Undiagnosed Club Support Group

[kellehbeans]

According to what I just read, a lot of intolerances such as lactose, gluten and fructose present to a professional, the complete symptoms of IBS and most people get misdiagnosed with IBS alone. The low-FODMAP diet was constructed to rule out any of these, or also to find out what IBS patients were sensitive to and was making their IBS symptoms worse. There's not an awful lot on the internet about low-FODMAP and usage in suspected IBD, but considering it is just an elimination diet, it can help to work out your trigger foods for your symptoms.

That was probably the best explanation that I had read. If I had read that when I was told to go away and do the low-FODMAP diet, I'd probably have stopped being stubborn and thought they were giving up with me and diagnosing me with IBS.

 

[meganwilson1991]

Oh i see, yes definitely. Gluten i have realised is a massive trigger...and honey funnily enough.

Haha, i felt the same when it was suggested i go away and start the diet, luckily i was already on it so said 'nope on it what else can you suggest'. They're bored of me-i reckon when i call the doctors there is a note that pops up along side my name that reads 'HYPOCHONRIAC STEER CLEAR'.

There is only one GP who is amazing and refers well, the rest of them are condescending 'its all in your head' types.

Kelleh-it must be nice to finally get a piece of jigsaw solved

 

[Izzie]

@kellehbeans Congrats on the diagnosis, hopefully that can help you manage things better!

Me, I was up last night almost crying because it was the first time I'd not had burning from reflux in MONTHS. I'd forgotten what it felt like not to have it, even. No other antacid has ever had that effect. I'm just so glad there's something that works, even for a little while. And I hope that this realization will help my doctor get on board too, since I doubt "phantom pains" would be helped by antacids

 

[kellehbeans]

@meganwilson1991 - Sometimes you don't just have intolerances to all in a food group, but maybe just certain ingredients that you are sensitive too, that do kick off IBS/IBD symptoms. My boyfriend is very bad with onions. It's just a case of finding your own triggers - it's not always an intolerance or allergy. It's just finding out!

@Izzie - Thanks, kind of relieved. Same doctor that diagnosed with me IBS and a virus, so was really impressed he moved away from this! I am definitely not feeling too great this morning though, and the guys in the office want me to go to McDonald's. Torture!

The burning is the most horrible thing. I was almost sick every time I got it, a few times I actually was, just bringing up acid and it hurt. A lot. I solved it with the oral suspension though. As I keep saying, I'm going to keep raving about it until you try it over the tablets.

 

[meganwilson1991]

@Kellehbeans Ye it is nice when a doctor who downplays your symptoms finally finds something and changes their tune somewhat. However my gastroenterologist decided it was nothing and to ignore which was frustrating-they found gastritis and lose fluid in my stomach but apparently 'its of no concern'. Its like they look and look but don't care when they find something. But im glad they took note for you!

I've always been curious about this site, you all seem like you're v friendly with each other, have any of you ever met up?

 

[kellehbeans]

@meganwilson1991 - I'm totally glad that they've done this. I need to get Laxido now, which I thought was OTC but turns out it's not. Time to get angry at my pharmacy.. again. It's in after 4 tomorrow apparently. So, not all that bad. I ended up with McDonald's because somebody paid for me, but I sat and picked out every ingredient I thought I could not have, and ended up ordering fries and a chicken mayo! YUM. Now I don't feel left out!

I haven't met up with anybody. I think there's other people that have, but I'm not one of them!

 

[Cat-a-Tonic]

Izzie, you're correct that ranitidine isn't as effective as omeprazole. I currently take 40 mg Nexium (esomeprazole) and I also take 2x 300 mg Ranitidine daily - one tablet before working out, and one before bedtime. The Ranitidine is better than nothing and it helps a bit during my worst reflux times, which are exercise and lying down (squeezing my abdominal muscles during a workout really gets my reflux going, and lying down/sleeping allows everything to flow up my throat that much easier). I know that I couldn't get by on just ranitidine alone, though. It's a decent second-string med but I need something like omeprazole or esomeprazole as my main reflux med.

As for generic vs name-brand, I am not really able to answer that. I've only ever been on generic omeprazole, generic ranitidine (never took the name brand for either of those). And I'm on name-brand Nexium as there is currently no generic on the market for that, although I've read that there will be a generic available in the relatively near future (not sure when exactly). So I've only ever taken either or, I haven't tried both a generic and a name brand of any of the reflux meds. Here in the US, generics are MUCH cheaper than name-brand (with my insurance, I pay $10 per month for each generic med - for name-brand, I pay at least $75 per month) so I tend to go with generics whenever possible as it saves me a lot of money.

I've tried the gaviscon liquid and it was so-so for me. I didn't really notice any major improvements when I was taking it - I didn't get worse, but I didn't get better either, I think I just basically stayed the same. Some people swear by it though so it's worth a try at least.

Kelleh, ha ha! I think the contact lenses incident was actually the last time I ate grapes, it was just too weird. That's hilarious that it made you hungry for grapes. So you got diagnosed officially with fructose malabsorption? That's good - although I presume this means no more chocolate cookie pizza?

 

[kellehbeans]

@Cat - That would definitely put you off though, I can understand that! I am too lazy to eat grapes. Means packaging some up and taking them to work. Can't take the carton, my parrot loves them too much, and I can't take that joy away from him Yes, although I may try and see if the GI can point me in the correct direction of the breath test so that we have something. Although, I'm sure they're going to want to make sure that everything else is OK with me.

It also presumes there's a lot of things I can't eat. I think I'm feeling particularly delicate anyway, but I didn't realise mayo from McDonald's had something in I shouldn't particularly have, and now I just feel stupidly fatigued and my stomach is killing! I just want to go home, curl up and sleep.

Slightly upset about the cookie dough pizza.

 

[Wildmtnhoney]

Kelleh, I think any diagnosis is a step in the right direction, so here's to it!

Izzie, oh, I'm so glad you felt better last night, wonderful news!!

Hiya to Megan!

Re: FODMAP - I tried it for a full month, and got no where except annoyed. I missed onions and garlic and mushrooms soooo much, and neither my D nor pain improved.

Which brings me to the appt I had today with the new dr! He is super nice, didn't talk down to me at all, and I feel hopeful now. He, like Cat said, thinks this is more a C-diff issue than an IBD thing. Which is good news. He even brought up fecal transplant as an option without me having to mention it, and said he can contact people at Mayo if needed to get me set up if there is no one locally who is willing/able to do it. But first he wants to see if my current GI is willing to try oral Vancomycin. I never had that w/my Cdiff, just Flagyl, and there are strains of Flagyl resistant cdiff that can "hide" in...diverticulum! Ha! I have other stuff going on (fainting issues that may be heart related) that he is also looking into for me, and wrote a letter to my cardiologist already. He wants to see me back in a month, so he can continue to monitor and help coordinate my care. It's just so nice to know I have someone on my side, ya know?

 

[Izzie]

@Wildmthoney that is amazing news, that doctor sounds great, I wish I could find someone like that! What kind of a doctor is he?

Nice to have one person whose willing to sort of hold the reigns a little for all your issues.

 

[Wildmtnhoney]

Izzie - he is now a specialist (sort of a "super specialist" even, he focuses on bone diseases that are caused by metabolic disorders), but he's seeing me as an internist - sort of a GP for "older" people (which I'm not, I don't think, at 38 ) which is what he used to be, and is a license he still holds (I'm guessing he does it just for cases like this, where he wants to be central and not a specialist).

 

[Cat-a-Tonic]

Wildmtn, sounds like a great doctor, very encouraging! How interesting, I didn't know that about c diff potentially being able to hide out in diverticulum (I swear I learn something new from the forum every day!). If you do go the Vancomycin route, do still keep an open mind about doing fecal transplant as well. Vanco is a pretty harsh antibiotic from what I understand, so a fecal transplant could still be beneficial to help you repopulate your "good" gut bacteria once you're done with the Vanco (and of course it could wipe out any lingering c diff if the vanco doesn't get rid of it all). Keep us posted on what you end up doing treatment-wise and how you're doing! Oh, and you are NOT an "older" person at 38! I'm 35 and I have multiple friends in their 40s and to me we're all still young.

Hi Megan, to my knowledge nobody from the Undiagnosed Club has ever met up. I'm friends with a bunch of people from the forum on facebook (and on that note, if anybody wants to facebook friend me, just send me a PM as I don't like to post my facebook info on the public section of the forum). Awhile back another girl from the Undiagnosed club and I did make plans to meet up, but then her plans changed so we didn't actually get to meet. (She lives in Indiana, about 5ish hours away from me, and she was supposed to go to a meeting near where I live, but then her meeting got cancelled - she and I still may meet up in the future if we're ever in the same area again.) So no, I haven't yet personally met anyone else from the club/forum in real life. We're all just sort of in the same boat here, and nothing is TMI and we can talk freely about things that would maybe be embarrassing to talk about in real life, so I think those things automatically makes us all able to be fast friends on here. We're all in this together, we're all here for each other. It's a crappy situation (pun intended) to have an illness like this, but at least we can all support each other and help each other out.

