- Joined
- Jan 29, 2016
- Messages
- 5
Thanks Ron! Looking forward to getting to know all of you.
Good luck, Adadzio! I hope you enjoy your big lunch! And of course I hope the scopes go well and that you get some worthwhile results!
Hi Angela1435, welcome to the forum. Your onset of symptoms sounds really similar to mine - I was a similar age (30) and mine also happened at a high-stress time (I had thought I was going to lose my job because they were doing a lot of job cuts at my company, it turned out I didn't get laid off but basically the rest of my department did get let go so I had survivor's guilt plus tons of extra work because somebody still had to do everything). Stress isn't the cause of IBD (Crohn's/colitis), but it can trigger flare-ups, so I think that's part of what happened with me, the stress helped set some underlying things in motion.
Out of curiosity, how high was your CRP? Have they done any other bloodwork on you? What about stool tests, have they checked your fecal calprotectin? I wish you lots of luck with the colonoscopy next week - please keep us posted on how everything goes! And let us know if you have questions about the scope or the prep.
Random question for everybody: Anyone else have a lot of sinus issues? I have had tons of sinus issues all my life and I guess I really have no idea why. I broke my nose when I was a kid and it never healed right, so I've always blamed my sinus issues on that, but honestly I have no idea. I get a lot of sinus migraines - in fact, I complained about that to my GP the other week and he did a sinus CT scan on me, but it came back totally normal, so I still have no answers. I ended up with a horrendous sinus migraine on Wednesday and I'm just about over it now, but my sinuses are still stuffy and weird. I've been blowing my nose a ton since the onset of the migraine, and I must have been blowing my nose too hard or something? Because I got a horrible nosebleed this morning! Literally, the worst one I've ever had, I wasn't sure that it was going to stop bleeding and I was saturating tissues with blood. Not a fun time. It seems to finally have stopped bleeding, but it was slightly scary for a bit. Anyway, I forgot where I was going with this, I guess just interested to see if there might be any connection between sinuses and my other health issues, or if anyone else has similar sinus issues and what, if anything, you do for your sinuses.
Also, ha ha, I finally stopped bleeding out my ass, so I guess I had to start bleeding out some other hole! Maybe next I'll just start bleeding out my ears or eyeballs or something. So ridiculous. It's like my body hates having blood and wants to get rid of it any way it can.
Izzie, wow, thank you for the nosebleed info. That sounds awful! Fortunately my bleeding stopped after 20ish minutes and I didn't have to call for help, how horrible that it got that bad for you. It's my left nostril and I will keep a close eye on things. For now it's stopped and I'm just going to leave my nose alone for awhile no matter how sniffly I get! I'm hoping it's just a combination of, my sinuses are messed up from the migraine, plus the winter air is super dry. Hopefully it's nothing worse than that for me. I'm glad to know that there is at least one treatment option, although cauterization sounds painful and unpleasant too.
Wildmtn, if it were me, I'd be going to the ER or urgent care to get some tests done right away. Maybe if they do tests while it's this bad, they can catch whatever the cause is. Can I ask, does your stool have a weird smell? I have a friend who is a CNA in a hospital, and he's described c diff stools as having a sickly-sweet smell, "like sweet and sour chicken that's gone bad". That's my little tidbit of knowledge about c diff. I really hope it isn't c diff for you. But if it is, do look into fecal microbiota transplants - they have a high cure rate for c diff and little/no side effects (the standard front-line treatment for c diff is harsh antibiotics which obviously do have side effects). Good luck! Please keep us posted.
Cat, it seems like lots of days I have issues with my sinuses.Good luck, Adadzio! I hope you enjoy your big lunch! And of course I hope the scopes go well and that you get some worthwhile results!
Hi Angela1435, welcome to the forum. Your onset of symptoms sounds really similar to mine - I was a similar age (30) and mine also happened at a high-stress time (I had thought I was going to lose my job because they were doing a lot of job cuts at my company, it turned out I didn't get laid off but basically the rest of my department did get let go so I had survivor's guilt plus tons of extra work because somebody still had to do everything). Stress isn't the cause of IBD (Crohn's/colitis), but it can trigger flare-ups, so I think that's part of what happened with me, the stress helped set some underlying things in motion.
