back? I don't know if I would go private, I would be scared I'd get the same troubles, but then again, they're taking your money, they probably wouldn't be so bad.. Why can you not see the same doctor twice? Can you not request them if they turn out to be semi-decent?

I understand the no consistency, especially with last nights fiasco. There is absolutely no communication between the doctors in the same damn surgery!

Hey, you're looking a positives instead of the negatives! That makes me smile.

 

[Izzie]

@Izzie - Already tried it, omg the nozzle really hurt!!!! Ah well, it has begun, we shall see where we go from here... I am definitely suffering - my joints hurt, my head keeps hurting - paracetamol does nothing and nor did ibuprofen. The nausea is back... I just want it all to end right now, I feel rough. Driving or walking makes my knees feel just achy and ugh. Even sat down...

Did they tell you when you'd hear back? I don't know if I would go private, I would be scared I'd get the same troubles, but then again, they're taking your money, they probably wouldn't be so bad.. Why can you not see the same doctor twice? Can you not request them if they turn out to be semi-decent?

I understand the no consistency, especially with last nights fiasco. There is absolutely no communication between the doctors in the same damn surgery!

Hey, you're looking a positives instead of the negatives! That makes me smile.

I think the main problem still is just my mental health history and people not taking me seriously. It's still a toss-up every time I call whether or not they believe what I'm saying. I figure if they're taking my money, they'll at least pretend not to think I'm a nutcase :lol2: With all the tests and everything pointing to the fact that I have bleeding, sometimes they still don't believe me. Seems to change every time.

Doctors don't seem to communicate AT ALL to be honest. Even if I've met a few great doctors, the next time I have to go in and see someone else, it's like it never happened

I'm feeling pretty positive lately overall, even though I've had some not so fun days. I was reminded by my mother that in March I couldn't eat solids for a decent while and had to live on meal replacement drinks because every time I ate regular food I had such bad pain I'd end up in the ER. And had bleeding kind of all the time, I think, in retrospect. So being on Omeprazole HAS helped, or it's just eased off on its own, and I'd kind of be a jerk if I wasn't at least a little positive about getting better :lol2:

 

[kellehbeans]

@Izzie - Hmm, seems a lot of countries are still biased on whether you've had mental health problems or not in the past. I know with me, they're overlooked unless they're absolutely a [insert swear word here], then blame the anxiety, which I never had, or at least I didn't think so - they just diagnosed me with it alongside my bulimia. I've only had one person say that to me, but I completely understood her, and looking back, I believe her. If they can PROVE you have bleeding, they're just being silly and in denial. That needs to be looked in to by somebody that actually does understand and takes their job seriously.

The one I am getting my 2nd opinion from seems to be in a rush to get rid of me on the phone, I am hoping he is not the same when in the surgery! We shall see come Tuesday though..

Glad to hear that. I found Complan helped me when I was at my worst, and it seems to be helping my boyfriend into remission, alongside all of his meds etc. of course! He is down to having 1 meal replacement, rather than 2-3!

Omeprazole definitely shouldn't be taken off cold-turkey though, it gives the worst of heartburn you could ever feel! So glad you are positive though! It gives me hope - I'm trying to learn to be more positive (before I go to bed and when I wake up, I think of the positives of that day or previous day, I choose 3), to try and make it a habit! I'm sad, but it truly works!

 

[Izzie]

@Izzie - Hmm, seems a lot of countries are still biased on whether you've had mental health problems or not in the past. I know with me, they're overlooked unless they're absolutely a [insert swear word here], then blame the anxiety, which I never had, or at least I didn't think so - they just diagnosed me with it alongside my bulimia. I've only had one person say that to me, but I completely understood her, and looking back, I believe her. If they can PROVE you have bleeding, they're just being silly and in denial. That needs to be looked in to by somebody that actually does understand and takes their job seriously.

The one I am getting my 2nd opinion from seems to be in a rush to get rid of me on the phone, I am hoping he is not the same when in the surgery! We shall see come Tuesday though..

Glad to hear that. I found Complan helped me when I was at my worst, and it seems to be helping my boyfriend into remission, alongside all of his meds etc. of course! He is down to having 1 meal replacement, rather than 2-3!

Omeprazole definitely shouldn't be taken off cold-turkey though, it gives the worst of heartburn you could ever feel! So glad you are positive though! It gives me hope - I'm trying to learn to be more positive (before I go to bed and when I wake up, I think of the positives of that day or previous day, I choose 3), to try and make it a habit! I'm sad, but it truly works!

