Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

PaintedElephant, I don't know a lot about SIBO, but I thought the SIBO-specific diets have an end date? Like, you do the diet for a bit and take care of the bacterial overgrowth, then you can start slowly adding in foods again? Maybe I'm mistaken but I didn't think it was a long-term commitment to a diet. I feel for you on the low carb thing - my hubby tried to jump on the low carb bandwagon (he's just trying to lose weight not treat any medical issue) so I tried it briefly too, and it made me SO TIRED. I definitely need carbs to function. How much protein are you allowed to eat on these diets? Maybe you could make up for the lack of carbs by eating more protein?

I'm going on vacation in April as well, and I'll actually be at Tokyo Disneyland for a day, so I feel for you! I've already been looking at menus to see what I can eat there. I'm not on any specific diet, but I tend to avoid lots of things (beef, pork, dairy, nuts, seeds, coconut, garlic, onion, etc) so I'm a bit leary of what I can eat there too. Weirdly I can do lots of Japanese foods just fine, but at Disneyland they seem to have more Western stuff like steakhouses and burger joints and pizza places, and I can't have any of that.
 
Okay so I really don't want to complain here, but if I'm not kept awake all night by reflux, it's joint pain. Currently have such a bad pain in my leg (concentrated in the hip, knee, and ankle joints, and then kind of radiates between there) that I want to vomit. It's 2 am and I have a test this morning at 8.

Making it through school with chronic illness is HARD! Near impossible even. And my professors are big on attendance and don't want to let me make things up that I've missed. "Just attend for the rest of the semester" - like... I get it, but the problem is sometimes I really can't. I've had this joint pain since I was a child and no one can ever figure out what it is. "Hypermobile joints" they say, but then I never get any help. Should probably be pursuing diagnosis for that too but I'll start looking like a hypochondriac or something.

I put a lot of pressure on myself to succeed academically and this illness has set me back at LEAST a year, and I was already behind because of ADHD and such. Starting to think I'll never "catch up" to my peers.

Which is fine, except work and school are kind of my only social outlets and I really do need people around me to be happy.

Oh well, it could be worse, the reflux has behaved somewhat today so that's nice.
 
Izzie - I know how hard it is to keep it together and manage to study or work while feeling terrible!

I am officially under performance improvement management at work - I have been at my current work place for almost 12 years and apart from some initial issues I have been on the high performing side rather than underperforming. The last couple of years, especially last year, have been incredibly tough to keep going! I am struggling to find a way to get through the pain and fatigue which impacts my concentration significantly (anaemia doesn't help either). I am so hoping next weeks colonoscopy will find something and I can get the treatment I desperately need!!
 
So, my latest bloods have been posted to my medical records and I was scanning them when I noticed some things they never mentioned to me. Aside from very low ferritin and vitamin D, I have elevated monocytes and lymphocytes (I guess they're a kind of white blood cell?).

I didn't think much of it, could be a virus or something right? What's weird is I then went back through all my CBC in the past year and was surprised to see elevated monocytes and rising on each blood test over a 9 month period. I'm sure it can't be that concerning if they failed to address it 4 times…I'm just a little frustrated it was never mentioned to me.

Anyone know anything about WBC—is this a cause for concern? I just don't know if I should call my doctor about it or ignore it. Or maybe mention it to my GI at next appointment? I'm sure I already seem crazy to them, lol.

Neutrophils Absolute 2.58 x10(3) uL (normal range: 1.30-6.70 x10(3) uL)
Lymphocytes Absolute 4.37 x10(3) uL (normal range: 0.9-4.00 x10(3) uL)
Monocytes Absolute 0.83 x10(3) uL (normal range: 0.10-0.60 x10(3) uL)

Neutrophils % 32.1 % (normal range: 40-70%)
Lymphocytes % 54.4 % (normal range: 20-40%)
Monocytes % 10.3 % (normal range: 2 to 8%) <— last month this was about 11% in the ER
 
Adadzio they are only slightly above the reference range. Wbc are elevated with infection or inflammation. If it was me I would wait until I was at my next DRs appointment. If drs were concerned they would be in contact with you about it.
 
Reflux is such a silly thing. I bent down to get laundry out of my washing machine and whoops - sudden intense reflux happened.