Kelleh, that sucks about the mayo! I seem to recall reading somewhere that McD's puts added sugar into most if not all of their menu items in some way, so maybe there was added fructose in the mayo? I would imagine eating at restaurants/fast food is going to really be difficult for you for awhile while you adjust to figuring out what you can and can't eat fructose-wise. Poor thing, I hope you feel at least a little better soon - you've had such a rough time lately!

 

[Wildmtnhoney]

Cat - yeah, it's interesting, and I'm not finding the right reference articles yet, but I *am* finding articles that point out that if you still have your appendix, you are MORE likely to get, and keep C-diff, so it makes sense that any other "pouch" that is similar would cause similar problems.]]

EDIT! Found an article, and it even talks about vanco.

http://www.todayshospitalist.com/index.php?b=articles_read&cnt=414

 

[meganwilson1991]

@Cat-a-Tonic Ye i have to say it is really nice to be able to talk freely, both in graphic terms but also i feel i wear people out with my constant winging. My grandma had bowel cancer surgery and a week later she was doing xmas dinner, not a peep...guess i dont take after her in that department.

Its quite clear the vast majority here have something else going on, rather than it just being a case of IBS. I fear sometimes its just luck that the doctors order the test that finally diagnoses something. Once they rule out IBD, they get a little stumped it seems..

@Wildmtnhoney and @Izzie im glad you guys are moving in the right direction, diagnosis wise

 

[Cat-a-Tonic]

Wildmtn, interesting about the appendix. I think I read somewhere recently that the appendix contains much higher amounts/concentrations of bacteria than the rest of the gut, so it makes sense that c diff could hide out there as well. I'm learning a lot today! So does this mean that a potential appendectomy is in your future as well?

Megan, there's a few schools of thought behind IBS, and one is that there really isn't any such thing as IBS at all - that it's really a number of other illnesses (IBD and many others) that can cause gastro symptoms but all get misdiagnosed and lumped together as IBS. I have to say, that theory makes sense to me. So many of us get diagnosed as having "IBS" by bad or lazy doctors who can't figure us out or can't be bothered to figure us out. And then most of us go on to get diagnosed with other, actual, illnesses. So to me, I would never settle for an IBS diagnosis. It certainly doesn't make sense for me and my symptoms (plus the fact that I respond very well to IBD meds). There are so many illnesses that can cause gastro symptoms - not just IBD but also Addison's, lupus, cancer, Behcet's, celiac, and so on. I think that for the vast majority of people who get lazily diagnosed with "IBS", that they've really got something else going on that the doctors just haven't found yet. Certainly for those of us (myself included) who have symptoms that don't "fit" with IBS such as blood in the stool, unintentional weight loss, getting up in the night to go, joint pains and other extra-intestinal manifestations, etc - we really need to fight to be heard because that's almost certainly not IBS. I have arthritis in both hips and I'm only 35 - you can't tell me that is just from IBS or that I would have gotten arthritis anyway (there's no history of arthritis in my family aside from my 83 year old grandfather who has age-related wear and tear arthritis). I'm ranting now, but you get the point. I definitely agree with the school of thought that says that IBS isn't a legitimate thing, it's just a ton of misdiagnoses.

 

[Izzie]

@Cat-a-Tonic I'll co-sign that rant of yours, for sure. I do think that some stomach problems probably can be benign and at times stress-related but doctors are far too quick to assume that every problem is one of those. Persistent symptoms should definitely be taken more seriously.

Meanwhile, I'm having the best day I've had in a loooooong time, health-wise. I don't know why or how but the Gaviscon is really kicking my reflux's booty right now. Very strange to think that two days ago I felt horrible. Too scared to hope that it'll continue being this effective but for now I'm having the time of my life. That specific reflux-pain and burning really gets me down usually, I'm realizing. I feel so damn positive today just not having to hurt ALL the time.

So today has been all about stopping and smelling the roses.

 

[meganwilson1991]

@Izzie-Thats great, im so glad you're feeling well! I always feel like fundamentally im a happy person but when im unwell im so so sad, to the point where my mind just runs away with me (never a good thing)-the difference a healthy day makes.

 

[Izzie]

@Izzie-Thats great, im so glad you're feeling well! I always feel like fundamentally im a happy person but when im unwell im so so sad, to the point where my mind just runs away with me (never a good thing)-the difference a healthy day makes.

It makes SUCH a difference. I don't think I appreciated my health before all this, to be honest. Took it for granted. If I'm going to look long and hard for a silver lining to all this, it's that I've learned to value just feeling normal. And how it's very worth a little extra work to try and be as healthy as possible.

 

[Wildmtnhoney]

so, umm...how much bright red blood on the toilet paper would be too much? And would be awful to ask my husband to check for external "issues" before calling the doctors office?

 

[Izzie]

so, umm...how much bright red blood on the toilet paper would be too much? And would be awful to ask my husband to check for external "issues" before calling the doctors office?

I'm guessing that if you're asking you already think it's too much? And heck, marriage is sickness and health, totally not awful. Part of the husband job, I'd say

 

[Wildmtnhoney]

Well it wasn't the blood but the PAIN that finally lead me to the ED. Where I'm still sitting, but the dr just examined me (omgoodness, owwie!!) and he thinks it's a fissure. So I have scripts for pain meds, nitroglycerin ointment, and stool softener to take while I'm on pain meds so that I don't get constipated and make it worse. I already had an appt to see my GP on Monday, so now I'll just tack this conversation on.

 

[kellehbeans]

Kelleh, that sucks about the mayo! I seem to recall reading somewhere that McD's puts added sugar into most if not all of their menu items in some way, so maybe there was added fructose in the mayo? I would imagine eating at restaurants/fast food is going to really be difficult for you for awhile while you adjust to figuring out what you can and can't eat fructose-wise. Poor thing, I hope you feel at least a little better soon - you've had such a rough time lately!

They do unfortunately. I've since been through supermarkets and fast food restaurants to come up with a list so that it makes my life a little easier when buying stuff. At least I'm not pooping oil now but my stomach is in agony, but it's better than that!

 

[kellehbeans]

Argh. Still passing 'oil'. Stomach still hurts. I only have 2 days left of Pred, so may be that in the end (although I can't find anything about it and surely the malabsorption happens elsewhere in the GI tract??).. although the lactulose really did not help. I haven't taken lactulose for 24 hours now, so I thought it'd be out of my system.. Oh well... we shall see. Was hoping to go back to the gym tonight but I still feel really crap.

 

[Cat-a-Tonic]

It makes SUCH a difference. I don't think I appreciated my health before all this, to be honest. Took it for granted. If I'm going to look long and hard for a silver lining to all this, it's that I've learned to value just feeling normal. And how it's very worth a little extra work to try and be as healthy as possible.

Izzie, that is exactly how I feel too! I definitely didn't appreciate my health before I got sick, particularly when it came to fitness. Back then I hated going to the gym, I found it boring and difficult. Now, I realize how important my health is, and I loooove going to the gym. Working out lets me feel healthy and normal, that's basically the one and only time that I get to feel that way. That's why I go to the gym so often, not only does it help my physical and mental health, but it also lets me feel normal/awesome for a bit.

Kelleh, I don't know how long lactulose takes to leave the system, but many meds can take weeks to fully exit your system. I know that pred can take a couple weeks to fully be gone from your system. Also, a few years ago my GI prescribed me hyoscyamine (or however you spell that). I had a bad reaction to it, it caused me horrendous nausea and vomiting. I of course immediately stopped taking it, but I continued to be super nauseous for 2 or 3 weeks afterwards, it just took that long for it to get out of my system. So, I would think that only one day of no lactulose is probably not enough time. I'd give it at least a week if not 2.

How's everybody today? Fun plans for the weekend? I'm going on a mini road trip tomorrow (just a day trip) with my hubby. There's a historical site that I've been wanting to tour, they apparently only do tours on weekends at certain times and only in the summer, so I am jumping at the chance to do the tour tomorrow. I'm pretty excited, this is definitely a bucket list item for me. It's about a 4 hour drive each way so I'm not looking forward to the long drive, but I think it'll be worth it. It's something I really want to do, and my guts have been pretty good lately, so I'm confident I can do this! And if things don't go smoothly, well, then I have Sunday to rest and recover.

