Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Cat-a-Tonic said:
You might want to call the GP and let them know now that the iron pills are upsetting your stomach - that way, if you decide to go the infusion route, you could at least get the infusions scheduled (I'm not sure how long of a wait it is there for infusions - here it was only a week wait, not bad at all). I would wager a guess that with the holidays coming up so soon, they might not be scheduling infusions until after New Year's anyway. So might be best to get it scheduled now so that you could have infusions along with the rest of your appointments after the holidays. Just a thought.

Okay, so you've had several moves from city to city lately - do your parents live in yet another city? If so, I can see how that would be a logistical nightmare! You change cities every few months! :p And you just moved, too. My goodness! Are you going to see a doctor in the city where your parents live?
Click to expand...

Yeah I mean... I recently lived in one city, moved to another, and my parents live in yet another so yes, it's a lot. For the accident, I was at my parents' so went to the closest ER obviously. And my old GI is at one hospital, my old GP at another, and I've just chosen a new GPs office sooo yeah :p

Either way I called the GP this morning, and got to talk to him right away (?!). Such a nice guy. He's going to research other possibilities for the iron - infusions or shots - and will get back to me ASAP. I also complained a little about my old GI and he was like "but there are so many other things we could try besides ONE single PPI! so much we could try! but one thing at a time, I'll call you back when I've looked into the quickest option"

I like him ^^
 
CatLady, even if you think it's not IBD, you can still certainly hang out with us here (I will never kick anybody out of the Undiagnosed Club, regardless of whether they get diagnosed or don't have IBD or whatever - we're all welcome here). You made it sound like you were saying goodbye, and I hope that's not the case. We're still here to support you! :)

Hi Hawaiian, unfortunately I have no idea what those results mean. Probably best to ask your doctor. I hope you can get some answers! Keep us posted on what your doc says.

Izzie, sounds like a good doctor! I'm glad to hear it. As for iron shots vs iron infusions - I did a bunch of asking about that in the treatment section of the forum before I had my infusions. What I was told is, the shots tend to hurt pretty badly. The infusions, they take anywhere from 20 minutes to 3 hours depending on your hospital and the specific type of iron given in the infusion, but there's no pain and less risk of side effects (when the iron is put into your system more slowly, it seems to be easier on the body in general). So for me the infusions were the best option. Mine took 2 or 2.5 hours to administer, but there was no pain and the only side effect was that the first infusion affected my stomach a bit (some nausea, some d, but it was gone within 48 hours and with the following infusions I had hardly any symptoms). So for me the only real downside of the infusions was that they took awhile, but I brought a laptop and watched movies to pass the time and that was fine.

Here's my thread on iron injections vs. iron infusions if you're interested:
http://www.crohnsforum.com/showthread.php?t=74542
 
Hello. I have been reading here for a few days and thought I would post.

Been having problems since June this year. Got D (at least 8 times a day and sometimes also during the night), abdominal pain mainly low down on the right side, bloating, a lot of gas, tiredness. Seems to be worse every time I eat something, everything seems to upset it at the moment. Get these awful stabbing pains with the D. Not noticed any blood but BM's sometimes are almost black. Been to see GP and they have sent off a stool sample (which I am still waiting for 2 weeks later) to see what happens next. I am just generally scared at the moment. I am in a lot of discomfort and I don't know what is happening.
 
Hi GemmaH, welcome to the forum and the club. Sorry you had to join us but glad you found us. Black/dark stools can mean that there's bleeding higher up in the digestive tract, so that is definitely something to get checked out. What stool tests are they doing, if you don't mind me asking? And have they done any bloodwork or any other tests? Have you been referred to a GI as of yet?
 
Hi Cat
I had some blood work done about 6 months ago and that was all fine. Kinda just put it off up until now as I have a fear of the doctors but its got to the point now I cant ignore it any more. They are holding off on more blood tests and trying this first as I am an absolute nightmare with needles. I don't cope well with them at all! For my sample they are testing for inflammation markers or something like that. I'm relatively new in this process so don't know all the lingo yet! They are waiting for this test result and will then refer me to the hospital for a colonoscopy, whether negative or positive, but if the test is positive it means I can get an urgent referral. I'm in the UK and the NHS waiting lists are massive!
 
Gemma, ah, it's probably a fecal calprotectin test that they're doing on your stool then. That's a marker of inflammation in the digestive tract, so it's a bit more specific than the blood tests that look at inflammation (CRP and ESR, which are both more general measurements of inflammation anywhere in the body). Don't worry about not knowing the lingo! You'll learn as you go, I think we've all pretty much done that. :)

Unfortunately, you might have to come to terms with both your fear of doctors and of needles. Having a chronic illness means that there will probably be a lot of doctors and needles in your future. For me, I like to buy myself a little treat whenever I have to go to the doctor or hospital or have a test done. At first, I would buy myself a little bottle of nail polish. It's pretty and sparkly and not expensive, makes me happy, and I can paint my nails even when I'm feeling really ill. I knew that I could get through whatever appointment or test, as long as I could go and buy nail polish afterwards. I've had to stop buying nail polish though because I ended up with way too much of it! :p The first year I was sick, I ended up going to the doctor so often and having so many tests done, that I wound up with about 2 large shoeboxes full of nail polish, ha ha. So now I buy myself a variety of other treats but I don't actually need any more nail polish in my life. :p Anyway, my point is, if you can get yourself a little treat after doing something unpleasant like going to the doctor or having a test done that involves needles, it really does make things less awful and will hopefully help you conquer your fears. It doesn't have to be big or expensive, just something that makes you happy and rewards you for getting through something unpleasant like a doctor visit or medical test. A little treat can make a big difference.
 
Thanks Cat. That sounds like a good idea. The fear of doctors is more a fear that they will make me have a needle or blood test if I go - so really its all about the needles. At least my Dr is caring enough to do this test first in the hope to minimise my anxiety! I've heard with the colonoscopy they give you a sedative via a cannula in your hand. This is my idea of hell. A needle, left in there! Can they put it in my foot or something instead? I have a weird thing about the backs of my hands and wouldn't cope well with a cannula stuck in there! I know I'm going to have to go through it to get sorted though so will just have to bear it I suppose. They will have to sedate me to give me the sedation! HA! Anyway I am just truly fed up with all this now - they have told me this afternoon my result will be back by Friday morning at the latest (but they told me that last week too). :yfrown:
 
Gemma, they probably could put the IV in your foot rather than your hand. You'd have to ask the nurse to be sure. It might depend on the nurse. For what it's worth, I have an irrational phobia although mine doesn't involve needles. I have a phobia of dead, stuffed, taxidermied animals (don't laugh). Seeing a dead mounted animal with its glass eyes staring at me... brrr! I find that to be just completely horrible and it gives me the chills and a pit in my stomach just thinking of it. I don't know why I have such a phobia, and I know it is slightly ridiculous to be so averse to dead things that are made to look alive, but that's just me. But, I also find that exposure to my phobia is indeed the best treatment for it. It sounds awful, but the more I expose myself to my phobia, the easier it is to deal with. Nowadays, I can go into a hunting supply store or a natural history museum or some other place that has dead stuffed animals all around, and I still get a bit of a chill and an "I want to run away from this right now" feeling, but it's no longer a panic attack where I cry and curl up on the floor or literally do run away. It's not wonderful but it's no longer horrible and I can deal with it. I can be around the subject of my phobia and it doesn't have control over me any more.

And from everything I've read, exposure therapy is indeed the best way to deal with a phobia. So, I realize it sounds incredibly horrible to you, but maybe you should just let them do the IV in the back of your hand. The colonoscopy is a relatively short procedure and once the sedative kicks in (which should be quickly) then things should become much easier too - so the very uncomfortable time where you're dealing with the needle in your hand, it won't last too long. It really might be best for you to just force yourself to deal with the extreme discomfort/panic/whatever else you feel when the needle is in the back of your hand for that short time. That will allow you to be more okay with it the next time, and so on, because you'll know you've survived it once even though it sucked. And I know it sucks - having to face those dead animals with the glass eyes, I know it's never going to be easy, but it definitely gets easier with time and exposure to them. But, my long rambly point is that phobias can be overcome. You just have to be strong and face it (which is the hardest part, I know). I hope that helps. I have faith in you, you can get through this!
 
Thanks Cat.

The odd thing with me is it seems to make me worse! I have had quite a lot of blood tests over the last few years (had various issues which I wont go into) and each time I go I get more and more and more hysterical. I actually cried out loud like a child last time I went. It seems the more I have them done, the more worried I get. I actually cant even sleep the night before. Saying that you might be right that if I have the cannula then any blood tests afterwards will seem like a walk in the park. I just don't know if I can do with it there in my hand where I can see it all the time. Plus I have this ridiculous fear of a part of it breaking off in my vein, which I know if stupid, but I cant help it.

Anyway, no matter what, I need to get this sorted now as I want my life back. Im so sick of being sick :-:):)(
 
Yes, that's the important thing, to get a diagnosis so that you can get on some treatment and feel better and get your life back. Unfortunately it's sometimes a rather difficult journey to get to that point! I hope your journey isn't too difficult and that the colonoscopy finds something worthwhile.

I think if you do sit there with the IV in your hand, yes it will be extremely difficult for you, but I do think that it will make future blood tests and IVs easier to deal with. Be brave, you can do it. And I don't think it's silly that you have the fear of a vein breaking off. With my phobia, I have an irrational fear that the dead animals will somehow "get me" (and I don't even know exactly what that means). Like they're going to come to life and attack me, I guess? I know it's ridiculous but that's what phobias do, they give you irrational fears that make no sense but you can't make them go away with logic. You can only face them, that's the only way that I've found to actually lessen the panic and horribleness.

Another girl on the forum was saying that she wears a lot of t-shirts with superhero logos on them. It makes her feel more strong and powerful and brave, like a superhero. Perhaps you could do something like that - at the colonoscopy itself, they will likely make you change into a hospital gown, so a shirt probably won't work. But perhaps superhero socks, or a bracelet? Something that you can look at while dealing with the IV, something to remind you that you are strong and can get through this.
 
Hello everyone! So glad to see there is an "Undiagnosed Club" so that I don't have to feel like I'm bothering people! I just joined today in hopes to find some people who may be in the same boat at me, and maybe some more experienced people who may have some insight. This might be long...

My whole life I've issues with constipation. Always. I've always had knee aches too. Since I was a tiny kid. I have also ALWAYS pretty much been told I'm anemic. . Back when I was 16, after a HUGE stressful period in my life, I started having health issues. I was diagnosed with Mitral Valve Prolapse. That was my first issue. I had issues with diarrhea when I was younger too. We'd go out to eat and within an hour I was cramping badly, felt faint and was running to the bathroom. The problems kept going, I was told first it was anxiety, and put on Paxil, then it was IBS, which later turned out to be Celiac Disease. It's been 4 years since I was diagnosed.

After the birth of my daughter in 2014, I was diagnosed with Underactive thyroid, and Hashimoto's thyroiditis. I'm being treated for that currently.

Now on to the "issue"

about two months ago I started getting this really bad pain in my front lower left quadrant. It felt like my ovary. It was very painful, and scary. A pelvic exam, and vaginal ultrasound showed that nothing was wrong. My Gyno asked a few questions(one being how often I had a BM. My answer? once a week) and referred me to a GI.

The GI wanted to do a CT scan with contrast which I had on Friday 12/11. It came back clear.

My symptoms are all over the place: PAIN: mostly in the front area low down on the left side, but it radiates to my back under my ribcage. Sometimes the pain is in the front of my body under my ribcage. It can be quite intense. Bloating immediately after eating, nauseous for no reason (mostly after eating), hip pain (I cannot lie on my left side at night anymore.) Constantly constipated, and rarely I'll get the opposite and go 4-5x in a day, and then it stops and goes back to C. Abdominal cramping that can be quite intense as well (like feeling like I'm going to pass out), mucusy stool, skinny stool, strange color stool (not all the time), the list goes on....

I'm having a colonoscopy/Upper Endoscopy in January, but until then I was wondering if anyone had any insight?? Can the colonoscopy find something that could cause this that can't be seen on a CT? I just feel like they are going to find nothing and i'll be in this "undiagnosed" box forever.

I'm gluten free and have been for 4 years.

Thanks everyone!!!
 
Hi PaintedElephant, welcome to the forum. To answer your question, yes, colonoscopy and upper endoscopy can definitely see things that CT cannot. My GI explained CT scans to me like this - he said that CT gets an okay "overall" picture of the abdomen, but it cannot see fine detail (so sometimes things can be missed) and it tends to see hard tissue like bones better than it sees soft tissue like intestines. In other words, it's okay but not great and can definitely miss things.