Like, will I ever be able to do a friggin situp again in my life?!

In other news I've been using an app to track calories and macros for a few days and whoahhh is it interesting. I've been eating a LOT more carbs than I think I do. Like, way too much. So I'm going to change my diet up a little bit to see if it helps. I don't like keeping track of my food because I spent a huge chunk of my teen years obsessively counting calories, but I feel like I can handle it.
 
Hi Cat, usually I see a different GP who is much more helpful, just this one was a locum as it was an urgent on the day appointment rather than routine, so I didn't get to pick who I saw. But I'm seeing the GP who so far has been the most helpful on 11th March to talk about a second opinion. Today in the post I got the date for my next follow up appointment and I'm sort of hoping by the time it comes around I will have the ball rolling to see someone else.

I agree that if it were IBS I wouldn't be losing weight, although I do worry that it's just because of my low appetite and lots of nausea, but then when I have a good spell and eat better I don't really put weight on, or at least not in any significant way. But then, what's causing the nausea and low appetite?

I think I'm just so confused because from symptoms I was sure I was heading for a Crohn's diagnosis, but my blood and feacal calprotectin tests have all come back normal, aside from the vitamin D deficiency and low IgA. Then the colonoscopy with the bit of inflammation and congestion in my TI but the biopsy results there being normal, yet my large intestine had mild non specific inflammation on the biopsy. Like, what the hell is all that about?! I feel a bit like with all that surely there is enough going on to warrant further investigation, but the GI obviously doesn't.

Also day two of buscopan and so far I can't say I've felt any better, I think partly because of course my pain randomly varies anyway, but like I've always said, I don't feel like it's a crampy pain. I feel a bit off while it's in my system, a little dizzy and spaced out and queasy. I will persevere though so I can say I tried it.

Painted Elephant - don't apologise for having a bad day, the SIBO diet sounds so tough. How long do you have to stay on it?

Izzie - I'm sorry you're having so much trouble with school. With the hypermobility have you been tested for EDS at all? One of the variants can cause gastrointestinal problems commonly, it could be worth a look into?
 
Hypermobility can happen with a lot of illnesses/disorders. I sometimes think I might have Asperger's, and I know that both bowel issues and hypermobility are really common with Asperger's. (I have some hypermobility, especially in my knees and elbows - they bend way farther than they should, like when I straighten my arms out they keep going past the point of straight and sort of bend backwards a bit.) And if anybody remembers BozzyLozzy, she's got hypermobility related to her Chiari malformation and she also seems to have IBD (her IBD and Chiari seem to be unrelated to each other). I also have a friend who had a very premature baby, the baby is now a year old and she's got very hypermobile joints which are apparently related to her prematurity. So yeah, hypermobility can happen for a number of reasons it seems.

Izzie, I'm that way with reflux when I have to bend over forward repeatedly. Shoveling snow is the worst! To answer your question, I don't do a lot of abdominal exercises, no. But I find exercises that put constant, steady pressure on the abdominal area are easier on me than squeeze, relax, squeeze, relax, repeat - all that squeezing sends stomach contents up my throat super fast and sometimes violently. So I do planks instead of crunches or sit-ups. If you haven't already, you should try planks, it should be somewhat easier on your reflux. Here's an image of a plank that I pulled off of google - just hold this position as long as you can (30-60 seconds) and don't let your pelvis drop towards the floor, keep your body straight.
Bridge-Plank-on-Elbows.jpg


Adadzio, I don't know much about that specifically, but generally speaking, presence of white blood cells typically indicates infection or inflammation. If you're concerned, call your doctor and ask for more information about that - they should be able to tell you over the phone what your test results mean.

Lorikeetie, good luck next week with your scope! I hope it gets you the answers you're looking for. Keep us posted on how it goes!