 

[kellehbeans]

Cat - I think it may just be to having a foreign object in my butt, but not sure why it's yellow and watery. But the pill itself is quite waxy, so could explain a bit. No idea, just wish I felt a bit better. Feeling a little down at the moment, I want to go to the gym as I've been once in 3 weeks. I want to go, but I don't feel like it, if you know what I mean. Hopefully it'll subside too, I can't go on keep feeling like this.

I want chocolate is how I feel right now. My 'safe' stash is at home. I'm at work for another gruelling 2 hours and all I have is some awful brain fog. I'm trying to do something, and I KNOW how to do it, but I just can't put it into action. Every time I do, my head just gets all confused and fuzzy. *sigh* At least it's Friday.

What sort of tour is it for? That sounds good, I am totally jealous. I'm just going slightly blonder this weekend. No boyfriend trips for 2 more weekends! Could do with some recovery time to myself in all honesty.

 

[Izzie]

I've been having some more pain today but it's still nowhere near what it was a couple days ago. The Gaviscon helps a lot when I take it before bed. I think a lot of the GERD damage happens at night and then makes me feel sick all day. I bought a new bed that raises up too so that should be getting here in a couple weeks. Hopefully that'll help. I think one thing triggers another. I sleep and feel worse - I walk around belching all day which in and of itself causes more reflux, I get more pain, I get stressed and sad, everything gets worse and on it goes.

I'm hopeful for my talk with the GI now that I've found something that makes a real difference. I think a lot of his hesitation about the GERD had to do with the fact that nothing really helped. Like well of course medication doesn't work - it's in your head. I'm so very sure that at least part of my problem is reflux now so I think I'll be able to convince him.

Whatever other problem I have has taken a backseat to the reflux stuff at the moment, I need to get it under control before I'll have the energy to do anything else...

As for weekend plans I don't have many. Spending time with my parents and doing some cleaning and fixing up at home. I start school again on monday so I'm going to try and relax.

And Cat-a-Tonic I love historical anything honestly, that sounds really fun!

 

[meganwilson1991]

That sounds fun-I'm also a fan of historical stuff, but when I was at school I hated it, all the wasted field trips...

I'm on my way to Yorkshire atm, traffic has been a nightmare and travelling 3 hours has taken is 6 (luckily I'm the passenger so not so stressful). Stomach wasn't great this morning but seems to be ok now, to be honest I think it was anxiety that caused it this morning-I woke up fretting about how I would cope of I felt ill during the trip as were here till Monday. I've found that telling myself I'll be ok and that this WILL NOT last forever has helped.fingers crossed.

 

[Wildmtnhoney]

My weekend plans involve having a friend and her kids over tomorrow, to play in our backyard w/our kiddos.

And lots of sitz baths, I think.

 

[Cat-a-Tonic]

Thanks guys, yeah, I love history. It turns out there's a lot of history in my state, too. In particular I'm fascinated by crime history, people like John Dillinger and Baby Face Nelson are my favorites to read about. So, tomorrow this is where I'll be touring:
https://en.wikipedia.org/wiki/Little_Bohemia_Lodge

I've been there once before but they weren't doing tours then. It's been over 80 years since Dillinger, Nelson, and their gang had a shootout with the FBI at that lodge - the bullet holes are still there though! The original windows with the bullet holes, bullet holes in the woodwork, etc are all still there. It's a fascinating place, it really hasn't changed much in the last 80 years. So I'll have a tour of the upstairs, where the Dillinger gang slept and left some of their belongings, and then I'll have lunch there (it's mainly a restaurant now).

I've been to a few other Dillinger & Nelson sites before and it's always a cool experience. I toured the jail in Indiana where Dillinger escaped from, I've been to Nelson's grave and the site of Nelson's final shootout with the FBI in Illinois. It's just fascinating history, these guys were really compelling characters - Dillinger was so cool and charismatic and such an enigma, and Nelson was an absolute horrendous psychopath but also oddly enough a loving family man who took his wife and kids with him as he travelled around and robbed banks. It's just such an interesting subject to me. So yeah, I'm excited for tomorrow!

 

[Izzie]

RE: Gaviscon, how much of it can you even take? Box says "as needed" but as needed for me is like... constantly And is it ill-adviced to take continuously? The only thing that concerns me is the aluminium hydroxide which to me doesn't sound like something you want in your body in excess? Maybe I'm totally off, though.

 

[Bunty]

Izzie, I definitely take gaviscon as and when needed, sometimes I glug it down straight from the bottle. I suppose if you're taking it continuously...how many times a day would that be?...then the cause needs investigating.
I take two or three desert spoons of it just before I head upstairs to bed and find it really helps. I also now use three pillows which also helps.
Maybe you need to ask your GP about other meds you could take to prevent acid, which would mean you wouldn't have to drink gallons of gaviscon
Bunty x

 

[Izzie]

Izzie, I definitely take gaviscon as and when needed, sometimes I glug it down straight from the bottle. I suppose if you're taking it continuously...how many times a day would that be?...then the cause needs investigating.
I take two or three desert spoons of it just before I head upstairs to bed and find it really helps. I also now use three pillows which also helps.
Maybe you need to ask your GP about other meds you could take to prevent acid, which would mean you wouldn't have to drink gallons of gaviscon
Bunty x

I'm already on Omeprazole too, it's just completely stopped working. I'm talking to my doctor next week though so hopefully I'll get something else. The only thing that works currently is Gaviscon. I take the pill variety though. I've been trying to restrict it to 3 times a day but I could easily do 5-6 if I didn't restrain myself

It's the only thing holding me over right now, I get the burning from hell if I don't take it, it sucks.

 

[Bunty]

I also take lansaprazole, and recently have been taking ranitidine half an hour before bed too, before I glug the gaviscon. Hopefully for me this will only be temporary though, as it's the prednisolone which is giving me indigestion problems...down to three of the little monsters today, the end is in sight!
Have you looked into how gaviscon works, and the best way to take it? They reckon the fluid works better than the chewable tablets, and the dual action stuff is best. It also says not to eat or drink anything after taking it as this compromises its effectiveness by making a 'hole' in the thick raft of gaviscon holding the stomach contents in your stomach.
You probably already know that though, so just ignore me
I hope you find something that works Izzie, it's just misery isn't it?
Bunty x

 

[Izzie]

I also take lansaprazole, and recently have been taking ranitidine half an hour before bed too, before I glug the gaviscon. Hopefully for me this will only be temporary though, as it's the prednisolone which is giving me indigestion problems...down to three of the little monsters today, the end is in sight!
Have you looked into how gaviscon works, and the best way to take it? They reckon the fluid works better than the chewable tablets, and the dual action stuff is best. It also says not to eat or drink anything after taking it as this compromises its effectiveness by making a 'hole' in the thick raft of gaviscon holding the stomach contents in your stomach.
You probably already know that though, so just ignore me
I hope you find something that works Izzie, it's just misery isn't it?
Bunty x

Yeah reflux is hell. I'm trying to attack it form all angles right now, sleeping on a raised bed, taking meds, eating right etc. but it just doesn't want to give in. I'm a little concerned because I have a hiatus hernia (albeit a small one), that it just won't ever go away. Which is a scary thought indeed.

Did not know that the fluid was supposedly more effective, might have to make a pharmacy run today with that bit of information :lol2:

What exactly is the dual action stuff? I've only seen the... regular stuff

 

[Bunty]

I too have a hiatus hernia..undiagnosed, or rather self diagnosed but agreed with by my GP..and that's why I started taking gaviscon quite a few years ago.
It did the trick up until last year when all this crohns stuff started and I was put on Prednisolone, which gave me really chronic indigestion through the night. Lansaprazole was prescribed and I've been taking that ever since. This time on pred has caused the same indigestion problem, even though I'm already on lansaprazole, so my GP added in ranitidine, and I've continued to take gaviscon too. Problem resolved.
I'm not sure what the difference is, I can't do links as I'm so technologically challenged but if you do a bit of searching on your computer you'll come across lots of information..best way to take it, differences, etc.
Best of luck
Bunty x

 

[Wildmtnhoney]

Another day, another pain-filled trip to the ED. This time for extreme RLQ pain. I am told that the CT showed "inflammation around the cecum" but it's not appendicitis, and they didn't see the diverticulum, so it's therefore not diverticulitis, so I was sent home with a diagnosis of epiploic appendagitis. The good news is my white blood count is fine (but my red blood count is still dropping, thanks to the big spleen, but still w/in limits).

I hate it when I feel I've been given a "we don't know what's wrong, so here's something benign it could be, now go home" diagnosis. I mean, of course I *WANT* things to be ok, but how is inflammation ok? And really, how likely is it that someone who has known cecal diverticulitis now suddenly has a rare form of inflammation in the same spot? ARG!