A colonoscopy will be able to visualize the anus, rectum, the entirety of the colon, and the very end of the small intestine (terminal ileum) in good detail, and they can take biopsies. In fact, it's important that you make sure they do take a lot of biopsies, even if they don't see anything out of the ordinary. Some types of IBD, such as microscopic colitis, can only be found on biopsy - visually things will look completely fine and normal, but on biopsy it tells a different story. So do make sure to ask your doctor to take multiple biopsies. The upper endoscopy is very similar, it sees the esophagus, stomach, and the very beginning of the small intestine, and can also take biopsies.

I'm glad you're getting checked out, what you've described sounds like more than IBS to me. Joint pains in particular are common with IBD (Crohn's/colitis) - have you been checked for arthritis? I have arthritis in both hips thanks to my presumed IBD, but we caught it early and physical therapy helped a lot. You also mentioned skinny stools, which can be an indicator of inflammation or narrowing in the digestive tract - that would also be indicative of IBD.

Oh, and if the scopes find nothing, please try not to worry - there are other tests they can do. Sometimes Crohn's likes to hide out in the small intestine where the scopes can't reach, but they could do something like a pill cam or MRE (MRI with contrast of the intestines - not invasive and gets a much better picture than CT scan does) to look at your small intestine. There are also other autoimmune illnesses that can cause IBD-like symptoms, so if you find yourself running into brick walls, look into illness like Lupus, Behcet's, and Addison's and see if those sound like your symptoms. Most of those can be checked for with blood tests, so it might be worth doing some testing to confirm or rule a few other things out. Good luck! And again, welcome. :) Keep us posted on how the scopes go in January, I really hope you get a worthwhile result.
 
Thank you SO much Cat for your reply!

I was tested for RA, Lupus, and Lyme's several years ago, but everything came back normal. I am pretty sure that I have Reynaud's too. My hands turn white as a sheet of paper and my nail beds go blue. My joints ache constantly. I thought it was celiac related, but it persists after being GF for 4 years. My hips pop pretty much every time I stand up. It's a horrible sound!

Thank you for the information about the new tests I'm getting. I'm slightly worried that nothing will show up, but I will make sure they take biopsies as well!
I found out on Friday that I am allergic to the contrast, so I don't think I'm allowed to do that ever again! They said if it's 100% necessary, I have to take steroids for a week before and 2 hours before the scan, but I'd really like to avoid it if possible.

All blood work has been fine, according to my doctor. The last time I had my iron done with my Endocrinologist, my iron levels were about 30, which is CRAZY. My ferritin levels were about 10, which is terrible too. No matter how much iron I take, it never seems to go into a normal area. Not sure why this hasn't been explored more. My vitamin D levels were bad too. I had to take 50,000 units a week for awhile.

Sometimes my BM's have a very metallic smell, and I wonder if they have ,blood in them, but I don't SEE any. I don't know how else to know if you are bleeding or not?

I've had several things lately where i'll think I have a UTI and be tested and find out there is not UTI. It's so strange. It always starts with horrible lower back pain!
 
PaintedElephant, my iron levels were actually really similar up until recently - in October, my iron was also at 30 and my ferritin was only 4. For me, I do regularly pass bright red blood in my stool, and whenever my doctors look into it, it's always due to internal hemorrhoids. You'd think that hemmies would be relatively benign, but the bleeding from the hemmies causes me to lose iron and I just can't seem to replenish it. And with my iron and ferritin that low, my GI was pretty concerned and he said we have to do something ASAP to get my levels up. So, last month I had a series of 3 iron infusions, and that has made me feel a lot better. I was so exhausted all the time before, and now I'm not. I went from feeling like a zombie to feeling pretty much normal energy-wise, it's been fantastic. Anyway, if your iron is that low, you might also want to ask about iron infusions, particularly if the iron pills aren't doing anything for you (with digestive issues, you may just not be absorbing much of the oral iron tablets, but the infusions go right into your bloodstream and should work a lot better). The infusions made a vast difference for me although I'm still trying to tackle the hemmie situation so that I don't drop so low again.

If you've noticed a metallic smell and your iron is that low, I think it's a pretty reasonable assumption that you might be experiencing some blood in your stools. Treating the iron deficiency with infusions will get you out of the danger zone, but you still need to figure out the reason why your iron and ferritin are low, what's causing the presumed bleeding. You didn't mention ever seeing noticeable blood in your stool so I presume you haven't seen anything obvious like bright red blood? Do you ever have dark/black stools? That can indicate bleeding higher up in the GI tract (like in the small intestine as opposed to the large intestine). Sometimes blood just isn't visible in stool, but can still be detected with a fecal occult blood test. If you haven't had one done, it's definitely something to look into - it's a simple stool test and I think you can even get a kit at the pharmacy without having to ask your doctor to do the test (your doctor can do the test as well though of course). And hopefully the colonoscopy will be able to determine the source of the bleeding, presuming you are indeed bleeding.

As for the lower back pain that isn't a UTI - there are some bowel and bladder issues that can be connected. You've mentioned horrendous chronic constipation, and if your colon or rectum is frequently full of hard stool it can push on and irritate the bladder. For me, I have had bladder issues as well and I do suspect that mine are also related. Back in high school/college is when I started experiencing anal fissures (like a tear or cut in the anus that bleeds, can be caused by passing a hard/constipated stool) and in college I also started having recurrent UTIs. So I do suspect that for me the two are related, but I have no evidence. I hope you're able to get more answers than I've gotten when it comes to the UTI-like issues.
 
Cat-a-Tonic said:
PaintedElephant, my iron levels were actually really similar up until recently - in October, my iron was also at 30 and my ferritin was only 4. For me, I do regularly pass bright red blood in my stool, and whenever my doctors look into it, it's always due to internal hemorrhoids. You'd think that hemmies would be relatively benign, but the bleeding from the hemmies causes me to lose iron and I just can't seem to replenish it. And with my iron and ferritin that low, my GI was pretty concerned and he said we have to do something ASAP to get my levels up. So, last month I had a series of 3 iron infusions, and that has made me feel a lot better. I was so exhausted all the time before, and now I'm not. I went from feeling like a zombie to feeling pretty much normal energy-wise, it's been fantastic. Anyway, if your iron is that low, you might also want to ask about iron infusions, particularly if the iron pills aren't doing anything for you (with digestive issues, you may just not be absorbing much of the oral iron tablets, but the infusions go right into your bloodstream and should work a lot better). The infusions made a vast difference for me although I'm still trying to tackle the hemmie situation so that I don't drop so low again.

If you've noticed a metallic smell and your iron is that low, I think it's a pretty reasonable assumption that you might be experiencing some blood in your stools. Treating the iron deficiency with infusions will get you out of the danger zone, but you still need to figure out the reason why your iron and ferritin are low, what's causing the presumed bleeding. You didn't mention ever seeing noticeable blood in your stool so I presume you haven't seen anything obvious like bright red blood? Do you ever have dark/black stools? That can indicate bleeding higher up in the GI tract (like in the small intestine as opposed to the large intestine). Sometimes blood just isn't visible in stool, but can still be detected with a fecal occult blood test. If you haven't had one done, it's definitely something to look into - it's a simple stool test and I think you can even get a kit at the pharmacy without having to ask your doctor to do the test (your doctor can do the test as well though of course). And hopefully the colonoscopy will be able to determine the source of the bleeding, presuming you are indeed bleeding.

As for the lower back pain that isn't a UTI - there are some bowel and bladder issues that can be connected. You've mentioned horrendous chronic constipation, and if your colon or rectum is frequently full of hard stool it can push on and irritate the bladder. For me, I have had bladder issues as well and I do suspect that mine are also related. Back in high school/college is when I started experiencing anal fissures (like a tear or cut in the anus that bleeds, can be caused by passing a hard/constipated stool) and in college I also started having recurrent UTIs. So I do suspect that for me the two are related, but I have no evidence. I hope you're able to get more answers than I've gotten when it comes to the UTI-like issues.
Click to expand...

Thank you again!!! I will need to ask about the iron shots. Honeslty, I'm not sure why it wasn't done to begin with as my Endo thought it was really low. I've only found ONE kind of iron I can take that doesn't cause MORE constipation issues and it's $16 for 30 pills, so this gets quite expensive from month to month. I often run out, and then don't refill right away and then I get really behind. I lose a LOT of hair too. I was told that was because of my ferritin being really low. Either way, I'm going to ask about it. I was trying to get my iron pill in me EVERY day for a month before having my iron blood draw done again (for my Endo, not GI) but I fail miserably at taking the stupid pill every day.

I actually have had a few incidents with blood on the TP but it was such a small amount that I never really thought it was much of worry, I guess it probably is, huh? and yes, I have dark stools. A good bit. I read somewhere that someone let their stool sit in the toilet overnight and the blood seeped out. Gross, but I wonder if it would work? Maybe I should just ask for a fecal test? LOL.

You might be right about the UTI feeling. I've been told before by my Gyno that he could FEEL my full bowels during a pelvic exam. I am always backed up. So that very well could be it!

Awhile back, I suspected endometriosis, but I was told the only way to know if surgery. I guess if everything turns out right with this, I may need to go that route. I cannot have a BM when I am on my period. It is so so painful that I have to wait until my period is over. (sorry if TMI) but it keeps getting shorter and shorter, so that is bothersome too. Gyno doesn't seem to think so however.
 
Also, the GI gave me Bentyl... can someone explain what this is for? Should I take this when I'm in pain and see if it works? Honestly, after having an allergic reaction to the contrast dye in my CT, I'm terrified to take something new...
 
PaintedElephant, small bits of blood on the TP are usually not too worrisome. If it was just that by itself it'd be nothing to worry about, but you're either losing blood or you're having malabsorption issues (or both) to drop your iron that low. A teeny bit here and there on the TP isn't going to drop you down to 30 by itself, there's likely something else going on besides what you're seeing on the TP. The dark stools, I'd be much more worried about that. Although - dark stools can be caused by certain other things, including iron supplements. So you might want to make note of when you're seeing the dark stools, and if they coincide with when you're taking the iron pills. If they're still occurring when you've run out of the pills and haven't refilled them for awhile, then the dark stools are probably due to gastrointestinal bleeding and that is more worrisome than bits of blood on the TP. (If you ever take Pepto Bismol, that can also turn stools dark/black, as can certain foods like spinach and blueberries.)

Yes, endometriosis can only be definitively diagnosed via surgery - but, my understanding is that they can do it via laparascopy, so it's not super invasive. The recovery time is pretty quick from what I've read, because there are just a few holes rather than a big wound to heal. I haven't had that surgery so I can't say for certain, but there have been a handful of ladies on the forum who have had it and I don't recall anyone saying it was horrendous. I think it certainly would be worth some consideration if you suspect endos.

Oh, and there's no such thing as TMI on the forum. We all go through "gross" symptoms that wouldn't be appropriate to talk about in most other situations, but on here everything is okay to talk about. :)
 
Bentyl is an IBS medication, it's an anti-spasmodic. If you're experiencing a lot of abdominal cramping then it might be helpful, but that's about it. Honestly, I've tried it and it does basically nothing for me. If I were in your shoes, I'd do some reading up on Bentyl to make sure that it won't make the constipation worse. A lot of IBS meds tend to slow or "calm" the bowel (my GI likes to use the word "calm" when it comes to IBS meds but I haven't experienced any of this magic calming yet, ha ha). So it might potentially make your constipation worse, therefore I'd recommend that you do some reading about it first before trying it.
 
Cat-a-Tonic I am admiring your dedication to this thread! Do you ever sleep?!

Sorry I have been absent for a while. Crazy times.
Welcome to all the newbies on the thread. Sorry you are here but please join the party with your new friends.

Izzie please stay safe! What a shock.

Good news - I have a job, starting in January. I havent worked for 4 years because I have been so ill, so I hope I can adjust to the new situation quickly.

Bad news (and good news?) - the colorectal surgeon thinks I have a fistula, he said even though I had an MRI it wouldnt show up if it is not inflamed. Waiting list was 14 months for the op!! If I'm luckly it will be operated before the summer. But if it is a fistula then it would confirm a diagnosis of Crohns.

And now I'm off to bed. The children both have high fevers so its going to be a tough night.....
 
Thanks, Cat. I guess I'll stick around. People here understand the complete frustration of not getting answers to why your body is acting weird.

People here will get this: It drives me a little crazy how my GI always acts as though normal tests are good news. She even writes "good news!" (with an exclamation point) whenever her office sends me test results with no abnormalities. To me, the fact that I can't have normal bowel movements without super-strong laxatives and no one knows why is not good news. Sigh.

I asked her why she thought I had this problem yesterday when I was still kind of out of it and she said "slow colon" something. Even IBS seems more defined as a diagnosis, sheesh.

buttER, that's crazy that you have to wait 14 months for a fistula operation. If you don't mind, what tests have you undergone? As you've seen, I thought I might have a fistula, but the barium x-ray came back clear.
 
buttER, congrats on the job!! I hope everything goes really well with you starting to work again. When is your first day? And good luck with the fistula surgery - wow, that's a long waiting list though! Hopefully you can have the surgery sooner than 14 months!