As for me, I see the colorectal surgeon tomorrow morning. Still not entirely sure what I even want to ask her - I don't want surgery, I do okay as long as I'm on the steroid suppositories but they aren't a long-term solution obviously, so I guess I want some magical long-term solution that isn't steroids and isn't surgery. I don't think such a solution exists. I just want to not bleed out my ass anymore. I feel like that isn't asking a lot, but at the same time it feels like an impossible task because all I've done for a year now is bleed out my ass. I just don't have a great feeling about this appointment, and a big part of that is because my GI has basically hit a dead end with helping me in this regard and all he can do is prescribe more steroid suppositories (he wrote me a year's worth of refills!). So if he's hit a dead end, I don't know that she's going to have any new ideas for me. And since this colorectal surgeon is, well, a surgeon, and I don't want surgery, I'm thinking this is going to be a dead end. Going to try to head into the appointment with an open mind but I'm really not hopeful. I'll update you guys after I've had the appointment tomorrow.
 
Cat, I hope your appointment goes well, even if you don't think it'll amount to much! It really shouldn't be too much to ask to not have to bleed out your butt constantly, to be honest.

Oh and thanks for the tip, that one's worth a shot! I've been trying to be more active.

I haven't been tested for EDS, no, but I'm both knock-kneed, possibly have an autism spectrum condition, several people in my family have arthritis AND I was a premature baby, so. Could be any number of things that's causing pain and hypermobility really. Still it'd be nice to know for sure, since it causes me a lot of pain on occasion.

Still, today was a good day. Decided not to go to school since I was up all night and instead just puttered about at home, making lunches for my work-weekend and playing with all the pretty things I've bought to make myself feel better this week :p I bought perfume and two of the Urban Decay Naked eyeshadow palettes. So pricey but FUN.
 
I was premature too, thanks to my mum's (at the time undiagnosed) lupus. My stomach valve wasn't fully formed when I was born so every time I had a feed I had to be kept upright for a certain amount of time or it all just came back up, my mum said I was like a teapot. I think that's why I still get some reflux, but omeprazole mostly controls it for me so I'm lucky.

Glad you had a good day Izzie. I am another who buys nail varnish to cheer me up when ill, although I rarely end up actually getting around to painting my nails haha.

Cat am I right in thinking hemmies are a big problem for you? If it's hemmies causing a lot of the bleeding they may have referred you to remove them, although sometimes they can be done with the banding during colonoscopy, sometimes they have to do them surgically. I hope the appointment goes well for you!
 
Izzie, good luck with your exercising! My advice is don't do too much at first - listen to your body and do what doesn't hurt or doesn't cause symptoms, and then gradually ramp up the intensity and difficulty and amount of time you exercise from there. For example, I love lifting weights. When I first started, I was only going to the gym 2x per week, lifting very light weights so as to not make my body too angry. That went well so then I moved up to 3x per week and started increasing the amount of weight that I was lifting. Now I lift weights every other day and I lift as heavy as I safely can (while still maintaining form). On the days I don't do weights, I try to do something else active, even if it's just walking with my dog. Sometimes I go on bike rides or go ice skating (depending on what the weather allows for!).

My tips for sticking with exercise in the long run - you have to find a workout that you find to be fun! If it feels like work and you have to force yourself to do it, obviously you're not going to stick with that for long. I'm lucky in that I love lifting weights and I do find it to be fun - I feel kind of like a superhero in the gym, as corny as that sounds. It's like, most of the time I feel like I'm sick girl, you know? I have to always keep my illness in my mind, pay attention to what I'm eating and how I'm feeling and remember to take my meds and my supplements, it's always on my mind in some way and I can never forget that I'm sick girl. Except when I'm in the gym. When I'm lifting weights, I'm paying attention to form and reps and how my muscles are feeling, and I can forget for a little while that I'm sick girl. It's like I transform into healthy girl! In the gym I'm strong and awesome and feel great and don't have to think about being sick. That's why I love lifting weights so much. :)

So yeah, find something that you find to be fun and can stick with. I find that I enjoy trying a variety of different types of fitness. I got some snowshoes, although we hardly had any snow this winter and it's already all melted, but during snowy times I can go on snow-walks with my dog and it's quite fun and surprisingly easy on my joints. I also got myself some new ice skates a couple years ago, and I love heading over to the local ice rink on my lunch break and getting a skating session in. I also loooove bicycling - I got a beautiful new road bike last year and I adore going on bike rides. My favorite workout ever, actually, is to ride my bike to the gym, lift weights at the gym, then ride home. It's about 3 miles from my house to the gym, and it's all bike path so I don't have to ride on busy roads, so it's just perfect - I get a nice cardio warmup on my ride there, I get my full weights session in, then I ride home a bit slower and take in the scenery, and that's my cool-down.