Out of curiosity, how high was your CRP? Have they done any other bloodwork on you? What about stool tests, have they checked your fecal calprotectin? I wish you lots of luck with the colonoscopy next week - please keep us posted on how everything goes! And let us know if you have questions about the scope or the prep.
Random question for everybody: Anyone else have a lot of sinus issues? I have had tons of sinus issues all my life and I guess I really have no idea why. I broke my nose when I was a kid and it never healed right, so I've always blamed my sinus issues on that, but honestly I have no idea. I get a lot of sinus migraines - in fact, I complained about that to my GP the other week and he did a sinus CT scan on me, but it came back totally normal, so I still have no answers. I ended up with a horrendous sinus migraine on Wednesday and I'm just about over it now, but my sinuses are still stuffy and weird. I've been blowing my nose a ton since the onset of the migraine, and I must have been blowing my nose too hard or something? Because I got a horrible nosebleed this morning! Literally, the worst one I've ever had, I wasn't sure that it was going to stop bleeding and I was saturating tissues with blood. Not a fun time. It seems to finally have stopped bleeding, but it was slightly scary for a bit. Anyway, I forgot where I was going with this, I guess just interested to see if there might be any connection between sinuses and my other health issues, or if anyone else has similar sinus issues and what, if anything, you do for your sinuses.
Also, ha ha, I finally stopped bleeding out my ass, so I guess I had to start bleeding out some other hole! [emoji14] Maybe next I'll just start bleeding out my ears or eyeballs or something. So ridiculous. It's like my body hates having blood and wants to get rid of it any way it can.
Well, I am returned from the clinic and feeling pretty disappointed. Everything went smooth with the scopes but the problem is I have no idea what my GI said to me, I don't remember anything at all. My dad relayed some of it, but he never thinks my health issues are even mildly concerning.
So, this is all coming from him:
GI removed some polyps and they are in the lab, but other than that everything looked normal. The mucus/bleeding is not a concern to them, and no one seemed concerned that my small bowel is distended with abnormal structure (distal ileum to be exact, as found w/ the barium x ray).
In my dad's wonderfully frustrating words: "There's nothing wrong with you."
So, diagnosis: IBS. Treatment? Basically, I need to take fiber and exercise and eat better/regular meals. The sedation meds are still messing with me, but damn..I am somewhat amused by it all. I'm supposed to eat more regularly and take care of myself, and everything will magically get better? How can I do that, when the whole reason I don't eat is because I lost my appetite a year and half ago and no one knows why and the experience of eating now gives me anxiety? It's pretty tough to "take better care of yourself" when your body rejects food, your body is covered in bruises and joint pain, and the pounds are constantly dropping off.
It's a vicious cycle, I will tell ya. I'd like to see what my GI tells me at my followup. But I'm feeling pretty discouraged. It's not even the IBS diagnosis. It's that I literally don't have to energy to care anymore about being underweight and non-functioning. I'll suck it up and deal with it, if it means I don't have to deal with this medical BS anymore!
It seems like it is all year round. I will be glad when we get closer to spring because the remnants of the blizzard have not been easy.Izzie, that must have been terrifying for your mother! Thanks for the tip, I will make a note to use an ice pack next time. This happened right as I got to my desk at work so all I had handy was some tissues, but there are ice cubes in the fridge at work so I will grab some and make an ice pack with ice cubes and a paper towel if this happens at work again. I'm also going to look into those gauze and sponges you mentioned - if they're not too pricey I think I will get some just to have in my first aid kit. Better safe than sorry, right? Thanks again for your help!
Ronroush, good to know I'm not alone. Are your sinuses just bad during winter, or all year round? It seems like mine are bad all year round. I don't know why since my CT scan was normal. It's just frustrating.
Anybody else REALLY happy that January is almost over? This month has been awful! I've bled out my ass more than I ever have before, and I've now bled out my nose more than I ever have before. My body has jettisoned more blood this month than at any time in the past. I really hope February is better than this month has been. Sheesh.
Adadzio, I'm so sorry to hear you didn't get any answers today. How frustrating! I wish I could say something to make this suck less. What I can say is that I've been there and I know how crappy a feeling it is, to know that there is something very wrong but to be told that you're fine and normal. You just want to scream, I am not fine!!