CatLady, I'm glad you're sticking around. :) Yeah, my GI does that as well - he acts like normal results are a good thing. Maybe on some level they are, but it's extremely frustrating that a given test result should logically be showing why I'm feeling a certain way or having particular symptoms, but instead the results are useless to me and not providing any reason as to why I'm sick, and I'm back to square one. And then you start to question your own sanity - am I just crazy? Are these symptoms just in my head? I know they're not, I know my illness is real, but it is really frustrating when the test results don't validate your experience.

How's everybody feeling today? I've got a migraine, bleh. Woke up with pain just in the right side of my head and some sensitivity to light, and I think to sound as well - my hearing feels messed up in that ear, almost like the ear is clogged but it isn't. I'm also a bit nauseous. The left side of my head feels fine - no pain, normal hearing on that side. Yuck. I used to have these migraines pretty regularly, but I haven't had one since I started the iron infusions at the beginning of last month. So it's been like 6 weeks since my last migraine! I think that's a new record for me. :p Not sure why I have this migraine today, but I'm not enjoying it. I had been hoping that the iron infusions had more or less cured me of having migraines, but apparently not. I have a holiday luncheon today at work and I'm not quite sure how I'm going to get through it. Everyone's going to be talking which will surely not feel nice to my head, and with the nausea I'm not sure how much or even if I'll be able to eat. Bleh, I just want to curl up in a dark room and sleep but I can't.
 
Whine!! >>> my youngest son has a tummy bug (vomiting and D) and now I've got watery D and I don't know if it's just "me" or if I've caught his bug. I hate this.
 
I'm just hanging about waiting for my test results. Have been told by the latest tomorrow morning. Had a really bad night, wherever I laid it pressed on my lower abdomen and really hurt (I cant sleep on my back). Still going to the loo a lot - 5 times so far today - and not even really eaten much as it makes me run to the loo! Feel very thirsty. Got discomfort again in the lower right side and occasional stabbing pains. Urgh, sick of this now! Not sure how I am going to enjoy Christmas with all this going on, feel like my insides are totally messed up! :yfrown:
 
Aw, Wildmtn, that sucks. I hate to say it but those tummy viruses are highly contagious so it might be that you've caught it. I hope you haven't! I hope it's just a fluke. Either way, feel better soon!

Gemma, stay hydrated. Having a lot of diarrhea can make you really dehydrated pretty easily, so drink lots of water if you're able to. If you aren't able to drink water and you get too dehydrated, worst case scenario is that you'd have to go in and get IV fluids, and I'm sure you're not wanting to do that! So drink, drink, drink as much as you can. As for enjoying xmas - hopefully you can have a low-key, relaxing xmas. Keep your celebration to involving just a few people if you can, and put more emphasis on things like having conversations and watching movies, rather than the emphasis being on things like food.

Speaking of food, bleurgh. I've been nauseous all day from this migraine. There was a holiday luncheon at work today and I managed to avoid it, but I realized that I probably should eat something. So I stupidly had some salad. It was delicious, but I'm pretty sure I'm going to pay for it later. I also had some pie and I feel rather yucky now. My head is still throbbing and my stomach is unsure of what to do with this food. I don't think all of this is going to end very well for me.
 
CatLady42 said:
buttER, that's crazy that you have to wait 14 months for a fistula operation. If you don't mind, what tests have you undergone? As you've seen, I thought I might have a fistula, but the barium x-ray came back clear.
Click to expand...

Hi CatLady42, I have had a perianal lump for a few years now. It does not bother me much except now it is big enough to get in the way of general movement, BMs etc and sometimes it is itchy. It was put down to being a cyst. But this year a GI wrote down fistula with a question mark. I saw a different GI who ordered a pelvic MRI. The MRI showed rectal inflammation but no fistula showed up. But I want the lump removed so I went to see a colorectal surgeon. He says he thinks it is a fistula because he can feel a strand of something running down below the skin. He said in his experience it would not show up in an MRI unless it was more than a bit inflamed. He will only know for sure when he opens it up, it still could be a trapped gland of some sort.
Perhaps the most important bit is that he says the fistula is much easier to treat when it is not inflamed, so lets hope it stays that way. He can then just close the hole on the inside and wait for the rest to heal. Unfortunately most people probably only realise they have a fistula or get treated when they do get inflammation or an abscess, but which time the treatment options are limited (seton).
Sorry I don't know about the barium xray for showing up fistulas. But I hope this information helps a bit.

Cat-a-Tonic, don't you have any go-to snacks in your bag for the days you are feeling bad but do need some food? When you said you had salad and pie I was quite surprised. I always have crackers and a special sort of chocolate bar in my bag that are high calorie but easy on the stomach. Anyway, I hope your migraine clears up soon and your stomach works out which way round it should be.

Wildmtn my 2 children have had 40 degree fevers for the last 2 days and my eldest vommed on me during the night. I am just waiting to catch whatever they have.......I hate it, I am a bit of a hypochondriac. At least they have the decency to both be ill at the same time so that whatever it is leaves the household quickly (I hope). I hope you and the rest of the family stay immune and your little one picks up soon. Its not nice for anyone. I always assumed I was catching every stomach bug going until since I started taking Asacol I have noticed that it probably was just due to some kind of IBD.
 
buttER, I do keep a lot of snacks on hand at work, but I have a hard time with temptation. I could have had some of my boring rice cakes from my desk drawer, but I saw salad and pie and that sounded really good. I didn't have much appetite because the migraine gave me some nausea, so I went for what sounded good. Which was not rice cakes. :p Fortunately I didn't seem to pay for it too badly! I've had a few gurgles and cramps tonight but no d.

But, now I'm slightly paranoid that I'm joining you guys who may or may not have tummy bugs. My boss told me that she's had a lot of abdominal cramping and IBD-like symptoms lately, and now she thinks it's a bug. She said someone else at work apparently had something similar lately, a cramp-heavy but not vomity tummy bug. Well, I had one really bad cramp at my desk in the afternoon at work, and another bad one on the toilet a little while ago. So now I'm wondering if I might have the supposed cramp bug as well? Or maybe it's just my usual stuff, mixed with the migraine and the salad - that all together surely could cause cramping. So I don't know! I'm just trying not to worry too much about it. I know that stress will make it worse regardless of what it is, so I'm just going to take it easy and try not to think about the possibility of a tummy bug.
 
Gemma, since it's just new as of today, it's really hard to say. It could just be that you slept funny, or tweaked your back somehow (like if you twisted wrong or lifted something heavy). If the pain sticks around or gets worse or anything like that, definitely do get it checked out.

As for me, no cramping so far today so I think it was just from eating salad yesterday and not from a tummy bug. Phew! My migraine is still hanging around but much less painful than it was yesterday. Now I just need to survive the next week - the holidays are killing me. I haven't wrapped any gifts yet and I still need to make one gift (a photo book for my grandparents) and I also have to make food for the holidays and clean my house, and just argh! :p Can I just fast-forward and skip right to New Year's? So stressed right now!
 
I'm pushing through with half my prescribed iron dose until after the holidays when I can get infusions scheduled. Can't quit them entirely because I really am feeling the anemia, but the full dose makes my reflux go completely crazy. It's still pretty crazy now, but it was totally unbearable last week, so.

Trying my best to push through the holiday season, holidays are very stressful when it comes to food, people expect you to eat certain things and drink and I just don't want to/can't.
 
Hey everyone,

I haven't written in quite a while, but I've been reading/skimming everyone's posts when I can. Just reading about other people's issues makes me feel better. I mean, I hate that you guys are going through this too, but it's nice to know I'm not alone.

Cat-a-Tonic, my husband and I love the squatty potty!! We have one in each of our bathrooms. They definitely make it easier to go.

Someone mentioned endometriosis, and I've also wondered if this is my problem. My husband actually suggested it to me. Along with my stomach issues I also have horrible periods even though I'm on birth control. I'm seeing a new gynecologist in January so maybe he'll have a suggestion. The one I've been seeing for the past few years never believes me about anything. I told her that sex is really painful, she told me I just need to relax and use more lube. Tried it. Nope. I told her about my stomach problems, she told me I'm actually just depressed and it's easier to say "my stomach hurts" than to say "I'm sad." 😑 Uh what?! No. I'm perfectly fine admitting when I'm sad, and my stomach issues make me sad.

Anyway, I hope everyone is doing well (or as well as possible in our situations).
 
Wow, akgirl, that doctor sounds like a tool. Easier to say that your stomach hurts than to say you're sad? What the heck? That sounds like some kind of child psychology bs, tbh.

Does anyone know if severe-ish anemia can affect your memory? I just feel like my short term memory has gone to shit this year. My lack of a consistent sleep schedule probably doesn't help either...
 
It's easier to say your stomach hurts than it is to say I'm sad? That's the craziest thing I've ever heard.

Izzie, I can relate with the memory issues at the moment! I feel like as soon as I try to jam something into my brain it just falls straight back out again. No idea if anemia can effect your memory though.

As for me, I went to the doctors a few weeks ago. She was really nice and said wanted to be sure we'd checked for everything it could possibly just settling with a diagnosis of IBS. Although she did prescribe me some mebeverine (Colofac) just to see if that would help at all. It really hasn't. I gave it a good try but it seemed to make the pain worse! And I started getting bleeding with my BMs last week so I've decided the best thing to do is stop taking it.

Hope everyone is alright at the moment
 
So my calprotecin test came back with an elevated reading so I have seen my GP today and she is now making an urgent referral to the GI and I should get an appointment through within the next 2 weeks. They are also referring me as "straight to test" which means I will have my colonoscopy and then see the consultant afterwards. So seems like they are moving me along quite speedily now. Hopefully I will get a diagnosis soon so I can get sorted. In the meantime GP has given me buscopan to see if it eases the cramping a little bit. Must admit I am a little worried about having the colonoscopy but if it means I can get sorted then I shall suffer it gladly!
 
Akgirl, they tested my stool for parasites (not sure which ones) when I first got sick back in late 2009. It came back negative for any parasites. I think they just wanted to rule that out, I think parasites are more of a tropical or third world issue? None of my doctors ever mentioned parasites to me as being a likely cause of my issues, and after the stool tests it has never been mentioned to me again.

And ugh, that does sound like an awful doctor. I once saw a doctor who did something similar. He walked into the exam room, and without even saying hello or actually asking me how I'm doing, he immediately started by saying, "You have IBS, and you look depressed. Would you like some Zoloft?" Uh, what?! That doctor was so horrible!

Izzie, I don't know for certain, but when my iron was very low and I was exhausted all the time, my memory was horrible as well. It's not stellar now but it's definitely better than it was. I just figured it was another symptom of the low iron or maybe a symptom of the exhaustion itself, but I don't know for certain. So yes, for me, my memory was apparently affected by having low iron.

Gemma, it's good that they're at least doing things quickly now and it sounds like they're taking you seriously, so that's good. Good luck and keep us posted! Out of curiosity, what was your calprotectin reading? Like, specifically what was the number, if you remember it?

As for me, I'm pretty bleh today. It's raining and I haven't properly stretched or exercised my hips in a few days, so I'm having a fair bit of arthritis pain today. Going to do some yoga this afternoon, hopefully that will help. I've had a stressful time lately - in addition to holiday stress, my dog somehow injured her leg yesterday and is limping badly (she just randomly started limping at the dog park, I'm guessing she must have stepped wrong but I didn't see her do anything obvious to injure it). I think it's just sprained but in the meantime I feel so bad seeing my dog limp around. My hubby is calling the vet and hopefully they can see her today. I don't have kids so my pets are sort of my kids in a way, and I really hate it when they're sick or injured. I just want to make it better. So I'm feeling bad that my dog is limping, hopefully the vet can give us some sort of medicine or advice for helping my pooch heal.
 
I wasn't told my reading - was just told it was "elevated" and over the "normal range". Maybe I should have asked? I'm just glad something is being done about it. My GP is really good and really wants me to be seen to urgently. I have been going on with these symptoms since June so it really does need sorting now.
 
Okay so, I'm apparently going to have iron injections. Does anyone know anything about them? The doctor vaguely referred to some risks that you have to be prepared for, but he didn't specify what they are exactly. I don't have an appointment yet so I have plenty of time to research but thought I'd hear if any of you know anything.
 
Izzie, was it injections or infusions? I had infusions (they take 2+ hours, it's a very slow drip from an IV bag). I was told that injections are obviously much quicker than infusions, but they can hurt a fair bit and there's a higher risk of side effects or allergic reaction. There's no pain and less risk of adverse reactions with the infusions. You might want to call the doc and ask them to clarify if it's injections or infusions. From everything I've read, infusions are the way to go, not injections.
 