 

[Izzie]

Another day, another pain-filled trip to the ED. This time for extreme RLQ pain. I am told that the CT showed "inflammation around the cecum" but it's not appendicitis, and they didn't see the diverticulum, so it's therefore not diverticulitis, so I was sent home with a diagnosis of epiploic appendagitis. The good news is my white blood count is fine (but my red blood count is still dropping, thanks to the big spleen, but still w/in limits).

I hate it when I feel I've been given a "we don't know what's wrong, so here's something benign it could be, now go home" diagnosis. I mean, of course I *WANT* things to be ok, but how is inflammation ok? And really, how likely is it that someone who has known cecal diverticulitis now suddenly has a rare form of inflammation in the same spot? ARG!

That's usually my experience in the ER. "It could be nothing so go home". Sorry you're having a hard time :hug:

 

[meganwilson1991]

That happened to me once. I was in severe agony with lower right pain and couldn't even move-was forced to go to a&e and wait 7 hours! During this time I'm crying and writhing in pain. When I get seen all they did was end up telling me to come back the following day and adopt a wait and see approach. No tests, nothing.

 

[Izzie]

Update on me: still doing surprisingly well on Gaviscon which makes me hate the fact that I haven't tried it before. Doing so well on it in fact that I'm starting to think that the doctor who suspected that what I have is IBS and GERD might not have been too far off?

Going to discuss it with the GI when he calls, but I doubt that a medication like this would have such a positive effect if reflux wasn't a pretty big part of the problem. And in any case I don't think I can be on Gaviscon 5 times a day forever so I definitely need to adjust some medication.

The one thing that bugs me is that no one has found the source of my bleeding. If this helps so much, then they really should've seen it on my upper scopes, you know? If they managed to miss an ulcer on TWO scopes then that's just... crazy, isn't it? Wondering if I should insist on them finding the source of it or if it's likely that they have just missed something. Again, I still have had bleeding on 40 mg of Omeprazole a day and I don't know if that can happen either if what you have is an ulcer?

But so far, and I don't know if it's just how I'm perceiving it right now or what, it seems like every single one of my symptoms except frequency of bathroom trips, are being helped by the Gaviscon. Which shouldn't happen unless it was a reflux/ulcer thing, right?

If anyone has any thoughts or any input, I'd be happy to hear it.

I'm confused, but positive, I guess sums it up

 

[meganwilson1991]

Update on me: still doing surprisingly well on Gaviscon which makes me hate the fact that I haven't tried it before. Doing so well on it in fact that I'm starting to think that the doctor who suspected that what I have is IBS and GERD might not have been too far off?

Going to discuss it with the GI when he calls, but I doubt that a medication like this would have such a positive effect if reflux wasn't a pretty big part of the problem. And in any case I don't think I can be on Gaviscon 5 times a day forever so I definitely need to adjust some medication.

The one thing that bugs me is that no one has found the source of my bleeding. If this helps so much, then they really should've seen it on my upper scopes, you know? If they managed to miss an ulcer on TWO scopes then that's just... crazy, isn't it? Wondering if I should insist on them finding the source of it or if it's likely that they have just missed something. Again, I still have had bleeding on 40 mg of Omeprazole a day and I don't know if that can happen either if what you have is an ulcer?

But so far, and I don't know if it's just how I'm perceiving it right now or what, it seems like every single one of my symptoms except frequency of bathroom trips, are being helped by the Gaviscon. Which shouldn't happen unless it was a reflux/ulcer thing, right?

If anyone has any thoughts or any input, I'd be happy to hear it.

I'm confused, but positive, I guess sums it up

In glad you've found something that helps you. You said you're waiting to get a capsule endoscopy didn't you? I think that's you're best bet to try locate the bleeding if an upper and lower scope showed nothing, because as you said something has to be causing the bleeding, it's not something that just happens without a reason.

 

[Izzie]

In glad you've found something that helps you. You said you're waiting to get a capsule endoscopy didn't you? I think that's you're best bet to try locate the bleeding if an upper and lower scope showed nothing, because as you said something has to be causing the bleeding, it's not something that just happens without a reason.

Well I have had an MRI already, I don't know if that would've shown active bleeding but I feel like it should have.

Nor do I understand why Gaviscon would help if I had a small bowel situation going on. I don't know, to be honest, and I always have to be very clear about what I want when I talk to my GI or he just does nothing

 

[kellehbeans]

Been doctors again. My doctor is thinking UC/CD at the moment, and has requested I have all of my blood work done again. Ugh...

 

[meganwilson1991]

Been doctors again. My doctor is thinking UC/CD at the moment, and has requested I have all of my blood work done again. Ugh...

Have your symptoms worsened? What makes him now think it's ibd?

 

[Izzie]

...Okay so my doctor's office just called. When I was at my last appointment with him in like, I don't know, I think it was June, he said we'd have a capsule endoscopy DONE within two weeks of that date. Then he forgot, and I called a while ago to remind him, and then he said two weeks after THAT date. Now, the nurse tells me it's another TWO MONTHS wait.

AND I can't even get the man on the phone until Thursday next week.

So frustrated. If not for the fact that I'd found some relief these past few days, I'd be furious. Might have to just call my GP and see if I can get in on some new reflux meds that way.

After the discussion with the nurse though it seems like the capsule endoscopy is still a go even if it seems like my problems may be reflux related. Seemed entirely unwilling to entertain the idea of a pH test even though I'm like helloooo I have reflux, please confirm it. I swear to god doctors have such one-track minds.

Think I have to go through my GP again, or even private practice if I'm going to get the reflux thing sufficiently investigated. But I don't know. Maybe if I find something that works to treat it I don't need to confirm it as such.

 

[meganwilson1991]

...Okay so my doctor's office just called. When I was at my last appointment with him in like, I don't know, I think it was June, he said we'd have a capsule endoscopy DONE within two weeks of that date. Then he forgot, and I called a while ago to remind him, and then he said two weeks after THAT date. Now, the nurse tells me it's another TWO MONTHS wait.

AND I can't even get the man on the phone until Thursday next week.

So frustrated. If not for the fact that I'd found some relief these past few days, I'd be furious. Might have to just call my GP and see if I can get in on some new reflux meds that way.

Getting the results back from one isn't easier either...been nearly 3 weeks and nada. Though I'm hoping if anything was wrong they would have contacted me. Who knows.

This is the thing with nhs, it is great and we get treatment for free but the long waiting times are something else. I've decided to use my savings for private treatment-I waited 7 months to get a capsule endoscopy!

 

[Izzie]

Getting the results back from one isn't easier either...been nearly 3 weeks and nada. Though I'm hoping if anything was wrong they would have contacted me. Who knows.

This is the thing with nhs, it is great and we get treatment for free but the long waiting times are something else. I've decided to use my savings for private treatment-I waited 7 months to get a capsule endoscopy!

I don't really have a problem with waiting as such, I have a problem with them saying one thing and doing another. AND the fact that I'm getting zero help in the meantime.

 

[kellehbeans]

Have your symptoms worsened? What makes him now think it's ibd?

He asked me if I felt worse than I did 3 or 4 months ago. Of course I do. At the moment all I seem to be passing is mucus, and I'm going to the toilet and producing 'pebbles' 5-6 times a day, no proper solid BMs. Ah well. Now it's just the challenge of getting through to the hospital. :rof:

 

[Wildmtnhoney]

Izzie, I'm glad the gaviscon is working so well, but man, I wish they'd help with you answers already! Good luck!

Kelleh, Sorry you have to start all over, but maybe it's for the best? And it's a bummer to hear you're feeling so poorly

 

[Cat-a-Tonic]

Ugh. I feel awful today. Exhausted (more than my usual level of exhaustion), dripping blood out my ass (fissure I think?), a bit shaky and chilled, stomach is very unhappy. Just feeling totally bleh. I went in to work today but I'm thinking of going home sick once I get a few things done that need to be done. I'm just generally having a pity party today. I went into the bathroom and just cried earlier - my emotions always go haywire when I'm not feeling well. Ugh ugh ugh. There's no reason for this, I didn't eat anything iffy lately. I feel like I just want to curl up and cry myself to sleep.

/vent over. Thanks for attending my pity party. Next time I will hand out party hats and those little party things you blow into and some paper unfurls and makes a "toot" sound.

 

[kellehbeans]

Izzie, I'm glad the gaviscon is working so well, but man, I wish they'd help with you answers already! Good luck!