Other tips for sticking with exercise or for enjoying exercise? I find that having a good music playlist is essential. I am constantly tweaking my workout playlist because having new, peppy music keeps me pumped up in the gym. And I think you said you just bought some new workout clothes? That definitely helps me as well, I love having new cute things to wear to the gym. New workout gear, whether it's clothes or equipment (like my previously mentioned new ice skates, snowshoes, and road bike) motivates me to wear those clothes and use that equipment.

Oh, and my last tip (sorry this has become so long, I'm obviously obsessed with exercise! :p ). Plan out your workouts ahead of time. I try to plan a week ahead - so for me, today is a rest day. Tomorrow I'm heading to the gym after work for weights. Friday I'm going to do some cardio on the stationary bike in the gym. Saturday, the weather is looking to be really nice and I'm wondering if I can do a bike ride to the gym for my favorite workout (if the weather isn't nice I'll still go to the gym for weights, just in my car rather than on my bike). Sunday will be a rest day I think - I'm seeing my grandparents that day, so if it becomes a stressful visit, I will take a walk afterwards to de-stress. Monday will be weights again. And so on. As long as I have a plan for what I'm doing that day, that makes it really easy to stick to the plan. If I am not sure if I'm going to work out or not that day, odds are I'll allow myself to be lazy and skip the gym. But if I've already made a plan and told myself that I'm going to the gym that day, then I tend to stick to it.
 
Sarah, yes, I've had a ton of recurrent hemmies, the internal kind that bleed a ton. They made me anemic and I even had to have iron infusions a few months ago because of how much they have bled. I don't know if banding or surgical removal would help me at all, because my pattern goes like this: I'll get a hemmie, it'll bleed and bleed, I go on steroid suppositories and it heals, then I come off the steroid suppositories, then a week or a few weeks later I form a new hemmie and things start all over again. It's never the same hemmie twice from what we can tell - my GI has seen evidence of healed and healing hemmies on my scopes, so it's not like I've just had the same one problem hemmie this whole time.

So yeah, I don't know. For the time being I'm just staying on the steroid suppositories for a couple months, until I get back from my Japan trip. So for now the problem is temporarily solved, but once I come off the suppositories again, I imagine things will start all over. The sad part is, my IBD seems to be in remission. If I could just get the stupid hemmies to go away and stay away, I'd be doing very well health-wise. But the blood loss, anal/rectal pain, anemia, exhaustion due to the anemia, etc has been a huge problem for me since March of last year when this all started. It should be such a simple thing, tons of people get hemorrhoids, but for me they cause such trouble and just don't stay away and there doesn't seem to be a good solution.
 
Ouch they sound like some stubborn hemmies! I really hope the surgeon is able to come up with a solution for you, that sounds like it must be frustrating having IBD in remission but all that going on too.

If you don't mind me asking, did you have meds to get you into remission? Actually, is it even possible to have spontaneous remission in IBD?
 
Sarah, I've heard that it's possible to have spontaneous remission with IBD, but it's definitely not common and for me I absolutely did need meds. In spite of all my normal/negative/inconclusive test results, I had convinced my doctors that I do indeed have IBD (in a nutshell, I asked to do a prednisone trial - pred only works on inflammation, so it wouldn't work on IBS but it would work on IBD, and it worked fantastically for me). So, my GI knew that I have inflammation, and through testing we had ruled out most other inflammatory conditions, and my symptoms fit IBD very well - therefore I got a sort-of unofficial pseudo-diagnosis of IBD, and my GI was comfortable with putting me on some of the less-hardcore IBD meds. For me, it was Entocort, which is a steroid (similar to pred, but not nearly as harsh and far fewer side effects). I was on Entocort for 7 months and it got me into remission, and I was on Asacol (mesalamine) as a maintenance med after that. I spent 2 lovely years in remission, then they stopped making regular Asacol over here and I had a hard time finding a new maintenance med that worked as well for me, so at that time I dropped out of remission and spent some time in a mild flare. I couldn't get out of that flare on my own either, so after about a year of mildly flaring, I went back on Entocort again for 8 months this time and am now doing well on my new maintenance med, Lialda (another formulation of mesalamine).