It's not that no one believes me, some don't, some do, some land in between and are sceptical and make me feel like I have to turn myself inside out to "prove" that my very real test results are valid :shifty-t: It's just not a nice feeling. I mean they wouldn't continue doing tests if NO ONE believed me. It's kind of that thing that many of us here seem to have experienced. "It's not a simple answer so we're going to say you're just stressed and have IBS" I just don't want to have to nag my health care provider to get some kind of consistency of care.

Positive thinking is great, even though I do think it's important to let yourself just hate everything and get it out on occasion. Which spaces like this are great for so you don't terrify your loved ones IRL who have a tough time understanding your frustration at times.

 

[kellehbeans]

@Izzie - Why do you think you need to make them believe you, when they have the proof in front of them, which is using something they obviously believe in and practice their selves.. Science. Gosh, some people confuse me. It's like me looking at somebody's programming code and not believing they've added an if loop to it, even if I'm looking straight at it. Bleurgh. Humans.
Nothing is a simple answer, regardless of what it is. IBS does not cause bleeding, so why on earth.. if you have fissures/hemmies and you were bleeding due to them, then I'd understand, but surely they've had a look to see if that's the cause and obviously thought - no... SO WHY?!!?!?! ArghhhhhH!!!!!!!!!

I usually hate everything and everyone. I'm trying to change that. :lol: My boyfriend understands, but at the same time, he doesn't. He's so relaxed and laidback. I'm generally laidback, but I am NEVER relaxed, and I've been so stressed and he can't see why I am. *shakes fist*

 

[Izzie]

Aaaaaand I must've eaten an unknown trigger because I'm suddenly in pain, really dark stools, belching up a storm and nauseated as heck.

Putting down yoghurt as a possible offender

 

[kellehbeans]

Do you write down everything in a diary? Or track it?

As for me, I'm here, can't sleep as now my lower back is killing me. So that's now both of my knees cramping and aching, my left shoulder and now my lower back as well as my stomach hurting more than I can remember. More stabbing pain that aches or cramps. I just want to sleep. That's all I ask. [emoji15]

 

[Izzie]

Do you write down everything in a diary? Or track it?

As for me, I'm here, can't sleep as now my lower back is killing me. So that's now both of my knees cramping and aching, my left shoulder and now my lower back as well as my stomach hurting more than I can remember. More stabbing pain that aches or cramps. I just want to sleep. That's all I ask. [emoji15]

Aww man I'm sorry you're in pain like that, it sounds horrible. When I have aches and pains in my joints and the like heat usually helps. Hot water bottles or heat pads or something like that.

And yes, usually I do keep a food journal but since moving things have been a bit chaotic and I haven't kept up with it as well as I should.

ETA: Realized what set me off. Raisins. No bueno.

 

[kellehbeans]

Aww man I'm sorry you're in pain like that, it sounds horrible. When I have aches and pains in my joints and the like heat usually helps. Hot water bottles or heat pads or something like that.

And yes, usually I do keep a food journal but since moving things have been a bit chaotic and I haven't kept up with it as well as I should.

ETA: Realized what set me off. Raisins. No bueno.

My upper back now hurts, as well as my lower, which I think is caused by my hips. My right ankle hurts to walk on, my knees still kill. I feel as if I'm going to get some extreme D today too, I don't know why. I feel incredibly windy for no reason whatsoever, but I'm too scared to do it secretly. I checked to see if there was a side effect of back ache with the steroids I am on, but apparently there isn't.

That's probably the reason why your stool was a bit dark? Well, that's if it passed through you too quickly, that is.

 

[Cat-a-Tonic]

Izzie, dried fruits such as raisins can be very difficult to digest (I have to avoid them too). You mentioned yogurt as a possible trigger as well - sometimes that also sets me off, particularly greek yogurt for some odd reason. Strawberries are also a trigger food of mine, and once I tried eating greek yogurt with strawberries. I couldn't even tell if I was passing blood or undigested strawberries or both afterwards! I think it was a bit of both. It was not a fun time. Yogurt with raisins would probably do something similar to me. At any rate, even though you're not feeling well, at least you've identified some food triggers.