Kelleh, Sorry you have to start all over, but maybe it's for the best? And it's a bummer to hear you're feeling so poorly

Not so much all over - I'm not worried about the blood tests. If I'd had more testing then I may have complained a bit. My GP just didn't know what to do with me until I see the GI and he realised I'd felt worse since my last ones, and considering my haemorrhoids etc. aren't really clearing up and I have other suspected inflammation higher up in my colon etc. then he's hoping it shows up on the tests. So, CRP will probably point out if I have inflammation again or not. He warned me the GI will probably order me have my bloods done again when he or she sees me too. I'm going to be bloodless soon!

@Cat - I'm really sorry to hear you're having a bad start to your day. I know what you mean about the 'I didn't eat anything dodgy' thing and 'why am I in so much pain if I didn't' - you feel as if you may give up and eat whatever you want and probably end up making yourself much worse. I do hope you feel a bit better soon.

 

[Wildmtnhoney]

Oh, cat, I'm sorry. I wish this were easier. I hope you do take some time off today.

 

[Wildmtnhoney]

Oh, good! While I'm sorry you have to see the vampires again, I'm glad it's "just" blood work!

 

[Wildmtnhoney]

Ok, I am triple posting (sorry!) but, omg, I just passed by the mirror...and I am so bloated I look, like, 6 months pregnant! And it's not my imagination. I asked my husband, and he's all "umm, yeah, didn't want to mention it..." UGH!!

I see one of the GPs this afternoon as a followup to all the ED visits (oh joy). Not looking forward to seeing her after our last visit.

I also called my GI's office, and left a message re: the dx of epiploic appendagitis, in case they want to follow up, too.

Cat, can I bring the little plastic poppers to our pity party?

 

[meganwilson1991]

That is the main problem I find with all these chronic problems-they're so sporadic that you don't know whether your coming or going. It makes it so depressing that you do whatever you can, are as healthy as can possibly be yet for some unknown reason can just randomly feel like rubbish. There is literally no rhyme or reason.
I hope you feel better soon

 

[kellehbeans]

We all seem a little in the wars at the moment! Sending everybody some kind of virtual hug!

 

[Izzie]

Lets all just throw ourselves a pity party and go at it. Sometimes you need to vent. Sorry you're all having a rough time!

 

[Bunty]

So what's on the buffet table at this pity party? Let's talk food.....
Bunty x

 

[buttER]

I'll join the pity party, especially if it is virtual and we can have whatever we want!!!!

I will also be 20 years younger and dance until dawn.

Anyone else in?

 

[kellehbeans]

I'm definitely in.

I want ice cream and jelly. All of it. Plus peanut butter Oreos and cider. [emoji22] I'm upsetting myself thinking about it, haha!! Oh the things I miss..

 

[Izzie]

Give me a super-size bottle of Gaviscon and soup and at least I won't suffer

Would it be odd if I requested a stool test for occult blood at my GPs? My GI is still being a butt about thinking I'm only anemic because of "periods", so I really would like some more proof, if you will, that that's not it. But I feel like it'd be pretty awkward to ask.

 

[kellehbeans]

Give me a super-size bottle of Gaviscon and soup and at least I won't suffer



Would it be odd if I requested a stool test for occult blood at my GPs? My GI is still being a butt about thinking I'm only anemic because of "periods", so I really would like some more proof, if you will, that that's not it. But I feel like it'd be pretty awkward to ask.

Lighten up! This is fantasy, you can have whatever you want! Don't overdo the Gaviscon - but i will warn you, it does turn your poo white sometimes!!!

Nah, just ask. Say it doesn't add up and the worst they can say is no!

 

[Izzie]

Lighten up! This is fantasy, you can have whatever you want! Don't overdo the Gaviscon - but i will warn you, it does turn your poo white sometimes!!!

Nah, just ask. Say it doesn't add up and the worst they can say is no!

Well in fantasy land hand me a beer and a burger and I'll be good to go :ycool:

 

[kellehbeans]

Tomato sauce with that?

 

[Izzie]

Tomato sauce with that?

Oh you bet. We're talking a fat cheeseburger with ONIONS and ketchup and ALL THE FIXINS! And a Corona with lime. Yummmm.

If we can throw in some Tiramisu and an Irish Coffee on top of that then I'm just... on cloud nine No more pity in this party, no siree

 

[Bunty]

Hmm, think I'll have my home made chilli with loads of kidney beans, two or three chopped chillies, enriched with some 70% chocolate. Washed down with a few glasses of chilled white wine...with sticky toffee pudding to follow, smothered in clotted cream.
Oh yes, coffee with Cointreau to finish thank you
Bunty x

 

[Izzie]

Ughhh, when I feel better for a few days, my idiot brain decides that it's totally fine if I cheat a litte. Had coffee and a cinnamon roll earlier. Of course now I feel like death warmed over. I resent the fact that I have to make all these lifestyle changes. It's petty and whiny but I want to be able to have coffee and not get sick, damnit!

 

[kellehbeans]

Ughhh, when I feel better for a few days, my idiot brain decides that it's totally fine if I cheat a litte. Had coffee and a cinnamon roll earlier. Of course now I feel like death warmed over. I resent the fact that I have to make all these lifestyle changes. It's petty and whiny but I want to be able to have coffee and not get sick, damnit!

Cinnamon rolls are amazing. >.> I don't think I'd be able to live without your guys cinnamon rolls. *drools*

Coffee is a bad one, especially if you suffer with the D! Because I have the 'C' at the moment, well, sort of, I think... I think I need coffee, but guess what, I have none! Nor do I have 20p to go and get a rubbish vending machine one!

 

[meganwilson1991]

I almost think it's important to occasional eat a few bad things (unless it's really badly tolerated). I've gone on bibs fodmap diet and became so obsessive about what I could and couldn't eat that I've now developed a bit of food fear... It's annoying because I was such a foodie. I reckon it's where half my weight loss has come from. A health bar doesn't quite scream "eat me" quite like a croissant. Sad times.

 

[kellehbeans]

I almost think it's important to occasional eat a few bad things (unless it's really badly tolerated). I've gone on bibs fodmap diet and became so obsessive about what I could and couldn't eat that I've now developed a bit of food fear... It's annoying because I was such a foodie. I reckon it's where half my weight loss has come from. A health bar doesn't quite scream "eat me" quite like a croissant. Sad times.

I tried to tell my doctor I couldn't do the FODMAP diet because of my past. I tried to tell her that when she told me to eat 2-3 times a day rather than 5-6. But, the 2-3 times a day has actually helped me, big time in terms of mental health. But when she wanted me to do the FODMAP, I could have killed her there and then. :hallo3:

Don't let this make you have a food fear. You NEED to introduce things back to see what effects you and what does not. If you do not, then you'll end up eating things that make you so unhappy, when you could be eating things that make you happy and have no effect on your GI tract.

 

[Izzie]

Cinnamon rolls are amazing. >.> I don't think I'd be able to live without your guys cinnamon rolls. *drools*

Coffee is a bad one, especially if you suffer with the D! Because I have the 'C' at the moment, well, sort of, I think... I think I need coffee, but guess what, I have none! Nor do I have 20p to go and get a rubbish vending machine one!

Coffee would help my current situation on that level 'cause you're not the only one with the C... but it sets of my reflux soooooo bad. Sometimes when I really need for things to eh, get going, so to speak - I ignore the reflux and have some anyway. But it's no fun.

 

[Izzie]

I tried to tell my doctor I couldn't do the FODMAP diet because of my past. I tried to tell her that when she told me to eat 2-3 times a day rather than 5-6. But, the 2-3 times a day has actually helped me, big time in terms of mental health. But when she wanted me to do the FODMAP, I could have killed her there and then. :hallo3:

Don't let this make you have a food fear. You NEED to introduce things back to see what effects you and what does not. If you do not, then you'll end up eating things that make you so unhappy, when you could be eating things that make you happy and have no effect on your GI tract.

I had total food anxiety earlier this year. I had a few months where I couldn't tolerate ANYTHING and I got legit anxiety attacks at the thought of having to force myself to eat something. Now with the reflux meds and having identified some things that I should just avoid - it's a little better. But I'm definitely no longer the foodie I once was.


ETA: Even though I've been feeling kinda okay the past few days, I have this really bad pain in my back on the left side. Like in my side/rib area, which is the area where I've had most of my pain, only in the front. Is it possible for GERD to cause pain like that even though it's clearly not... the right spot? I don't know, it hurts when I press it. Could this be small bowel stuff hurting in this area?

Super frustrating. Also had a completely black bowel movement this morning. Not sure if it's bleeding or not,but it always alarms me since I've had bleeding before. At least my iron levels have stayed pretty consistent for the past few months so that's promising...