With your mention of the distal ileum, it sounds to me like you've got some involvement with your small intestine which they just aren't able to really get to (only the very beginning and end) with the scopes. So, I do encourage you to pursue further testing. It's not easy to visualize the small intestine - double balloon endoscopy, pill cam, or MRE (MRI enterography) are your best bets. When is your follow-up with your GI? Hopefully he's a good enough doctor to know that normal scopes don't necessarily mean that it's automatically IBS. Push your GI for further tests, let him know that you're suffering and that it's not acceptable to brush you off with the old "eat more fiber and you'll be fine" line.
And seriously, I'm ranting now, but fiber is *not* a cure-all. I have psyllium husks and oatmeal every day plus I exercise regularly, and all that fiber and exercise certainly hasn't cured me (they do help somewhat, but it's naiive to presume that a person's ailments can magically go away with some fiber and gym time). And if you have active inflammation, fiber is going to make things worse and could even cause a blockage. It's because of insoluble fiber that I started bleeding out my ass in the first place. Just, ugh. I'm seriously frustrated on your behalf. I've been there myself and it's so ignorant of medical staff to brush things off as IBS and to also propose fiber as a cure. You don't lose that kind of weight with IBS, for one thing, and it doesn't impede your ability to eat to that degree. There's clearly something else going on and I really hope you can get some proper answers, soon.
Do you have a plan for right now? Sometimes it helps to play the role of the compliant patient. Try some (soluble, in small amounts) fiber and some mild exercise if you can, just so that you can report back to your doctor that you've tried and failed to magically be cured via those methods. If your doctor is halfway decent, they should then come up with a new plan (medication trial, more tests, etc) which is hopefully much more helpful.
Oh, one more thought. Did they take biopsies? There's always the chance that the biopsies might show something. I don't want you to get your hopes up, because in my experience my hopes always get dashed by normal test results, but it's possible they'll find something.
Adadzio, tissue biopsies should be from your intestinal mucosa, meaning not from the polyps. So that's good, hopefully something there will provide a worthwhile result. Keep us posted on the biopsy results and also on how you're doing while playing at being a good, compliant patient. How's the fiber thing going?
Hope the best for you.Hi everyone. So my colonoscopy is tomorrow. I take a laxative in an hour and then miralax and Gatorade an hour after that. Then more miralax and Gatorade in the morning. Not looking forward to any of it. Still having d and cramping. Also have had a low grade fever off and on the last few days. I'm not too optimistic they will find anything tomorrow after reading all the posts. But I can hope right? I just want some kind of answer. :/
Kelleh, how did the trip to London go? I'm with you on having a rough weekend, although I recovered enough that I was able to go to the gym today. I hope you feel a little better tomorrow! Are you going back on the low-fodmap diet? It sounds like it might have been helping if you're suffering since you came off the diet?
Hey all! Haven't been on in awhile.
Was supposed to have my colonoscopy/Upper on 1/25 but we got three feet of snow and I had to reschedule! It's now scheduled for 3/14. My symptoms have died down a lot and I haven't had much if any pain lately. I almost didn't reschedule my procedure. I'm pretty sure they will find nothing, but I thought, well, I might as well do this.
That's a long time to wait! Good luck to you thought. Are you having a full colonoscopy? It's better to have it done rather than not and continue in pain at a later date. It's good to at least rule something out. Just make sure they take biopsies!
Also called Levsin. Wish you the best.So the colonoscopy didn't turn up much. He did find two polyps which he is going to biopsy but other than that my colon looked great. He did say it was weird to find polyps in someone my age (32). But otherwise he is treating me for IBS. He prescribed something starts with hy but can't remember the name. I haven't picked it up yet. I'm kinda let down. I was hoping there would be an answer. But not surprised. :/
I know I'm having a colonoscopy. Not sure what a "full" one means?
They are also doing the upper part too.
It was me who elected to have it in March, instead of sooner. I have too many things this month on the weekends and can't dedicate a sunday to sitting on the toilet all day. I haven't been in nearly as much pain so I figure it won't hurt to push it back. In fact, I'm still paying for my CT scan which was completely normal. :yrolleyes:
Best to you.Update: called GI. Nurse is getting in touch with him as we speak and will call back shortly. She thinks he'll just want to run stool samples and have me stop the antibiotics, but of course that's all up to him.