Cat-a-Tonic said:
Izzie, was it injections or infusions? I had infusions (they take 2+ hours, it's a very slow drip from an IV bag). I was told that injections are obviously much quicker than infusions, but they can hurt a fair bit and there's a higher risk of side effects or allergic reaction. There's no pain and less risk of adverse reactions with the infusions. You might want to call the doc and ask them to clarify if it's injections or infusions. From everything I've read, infusions are the way to go, not injections.
Click to expand...

He definitiely Said injections. I'm wary, I've read the same, that infusions are the better choice, but he didn't mention that as an option at all.
 
I'll bring it up but I'm not sure how rushed this whole thing is, if it's like emergent or what. Maybe I should take what I can get ^^
 
Izzie, I don't think that's it - my infusions were fairly rushed. It only took something like 10 days between when my GP put in the order and when I had my first infusion. If it were me, I'd at least question why they said injections and not infusions and I'd probably also ask if I could have infusions instead of injections (the worst they can say is no, but at least they'll have to give you a reason as to why they're saying no).

Maybe it's a cost thing, I know that my infusions cost about $1000 each before insurance. I'm not sure how much the injections would cost but maybe they're cheaper, maybe that's why? I don't know.
 
Cat-a-Tonic said:
Izzie, I don't think that's it - my infusions were fairly rushed. It only took something like 10 days between when my GP put in the order and when I had my first infusion. If it were me, I'd at least question why they said injections and not infusions and I'd probably also ask if I could have infusions instead of injections (the worst they can say is no, but at least they'll have to give you a reason as to why they're saying no).

Maybe it's a cost thing, I know that my infusions cost about $1000 each before insurance. I'm not sure how much the injections would cost but maybe they're cheaper, maybe that's why? I don't know.
Click to expand...

That is most likely the reason, yeah. I mean, again, the logistical nightmare that is my health care at the moment, this was not the hospital where I'll be next year, this was the hospital at the old city where I... you know what, I'm not even going to try to explain it. Point being: it's not the GP I'll have from here on out and if I wait until early January I'd have an easier time getting infusions if cost is the reason they're choosing injections... So I'm considering just... staying on the pills, talk to the new GP again and try from there. But right now I'm fasting for some bloodwork in the morning, so we'll see what those say, it's possible that things have improved. Or gotten worse, in which case I'm not in any position to decline anything :p
 
And now I have the flu. Have I mentioned this fall has been ridiculous? So ridiculous I can hardly believe it. Went to get blood drawn, had a bit of a sore throat, and then i went home and had horrible fever chills, went to sleep, woke up SUPER sick.

*sigh* Is bad anemia + flu a very bad combination or should rest take care of it? Anyone have experience?
 
Izzie, I had the flu last year (I caught it at xmas time as well) and although it was not a fun time (I coughed for 2 full months), it didn't seem to affect my chronic health issues. My guts were fine. I wasn't bleeding then and I didn't have the anemia/iron deficiency then as far as I know, though. But since the flu is a respiratory virus, I don't think it will make the anemia worse or anything like that. You might feel even more fatigued and exhausted than usual, and I recall having way worse joint pains than usual for the first few days when I had the flu, and a lot of chills and a fever, but aside from that and the coughing, that was pretty much it. So, in my non-expert opinion, I would think that getting a lot of rest should hopefully take care of it.

Having said that, those of us with immune system issues and chronic illnesses, we do have a bit of a harder time fighting off the flu. So if things don't improve or if things get worse, if you have trouble breathing or if your fever goes too high or anything like that, get to the hospital right away. I hope you feel better soon! I know it's miserable having the flu at xmas, but at least this will give you an excuse to rest and to not have to eat foods that family members try to force you to eat. You just take care of yourself and rest, rest, rest. Drink a lot of water too, staying hydrated should help. Take care and feel better soon!
 
I think this is just my body's way of insisting I take some time to rest. I've gone to work on crutches the past couple weeks :p

My doctor called back with my bloodwork results and it's gotten better! Almost normal, actually, and I've only taken pills for 3 weeks, not even the full dose. So he's putting me on a smaller dose and another brand of them, since I'm already almost at a normal level he didn't want to put me through injections.

So yay! And apparently there was a test to determine that it was iron deficiency anemia and not some other kind? Didn't really understand but apparently a lack of iron is the cause, in my case, since it's improved dramatically in such a short time on supplements.

So that was nice, some good news at least :)
 
Aaaaand now I have an ear infection on both sides and need to be on penicillin for a week.

Have I mentioned that my general health is a joke?
 
Izzie, my general health is a joke too - I've had at least 4 colds this fall and winter, my immune system is a jerk. I can't believe you've been going to work on crutches! Seriously, you need to rest and heal! Hopefully you can take some time off of work over the holidays and rest up and heal.

Speaking of healing, I'm jealous of my dog. :p She's apparently a very fast healer. She sprained her leg in the dog park a week ago. For maybe 2 days she was limping, but since then she's been walking with no limp, running, going up and down the stairs, etc. She seems totally fine now. Why can't I heal from things that quickly?
 
Sorry, haven't exactly read through the posts. Sorry I've been so inactive. I actually got that job I interviewed for and will be starting end of January.

Hope everybody is feeling OK and had a good Christmas!

My stomach has been rather quiet. Just a bit constipated which is not nice. I think that's the effect of my anti-depressants which I will be pushing to come off of again due to being declared as normal by a psychiatrist!
 
Hi Kelleh! Congrats on the job, that's awesome! :D Seriously though, a psychiatrist said you're normal? I thought you had at least one confirmed diagnosis (was it borderline personality disorder? I'm trying to remember). Oh gosh, I hope things go okay with coming off the anti-depressants. I presume you're just coming off of them for a bit to prove to the doctor that all is not well, and then you can go back on them? My goodness, I hope that all goes as well as can be expected. Good luck!
 
Hey Cat, thanks! :) I'm very much looking forward to starting. Just signed all of my contracts today!

Nah, I never had the diagnosis, it was just something I thought I had. Basically, he just thinks I'm going through the motions from my teenage years, which you know what - was probably the best explanation I have ever had - and it has actually enabled me to pick myself up when I feel a slightly bit down and brush myself off! So, it's actually worked for him to say that! But, we're definitely OK on that front.

How was your Christmas?
 
I'm jealous of your dog too, Cat.

I didn't really have much of a Christmas at all, kind of put myself in quarantine so as to not infect my elderly relatives with the flu.

One strange thing has happened, though. Since being on penicillin, my reflux has drastically improved and I've been able to cut my PPI dose in half without ANY adverse effects whatsoever. And I've been eating pretty awful stuff - Christmas candy and leftovers etc. Even had a cup of coffee! What on EARTH could this mean?!
 
Hi all, I haven't visited here for ages. I have had ibd disease most of my life. Because I always carried weight but looked healthy it was always brushed off with lose some weight and you will be fine. I was dxed at various times with duodenal ulcers and several times with peptic ulcers. I was told to give up drinking and I would be fine. In truth the doctor telling me that probably spilled more than I drank. At age 48 I eventually convinced a doctor to give me a colonoscopy and believe be I just about had to threaten him. I had the scope and it came back as cancer of the colon. I had surgery and it was staged 3 c an extremely aggressive adenocarcinoma which had broken through the colon wall and was into 6 lymph nodes. I had 48 sessions of chemo therapy. I have been cancer free now for 17 years. My ibd is worse than ever. It is funny my brother who is now 71 has been treated for ulcerative colitis and proctitis for 40 years , mostly with sulfasalazine and prednisone suppositories. I tell my docs that but they never took any notice. Since ca I have been dxed with nephrotic syndrome but three kidney biopsies have not identified it. Cyclosporine morning and night controls it. Earlier efforts with 75 mg daily of pred for over 18 months left me 7cm shorter and a lot less calcium as well as type two diabetes. I lost my gall bladder after acute pancraetitis. Naturally I developed bile salt mal absorption. Questran fixed that. I have been dxed with mild to moderate auto immune hepatitis, auto-immune endocrine problems including low testosterone. Because of my kidneys I cannot take 90% of pain killers so I finished up on 80mg of targin a day ,oxycodone, naturally that was like kryptonite to me and with each 12 hrly dose I take two dulcolax and two coloxyl. It started to cause more pain than it stopped and now I am on a 32 week taper to get off it. I suffer severe auto immune peripheral neuropathy. Nobody has tried to find a cause including an expensive neurologist who confirmed the problem but refuses to treat it. I am starting to feel like my epitaph will read I don't know in reference to all of the doctors whom have spoken those words to me . I don't know of anything more frustrating in life than to be undiagnosable. Ron.
 
Izzie, I'm not sure - I haven't heard of penicillin helping with reflux symptoms, that's a new one to me. Definitely something to ask your doctor about! Maybe you've had something bacterial this whole time? H pylori maybe? I don't know but it's great that you've found another piece of the puzzle!

Kelleh, that's an interesting theory and it sounds like it's working for you so far. But of course please seek a second opinion and/or go back on your antidepressants if things start backsliding. Hopefully a new job and a new outlook are just what you need. I'll be interested to hear how the new job goes, keep us posted!

Hi Ron50, my goodness, you have been through so much! I'm so sorry to hear that you're still going through the process of getting diagnosed, you've clearly faced a lot of challenges with your health and it sounds extremely frustrating and painful. I don't have any suggestions for you but we're all certainly here to support you. I hope you can find something in the way of relief or answers soon.
 
Cat, I think it is working. Maybe he did lie to me, but it works, so not worried about the details. I have to go to my GP on Friday, so I am probably going to ask them to get be back off of my antidepressants. However, I think at this dose, they actually do stop the pain. I have the GI next Thursday, so if I'm still on my antidepressants, he can't try and prescribe me any more as a mild painkillers. Unfortunately, at this dose, they slow my gut right down and not much happens at all, but if something does happen, it's not pleasant.

I felt awful yesterday. After New Years Eve, my boyfriend was in a really bad way, like, I was almost considering taking him to hospital. He was in so much pain, and apparently he was bleeding much more than usual. Then, yesterday, I felt rejected by him in more ways in one, basically forgetting that he was really not feeling himself, and I felt like I had a tantrum before I left! However, I apologised but he didn't see it in that light anyway, so all is well. :) He's back on the steroids, so hoping he gets better soon! He's staying off the drink for a while now!
 
Happy new year!!

Just popping to say "hi" real quick.

I've been alright, but holiday meals are NOT good for me :( sort of glad to get back to normal.
 
Hey all - hope the new year is treating you well so far.

I'm doing alright, treated myself to a bit of a shopping spree today, which was fun. Have however gotten this absurd sweet tooth in the past two weeks. It's really crazy, I found myself in tears the other night because I had no sweets in the house and the stores were closed :p I've gained like 10 lbs in a month, it's not the healthiest thing. I'm starting to substitute with fruit, but it's not going great haha. Oh well, I'd rather be a little flabbier and feel good and healthy-ish, than skinny and sick and unable to eat anything at all...
 
Happy New Year, everybody! Wildmtn, I agree with you that holiday meals are not so tummy-friendly. My guts have been less than happy - last night it was hard to get to sleep because I couldn't find a good position that didn't cause some tummy discomfort. Fortunately, I think the homemade squatty potty is actually helping. I had a really bad episode of d the other day, and normally having a bad d episode will cause me to form a new bleeding hemmie. But, I've been using the squatty potty, and no hemmie! It's probably still too early to say for sure whether the squatty is helping, but I think this is very promising. Keeping my blood in my body (and not pouring out my backside) is my 2016 resolution, ha ha, and so far so good! :p

Izzie, I go through phases like that of craving sweets. Usually mine is related to either medication (steroids in particular make me hungry all the time) or to lack of sleep - it seems like, if my body doesn't get enough energy from rest, then it tries to make up the difference by getting more sugar/calories to burn as energy, or something like that. Have you been sleeping okay? It could be hormonal or it could just be a winter thing - I seem to tend to eat more during the cold months. The fact that you broke down into tears is slightly worrying - I tend to get over-emotional and cry at everything when my guts are flaring (in flares, I've cried at TV commercials, I cried because I thought about calling my mom on the phone, I cried because my friend was nice to me, it's seriously ridiculous but I can't seem to control it). Hopefully you're not flaring - you said you're feeling fairly well, and having an appetite is not a flare symptom (at least not for me it isn't) so I'm presuming it's something other than a flare.