 

[kellehbeans]

I had total food anxiety earlier this year. I had a few months where I couldn't tolerate ANYTHING and I got legit anxiety attacks at the thought of having to force myself to eat something. Now with the reflux meds and having identified some things that I should just avoid - it's a little better. But I'm definitely no longer the foodie I once was.


ETA: Even though I've been feeling kinda okay the past few days, I have this really bad pain in my back on the left side. Like in my side/rib area, which is the area where I've had most of my pain, only in the front. Is it possible for GERD to cause pain like that even though it's clearly not... the right spot? I don't know, it hurts when I press it. Could this be small bowel stuff hurting in this area?

Super frustrating. Also had a completely black bowel movement this morning. Not sure if it's bleeding or not,but it always alarms me since I've had bleeding before. At least my iron levels have stayed pretty consistent for the past few months so that's promising...

For the black stool, you really need to get yourself checked out..

Argh, talking of blood, I'm saying bye to 4 vials of mine today. :cool2:

 

[Izzie]

For the black stool, you really need to get yourself checked out..

Argh, talking of blood, I'm saying bye to 4 vials of mine today. :cool2:

I have myself checked out constantly for it but I just get dismissed by my idiot GI, excuse my language, who insists that I'm just seeing things and am anemic because of periods.

They've really kind of done everything to check it? The colonoscopy, the gastroscopy, the MRI, the soon to be pill cam. If they're not finding the cause I'm not sure what I can do about it...

It's like "yeah you're in pain, you say you have black stools, and we're seeing a significant drop in your blood iron levels. but you know what, it's probably nothing, you're a woman, you have periods!"

:shifty-t:

But yeah this is why I'm going to ask my GP to do another occult blood test the next time I notice it. I need more "proof" to make them shut up about periods

 

[kellehbeans]

Izzie, seriously, next time it happens, take a photo. I know it may feel like you're being disgusting or whatever, but they NEED to see it. Do you have known really bad/heavy periods then, or is it your doctor just accusing you of being a woman? Make them do the occult test.

What can you do? Just keep pushing.

 

[Izzie]

Izzie, seriously, next time it happens, take a photo. I know it may feel like you're being disgusting or whatever, but they NEED to see it. Do you have known really bad/heavy periods then, or is it your doctor just accusing you of being a woman? Make them do the occult test.

What can you do? Just keep pushing.

I guess I kinda have bad periods? But on the other hand I always have and I have NEVER been anemic before in my life until my stomach issues started. And it always happens when I have bad other symptoms too.

But yeah I'm not going to stop nagging them about this until they give me an explanation as to why it's happening. Or it stops, I guess, but so far it's still happening... It's scary to not know why!

Isn't the wait part of this whole undiagnosed game just the WORST though? Like it took me 6 months to even get to a GI. Probably going to take until next year until I get in with my new GI at the new hospital. And from what I've heard from the rest of you that isn't even bad.

 

[kellehbeans]

I guess I kinda have bad periods? But on the other hand I always have and I have NEVER been anemic before in my life until my stomach issues started. And it always happens when I have bad other symptoms too.

But yeah I'm not going to stop nagging them about this until they give me an explanation as to why it's happening. Or it stops, I guess, but so far it's still happening... It's scary to not know why!

Isn't the wait part of this whole undiagnosed game just the WORST though? Like it took me 6 months to even get to a GI. Probably going to take until next year until I get in with my new GI at the new hospital.

Ugh. What I got from 'bad periods' was told that it was IBS. They're not so bad now, in fact they're quite annoying. My cycles are shorter than they were before, I actually have one every month now at least. I hate being a woman. But when I was on the pill and also in the grasp of my bulimia, I just didn't have any for a year or so.

Just take a photo. Take it with you. Shove it in their face and go 'LOOK, THERE IS SOMETHING GOING ON'. Watch over it today.

It took me 5 months to get a GI appointment and 4 months to get to the actual appointment. So, yep.

 

[Izzie]

Yuppppp. I had much higher hopes for the GI too, he just kind of turned out to be an ass. My GP is much nicer and easier to deal with. But my next appointment there is in three weeks. Blarrggh the waiting game.

 

[kellehbeans]

Yuppppp. I had much higher hopes for the GI too, he just kind of turned out to be an ass. My GP is much nicer and easier to deal with. But my next appointment there is in three weeks. Blarrggh the waiting game.

If you have a black stool again, sorry for repeating myself, but take a photo and request an emergency appointment. Call up in the morning and go, I don't want to go to A&E but please, I need to see somebody, because of the pain and just say 'rectal bleeding'. Usually, most receptionist will jump at that. Even if it means not seeing your actual GP, it may be beneficial to you to see somebody else/somebody new.

 

[Izzie]

If you have a black stool again, sorry for repeating myself, but take a photo and request an emergency appointment. Call up in the morning and go, I don't want to go to A&E but please, I need to see somebody, because of the pain and just say 'rectal bleeding'. Usually, most receptionist will jump at that. Even if it means not seeing your actual GP, it may be beneficial to you to see somebody else/somebody new.

No I agree. It's just that I've done exactly that several times and it's resulted in fuck all, so I'm a bit exasperated with the whole process. They basically just take a blood test, determine that I'm not anemic enough to need a transfusion or anything, say that they can't do anything since I'm in the middle of the whole GI process, and send me home.

 

[kellehbeans]

This time, you'll be armed in evidence. Or, if you want to make them see, bottle it up and take it with you! They definitely can't do anything then, and possibly test it for faecal occult bleeding.

 

[kellehbeans]

I think the only inflammation markers that will appear on my blood test will be from the fact I had to run back to my car which was on the other side of the car park, and that'll be from my knees and ankles. :rof:

 

[Cat-a-Tonic]

I was away for a couple days, but I'm back to join this epic-sounding pity party. Bring on the pizza and spaghetti! (Both are major reflux triggers for me, it's the highly acidic tomato sauce.) And yes, we can have party poppers! And coffee! (Migraine trigger.) Man, I miss coffee. I used to love treating myself to a fancy coffee with fun stuff like caramel and whipped cream added. Now the closest I get to that is the occasional hot chocolate made from soy or almond milk. It's just not the same.

I just went through some fun. Monday morning, I had blood dripping out my backside. After the dripping, it turned into gushing. I had 5 very bloody bowel movements that day which is a new record for me. *Takes a bow, accepts a trophy.* All that blood loss made me feel pretty light-headed. I rested Monday and yesterday, but today I finally dragged myself in to urgent care to get checked out as I'm still rather light-headed. They confirmed I have a nasty internal hemmie (right inside my anal sphincter, lovely) that caused all that bleeding, and they gave me more steroid suppositories for it. But, they also did bloodwork, and oddly enough my bloodwork looks good. I'm less anemic now than I was in the past - ??? How does that happen, I felt like I was poo'ing out all my blood. So weird. I guess I should be glad my bloodwork is fine, but I still feel pretty crappy and light-headed, so yeah.

Izzie, do they have at-home fecal occult blood tests over there? Here in the US I believe you can buy a kit like that over the counter, you follow the instructions and send it off to a lab along with a fee (I think it's something like $50) and they test it and send you the results. No doctors needed. It's a bit pricey because you have to pay for the test itself ($20ish I think) and then the lab fee too, but it's nice to have the option to test for it yourself and being able to bypass doctors.

 

[kellehbeans]

@Cat - oh Cat!!!! That sounds horrific! What steroids did they give you? Let me know how you get on and if you respond... 5mg of pred wasn't enough to rid of mine, but my fissure ripped open more yesterday as I stupidly used a glycerin suppository. Now my stool has changed further. Last night. Lots of mucus. Today. Same. Argh. Blood tests all done with, shall see next week.

I want tomato sauce. Definitely a massive trigger for me. pizza... *drools* or even spaghetti bolognese...

 

[Cat-a-Tonic]

Kelleh, I'm back on the hydrocortisone (steroid) suppositories - I believe the name of them is Anucort. It's worked pretty well for my internal hemmies multiple times in the past, but then again my hemmies always seem to come back (hence, the multiple times that I've been on these steroid supps). The urgent care doctor today said that they can put a band around this hemmie to cut off its blood flow or whatever, but he also said that it could come back even if they do the band thing - and since mine always come back, I decided against doing the band.

I hope your bloodwork results are more illuminating than mine. It's so frustrating when they're like, "Your bloodwork is normal and perfect!" and they act like you should be happy about it, but it doesn't reflect how icky you're feeling and it's almost like it invalidates that you feel so crummy, you know? I feel awful, so why doesn't my bloodwork show that?