Sometimes I feel food is my enemyWish I had any words of advice for all of you but alas all I can offer is support. I hope everyone's alright!
I'm still having a lot of reflux issues, but at least I can go to work and classes without too much trouble. Getting a belching episode in the middle of class isn't fun, though.
Cat, I too feel much better when I hardly eat anything. Though in the long run that's hardly a solution.
Hope you don'tYeah I want answers. My GP mentioned the possibility of me having to do another gastroscopy and I'm just like UGH I don't want to.
Each time I've done it it's like... I get through it, and I honestly don't remember with any kind of clarity what it's like I just know that it's the worst. It's like my body remembers it like this icky horrible trauma while my mind is like "not a big deal". So I'm hoping I don't have to. But we'll see.
Painted Elephant -- SIBO was suggested for me. I never did have a breath test, but was put on Xifaxan as a trial anyway. My GI honestly thinks the breath tests (there are two, one uses lactose, the other glucose) can give false results and he doesn't trust them. He goes off of clinical symptoms, and some of mine seemed to fit, so he basically said "we can try, if it works, great! If it doesn't, we move on." On the up side, I *did* feel better while on Xifaxan. Had normal stools, less pain, etc. But shortly after coming off of it, things started to get bad again, and now here I am, waiting for a call back and afraid I may have C Diff from two different antibiotics (but my issue may have been "simmering" diverticulitis all along?). I had also trialed a low FODMAP diet for a full month, and that really didn't help. I wasn't up for the SCD diet, and Xifaxan exists...so that's where we went.
I figure it can't hurt to explore this route while waiting for my scopes.
I think that makes sense. Some people with SIBO have a great response to just the low FODMAP diet, and that is much less restrictive (though weirder in food options, imo) than SCD, if you wanted to start somewhere.
PaintedElephant, I have no experience with SIBO testing, so I can't comment on that. But I feel for you on the hemorrhoid! Your first one, poor thing. I remember, I named my first hemmie. I named it Herbie, because it felt like it was about the size of a Volkswagen. Hah! I've had about ten zillion hemmies since then, some of which bleed like crazy (the internal ones) and have given me nothing but trouble over the past year especially, so I really hope that for you, it's just one and done and you don't get any more.
Oh, and since we're in the US, we don't have very good options for hemmie creams, unfortunately. Tucks used to be my go-to hemmie cream, but they stopped making it (I literally cried when I found that out). Now all I can seem to find in stores is Prep H, which frankly sucks. Prep H does nothing for my hemmies, absolutely nothing. There are a few things you can try, though. For me, I have ordered Anusol which is a hemmie cream made in the UK - it takes a few weeks to get here, but I find it's about as good as Tucks was in terms of shrinking and healing the hemmie. You could also try the vitamin E hemmie treatment. It's messy, though. What you do is, get a bottle of vitamin E gel capsules, but don't take them orally. Take a pin and poke a hole in one of the capsules, and squeeze the contents directly onto your hemmie. Do that at least once per day, more if you end up wiping the gel off if you're using the bathroom a lot. That's worked okay for me in the past. You will want to wear a pad, though - the gel inside the capsule is pretty greasy and will ruin your underwear and/or pants if you're not wearing a pad to shield your clothes from the gel (I speak from experience, I ruined a nice pair of pants myself doing the vitamin E hemmie treatment). Another thing to try is a sitz bath, with epsom salts. Although frankly I haven't had a lot of luck with those doing anything for me. The main thing is, keep the hemmie area clean and dry, try not to wipe too much or you'll irritate it even more, and try not to strain when you're using the bathroom, oh and don't sit on the toilet too long either as that puts pressure on the hemmie area and can make it worse. I hope that helps. And I hope the darn thing goes away soon!
Well, GI agreed to breath test! Next Friday at 8am.
Good luck, PaintedElephant! Let us know how it goes. And if it were me, I'd hold off on starting any new diet until after the test - you don't want the results to be skewed because of a sudden, drastic diet change (I'm not even sure if it could change the results so quickly, but better safe than sorry).