So yeah, for me it definitely took meds! And a lot of fighting to convince my doctors that I have IBD in spite of what the test results say. I feel like diet and exercise and getting enough sleep, all of those things are components to my treatment, and maybe the fact that I was still exercising regularly through that year of mild flaring was the thing that kept the flare mild? But for me, I definitely need meds to get out of a flare and to stay in remission. I'm currently still on Lialda for maintenance and my GI is happy to prescribe me Entocort if/when I flare up again. So yeah, on the IBD side of things, I'm doing fine - just need to get these darn hemmies taken care of.
 
I figured it would be a case of needing meds but thought it would be worth asking. I guess a bit of me still hopes that all this will go away on its own and I will go back to feeling better and enjoying food again.

The lovely GP I saw before Christmas wanted to try me on some steroids to see if they helped as she is certain it's IBD over IBS, but at that point I still hadn't seen the GI so she didn't prescribe them in case they cleared things up and prevented a diagnosis. She is the GP I'm seeing soon.

I've taken the buscopan today as instructed but have no idea how quickly it's meant to help. Either way although I've not been in as much pain as the other night, I'm not convinced it has anything to do with the buscopan, because I still have the weird pain that is like lots of hot pins being inserted into my intestines. Kind of like the wire cat brushes heated up and pressed into my insides. Sometimes it's just like a mild sting, other times it's more like lots of knives than pins and I have to breath through it like contractions or something lol.
 
Izzie - So sorry the reflux has been bothering you!! I hope it improves soon!

Cat- I'm not sure how long I have to do this diet. From what I'm reading, yes, it's a long time, or until you find the "cause" of your SIBO, which I guess you may have a chance at never find it. I had undiagnosed Celiac for a LONG time, and that can be an cause. Well, what do I for that? what's done is done, ya know? It's so overwhelming.

Which leads me to another question I wanted to pick someone's brain about. Okay, so for the last few years I cannot lose weight FOR ANYTHING. No matter what I did, I might only lose 2 lbs to gain 5 back. Constantly. I never thought I'd see the 150's again. It's been since 2013. So I start this antibiotic, and now suddenly I'm losing weight. I've lost nearly 5 lbs in a week since starting the meds. Granted, I am eating a lot less, but that never seemed to matter before. So, is it possible that the killing of the bacteria is somehow now allowing me to lose weight? does this make any sense?
 
Hi all. I just got back from the colorectal surgeon a little while ago. She was surprisingly more helpful than I had expected - she was a young doctor but was honest with me and seemed to know her stuff. We agreed that since the steroids aren't a long-term solution, maybe banding would help me more. So I had 3 internal hemmies banded right there in the exam room. I wasn't even sure that I currently had hemmies, since I've been on the steroid suppositories for awhile now - I figured everything had healed or was mostly healed in there. Nope, I still had 3 hemmies! So when presented with my options, I chose to get them banded. Banding isn't really surgery per se, and I knew I didn't want surgery, so banding sounded like a reasonable option.

I won't lie, the banding really sucked. There was a LOT of pressure and some pain. She said there will continue to be a fair bit of rectal pressure for 48 hours at least, and that the hemmies should fall off in about a week. So yeah, there's definitely a lot of pressure and discomfort now. It's hard to describe, but it sort of feels like - you know when you get a UTI? And there's all sorts of pressure and it feels like you just constantly have to urinate and it sort of burns and it's extremely uncomfortable? It feels like that but in my rectum. I feel like I have to poo but it's not poo in my rectum, it's banded hemmies. I really hope this discomfort is worth it.

I was proud of myself, though. Apparently, a lot of people pass out right after the bands are put on (something to do with the blood vessels I guess?). Not me though! I got a little light-headed, but I did not pass out.

Oh, but one bad thing - they told me I can't lift anything heavy for at least 2 weeks. They want to make sure that everything is healed before I'm allowed to lift weights again. So no gym time for me for awhile! :( That's another reason that I really hope this is all worth it - I hate missing workouts! So between no weight lifting and this very unpleasant pressure and discomfort, I really really hope the banding is worth it and that the hemmies stay away for good now.
 