I guess I must look awful today too. A co-worker just checked in on me because she heard I wasn't doing well, and she said I look pretty pale. It was nice to have someone care and check in on me, though. Actually all my co-workers are pretty great. In my department it's basically me, another co-worker, the receptionist, and our boss (so 4 of us total). We're infamous for being the department of sick people. The receptionist is a heavy smoker who sometimes gets puking migraines, my boss has some heart issues, I of course have guts that are made out of sadness and pain (plus I have the lovely GERD and arthritis too), and my other co-worker has an injured knee and she's been limping around. Not one of us is healthy! But today I forced myself to go into work because I'm running out of sick days, and my co-worker with the injured knee, she was telling me things like, Don't worry about this project or that thing, I'll take care of all that, you just rest. I literally started crying in front of her because of how nice she was being to me (I tend to cry a lot in general when my guts are acting up, my emotions just go haywire when I'm not feeling well). It was really nice, I appreciated that a lot.

 

[Wildmtnhoney]

{{HUGS}}} Cat, I'm so sorry you got lightheaded from all of that, it sounds awful! I am, however, glad you have such a great work environment with wonderful coworkers!

 

[kellehbeans]

Ahh, so it's become thrombosed. That sucks. [emoji21] nope, understand the blood work feeling rubbish thing, completely relate.

Really nice to hear you have lovely colleagues though. So fresh and relieving to know there's people like that out there! [emoji5]️[emoji5]️[emoji5]️ hope you feel better very soon!!! [emoji5]️

 

[Wildmtnhoney]

OK, maybe random question, but here goes!

What exactly does my GP/her partner mean when they say, in negative manner, "if we keep looking we'll eventually find something" in regards to all the testing I've had done?

I mean, isn't that the POINT? They seem to be saying, and one of them tried to clarify, that they'll find "something" but it may not be related to anything. BUT, I still don't understand the negativity.

I was thinking about this because I was reading the notes from my last visit, and they basically same the same thing -- that the inflammation they recently found was just "something" that was bound to be found if they kept looking. To me, that sounds like they are dismissing it as a cause of pain, but I'd like outside opinions, please!

 

[Izzie]

@Wildmtnhoney Sounds like they have a bad attitude to me! You must have pain for a reason, and any findings should be a clue as to why that is, right? I'd call them up and ask them to clarify, if I were you.

Me, I'm feeling pretty good. Constipated and overthinking my dark/black stools (having undiagnosed bleeding is SO not good for my anxiety), but I don't FEEL all that horrible except for my regular sore throat from reflux.

I've decided not to bother rushing any of my appointments though. I'd rather have a proper, longer appointment and get some actual help, then just get sent home after barely anything with a "you're probably not dying, go home" basically

 

[meganwilson1991]

I went to see my doctor yesterday-my work are no as understanding as I discovered an email essentially bitching about my time off-this came from a manager so doesn't look good. Oh well I hate the job anyway.
My doctor is great, provided I get him (he's so busy) and doesn't treat me like a hypochondriac, he ordered me 3 tests yesterday so make sure my hormones and blood sugar etc can be monitored throughout the day...he's really good looking so discussing "is there any blood coming out your bottom" did make me blush

 

[kellehbeans]

OK, maybe random question, but here goes!

What exactly does my GP/her partner mean when they say, in negative manner, "if we keep looking we'll eventually find something" in regards to all the testing I've had done?

I mean, isn't that the POINT? They seem to be saying, and one of them tried to clarify, that they'll find "something" but it may not be related to anything. BUT, I still don't understand the negativity.

I was thinking about this because I was reading the notes from my last visit, and they basically same the same thing -- that the inflammation they recently found was just "something" that was bound to be found if they kept looking. To me, that sounds like they are dismissing it as a cause of pain, but I'd like outside opinions, please!

I wouldn't have taken that as a negative. Surely it means they are supporting you in the sense that, they won't stop until they find something because they know you're in pain? I wish my old GP would say that to me. My new one is similar to yours, wanting to find something, because they know something is *not* right.

 

[Wildmtnhoney]

Kelleh, it was their tone that was negative. They definitely meant it was a bad thing to keep testing (husband was there, he agrees). It's weird.

EDITED - one of them, along with this phrase, basically told me they would NOT be monitoring by blood work for spleen issues, because my spleen is fine. So there's that, too.

 

[kellehbeans]

Kelleh, it was their tone that was negative. They definitely meant it was a bad thing to keep testing (husband was there, he agrees). It's weird.

EDITED - one of them, along with this phrase, basically told me they would NOT be monitoring by blood work for spleen issues, because my spleen is fine. So there's that, too.

I'm really sorry as I have forgotten, but did you say it was shown to be enlarged? If so, get yourself to a new doctor and present to them the evidence for that and tell them that your blood work is coming back normal. Seeing is believing unfortunately, and if they can see that it is enlarged, then that is all the evidence you need. Blood work is never 100%.

I don't understand how keep testing is a negative thing still? Even if it was said in a negative way, or you thought it was, maybe they were just tired of not being able to give you a definite answer and possibly felt some kind of empathy toward you? Even if they find it negative, they have not given up on you and your path to being diagnosed - that is all pretty positive from an outsider! Sorry if I am barking up the wrong tree, but I'm trying to find the light in the situation, even if you can't. We all need some hope. Just see it this way - they're still testing instead of telling you to go away and tell you it's all in your head or you have IBS. :heart:

 

[gadgetninjette91]

Kelleh, did they not give you anything for the nausea? You might want to ask about something like Zofran (ondansetron is the generic name). It's by prescription only, but it's a very effective anti-nausea med with low risk of side effects (the only side effect I get from it is mild constipation sometimes, but since I'm prone to diarrhea anyway, that's not actually so bad). With that severity of nausea and vomiting, they should really give you something besides just Zantac as I doubt that's going to do anything.

As for the pain while walking or running - high-impact exercise does awful things to me, too. Both my joints and my guts just hate running. Can you ride a bike or do some other form of low-impact cardio instead? That should be much easier on you. And, I know this is frustrating as I'm a fitness buff myself, but maybe take a few days off from the gym when you're feeling this yucky. Let your body rest and heal, don't push it too much when it's already dealing with so much. I know it's hard to force yourself to rest when you want to be active, but sometimes rest is best, particularly when you're dealing with a flare.

First let me start off by apologizing for my prolonged absence from the forums. Hope everyone is doing well. In terms of what I do for exercise, I mostly go for long walks, sometimes with hills to keep my cardio up to speed, but anything too high-impact exhausts me. But I absolutely need to move in order to not feel stiff. I know what my limits are and I exercise them accordingly. I had some x-rays taken of my spine which came back just fine, my GP wants me to do physical therapy but I don't know how necessary it really is, if it's just going to be another medical expense that I don't need right now.

As for how I'm doing, my upper scope was clear sans a small patch of stomach inflammation that biopsy confirmed was from stomach acid. That said, I usually go for about two weeks feeling decently OK, sometimes I'll put on a couple pounds which is good, then I'll have a couple days where I'm sick (diarrhea, severe pain, no appetite, weight goes back down) and then I'll go another couple of weeks just fine. But lately I've been getting that lower right quadrant pain again, it's sort of a burning type pain almost, but I don't want to go rushing to the doctor for every little thing, especially a doctor who said the only other med he'd try me on right now is an antidepressant (to which I vehemently said NO NO NO). I just feel like there has to be more that they can do for me that's just not being done. I'm not sure how my medication change is affecting things, and I'm a bit concerned because I've read conflicting information about where Apriso releases in the GI tract (I've read that it releases in the small intestine and I've read that it only releases in the colon, I know it's not helping me if it's not releasing up higher). But my new insurance absolutely will not cover Pentasa so I'm stuck with either Apriso or Lialda (which I know the latter will not help).

Stress is the absolute worst. I'm trying to juggle recent enrollment in online school with keeping my health in check, that and trying to help several people I care about, I'm concerned that I'm taking on too much at once and it's making me sick. I don't want to screw up school and I don't want to screw up helping people, but it seems that all of the stress is screwing up my health. I'm ambitious but I might need to just slooooow down a bit. Meeting with an advisor at the school tomorrow to discuss my limitations and barriers that come with my health issues.

I still have the consult scheduled at the university hospital for next month, I wonder if it would be a good idea to go and get another opinion because I have a very hard time believing that there's nothing more they can do for me. I know my diagnosis won't be retracted, it's all over my paperwork, that's the least of my concern right now. I just feel like there must be some way to feel 100% instead of just 75-85%. Like I'm not allowed complete relief or something. Still, I carry on, I wait, I suffer every couple of weeks. Learning to just live with it at this point.

 

[Wildmtnhoney]

Gadg - hiya! Sorry you have RLQ pain again, and stress. I don't know about those meds at all, but I hope things work out.