Kelleh, I hope your boyfriend is doing better now! He sounds like a good guy. I hope the steroids help him feel a lot better. It sounds like you're doing less than stellar if things are not moving along. How are you doing otherwise? And are you still working out regularly? Now that it's January, I've been avoiding the gym and working out at home instead - the New Year's resolutioner newbies tend to irritate me. It'd be okay if they used common sense, but so many of them hog the machines (it's the worst when someone sits on a machine and just plays with their phone!) or don't wipe down machines, or just plain don't know how to use the equipment and instead just socialize with their friends or wander around looking lost, or the worst is when they are in the gym to obviously pick up dates rather than work out (seriously, full makeup and jewelry?). I'm not going to the gym for a few weeks at least, until then I'll be using my home gym primarily and also the small gym at work (although I think fear are a few resolutioners at work as well!). Maybe I should be encouraging of the resolutioners, but I can't do that, they just irritate me too much. :p Fortunately, most of them will have quit within a few weeks and then my gym-going habits can get back to normal. I like working out at home, I have plenty of equipment, but it's also distracting, you know? All the distractions of home. It's like, I'll start my workout... right after I start this load of laundry and let the dog out to potty and give the cat her medicine and wash the dishes. When I'm at the gym, there are none of those distractions. So I do like working out in a gym better than at home, but right now home is the better option because at least there aren't resolutioners in my home gym. ;)
 
Back to work. Had a dreadful day. my heart was on the blink all day. The last holter monitor test I had recorded 10,299 premature ventricular and atrial ectopic beats. I have been going to a cardiologist for the last two and a half years. I saw him late last year. I asked if anything had changed . He said that everything is the same and then he said not to come back. I queried why and he said that if it had not killed me by now , it probably would not. Again he has no idea what is causing it and therefore won't treat it. Whatever it was today it made me feel quite ill and very uncomfortable then this afternoon I had one of my menopause like hot flush meltdowns . That left me feeling even worse. When I left work I told the boss that if I don't turn up tomorrow , ring me . If I don't answer get someone to drop in. The only reason that I haven't retired is that if I drop off my perch at least at work someone will notice. I have asked my neph how long he thought I had but he refused to discuss it. He just said I am not going there. He did say that with kidney problems they can turn from chronic to acute very rapidly. I guess not really knowing what the problems are ,none of my specialists have a point of reference for what might happen. It would be a lot cheaper just to visit the gp . I get the same answer. Ron.
 
Oh man, gotta love those New Years resolution gym-goers. And yeah, Cat, I cry at the strangest things right now. I was at the hairdresser's the other day - cried because I read a sappy article. Then I also cried because the girl who cut my hair said I have "thin hair" - which I really do now but I always used to have really really thick hair when I was healthy so that upset me.

My period is over a week late so I honestly think this is just really intense PMS...
 
o m goodness. The pain is real today. The stools are intense. You know, the kind that make you shaky and weak? Yeah. I think I'm gonna go back to bed with a heating pad and my ipad after this whine.
 
Izzie, I ALWAYS crave sweets! It's really rather annoying. Although, over in Sweden, you probably have the worst because everything sweet just tastes so good! :) Do not feel bad! Your body is obviously wanting you to eat stuff to make up for lost time! That, or it is seriously just PMS!

Cat, I think he is doing better - well at least he says he is! I think the steroids really do help him, and he knows this. He has his GI appointment the week after mine, so hopefully they can do something for him. I said the steroids may help him find a bit of remission and he goes 'remission? what's that? I can't remember the last time I felt anywhere close to that!' - that made me sad a little!

Oh, I've been truly naughty at the gym. Over Christmas and New Year, I did not go at all. However, I have been the last 2 days (today is my rest day). The first day I did an hour and a half, and last night an hour. Our gym is always relatively quiet, so the only people that are in are the usuals, with no new people (apart from my friend who signed back up to accompany me as he has now finished uni).

However, I'm now in a new food routine, and yesterday I have quite a bad hypoglycaemia attack, which I have never known for me to have that bad! I do not know what happened, but I managed to get a chocolate bar and I was better within 10 minutes. It was horrible. It's not like I'm not eating, as I am, and very well. It was just weird. Horrible. No idea, I feel one coming on today, but I'm hoping I am going to be OK.

Stomach wise - it's been a little upset since I started exercising again. First night, I had such a painful gnawing when I was trying to sleep, that I just couldn't get comfortable. Then yesterday, it played up a bit, a few painful twinges, mainly in my right side, which is odd for me! My toilet frequency has gone up again weirdly, but it's just 'constipated'. Every time I eat apples it gives me a weird stomach ache too, as if I'm hungry. But apart from that, I'm all good! How has your stomach been treating you?
 
Argh! Yesterday I tried writing lengthy responses, TWICE, but the forum had an error both times and ate my responses. So I'll keep this brief. I am back to passing blood again. :( I spoke too soon or jinxed myself I guess. In spite of the squatty potty, I passed a large amount of blood into the toilet last night. Ugh. Had a really rough day yesterday, was very emotional, just so done with my body jettisoning my blood like this. Hopefully between my 3 doctors, we can come up with something. I see my GP on Friday, I see my GI early next month, and I see the new colorectal surgeon at the end of Feb. So hopefully one of them can come up with answers.

Oh, and they stopped making my favorite hemmie cream! :( Ugh! I was even more upset about that than I was about the bleeding, or maybe the lack of hemmie cream was just the straw that broke the camel's back. At any rate, I was in a horrendous mood yesterday so maybe it's for the best that the forum ate my replies! ;)
 
Izzie, about your period being late - times of extreme stress (mental or physical) can cause all sorts of weirdness and lateness with menstrual cycles. I had the same thing happen to me many years ago when a dear friend died suddenly in a house fire. My period was over 2 weeks late after my friend died, it freaked me out. I don't think I was craving candy at that time, although I only remember bits and pieces of that time and mostly I was just crying. But yeah, the stress of losing my friend definitely messed with my cycle. I would wager a guess that your being hit by a car was a tremendously stressful thing, and that's likely what's causing your period to be late and causing you to crave sweets. Just my guess based on my experience!
 
Kelleh, I've also had a hard time sleeping lately because of my stomach. When I lie down on either side, I seem to have discomfort in both the lower left and the lower right. I'm a side sleeper, so I just keep shifting back and forth trying to get comfortable. Eventually I lie flat on my back, which is my least-favorite sleeping position, but it seems to be the position that is the most comfortable on my abdomen right now. So I can only seem to manage to fall asleep if I lie on my back. It's been like that for quite a few days now and I'm not sure why. Don't know if the discomfort is related to the bleeding or not.

You mentioned eating apples - do you eat the skins or remove them? Skins and seeds are really hard for me to digest, I had a couple slices of apple at my in-laws house recently but I made sure to remove the skins first. And I'm also sad for your boyfriend - I do know what remission is like, I spent 2 wonderful years in remission myself (the spring of 2011 thru the spring of 2013 - at that time, they stopped making my maintenance med and it took awhile to find another one that works well for me, and in the meantime I fell out of remission and am still trying to claw my way back up). I know remission is possible and that it's wonderful. I felt not 100% well, but a solid 90 to 95% most days. I just had to be a little careful of what I was eating and make sure to take my meds and all that, but those are small prices to pay to feel essentially almost normal again. I hope your boyfriend can get into remission someday! And you as well!
 
That's probably a pretty good theory, Cat. I'm about two weeks late currently, and I'm NEVER late usually.

Sorry you keep having bleeding, I know how stressful that is both physically and mentally!

I'm freaking out about "losing all my hair" since my hairdresser commented on how thin my hair is. I do have a lot of shorter "baby hairs" though so I guess it's coming back in. I suppose it's no wonder with the stress on my body recently but I'm kind of vain about my hair, and I can stress myself out tremendously thinking that I'm getting alopecia or something :p
 
Hello All, I am a 21 year old female who is need of some help/advice. I have been experiencing symptoms for just over 9 months now and I have had absolutely zero answers to my questions. I've turned to this blog in hopes someone, somewhere, has an idea for me.

So here is my story. Back in May of 2015, I had an appendectomy. The surgery went well and there were no complications during the surgery. Well, I noticed that I was taking longer than normal to heal. Not necessarily externally (all my incisions were great) but just in terms of how I felt. I had a hard time eating much and began to lose weight. My energy levels were low, and my desire to do anything other than sleep was lacking. I vomited once two weeks after surgery. I contacted the surgeon and the doctors office and was told that it was normal to take up to a month to fully heal. Trusting the doctors, I took it and ran with it.

Well, a few months later, I was still experiencing symptoms, but just became more and more intense. I was still losing weight at rather a quick pace, not able to eat, suffering from severe nausea and lower right quadrant pain in my stomach. At that point I had gone back to the doctor twice. They ran tests for: C. Diff, food allergies, parasites, H. Pylori, and various other conditions. And guess what?? They all came back "normal" One doctor even prescribed medication thinking it was acid reflex.

Well, at this same time, I started to pass blood in my stool. At this point, they decided to schedule a colonoscopy and endoscopy. Well, it all looked "normal."

Long story short....I need answers still..

A lot of my symptoms are consistent with Crohn's and UC.

Here are my symptoms:

1. Nausea both with and without eating
2. Vomiting
3. Blood in stool
4. Lower Right stomach pain-severe
5. Headache
6. Dizziness/light headed
7. Losing weight (lost 25 lbs since May 2015)
8. Diarrhea/constipation without warning or triggers.
9. Sudden need/urge to have a bowel movement that's unproductive.
10. Occasional mouth sores
11. Weakness/fatigue
12. Low grade fevers
 
Cat - That really sucks. Sorry to hear your stomach is causing you pain when you lie on it to sleep! Do you try sleeping on your back at all? I know I have to sleep on my side, it can be very difficult for some to sleep on their back or their front. I'm really sorry to hear you're bleeding too, that must be extremely scary.

Apples I eat the skin and I don't touch the seeds at all. I don't think the skins are hard to digest for me, but I'm not entirely sure what part of the apple that is causing the distress. Possibly the sugars. I have the GI next week, so I am going to try and find out if I have this fructose malabsorption for sure.

I really hope he gets better too! Apparently he's seen no changes, but he said 'these things need time, so I'll be patient', which is always a great attitude to have. I'm kind of jealous of his attitude! My stomach has suddenly got worse again, and I feel awful! I just feel rough. Not sure if it is the exercise or not, as yesterday was my rest day and that seems to be when it goes worse.

@Izzie - hoping you get your period soon! I know how distressing it is. When I was on the pill (which I'm now back on, day 3, because I am SICK of periods!) I missed them for months, and weeks too. When it was weeks, I started to get scared I was pregnant. It was horrible. You said you gained weight quite quickly? Any weight fluctuations that quick may unsettle your periods too.

@Ksteners - Hi, welcome to the forum! Sorry to hear what you're going through. If they didn't find anything in your colonoscopy, there is probably a low chance of UC. However, did they take biopsies? Lower right pain causes cannot always been seen by colonoscopies, so maybe push for an MRI or CT scan. I am in the same position as you. My sigmoidoscopy came back totally normal, but here I am, flaring again after a quiet 3 months!
 
Ksteners, I have had surgery for colon cancer and gallbladder. With the first they cut me from sternum to groin and the gallbladder they did keyhole. I know that a lot of people think that keyhole I less invasive but it can all interfere with the lining of your organs . When they do keyhole they tend to blow you up like a ballon . Since my surgeries nothing is simple. I have adhesions from where my colon lining dried out and stuck to other areas of colon when they put it back. With my gall bladder I was one of the ten percent who will suffer bile salt mal absorption afterwards. Operations no matter how routine and how problem free in theory can cause ongoing problems. They say the appendix doesn't do anything perhaps it just doesn't do anything that they currently understand. give yourself a bit more time to get over things then if you still have problems get another opinion. Hugs ron.
 
DustyKat said:
Hi Sam,

Roo didn't have all the normal tests, she has never had a colonoscopy, pill cam or endoscopy. I think her age coupled with her symptoms never lead anyone to believe she had IBD. Her symptoms only became regular about 6 months out from diagnosis and frequent within about 2 months and by frequent I mean about once a week. She never had diarrhoea or bleeding and all her pain was literally around her stomach coupled most of the time with vomiting, headaches and sore eyes. This lead her diagnosis of Abdominal Migraine. She did have weight loss. Right up until the night before surgery all her blood results returned normal, except when they did pancreatic enzymes, including CRP and ESR, stool specimens were normal, urine specimens normal.

About 10 days before surgery she had a fall at school about 2 days later her pain changed to her right kidney region and down her back. It became extreme and we took her to the doctor and he ordered an ultrasound of her kidney. Of course everyone thought it was related to the fall even though she didn't hurt herself at the time. The ultrasound indicated she may have a UPJ obstruction because the pelvis of the kidney was so swollen, it also showed fluid in the pouch of douglas that they put down to a burst ovarian follicle when I asked about it. That was followed up by a nuclear scan which showed slowing in the emptying of the kidney but no structural abnormalities. That night her pain became extreme generalised abdo pain and the doctor came during the night and gave her morphine and in the morning we took her to hospital.