PaintedElephant, my mother is sort of the opposite - when I got sick, she invented an illness for herself as well. When I first got sick, the doctor said it could be something like Crohn's or Celiac disease, so I relayed that information to my mom. She then talked to some weird distant cousin or something, and the cousin apparently has celiac. My mother became convinced that, because there is celiac in one branch of the family tree, that I must have it and also that she must have given it to me, so she has it too. So she started telling everyone that she's got celiac and she went gluten-free and all that. She never had any symptoms at all, by the way. She got my cousin and aunt to go along with her on the gluten-free bandwagon as well. She was extremely vocal about it with zero evidence, she never saw a doctor nor was tested for celiac (nor was my aunt nor cousin). So, fast forward in time, I've been tested multiple times for celiac (blood test plus several upper endoscopies w/ biopsy, which is the gold standard for diagnosing celiac) and I definitely 100% do not have celiac, and gluten has never been a trigger food for me - but my mother (and aunt and cousin) is still convinced that she has celiac and she talks a lot about the things she "can't eat" and she's still of the opinion that if I just gave up gluten, that I'd have perfect health forever. Therefore I'm making myself sick, because I still eat gluten. Ugh, so yeah. There's both victim blaming and hypochondria or munchausen's or whatever it is when you make up an illness and stick to it. She's a little nuts.
So yeah, my relationship with my mother is really odd. She does that stuff, but she also spends a ton of money on me sometimes (she's taking me to Japan in a couple months, she's paid for the airline tickets and the hotels and the train passes and she's rented us cell phones and all sorts of very expensive stuff). It's weird. So these days I just try to steer the conversation towards Japan and away from gluten. It's going to be slightly hilarious being in Japan, though. My mother avoids soy as well, so no soy sauce and no miso soup, and obviously nothing like noodles for her, and she also said she's not going to eat anything raw like sushi. Soooo, she's going to eat pretty much rice? Meanwhile, all of those things sit really well with me - rice, fish, sushi, noodles, miso soup, soy sauce - I can do all of that just fine. So I'm going to be eating my way through Japan while she nibbles on her rice. You gotta find the humor in these situations sometimes!
Oh, and my cousin who went gluten-free? She goes on like 8 vacations a year, and she eats tons of gluten on every single vacation. She's one of those annoying people who takes a photo of every meal she eats and posts them all on facebook. So one time I called her out on it, she posted a photo of a croissant and I commented, "Doesn't that have gluten? Should you be eating that?" She responded that it was a French croissant, and French dough has less gluten than American dough. Um, so then yes, it does have gluten. I don't think my family even understands how celiac disease works - you can't have "just a little" gluten when you're on vacation. If you have actual celiac disease, you can't so much as have one molecule of gluten or you'll become very ill. So yeah, this is the kind of thing I put up with. I'm horrible because I eat gluten, but my cousin is fine because she "only" eats gluten on vacation. Uh huh, sure.
No c diff!! But also no answers. I'm being released with instructions to try peptobismol, keep drinking
No c diff!! But also no answers. I'm being released with instructions to try peptobismol, keep drinking
PaintedElephant, at least your mother bothered to be tested. I'm the only person in my family who has been tested for celiac (and I definitely don't have it). But there are 3 people who have self-diagnosed themselves with it, and my mom has even taken the step of diagnosing other people with celiac (she thinks my uncle, who clearly is in the early stages of dementia, must have celiac which she thinks somehow is in turn causing the dementia... um, no).
As for the mucus - everyone, even healthy people, produce mucus in their digestive tract. It helps the stool slide through. The digestive tract actually is very similar to the sinuses, in a way. The intestines not only produce mucus (I believe that's why the lining of the intestine is called the mucosa), but they also contain a lot of histamine receptors. And, because of that, some digestive conditions respond well to allergy medications. So, this sounds weird, but if the mucus persists or is worrying to you, you might want to try something like Claritin! It doesn't work for everyone, but it does actually help some people. It doesn't seem to help me, although I don't have a lot of mucus these days (I definitely have in the past though so I understand how weird it is). Mucus in the stool honestly isn't super worrying by itself though. It could be anything from allergies to IBS to IBD to just eating something that didn't agree with you, which is why most doctors don't pay a lot of attention to that particular symptom by itself. But yeah, I agree it is weird and disconcerting to look in the toilet and feel like your butt just blew its nose.