Kelleh, I'm joining you in the joint pain club today. My reflux has been quite bad the past couple days, and last night I had a really hard time finding a comfortable sleeping position because my stomach and throat were both simmering with acid. Yuck. I did fall asleep, but I must have found a really weird sleeping position, because my knee really aches today. I'm guessing I slept on it all wrong. My bad hip isn't feeling so nice either, and my lower back is also achey. And my reflux is still bad so I'm guessing I have more fun in store tonight trying to find a sleeping position that is as kind as possible to both my stomach and my joints. Ugh. I hope you feel better soon! Are you still going to the gym a lot?

My boss just sent me an email saying that she wants me to go on the road to another one of our offices in another state "when you feel better." Um, it might be quite awhile. I think the last time I felt really well was, like, February? I have some good days but they can quickly turn bad (as we all know!). I did tell her that my acid reflux is horrendous right now. She wants me to help out at a work event on Sunday as well, and I just don't want to go. It's an event that is outdoors in the heat, and my guts really hate hot weather. Last year I helped at this event, and I was so sick the entire next day. I told her this - but she still wants me to go though. The sad part is, my boss claims to understand chronic illness. She's got a few health conditions herself. But she pushes me too much sometimes. I don't think I can work in the heat on Sunday, and I am feeling too ill to go to another state anytime soon. I feel like a crappy employee telling her that stuff, though. Maybe I should just suck it up and deal with whatever consequences my body throws at me. That seems like the wrong answer, though. But I hate to say no and look like a bad employee. Ugh. I don't know what to do.

 

[kellehbeans]

@Cat-a-Tonic - I haven't been to the gym in almost 2 weeks - I'm so upset about it - I have my gym kit next to me right now, but it just wouldn't be right if I went tonight. I don't know if you've seen my other topic, but long story short - my doctor told me my joint pain is being caused by a virus that 'mimics' the pain, and basically to take ibuprofen. I can take Omeprazole apparently to stop it from attacking my insides - which I'm extremely sceptical about. I'm sceptical about his 'diagnosis' too, but hey-ho! He didn't tell me I had IBS for the first time in 10 years, just 'you have a virus!' hah!
Are you gymming also?

Don't worry about saying no - you're not well. Health is the most vital thing and you only have one life - they can't really stop you because it is a definite medical issue. Maybe sit down with her properly and tell her? Tell her what it does to you exactly? All of those symptoms mixed up are not nice and probably wouldn't allow you to give 100% in your job. She needs to understand that. You won't look like a bad employee - just put yourself first.

 

[Cat-a-Tonic]

Yes, I'm still going to the gym pretty regularly. In an ideal world, I'd go lift weights every other day, and do something else like cardio or yoga on my non-weight days. Lately though my non-weightlifting days seem to be a lot of rest days, and sometimes I'm not well enough to go lift either which frustrates me to no end. I am going to the gym today, I'm not great but I think I'm okay to lift. I know what you mean about being upset at not being able to go to the gym - I absolutely hate it when I can't go work out! It's so frustrating to be too sick to exercise. Working out is probably my favorite thing, and I hate sitting around and doing nothing and just resting. I feel so good when I'm in the gym, I can fool myself for a bit and pretend I'm a normal, healthy person. When I am ill enough that I'm forced to rest and not go to the gym, it's like I'm smacked in the face with reality - and reality is saying, No, you're not normal nor healthy, you're sick and you're always going to be sick.

I saw your other thread where you talked about the NSAIDs and omeprazole - so if I understood correctly, this doctor diagnosed you over the phone as having a virus?? I would not go with that "diagnosis" and I would avoid the NSAIDs if it were me. I haven't heard of omeprazole protecting the digestive tract from NSAID damage - it could be true but I've never heard that. Did you just get the joint pains upon starting the steroid? Which steroid are you taking? Certain steroids can sometimes contribute to arthritis although of course so can IBD itself. You've had joint pains for awhile, correct? Have you had any tests like x-rays or MRI to look at your painful joints?

 

[kellehbeans]

My ideal world would be just going at least once this week at this rate! Sitting it out for sure tonight unfortunately. Ah well. I don't like resting either - I have to be kept active! I can't just sit around or I get seriously thoughtful and manage to upset myself! I'm really sorry to hear the reality part. I think that's going to catch me up eventually. [emoji17]

He did, he did indeed. The doctors tend to say it's a virus to everybody when it's not IBS. I've only taken this hydrocortisone for less than 48 hours, the joints were hurting waaaay before they gave me this ointment. It's only been for like a week, but they seem to be getting worse day by day. They did mention sending me to hospital about my haemorrhoids & fissures though, hopefully they'll see its inflamed by something else and help me get treatment I need and stop them throwing random meds at me.. They've managed to chuck just about everything at me recently to no avail. I'm hoping this dosage of cortisone will help me out, but I seem to just be having loads of tiny BM's, some just bring mucus and just completely irritating everything all over again. [emoji17]

 

[Cat-a-Tonic]

It sounds like you're considering going to the hospital then? If so, I hope they can help you and actually figure some things out - not just the hemmies & fissures but the joint pains and everything else as well. Keep us posted on what happens.