They couldn't find anything obvious so the casualty doc did pancreatic enzymes, just on spec, and they returned a very high reading and they thought they had hit on it and admitted her for Pancreatitis. The next day those levels were back to normal again. She was kept on NBM and morphine and things seemed to settle again and she was sent for a CT scan with IV and barium contrast and that came back completely normal so she was discharged. Within a day the pain was back and over the next four days along with the pain she developed vomiting and a fever so back to the hospital and this time the bloods showed she was septic. They took her to theatre thinking they would do an appendectomy and laparotomy but when they opened her up her bowel was perforated and infarcted and in the surgeons - words it was an absolute mess with pus everywhere. So she ended up with a Right Hemicolectomy, removing 60cms of bowel. The surgeon told me when he spoke to me in recovery that it was Crohns.

Obviously the fluid in the pouch of douglas was pus all along. I don't know if her high pain threshold masked symptoms but I really think it did, she just didn't present as ill as she really was. The whole time pre op her pain was never above 7, she just didn't complain and I know part of it was she didn't want to be a bother. It breaks my heart to think back on it.

As to the normal test results, well they couldn't explain that but the one that really stumped them and they couldn't get a handle on was the CT scan. They could not believe that it was normal and within a week they opened her up and saw what they did. I guess the only explanation is they weren't able to fully visualise the terminal ileum. It wasn't until the day before she went into hospital the second time that a distant relation rang and told me she had Crohns and it took them 4 years to diagnose her. I started to google and things fell into place. At least when I saw the surgeon and paediatrician the next day I was armed with enough info to say to them - she is not leaving until you prove to me it isn't Crohns!

Sorry for the long post!!! :eek:

Dusty. :)
Click to expand...
this happened to me too, I was vomiting and very ill. Eventually I was taken to hospital and had secticimia, my bowel had leaked into my body. I was very very poorly. That was 10 years ago and I'm still trying to find out if I have crohns xx
 
Lesleytlc said:
this happened to me too, I was vomiting and very ill. Eventually I was taken to hospital and had secticimia, my bowel had leaked into my body. I was very very poorly. That was 10 years ago and I'm still trying to find out if I have crohns. I've been in hospital a few times after that too. They just don't want to know
Click to expand...
 
Hi Ksteners, welcome to the club. I agree with Kelleh, it sounds like more testing is needed since they haven't seen hardly any of your small intestine. MRE (MRI-enterography, which specifically looks at the intestines) or pill cam (where you swallow a small camera that takes pictures of your small intestine all the way through) might be your best options.

With the things you've mentioned, it might be IBD or it might be something else that's autoimmune. Have you looked into things like Lupus or Behcet's? Those could cause your symptoms as well. If you find you're at a dead end with testing for IBD, maybe take a break from that and look at other illnesses which can mimic IBD symptoms.

Izzie, I'm fairly sure that I read somewhere that iron deficiency can cause hair loss. I think someone mentioned that on the forum somewhere but don't quote me on that because I can't remember for sure. If that is the case, now that you and I are both getting our deficiencies under control, hopefully for both of us our hair will get thicker!

Kelleh, your boyfriend's attitude is great. I wish I could be more patient. Normally, for me, when things start getting bad then I tend to catastrophize and whine. :p I sometimes have a hard time looking at the big picture and get caught up in the details. And hey, if the details involve pooping blood, can you blame me? Ha ha. Seriously though, I hope he does start feeling better soon. And you too! Good luck with the GI, I hope you can get some answers about the fructose issue at the very least.

As for me, I'm still bleeding. I've put myself back on the steroid suppositories but they apparently haven't kicked in yet. I actually sharted blood this morning which was a new experience for me. Fortunately I was on the toilet when it happened (I never trust a fart!). I felt like I just had to pass gas, so I sat on the toilet, passed gas, and my anus started dripping blood and there was a fair bit on the TP as well. Fun. The good news is, I see my GP tomorrow, so I'll see if he has any other ideas. The steroid suppositories work okay but they're not strong enough, they don't last long enough and wear off and the bleeding comes back before I do my next suppository. I don't know, maybe I need to be on oral steroids for a bit. I don't have any other ideas, I've tried everything I can think of to keep the hemmies and bleeding at bay - creams, wipes, squatty potty, bidet, the suppositories, bathing with epsom salts, eating more (soluble) fiber, drinking more water, not straining when I go, yelling at my stupid body. :p None of that is working and I'm still bleeding. Just, ugh. Wish me luck for tomorrow, hopefully my GP is open to the idea of oral steroids, even for just a few weeks.
 
Cat, his attitude scares me because it is so positive! I love him for it, and it has made me better mentally, which is always a great relationship! I can't wait to move in with him. Although, the must is a 2 bathroom place. :p I wish he whined sometimes, so I could understand how to comfort him. When he is bad though, he's somebody that doesn't like to be touched. However, with me, he'll lay his head on my lap and snooze while in front of a movie and that just melts my heart!

I hope you stop bleeding soon, that just sounds awful!

Ugh. Frequent constipation. Been to doctors, told her it's my anti-depressants probably doing that now, but it had quietened down, and then all of a sudden it has gone boom! Not found a lot on the internet with exercise making stomach problems worse - but instead better. Also asked my doctor about my anti-depressants making me possibly hypoglycaemic and she said no. So I asked if it was related to my stomach, and all I got was 'maybe, mention it to your GI'. However, again, nothing in relation to stomach problems and low blood sugars. Maybe it was just because of exercise, but I've never had it before. :( Probably unrelated completely, but hey, we'll see I guess!
 
Kelleh, I completely understand the two bathroom need! I currently just have one bathroom in my house, but it's just me and hubby and he's healthy, so it still works out pretty well most of the time. Someday though, when we can afford it, we're going to remodel our basement and add a second bathroom down there. This is gross, but I've told hubby that if I'm in the bathroom for awhile and he just has to pee, that he should just pee in the utility sink in the basement. :p He's had to resort to that a handful of times! So yeah, even in a household where it's one IBD'er and one healthy person, I feel like we still really need 2 bathrooms. So I'm sure that goes doubly for you and your boyfriend!

How's everybody today? I'm so-so. Only a teeny bit of blood on the TP this morning so I think things are improving, but my anus is in pain. I can feel the hemmie, it's right inside the anal sphincter (my hemmies seem to like to form in that spot for some reason). It wasn't this painful until today so I'm not sure why that is. I did admittedly do cardio yesterday, but it was only 20 mins on the stationary bike, and it was a recumbent bike so it has a comfortable seat (like a chair seat, not like a bicycle seat). At any rate, I see my GP this afternoon so I'll at least get my iron re-tested and see where I'm at. I've stopped drinking tea and I've upped my iron intake so I'm hoping that I am still okay and maintaining a normal amount of iron in my system. I still have decent energy levels most days so I don't feel like I'm deficient. We'll see!
 
We're both a bit broken, so it is a must.

Although, I am rather quite upset right now because he doesn't want to think about moving in together yet (even in a years time when I suggested). I guess he's quite intimidated, but I don't want it to get to the point in time when we have the choice and he says he doesn't want to be with me any more. He may be offered a manager's job at work, so neither of us will want to move, what with both of us having new jobs. Long distance is so hard. I sat in the toilet and work and just cried. Now I'm just getting angry about it. Sometimes I feel like I'm 2nd best (I guess he's rather materialistic) to everything and everybody I've ever cared about. I just feel ever so alone, and I don't feel like he loves me all the time.

Glad to hear your energy levels are still good though! Always nice to have a positive in the day!
 
Kelleh, that sounds really difficult. How long of a distance away from you is he? Can you two easily drive to see each other on weekends at least? And how long have you been doing the long-distance thing?

I ask because I did long-distance dating for 4 years, all through college, when I was dating my now-hubby. He was going to art school in Chicago and I was about 3.5 hours away in Wisconsin (the drive was even longer than that if traffic was bad, which it often is in Chicago). This was in the late 90s/early 2000s, so although he had a cell phone, I didn't (I had one but it was only for emergencies, I think it came with a whopping 30 minutes per month, literally). No texting, no skype, we had to rely on email and phone calls and long drives to see each other every other weekend or so. It was really difficult, but it was also worth it. :) I don't think I'd ever want to do that again, but we got through it and I think our relationship was made stronger because of it. It seems to me that long distance dating can really make or break a relationship. It's a lot of work but it can be totally worth it.

I'd also advise you to hold off, for now at least, on talks of moving in with him. Get settled into your new job first. If you love it, then you'll need to prioritize what you can do - maybe you can move to where your boyfriend is and work from home? Or, maybe you won't love the job and that would make moving an easier decision. Or maybe he will realize he doesn't love his promotion and that will make a decision easier for him to move closer to you. But for now, seriously, just take one big life change at a time. Job first, get settled in, then revisit the moving in together idea. That's my advice! Don't overwhelm yourself with too much all at once. Just tackle one thing at a time.
 
Hello everyone! It's been a week or so since I've visited.

My Upper/Colonoscopy is in two weeks. I'm anxious I guess, but I feel like they probably won't find anything. I cannot nail down whatever is going on. My symptoms have died down after over a month of non-stop LLQ pain. However, the past few days, I keep getting nauseous after I eat again. It's horrible. I noticed today that the pain is starting back up in my LLQ again (feels like ovary pain, but I've had them looked at. Nothing wrong with my ovaries).

Guess I'm just waiting right now. If they don't find anything, I'm not sure what my next step will be.
 
So I have a call in to my newest GI. I'm back to watery D and running a a temp of 99.5 right now. Hopefully just a virus, but I worry about c-diff, diverticulitis, etc. especially as the pain in my LR has been back with a vengeance.
 
Hi everyone, I am so relieved to see this forum and know that I'm not alone, after a year of googling my symptoms and feeling utterly crazy…and here there are 340 pages of you all! Can't believe how tricky GI diagnoses are, for us to be in the same boat :(

A bit about me—a year and a half ago while living in southeast Asia I developed stomach pain. I called it "pain," what it really was was fullness/pressure that I'd never experienced in my life and began to notice lack of appetite. I've always had bloating and pain and diarrhea after eating, since I was a little girl, but assumed it's because I'm lactose intolerant/sensitive stomach and never really thought much about it. That was in fall 2014. Moved back home that winter.

Flash forward spring 2015. Stomach pain worsens and I start to notice fatigue. That is normal I figure, I have anemia and low blood pressure and I'm a stressed university student, right? So I don't think much of it. That summer 2015 the pain is becoming unbearable and my appetite starts to dwindle even more. I finally drag myself to GP because my partner is yelling at me that I have parasites from Asia. Fine.:rolleyes: So they put me on a scale at the doctor and it says 123 lbs. I was surprised, having been 135 or so the month before! But again, thought little of it, assumed I was simply eating better and this was a healthy kind of weight loss.
My GP didn't think so. She ordered stool cultures, CBC, full ultrasounds (pelvic, abdominal) etc. All normal, of course. I come back in July 2015 (3 weeks later). I'm 118 lbs. She is alarmed, puts me on omeprazole and refers me to a GI, thinking I have stomach ulcers.

At this point, it's late summer and early fall 2015, I'm starting to get a little frustrated and skeptical. I'm kind of the opposite of a hypochondriac—I always think I can cure myself at home, that doctors are out to make money etc. So I throw that little referral in the back of my desk, choosing instead of focus on my studies.
But I'm not feeling better with the diet and med changes. I cut out dairy, alcohol, soda, carbonation, caffeine completely. It helps for a time, long enough that I can finish my fall semester. By this time it's 3 months ago—October 2015. I finally dig that referral out and beg for the next GI appointment available with my insurance (I have horrible insurance…) They say I'm in luck to see one of the top GIs before the year ends (a bit of a drive, but worth it).

So I see him in November 2015. He's alarmed by my weight loss as well, puts me on carafate, and immediately sends me for thyroid and celiac panel+bloodwork and an upper GI series with small bowel follow-through. I'm really confused at this point, thinking he's nuts—it's my stomach, not my intestines, dude! Bloodwork comes back fine. I go in for the x-rays (that barium solution is hell!!) The tech finds nothing in stomach, to my frustration, then double takes at the screen during the small bowel follow-through. He pushes on lower right abdomen and asks "does that hurt?" Well, yeah, I told him. It always hurts. But I thought that was normal. He gives me a look and cleans me up.

Flash forward to early December—I'm traveling abroad to visit family, and symptoms are taking an absolute nosedive into low fevers, joint pain, severe fatigue etc. That's when I receive multiple calls from the GI office, telling me I urgently need to take a capsule endo before my next follow-up with GI.

At this point I finally start to believe that he knows what he's doing—with the x-ray they had finally found abnormal loops in my ileum, which is quite distended, explaining my malabsorption. I do some googling because my next follow-up isn't until new year. That's when I start to connect the dots, but I'm still a bit in denial at that point.

I go in for the pill cam before Christmas Eve 2015 and am disappointed, but not surprised, when the test dr finds everything "relatively normal." And that's when everything gets 100x even worse. The past few weeks have been me crying in bed, forcing myself to drink even 800 calories a day in smoothies, Ensure, gatorade, etc. At this point I finally put the last puzzle piece in and realize this could be IBD.