Kelleh - OH! No, see, this is the line of reasoning they have given me to STOP all testing! When the inflammation was found at the ED, they basically told me "See! This was bound to happen! Of course we found something if we kept looking, and this is exactly why you need to stop going to the ED and stop undergoing all these tests." Actually, it went further too...."you need to stop looking for answers, there aren't any. Sure we may find *something* if we keep testing, but that's not the point. The point is to help you live with the pain and find coping mechanisms" So they are sending me off to integrative medicine (where they do massage, along with chiropractic and acupuncture, etc -- not that I'm against any of those, I just don't think they're the answer to what ails me right now) and refusing to look into an enlarged spleen because they might "find something".

 

[Cat-a-Tonic]

..."you need to stop looking for answers, there aren't any. Sure we may find *something* if we keep testing, but that's not the point. The point is to help you live with the pain and find coping mechanisms"

Wow, I wonder if their heads would explode if you tell them that your "coping mechanism" is that you're going to continue testing in order to find and treat the actual cause of your legitimate illness. In all seriousness, I'd start looking for a new doctor because that attitude is terrible.

I'm doing somewhat better today - I have only had a teeny bit of blood come out of me today, hooray! They did an anuscope on me yesterday in urgent care and it feels like that really irritated things even more and angried up the hemmie. The steroid supps are going well though, I feel more like a human being today than I did yesterday and I even have a bit of an appetite today (did not at all yesterday).

 

[Izzie]

I'm so angry that so many of us have experienced these kinds of attitudes from doctors. It's just absurd and it shouldn't happen.

Trying to decide today if I'm going to sign up for full-time classes or just 50%. On one hand I want to stay busy so I'm not just sitting at home doing nothing feeling sorry for myself. On the other, stress is not a friend.

 

[kellehbeans]

@gadgetninjette91 - This may sound weird, but I've been thinking about you almost daily, wondering how you were getting on. I knew you had some other things going on with you, and I was just hoping you were OK. Nice to see you're back here to post.

I am very sorry to hear that is what you are going through. If you feel you need another opinion, possibly one that puts your mind at ease, then I think in your heart you know to do that already. Just sloooow down and work slowly towards your goals. You can do it. I believe in you!

@Wildmtnhoney - I either misread the previous posts, or I really am seeing things in a weird way! Yes, that sounds much more negative - but they said, if they do keep searching, they'll find something - which indicates there IS something wrong. If they kept searching and didn't find something, then surely you're healthy (I'm talking about years and years and years here), but if they're saying they WILL find something, is just saying they KNOW you're ill but can't be bothered to keep looking. So they KNOW something is up, just basically doing it because they have to, not because they want to. *sigh* Okay, that is pretty negative. Reading it in that light has made me quite mad.

Of course we need coping mechanisms (sounds more like they're giving you therapy for an addiction), but some of those are only entirely achievable by having particular medications to control the inflammation which could potentially go on and destroy parts of your insides.. ANGRY!!!

@Cat - Yaaaay! I wish I could say the same about the blood, but let's not go there! >.> What did they see with the anuscope? Those things are naasstttyyyyyy. It was dead uncomfortable, no matter how much they lubed it up!

 

[kellehbeans]

Help, help, help.

Got my blood test results back. Nothing out of the ordinary, or at least that's what they told me. Went to go collect my results and get them to print it off. Been comparing.

So, March, CRP was 0.2mg/L which is still the same from 2 days ago. Last time, I had a red marker on my WBC Lymphocytes. They were 1.28mg/L (normal is 1.30mg/L for my lab) and now 1.40mg/L, so not much of a difference really. This time, my RBC is 3.89mg/L (with 4.00mg/L being the norm), and from March it was 4.02mg/L, so it's gone down. A little.

ARGH. Nothing of any use. Actually have a note on my test sheet saying 'normal, means your symptoms are IBS not IBD'.

I want to cry.

 

[Cat-a-Tonic]

Kelleh, they saw the hemmie right away with the anuscope - they said it's right inside my anal sphincter, which would explain the pain. I was told it's "only" about the size of a marble which still sounds pretty big to me, particularly with where it's located! And it was weeping blood a bit on the anuscope but no longer gushing, so I guess that's good. And yeah, that was the 2nd time I've had an anuscope and they're never fun and very uncomfortable. I could feel it sort of scrape up against the hemmie as it went in and I was like, "Ow, ow, ow, ow."

As for your blood results, I don't have any advice for you but I have a lot of empathy because my bloodwork was normal ("perfect" was how they described it) as well. My inflammatory markers (CRP and ESR) are almost always normal as well. It's so frustrating when you are feeling so poorly and you know something is very wrong, but the tests just don't reflect that for whatever reason. On paper, I am the picture of health. But really I'm obviously not! So I feel for you, it's really frustrating. Just keep fighting. That's all you can do.

A thought for you - I'm not saying it's not IBD - but, it might be worthwhile to put off the IBD testing for a bit and rule out some other stuff. There are many other illnesses that can cause this type of symptoms (Addison's, Behcet's, Lupus, etc). Many can be tested for with bloodwork, so it's typically not super invasive. That's what I did for awhile and that's one of the reasons I was able to get my GI to treat me as though I do have IBD - we ruled out most everything else, and we've found that I respond well to IBD meds. In a nutshell, that's what comprises of my pseudo-tentative IBD "diagnosis". If you can at least rule out some other stuff, that's a big puzzle piece or at least it has been for me. I still don't have all the puzzle pieces, but ruling out other things that can cause IBD-like symptoms has been absolutely worthwhile for me. And there's of course always the chance that you actually do get a result when testing for something else - you never know and might end up lucking into a diagnosis when looking outside of the IBD sphere. Just my two cents!

 

[kellehbeans]

Kelleh, they saw the hemmie right away with the anuscope - they said it's right inside my anal sphincter, which would explain the pain. I was told it's "only" about the size of a marble which still sounds pretty big to me, particularly with where it's located! And it was weeping blood a bit on the anuscope but no longer gushing, so I guess that's good. And yeah, that was the 2nd time I've had an anuscope and they're never fun and very uncomfortable. I could feel it sort of scrape up against the hemmie as it went in and I was like, "Ow, ow, ow, ow."

As for your blood results, I don't have any advice for you but I have a lot of empathy because my bloodwork was normal ("perfect" was how they described it) as well. My inflammatory markers (CRP and ESR) are almost always normal as well. It's so frustrating when you are feeling so poorly and you know something is very wrong, but the tests just don't reflect that for whatever reason. On paper, I am the picture of health. But really I'm obviously not! So I feel for you, it's really frustrating. Just keep fighting. That's all you can do.

A thought for you - I'm not saying it's not IBD - but, it might be worthwhile to put off the IBD testing for a bit and rule out some other stuff. There are many other illnesses that can cause this type of symptoms (Addison's, Behcet's, Lupus, etc). Many can be tested for with bloodwork, so it's typically not super invasive. That's what I did for awhile and that's one of the reasons I was able to get my GI to treat me as though I do have IBD - we ruled out most everything else, and we've found that I respond well to IBD meds. In a nutshell, that's what comprises of my pseudo-tentative IBD "diagnosis". If you can at least rule out some other stuff, that's a big puzzle piece or at least it has been for me. I still don't have all the puzzle pieces, but ruling out other things that can cause IBD-like symptoms has been absolutely worthwhile for me. And there's of course always the chance that you actually do get a result when testing for something else - you never know and might end up lucking into a diagnosis when looking outside of the IBD sphere. Just my two cents!

That sounds really painful! At least you said ow instead of what I said!

I think what I have is classed as mildly anaemic, but there is no obvious reasons as to why I have a low RBC (I was due for my period, so that should be higher, not lower!). WBC is up a lot from last, but it's not enough for my doctor to really pick up on it. I think the GI will want to do them again, so they will see then if they have moved around again. I've had all the tests for liver/thyroid, coeliac's etc. so that's ruled out. I shall ask about the Lupus etc., and I think as for your trial of IBD meds, I don't think I'll ever be able to get that from my GP, and will probably have to do that through my GI their selves. I wasn't really specifically testing for the IBD myself, but doctor seemed to think so. We shall see. I'm starting to give up. My haemorrhoids are still super inflamed. I think I'll give it another week to see how they go and then call up my doctor to maybe get a higher dose of Pred.

SO, I am bleeding from somewhere OR something has gone horribly wrong, and does seem something is going on, just pinpointing where.

Sorry, that was really rambly. Feel a little all over the place at the moment. Maybe it all is in my head and maybe it is IBS. I don't know. I feel awful about it. At least the pain has subsided for today.

Thank you for support, it really is appreciated. Just want to burst and find something right now. Argh. Not to mention all the stuff I've eaten today that I'm not meant to.