Yeah, reality sucks. I like to live in my pretend gym world where I'm healthy and strong and awesome. I only get depressed when I'm taken out of my pretend world and made to face the reality (working out is a powerful anti-depressant for me as well, so not being able to work out means I get depressed easily). It's like a balancing act, too - I need to eat foods that I know won't bother me, I need to get enough sleep, I need to get enough exercise, I need to take my meds and my supplements, etc. As long as I can keep all that going, I'm okay. But when one of the dominoes falls, all the others seem to go down as well. Like this week, I haven't been sleeping well (not sure why). So then my stomach/guts start to act up and I can't eat like I should (I eat a lot of junk food or whatever's convenient when I'm not feeling well as I'm just not feeling up to cooking), I can't exercise like I should, I neglect to take all my many supplements, etc. I have to claw my way back up to getting everything back to where it should be, and then it's only a matter of time before things start to fall apart again. It's exhausting. Is it any wonder I prefer living in a pretend world?

Oh, and about my boss - I have talked to her multiple times and I've even cried in her office, so she knows I'm suffering but I still don't know that I'm fully getting through. She's got health issues including vertigo (which I've also dealt with in the past) but I don't think she quite gets how severe things are for me. Like, a few weeks ago she was complaining about her vertigo, and she said that her vertigo at its worst was, for one evening she felt really dizzy and she said if it continued then she wouldn't be able to drive (she was doing better by the next morning though so she could indeed drive). Okay, yes, that's bad, nobody is denying that. But for me, when my vertigo was at its worst, I couldn't move my head without extreme nausea/vomiting so I had to lie perfectly still, I couldn't get myself to the bathroom by myself without falling/vomiting, I couldn't drive for weeks and even just being a passenger in a car caused extreme nausea, I had to walk with a cane for stability once I was able to walk at all. I couldn't keep down any food at first except that I could suck on hard candies, so that was all I ate for like a week. Showering was out of the question. It was extremely severe vertigo and it lasted for months. But when my boss wants to compare vertigo, I get the feeling like, she thinks her health issues are similar to mine, but they're not. I feel like mine are generally worse but then I feel like a whiner or like I'm one-upping her if I try to convey that. So usually I just push through and then go into the bathroom at work and cry when it gets overwhelming. I don't want to be seen as weak or that I can't perform my work duties. But these extra duties like working on a weekend (I'm a Mon-Fri girl), I just can't. I'm already pushing myself almost to my breaking point, you know? It's difficult enough as it is to work full-time with health issues like this. Some days I just cannot, and today is definitely one of those days.

 

[kellehbeans]

I will be, because all my lower GI, both anus and rectum are so DAMN inflamed, I'm wondering if something else is up rather than just haemorrhoids and fissures. 7 weeks with no healing is quite a pain. I'm now having to ignore my urges to go toilet, and wait until I actually feel something (which generally really hurts) so I don't keep opening my bowels. [emoji26]

Working out is the universal anti-depressant without the pills! I used to be so incredibly lazy, and now I love it! But now it's been stripped away from me, and it's just not nice. I'm really sorry that they have a horrible domino effect. That must be awful.

Mm, I have somebody on my team at work that suffers from vertigo, and his case sounds as bad as yours, so I can totally see your point. He is usually out of action for days on end when his appears. Nobody should compare each other's problems, it just doesn't work that way - especially when they think they can completely relate in the sense of 'my pain is worse or the same'. So, for her to turn around and compare because hers appears suddenly, is unfair as it doesn't seem as chronic as day in, day out. But some cases you just *know* are worse. She's just in denial. Probably a female thing too, as there seems to be a trend of 'I'm worse off than you' in a damsel in distress way! [emoji23]

Don't think you're weak if you cry, it's good to show emotion! She'll eventually understand, and if she doesn't, I'm sure a colleague will and they will give you a hand on resolving the issue with your boss. You really sound like you are going through the wars today. Sending big hugs to you.