So finally the day arrives for my follow-up with the GI — Jan 8th 2016 (today). I went in today looking like death on legs and utterly desperate to get back to my normal life. I weighed in at 113 lbs (20 pound weight loss since late July). After reading some of these stories, I am so thankful I have a team who takes my symptoms seriously and seems committed to investigating the diagnosis, but I am still so frustrated that this has become my life!! GI prescribed me IBS meds today (Levsin) but wasn't able to schedule my Colonoscopy/Endoscopy until late Feb. So I have to live with this debilitating starvation and fatigue for 2 months, unless the IBS meds miraculously work. He admitted they probably won't—IBS doesn't cause weight loss as I've experienced. But he doesn't want to rush into more "harmful" treatment. I know what he means by that—the full Crohn's meds. Immunosuppressants etc. And I understand, and am grateful for his caution. But I am so frustrated with my own body in the meanwhile!! I can barely function, let alone go to work and school, I've already had to cut down my activities and my relationships are being affected by my illness.

So, I guess that's the gist of my experience so far. If you have any tips or advice about the upcoming Colonoscopy EGD, or how to eat in the meanwhile, I would so appreciate it. If nothing comes of those tests, I don't know what I'll do, to be honest. I'm starting to get depressed about the whole thing. I just feel sick. Just…completely, utterly sick to the bone :(
 
Adadzio said:
Hi everyone, I am so relieved to see this forum and know that I'm not alone, after a year of googling my symptoms and feeling utterly crazy…and here there are 340 pages of you all! Can't believe how tricky GI diagnoses are, for us to be in the same boat :(

A bit about me—a year and a half ago while living in southeast Asia I developed stomach pain. I called it "pain," what it really was was fullness/pressure that I'd never experienced in my life and began to notice lack of appetite. I've always had bloating and pain and diarrhea after eating, since I was a little girl, but assumed it's because I'm lactose intolerant/sensitive stomach and never really thought much about it. That was in fall 2014. Moved back home that winter.

Flash forward spring 2015. Stomach pain worsens and I start to notice fatigue. That is normal I figure, I have anemia and low blood pressure and I'm a stressed university student, right? So I don't think much of it. That summer 2015 the pain is becoming unbearable and my appetite starts to dwindle even more. I finally drag myself to GP because my partner is yelling at me that I have parasites from Asia. Fine.:rolleyes: So they put me on a scale at the doctor and it says 123 lbs. I was surprised, having been 135 or so the month before! But again, thought little of it, assumed I was simply eating better and this was a healthy kind of weight loss.
My GP didn't think so. She ordered stool cultures, CBC, full ultrasounds (pelvic, abdominal) etc. All normal, of course. I come back in July 2015 (3 weeks later). I'm 118 lbs. She is alarmed, puts me on omeprazole and refers me to a GI, thinking I have stomach ulcers.

At this point, it's late summer and early fall 2015, I'm starting to get a little frustrated and skeptical. I'm kind of the opposite of a hypochondriac—I always think I can cure myself at home, that doctors are out to make money etc. So I throw that little referral in the back of my desk, choosing instead of focus on my studies.
But I'm not feeling better with the diet and med changes. I cut out dairy, alcohol, soda, carbonation, caffeine completely. It helps for a time, long enough that I can finish my fall semester. By this time it's 3 months ago—October 2015. I finally dig that referral out and beg for the next GI appointment available with my insurance (I have horrible insurance…) They say I'm in luck to see one of the top GIs before the year ends (a bit of a drive, but worth it).

So I see him in November 2015. He's alarmed by my weight loss as well, puts me on carafate, and immediately sends me for thyroid and celiac panel+bloodwork and an upper GI series with small bowel follow-through. I'm really confused at this point, thinking he's nuts—it's my stomach, not my intestines, dude! Bloodwork comes back fine. I go in for the x-rays (that barium solution is hell!!) The tech finds nothing in stomach, to my frustration, then double takes at the screen during the small bowel follow-through. He pushes on lower right abdomen and asks "does that hurt?" Well, yeah, I told him. It always hurts. But I thought that was normal. He gives me a look and cleans me up.

Flash forward to early December—I'm traveling abroad to visit family, and symptoms are taking an absolute nosedive into low fevers, joint pain, severe fatigue etc. That's when I receive multiple calls from the GI office, telling me I urgently need to take a capsule endo before my next follow-up with GI.

At this point I finally start to believe that he knows what he's doing—with the x-ray they had finally found abnormal loops in my ileum, which is quite distended, explaining my malabsorption. I do some googling because my next follow-up isn't until new year. That's when I start to connect the dots, but I'm still a bit in denial at that point.

I go in for the pill cam before Christmas Eve 2015 and am disappointed, but not surprised, when the test dr finds everything "relatively normal." And that's when everything gets 100x even worse. The past few weeks have been me crying in bed, forcing myself to drink even 800 calories a day in smoothies, Ensure, gatorade, etc. At this point I finally put the last puzzle piece in and realize this could be IBD.

So finally the day arrives for my follow-up with the GI — Jan 8th 2016 (today). I went in today looking like death on legs and utterly desperate to get back to my normal life. I weighed in at 113 lbs (20 pound weight loss since late July). After reading some of these stories, I am so thankful I have a team who takes my symptoms seriously and seems committed to investigating the diagnosis, but I am still so frustrated that this has become my life!! GI prescribed me IBS meds today (Levsin) but wasn't able to schedule my Colonoscopy/Endoscopy until late Feb. So I have to live with this debilitating starvation and fatigue for 2 months, unless the IBS meds miraculously work. He admitted they probably won't—IBS doesn't cause weight loss as I've experienced. But he doesn't want to rush into more "harmful" treatment. I know what he means by that—the full Crohn's meds. Immunosuppressants etc. And I understand, and am grateful for his caution. But I am so frustrated with my own body in the meanwhile!! I can barely function, let alone go to work and school, I've already had to cut down my activities and my relationships are being affected by my illness.

So, I guess that's the gist of my experience so far. If you have any tips or advice about the upcoming Colonoscopy EGD, or how to eat in the meanwhile, I would so appreciate it. If nothing comes of those tests, I don't know what I'll do, to be honest. I'm starting to get depressed about the whole thing. I just feel sick. Just…completely, utterly sick to the bone :(
Click to expand...

I'm new around here, but I just wanted to say I'm so sorry you feel bad! I hope you get some answers!
 
My LLQ pain really kicked back up today. It's nonstop pain. Just sitting here it's this DEEP ACHE/PAIN. Last time this kicked up, it was over a month and then like that it was just gone. I'm very bloated and uncomfortable today. Even just my pants pressing on my lower stomach is awful. When I pee, I can feel the pain getting more intense, and I've noticed I feel like I have to bear down to empty my bladder.

I'm so sick of this!!
 
Cat - It was a difficult day, but we will see what happens eventually. He is definitely worth the wait, and I am going to rent a place at some point this year, so he can definitely come to me. I generally just go up and see him, as if he comes here, he has to get a hotel because of his anxiety around his UC. We've been together a year come next month.

Thanks for the advice. I didn't know yours was long distance! Definitely gives me hope. I thought a year was a long time, or even 2 years, but 4? Well, it can definitely work if it does for you! I just guess he's nervous about leaving himself! I was totally prepared to move up to him. I'm just going to see what my new job is like.

After 6 months, my probation is up, so that's when I'll know if I can move out myself, even just for a little flat on my own. :) I need my independence!

@Adadzio - Welcome to the forum! I too have that weird pressure in my stomach, then it develops into actual pain. Let us know how you get on when you do eventually have your tests and also how you get on with the IBS medication! Fingers crossed. We're all here (and in the same boat) for you!
 
Hi Adadzio, welcome to the forum. I'm concerned because you said things got 100 times worse right after the pill cam. Did you/your doctors make absolutely sure that you passed the camera capsule? If it's still stuck somewhere inside you, that blockage or partial blockage could absolutely account for the sudden and dramatic increase in your pain and symptoms. A simple x-ray will show if it's still in you or not. If it were me, I'd definitely be calling the doctor and inquiring about that possibility.

PaintedElephant, I hope your upcoming tests find something worthwhile! Make sure they take lots of biopsies when they do the scopes - as you probably already know, some things (such as microscopic colitis) can only be found on biopsy, so the more biopsies, the better. Keep us posted on what happens!

Kelleh, independence sounds wonderful! Are you currently living with roommates? Or your family? Having some space of your own, especially when you're young and still figuring out who you are and what you want from life (heck, I'm still figuring that stuff out and I'm not so young anymore), that's vital and I'm glad you're going to live on your own for a bit before thinking about moving in with your boyfriend.

So I have had a rough few days. Sunday, I had two meals with family - we got together with basically my mom's whole side of the family and had a long lunch at a restaurant. But my hubby was working, so in the evening my aunt and uncle and brother and I met hubby at another restaurant for dinner. My guts did NOT like 2 restaurant meals in a row like that, and they revolted pretty strongly. I was having a lot of urgent, watery diarrhea, and there was tons of blood with it. I was sure I was going to end up in the emergency room, particularly after the worst bloody bowel movement I've ever had. I pretty much didn't sleep Sunday night, I kept getting up to go. I was trying to stay hydrated, since the d was so watery, so I drank a lot of water. That made me have to urinate a lot, and I found that blood was draining out my backside even when I was just peeing. It was horrible, I don't know how much blood I lost but I had 7 or 8 bathroom trips where I passed blood that night. That's a new record for me! 5 bloody bowel movements in one day was my previous record. Sunday night, I had at least 5 bloody bms plus 2 or 3 trips where I just peed but lost blood anyway. Ugh.

So I stayed home sick from work yesterday. What a horrible day. It was a good day to stay home and be depressed, I guess. I saw online that David Bowie passed away and that depressed me even more, and it put me in a mood to watch some of his movies, so I sat on the couch with my new TENS unit (which worked surprisingly well on my abdominal pains, by the way) and watched Labyrinth and The Prestige. It snowed all day so that was another reason it was good to stay in. What a day, though. No sleep and so much blood loss (I did nap but I wasn't able to get a full 8 hours to make up for the missed sleep). I haven't had a day that rough in quite some time and I surely lost more blood that day than I ever have before.

The good news is that the bleeding (I hope) seems to have stopped, and the d has stopped as well (I took a bunch of Zofran to slow things down, which took forever to kick in but finally started working). The abdominal pains are mostly gone as well. So I tentatively am doing okay-ish today but I don't trust it. I'm eating really safe, bland foods and not going to work out for a few days at least. I just need to hold onto my remaining blood until I get a bit stronger! The blood loss made me slightly dizzy (not too bad though) and fairly weak. I had to hold onto the wall when I was showering because my legs were so weak and unstable, I kept feeling like I might fall. Not good, but I am hopefully recovering. Only about another 6 weeks until I can see the colo-rectal surgeon...
 
Cat-a-Tonic said:
Hi Adadzio, welcome to the forum. I'm concerned because you said things got 100 times worse right after the pill cam. Did you/your doctors make absolutely sure that you passed the camera capsule? If it's still stuck somewhere inside you, that blockage or partial blockage could absolutely account for the sudden and dramatic increase in your pain and symptoms. A simple x-ray will show if it's still in you or not. If it were me, I'd definitely be calling the doctor and inquiring about that possibility.
Click to expand...

Thank you! I did pass the capsule; I saw it in toilet day after my test :) In terms of pain, things haven't gotten that much worse, it's just the fatigue and fever and aches that have really increased…so, I think I'm safe from obstruction etc for now.

I'm sorry your bleeding has been so terrible. :( I have yet to experience bloody stool, I'm guessing because my issues are in the small bowel? Not sure. But that really sounds awful and I'm hoping things improve soon. I know the struggle of showering with anemia/low blood pressure. When I was younger I used to have to get out of the shower and lie on the floor (heat is my trigger for fainting, so that was the only way to stop it!)
 
Cat - Oh my goodness! Sounds like you had a rough time! I cannot imagine!

Yesterday the LLQ pain was horrible until I was able to go to the bathroom. After the BM, the pain was pretty much gone. I started to get the pain again today, and went to the bathroom again and it's gone.

I know this is weird, but I can FEEL my bowels moving along and when they get to a very specific part in my left side, it's extremely painful. Like, I can barely sit still painful. It really makes me wonder what's going on in that SPOT.

Today, has been fine. No pain since I went to the bathroom. Interesting.
 
Adadzio, I'm glad that you passed the capsule. I suppose your symptoms could still be due to an (unrelated) obstruction. Aside from that, have you been checked for gastroparesis? It's essentially a condition in which the stomach empties very slowly, causing fullness, discomfort, nausea, etc. It can be difficult to get the calories you need when you have gastroparesis. I'm not sure if that sounds quite like it fits your symptoms either though. I really hope you can figure out something so that you can get enough calories and not feel horrible every day until your scopes.