 

[Cat-a-Tonic]

Yeah, I'm just having a day. I'm heading to the gym in a few minutes so hopefully I'll be doing better shortly. It definitely is the best anti-depressant! I used to hate working out as well, it seemed boring and difficult. Then I got sick, and as I got into remission about 4 years ago I started working out and found that I just absolutely loved it! So I've been a regular gym rat ever since, even though I fell out of remission a couple years ago and it's been a bit of a rollercoaster since then. I may or may not be back in remission now (GI thinks I am, but I am skeptical).

 

[Izzie]

@Cat-a-Tonic I so recognize the whole feeling good when you manage to get everything "right" thing. It's not always so easy, sadly. I also sometimes push myself at work more than I probably should and it always comes back to bite me in the ass. It's hard to say no though.

@kellehbeans Viruses and IBS, huh? I really wish more doctors would take their work seriously and not be so dismissive :/


Personally all I want right now is to sit down and have my questions answered by a doctor who ISN'T dismissive, treats me like a nutcase or otherwise diminishes or brushes of my issues. I hear it's possible Going to call my un-fun GI guy at the end of this week but I'm becoming more convinced that I want to just try the private route soon. That or I'm just going to have a hissy fit and yell at the next doctor I meet, I feel like.

Have also realized in the past few weeks that I'm somewhat of an emotional eater? I never knew this about myself before. But I can get pretty irritable when I'm having a stressful day and I can no longer just go have a cup of coffee or grab a pizza or a beer on my way home or something. Sometimes I'll find myself just ignoring a trigger and then suffer for it later. I need to be more diligent about it, I think, but I'm not used to treating my meals as... math, almost.

 

[kellehbeans]

@Cat-a-tonic - let me know how you get on!!!

@Izzie - I know! No IBS diagnosis today though, just a phone call virus diagnosis lol. I've just collected my extra strength ibuprofen and omeprazole.. *sigh* - although had to wait 2 hours for it - stupid pharmacy strikes AGAIN.. Have just run myself a bath though!

I'd just personally go up the wall, my anger issues have seemingly got worse recently. [emoji14] But just tell us how it goes - when is your appointment?

I was never an emotional eater - or at least I didn't think so. I used to 'stress-starve', rather than comfort eat. But I'm actually a known bulimic. I've been binge free for almost a month now, so I know mine isn't caused by stress, as I've been more stressed than ever recently. I think I've just finally accepted the underlying causes and just become more emotionally unstable. [emoji14] Remember, food is not definitely not the answer, unless you're hungry - especially when we have GI issues!!! Although, that is stressful in itself.. Just hold tight. Maybe find something else to destress, like perhaps treating yourself to a nice relaxing bubble bath? That shouldn't irritate your body and it'll make you feel sort of euphoric for a while!

 

[Izzie]

@kellehbeans I don't even have an appointment yet. I'm supposed to have a pill cam, I guess, soon? But I never get the papers for it and my doctor's office is a freaking joke. And he won't sign off on my transfer which is also very very strange so now I have to go to a hospital that is 3+ hours away which makes no sense.

If anything else messes up I swear to god I'll just flip haha

 

[kellehbeans]

Ohhh, sorry, I misread that you had an appointment at the end of this week! You really need to sort that out, surely you can walk in to the new one and say that yours is being a complete pain and won't complete them, but you need to continue with the diagnostics?

 

[Cat-a-Tonic]

I feel SO much better now. Just got back from the gym a little while ago. My mood is better, my energy level has improved, my joints don't ache nearly as much, I'm not as stressed out as I was. Is there any wonder I'm basically addicted to the gym? It really is like medicine, both for the physical and the mental & emotional side of things.

Izzie, as for finding something else besides food to de-stress as Kelleh suggested - when I first got sick, I was suddenly at the doctor, hospital, pharmacy, etc very frequently. Food was clearly not my friend but I was freaking out regularly and I felt the need to treat myself to something nice as a reward to myself for making it through yet another appointment. So every time I'd have an appointment or have to go to the pharmacy or whatever, I'd buy myself a bottle of nail polish afterwards. Nail polish is inexpensive, cute, pretty, sparkly, makes me happy, and I can paint my nails even when I am so ill that I'm not able to do much of anything else. As a result, I amassed a huge amount of nail polish pretty quickly. So I no longer buy myself nail polish for every appointment, but when I need a cheap pick-me-up, I still find myself heading for the nail polish aisle in the store.