PaintedElephant, I wonder if you might have a stricture in the LLQ? My main "pain spot" is in the LRQ and I can definitely feel food/stool moving through it sometimes, but not all the time. So I think it's just when my inflammation is active that I feel it? I'm not sure. If you can feel it all the time, then it might be something more along the lines of scar tissue rather than inflammation. Hopefully it's something that they can see on the colonoscopy.

Thanks guys, yeah, the bleeding was really horrendous. I've been trying to eat high sodium foods to keep my blood pressure up - it's normally low anyway (it was something like 95/70 when I saw my GP on Friday and that was before this big bleeding incident). I'm doing okay but still pretty weak and not feeling up to moving around or walking much. So I'm just resting as much as I can. I went back to work today but I work a desk job so at least I can sit for most of my day. I see a colo-rectal surgeon at the end of February, so I'm hoping that she can give me some sort of options. I bleed out my backside pretty regularly anyway, but this was the worst that it's ever been and I can't continue to lose so much blood like this. I'm on steroid suppositories which help somewhat but obviously not enough. I really hope the surgeon can do something to stop this from happening.

The weird part is, when I was on oral steroids (Entocort), I didn't bleed at all. I was on Entocort from Feb 2014 through Oct 2014. No bleeding at all from Feb '14 through Feb '15. Then in March 2015 it came back with a vengeance and has been off and on ever since. It got so bad that in November my iron had dropped really low and I had to go have IV iron infusions. I don't want to get to that point again if I can at all avoid it, but the bleeding stubbornly keeps happening every so often. Bleh. Anyway, like Adadzio said, I just need to survive until my appointment, and hopefully then I'll get some sort of relief from this situation.
 
Cat-a-Tonic said:
Adadzio, I'm glad that you passed the capsule. I suppose your symptoms could still be due to an (unrelated) obstruction. Aside from that, have you been checked for gastroparesis? It's essentially a condition in which the stomach empties very slowly, causing fullness, discomfort, nausea, etc. It can be difficult to get the calories you need when you have gastroparesis. I'm not sure if that sounds quite like it fits your symptoms either though. I really hope you can figure out something so that you can get enough calories and not feel horrible every day until your scopes.
Click to expand...

You know, when all this first started happening, I thought it was for sure gastroparesis…the symptoms really fit well for me!! The problem is that I think my GI would have dx that after my upper GI series. The barium passed from my stomach to my small bowel in only 45 minutes, so it CAN'T be delayed emptying, right? Man, it's kind of twisted to say, but I WISH it had been gastroparesis—then I'd have meds and be done with this pain!!

Today has been rough. No sleep and utterly exhausted. Ate a "normal" size lunch and BOY am I paying for it! :(
 
PaintedElephant, a stricture is basically just a narrowing in the digestive tract, and can be due to inflammation or to scar tissue. Hopefully you don't have a stricture because those can lead to other complications (such as obstructions). I don't seem to have a stricture in my "pain spot" in my LRQ. But like I said, I think mine is just due to periodic inflammation in that area. I'll be interested to hear if they find anything of note in your LLQ.

Adadzio, have you tried gastroparesis meds just to see if they work? My GI tried me on one of them (it's been years and I've forgotten which one, sorry) to see if it'd help me, because I was complaining of bloating although I do not have a diagnosis of gastroparesis. It didn't help me - I tend towards diarrhea, and I seem to recall that whatever med it was just made the d worse but didn't help the bloat, so I stopped it after a short time. At any rate, it seems like some doctors are willing to try those meds out on patients to see if there's any improvement. Might be worth asking about, given your symptoms.

Did you say that you're currently on Levsin? Speaking of meds I tried and failed, that one was a spectacular failure for me. Apparently a small percentage of people who take Levsin get the wonderful side effects of massive nausea & vomiting. Unfortunately, I am in that small percentage. I stopped taking Levsin right away once the vomiting kicked in, but it must stick around in the body for a few weeks after stopping it, because that's how long I was horribly nauseous. That was not a fun time. Hopefully you don't get that side effect! But if you start vomiting out of the blue, you might want to stop taking that med.
 
I haven't tried those meds, but I suppose it would be worth mentioning to my GI. You never know what'll help, right?

Yes, I'm on Levsin. At first I was feeling optimistic about it because it restored a little of my appetite. But now it's doing a splendid job of constipating me further, and I'm back to feeling pretty sick around food… (it's only been a week, soo I'm trying to give it a fair chance!) I'm sorry you had such a horrible reaction! Jeez, our bodies are not super nice to us, are they...
 
Sorry I haven't welcomed the newcomers - so Hiya!!

Cat, I'm so sorry about all the blood loss!

Painted Elephant - I also get the "feeling my bowels move" but most of my pain is in RLQ. I know I have a diverticulum there, so I'm never sure if that's contributing or not, but I swear I feel things entering and then moving through - ugh!

Adazio - if you search on the boards there is a whole thread about preparing for colonoscopy. I found it super helpful before mine.

Kelleh, I think Cat had good advice!

I have an appt with GI today. It's just a follow up from the Xifaxan, but the timing couldn't be better since things have been downhill since last Thursday. I haven't eaten a full meal since then. Just one food at a time, to see how it will affect me. So far, each food either gives me horrible cramps and watery D, or just mild pain and mushy stools. This is sort of how things were before the Xifaxan, but almost worse - or maybe I just think it's worse because things were better for a time?
 
Hi everyone, and hi to the newbies as well! Don't have much advice to give you I'm afraid but I feel for all of you and hope you find some support here.

I'm doing okay. Everything's pretty stable. I'm still pretty sure that my issues are stomach acid/reflux related since I'm okay if I take PPIs and the second I stop my symptoms come right back.

I'm finally all moved in and my contact with health care in this city thus far (so far only an unrelated injury) has been great. Everything's quick and no one has been rude. So that's promising.

Waiting a few weeks until I get settled in but then I'm going to try and get back to trying to get an actual diagnosis. I'm taking it easy though. It's under control and I understand it. If I take my meds and stay away from triggers I'm pretty okay.
 
Back from the appt with GI. He thinks it may be diverticulitis again, but the only way to be sure is with a CT and I have had sooooo many of those, I told him I'd like to skip the radiation if I could. Plus, I think maybe I'm doing better these past few days, maybe? I mean, I am having only 3-5 loose stools, not 5+ watery ones, so that's improvement! So instead of a CT he ordered a bunch of blood tests and stool tests and he is allowing me to wait a couple of days, and if I'm getting better, great! But if I'm not better, off to the lab with me! At the same time, he also mentioned referring me to a surgeon. He feels awful for me that this keeps recurring. And the meds that will treat Diverticulitis will likely just cause me to have a recurrence of C-diff. Not a fun ride to be on. He really starting going down the path of "this could be the root of it all..." but we're obviously not sure yet. He just sort of threw the idea of surgery out there, and I have another follow up with him in 2 weeks so he can keep a closer eye on me.
 
I don't know why I even bother to go to the doctor. At least my gp is honest and says "Ï don't know". All of my specialist just label things. I have so many auto immune problems of an unknown type and cause that I wonder why I am alive. I was at the doctor ( gp) yesterday. I keep a record of my blood pressure each morning when I get up for my nephrologist. Yesterday my blood pressure was 130/88 today it is 152/115. A recent research study shows that bp that alters all of the time short term indicates that I am five times more likely to die of a stroke or heart attack. I asked my gp about it yesterday as the examples of my blood pressure above is what happens every day. His comment was your blood pressure is not bad. I just said not bad for what? He said what do you mean? Well is it not bad for someone not being treated for bp or is it not bad for someone like me who takes five tablets a day for blood pressure? On 5 tablets why is my bp not perfect and what is causing it. "I don't know Ron." There is one diagnostic tool they haven't tried yet.. Autopsy... Ron.
 
ron50 said:
I don't know why I even bother to go to the doctor. At least my gp is honest and says "Ï don't know". All of my specialist just label things. I have so many auto immune problems of an unknown type and cause that I wonder why I am alive. I was at the doctor ( gp) yesterday. I keep a record of my blood pressure each morning when I get up for my nephrologist. Yesterday my blood pressure was 130/88 today it is 152/115. A recent research study shows that bp that alters all of the time short term indicates that I am five times more likely to die of a stroke or heart attack. I asked my gp about it yesterday as the examples of my blood pressure above is what happens every day. His comment was your blood pressure is not bad. I just said not bad for what? He said what do you mean? Well is it not bad for someone not being treated for bp or is it not bad for someone like me who takes five tablets a day for blood pressure? On 5 tablets why is my bp not perfect and what is causing it. "I don't know Ron." There is one diagnostic tool they haven't tried yet.. Autopsy... Ron.
Click to expand...

I'm new here but sorry all the same that you're dealing with that. Sometimes it does feel like beating your head against a brick wall with all these symptoms and doctors and appointments....Between insurance costs and misdiagnoses and all the failed meds…
Hang in there.
 
Oh!! One more thing I found out today -- apparently my home scale may be in need of new batteries. I knew my clothes were fitting differently over the holidays (tighter) than now (much looser) but I didn't put much thought into what that meant as far as weight gain/loss over that time period. Start out to say that I am obese. While my thyroid was low in Nov, I knew I was gaining, but not how much. Now that I've been sick again, I knew I was losing, but again, not how much. According my home scale, I had gained around 10ish lbs, and lost 5, for a net gain of 5. Not so according to the GI scale!! According to their scale (which I happen to trust a lot more than a cheap bathroom version I have) I had gained a whopping 25, ALL of which I have now lost, from November until today, which means I'm right back to where I was in Oct. I didn't realize it because I don't often look at my weight at the dr's office, but the MA checking me in asked if I wanted to know how much I had lost, and I said "yes" so then I got all the #s out of her.
 
Wildmtn, that's significant to gain and then lose that amount of weight in that short of a time period! It sounds like your doc takes you seriously though so I'm presuming your doc will not brush off that gain/loss. Do you think it's all due to your thyroid, or possibly to the gut issues/diverticula as well?

Speaking of weight loss, I've lost 4 lbs this week myself. I've felt so awful and have had little/no appetite, plus of course there's the correlation that every time I poop, I tend to lose more blood, so between not wanting to poop and not having any appetite, I just haven't been eating hardly at all. Yesterday I literally had a piece of string cheese and about 4 cookies, and that was all I ate the entire day. Not good! I think/hope the bleeding has *finally* stopped, so I'm going to slowly start eating a few more calories day by day and see how that goes. I do actually have a slight appetite today so that's promising.

I feel like I've hit a brick wall with my GI, though. I emailed him yesterday in a panic because I was so weak and exhausted from the blood loss. I basically just asked him to help! I need help, please help me! The bleeding needs to stop already! So he called me and he was like, let's do another flexible sigmoidoscopy. Um, what? No! I don't need more damn scopes, we know the cause of my bleeding, it's been verified repeatedly (it's always internal hemorrhoids, for some reason mine just bleed like crazy and take forever to go away and recur frequently). What I need is help - more meds, different meds, some way to feel better - not just another scope. But all he wanted to do was a scope, no med changes (he did tell me to try stool softeners - um, again, no - diarrhea is my biggest bleeding trigger, when I'm constipated is when the bleeding tends to stop, so stool softeners aren't going to help me!). Seriously, I'm just so frustrated. Yesterday was a horrible day, I freaked out and was ugly-crying (like uncontrollably sobbing) in the morning to hubby. I said some things to hubby along the lines of, if my body is trying to kill me, I wish it'd just finish the job. Don't get me wrong, I don't want to die, but I was so frustrated and just at my breaking point yesterday. I can't stand this bleeding anymore, it affects me so much both physically and mentally. It's stopped, for now, but it'll be back within days or weeks. It always comes back. I guess the good news (?) is that I see my GI in early Feb, so part of me hopes that by then I'm bleeding again and I can have him do an anuscope in the office if he wants to see up my ass again so badly.
 
Oh, Cat, this is all so difficult, I'm so sorry you feel at a dead end with your GI!

Yes, my GI is definitely taking me seriously. He was concerned about the loss being GI related, and the gain from thyroid. Which makes the loss really disconcerting, to me! I mean, the gain is, too - but I have never really lost weight without trying, and to lose this much, this fast..it's just sort of creepy. He went so far as to tell me that he would support a trip to the ED if things get even a bit worse before I see him next (in just 2.5 weeks).
 
Ron, I'm surprised that your morning bp is that high, too, but I don't know enough to know what I don't know (if that makes any sort of sense). I'm sorry the doctors don't seem to be of any help.
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
953
ras96mg
R
C
Your thoughts, please. 10 yr old.
Replies
9
Views
517
Maya142
Maya142
N
Advice on diagnosis
Replies
1
Views
970
Scipio
Scipio
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O

Latest posts

Back
Top