Kelleh, I'm a stress starver, too. When I'm super stressed I tend to both forget to eat and to have no appetite. And I think I've mentioned this before but I was anorexic for a few years in my teens, so I totally get it, it's just plain ridiculous when you are recovering from an eating disorder and then your relationship with food becomes even more crazy complicated due to chronic illness. I was downright terrified of food particularly when I first got sick. There were certainly many times when I chose to eat very little or nothing, rather than eat something remotely risky and risk triggering my symptoms. (I'm better now, although I eat risky foods perhaps too often these days!) And when I flare, I tend to lose weight with no effort at all, it just falls off of me, which was terrifying at its worst as I didn't want to slip back into my old ways and encourage the weight loss or anything like that. And then when I was put on steroids, I gained a bunch of weight back and it all ended up as ugly fat in my belly area - ewww. Still working on losing that belly flab, trying to do it the healthy way with sensible diet and exercise although it's very stubborn flab and doesn't seem to want to go away. Still, I'd rather just live with the belly flab than go back to my disordered eating and destructive thought patterns, so I'm okay even though it is seriously ugly. I can deal with ugly better than I can deal with self-destruction.

 

[Lorikeetie]

Yes, I'm still going to the gym pretty regularly. In an ideal world, I'd go lift weights every other day, and do something else like cardio or yoga on my non-weight days. Lately though my non-weightlifting days seem to be a lot of rest days, and sometimes I'm not well enough to go lift either which frustrates me to no end. I am going to the gym today, I'm not great but I think I'm okay to lift. I know what you mean about being upset at not being able to go to the gym - I absolutely hate it when I can't go work out! It's so frustrating to be too sick to exercise. Working out is probably my favorite thing, and I hate sitting around and doing nothing and just resting. I feel so good when I'm in the gym, I can fool myself for a bit and pretend I'm a normal, healthy person. When I am ill enough that I'm forced to rest and not go to the gym, it's like I'm smacked in the face with reality - and reality is saying, No, you're not normal nor healthy, you're sick and you're always going to be sick.

I saw your other thread where you talked about the NSAIDs and omeprazole - so if I understood correctly, this doctor diagnosed you over the phone as having a virus?? I would not go with that "diagnosis" and I would avoid the NSAIDs if it were me. I haven't heard of omeprazole protecting the digestive tract from NSAID damage - it could be true but I've never heard that. Did you just get the joint pains upon starting the steroid? Which steroid are you taking? Certain steroids can sometimes contribute to arthritis although of course so can IBD itself. You've had joint pains for awhile, correct? Have you had any tests like x-rays or MRI to look at your painful joints?

Cat - PPIs are widely used for the prevention and treatment of NSAID-induced ulcers

Current treatment guidelines state that NSAIDs should be used at the lowest effective dose and that their long-term use should be avoided if possible. For patients at GI risk, guidelines from the American College of Gastroenterology, the European League Against Rheumatism, and the First International Working Party on Gastrointestinal and Cardiovascular Effects of NSAIDs and Anti-Platelet Drugs recommend the use of a nonselective NSAID plus a gastroprotective agent (PPI or misoprostol) or a COX-2 selective inhibitor.

My joints are so bad at the moment that my GI has said - take NSAIDs and he will "fix" any problems they cause. Not sure about that! Going to see my Rheumy to see what he thinks.

 

[Lorikeetie]

@kellehbeans Try icing your joints – especially if the pain and inflammation has just started or flared up. 10-15 mins every two hours if you can.
I am surprised that cortisone is making your joints worse – I love the relief steroids give, but it just doesn’t last long enough in me.

Fissures are a real pain – mine took over 2 years to heal! Have you tired nitroglycerin cream? That finally made a bit of a difference for me.

 

[kellehbeans]

@Izzie - Somebody in my therapy group used that too (what Cat said!) and went and treated their selves to new colours for their nails! I always say I'm going to do that, but I end up getting infuriated and inpatient that my nails do not dry quick enough! On that note, I'm painting my nails tonight - although not sure what colour(s)..

@Cat-A-Tonic - I know what you mean! I thought my eating was getting worse - but right at the beginning, it *did*, but after realising how stupid I was (and feeling quite stupid when my bf had a go at me in a nice way), I seemed to just have automatically have stopped. I think my stomach got worse last time I actually purged though, so that put me off for a start. My stomach is definitely not bad enough to be losing weight like that, but I have managed to set myself a goal of what to eat and how much of it, so weight does slowly get lost as I have put on quite a bit in the last year or so, well about 2 stone. Apparently I look no different :lol: but my disordered thinking is still there a little! I've just not gone to extremes and am allowing myself without too much pressure. For example, I had to wait 2 hours for my prescription last night, so I bought myself a kid's hot chocolate made with skimmed milk as a treat. I knew I wasn't really allowed to have it, but at the same time, it hasn't affected me that badly. I think I've got to the stage in my life also where I'd rather live with the belly flab than the disordered thinking and eating! It took over my life. I wouldn't be able to work without thinking about my next meal and what I could and could not have. It was stressful and extremely time consuming!

@Lorikeetie - I'm definitely not sure about taking the NSAID's, but it is only for a few days, so I'll see. They don't feel quite so bad this morning, but that's probably because my mind is on something else.. I may try the icing thing! I just need to make some..

The cortisone I don't actually think is making my joints worse, they started hurting before I started taking it, it's just progressively getting worse each day.

They really are - I've got the Uniroid, tried both Anusol's... argh. Nothing seems to be helping. 3 days in to taking the Uniroid with the opiate for the anaesthetic part.. and I still am in a lot of pain! I've not tried nitroglycerin cream, I'm not sure I've heard of it being used over here, but I may ask for it at my next appointment as you are not the first person to recommend that type of ointment.

As for me today, I'm really struggling not to go to the bathroom. I feel as if I need to go because something is sitting in my rectum, but I'm pretty sure that it is just the ointment, and I don't want to have to replace it!

 

[Izzie]

I found out today that I didn't get in to my university program after all. Like a catapult into a deep depression, basically

Not sure if I have it in me to commute and do that whole thing. It'll be very scattered, and I'm both sick and have ADHD so that's not my best environment. + it's my second choice and not what I really want to do.

No idea what I should do. Very sad and hopeless all of a sudden...

 

[kellehbeans]

I found out today that I didn't get in to my university program after all. Like a catapult into a deep depression, basically

Not sure if I have it in me to commute and do that whole thing. It'll be very scattered, and I'm both sick and have ADHD so that's not my best environment. + it's my second choice and not what I really want to do.

No idea what I should do. Very sad and hopeless all of a sudden...

Do you have a therapist you can talk to?

 

[Izzie]

Do you have a therapist you can talk to?

If I would feel the need to, yes. But I don't like therapy, bad experiences in the past.

I'm sure I'll be fine, just need to shake it off and make a new plan, but felt like such a blow. I'd been looking forward to it and kind of thought it was a pretty done deal.

I'm trying not to get too stressed about it, that'll just make everything worse. Deep breaths and a new plan, basically :smile: And some angry workouts, because why not :ylol:

 

[kellehbeans]

Ah, I see. I can totally see your point there. Just sometimes with ADHD + MH problems, you really do need to speak to a professional before you do yourself any harm/stress yourself out beyond belief.

But yes, stress will do nothing to help, you can't change what has happened. Do some angry work outs and come up with a new plan! [emoji123]

 

[Camilynn]

Update...so I officially hate the GI dr I saw to get my scope results...and he's not the dr that did the scopes. Anyways, he walks in and says oh youre here because you went to the ER, no I'm here for a follow up from my scopes. So he opens my record and says well your labs came back good so you have IBS. I asked can IBS or h pylori cause ulcers below the stomach? His reply "no, it only causes them in the stomach or at most the entrance to the small instestines. My ulcers are in the terminal ileum. He said well lots of people havery undetermined ulcers. I asked about taking the Pentasa (that I just got a expensive 3 month supply of) since he's saying I have IBS, his reply "take them, I want to see what they do for you". I left his office crying. He was a complete jerk and talked to me like I was stupid.

I have been put on bentyl and for the past 3 days I have not had diarrhea or many trips at all to the bathroom. Oh and BTW he told me I don't have diarrhea I have soft stools! Whatever!

I had to stop the carafate and prilosec because I have to do a breath test in 2 weeks. Boy I paid for it this weekend. I'm ok now just nauseous all the time.

Anyone with crohns or UC take bentyl or is it only for IBS? Should I take the pentasa? I have even opened the bottles because I'm scared it's not needed and that the side effects may be worse. So idk what to do. Just taking it one day at a time and praying the severe pain stays away!