The banding sounds uncomfortable to say the least, I hope it works for you! That's rubbish that you're not able to go to the gym for two weeks though, must be so frustrating. I'm glad she didn't suggest surgery for you, that must have been a relief.
 
Thanks guys. I am doing better now, but had a pretty rough time most of the day. I ended up coming home sick from work at lunchtime because I was in so much discomfort and I had become nauseous and got chills (the nurse told me all of those things could happen, but still, not a fun time). So I came home and rested and then had a couple of VERY difficult bowel movements including some blood (also something the nurse said would likely happen - apparently I can expect to poop blood with each bowel movement until the hemmies drop off). It's been an extremely un-fun day.

I think I've turned the corner, though. The pressure and discomfort aren't as bad now, the nausea is gone and I was able to eat a little bit, and I took a hot bath which got rid of the chills. So I think I'm okay now. I'm not great but I'm okay. We'll see what happens when the hemmies actually drop off - that's supposed to happen in about a week (the bands are basically like little rubber bands that cut off the blood supply to the hemmies, the hemmies will soon die and fall off and I'll pass them in my stool - fun times). Then I'll have scabs inside which need to heal which supposedly takes another week, and after that I can go back to the gym. I'm not as upset about being out of the gym for so long, though, after the day I've had - I'm feeling pretty keen on resting for a couple weeks!

I'm so so glad that I have an understanding boss, too. She had no trouble with me "going home to work from home" this afternoon. ;) She has health issues of her own and she knows that when I say I need to go home sick, I really mean it.
 
Ouch, Cat, that does sound uncomfy to say the least. I'm glad you were able to take care of yourself.

Painted Elephant - I'm not entirely sure, but I know some people are able to lose weight with specific probiotics, so it doesn't surprise me too much that changing the flora could allow weight loss. I'm in the same boat, actually! I've had soooo much trouble losing weight, and never sure if it's thyroid related, or gut, or what... and now I'm slowly making progress on vancomycin.
 
Thanks guys. I'm doing okay-ish today. I dragged myself in to work and I think I can make it through the day. I'm really looking forward to the weekend, though. I just want to rest and heal.

I'm trying to keep positive and laugh about this ridiculousness. I find it kind of funny in a few ways - first, this is totally one of those "the cure is worse than the disease" situations. I go to the doctor complaining of hemorrhoids and rectal bleeding and rectal pain, so what do they do? They piss off my hemorrhoids unbelievably, cause me the most rectal discomfort ever, and make it so that I'm bleeding with every bowel movement! Right, that sounds reasonable. :p

Also, I think it's funny the way that doctors phrase things vs the way that patients phrase things. I did some googling about hemorrhoid banding yesterday to make sure that the discomfort and symptoms I've been experiencing are normal. And all the websites from medical sources, they say fairly unhelpful things like, "You may experience some mild discomfort." But then when you look at what people who have actually been through the experience are saying, one guy said something along the lines of, "It felt like they took a crazed hamster, covered it in tabasco sauce, and shoved it in my rectum." Hah! :p The tabasco hamster guy definitely made me feel better about the situation than the "you may experience discomfort" medical websites did.

So yeah. I'm using humor to get through this day (can't use exercise :( ) and just really looking forward to resting up for a couple days. I'm going to visit my grandparents for a short time on Sunday but other than that I will be resting. Hubby hooked up the Wii to the bedroom TV so that I can lie in bed and play Animal Crossing, so that's what I'll be doing the majority of the weekend I think! :)
 
Cat, I'm glad that the surgeon was more helpful than you had thought, but sorry you have to deal with days of discomfort and weeks of no workouts!

I'm doing good! My reflux makes no sense and I was able to have a latte AND a glass of red wine today with only some minor belching. Don't understand at all. It's like my trigger foods don't always bother me as much, just when I'm already having a "bad" week - then I can hardly have a glass of water without some discomfort. I have my appointment with my new GI on Monday, and I'm hopeful!

I feel much calmer this time around than the last time I saw a GI. I had no idea what was wrong last time, but now I feel confident that I at least understand my condition better. I know that there are things that help, and things that trigger it. I'm able to halt any bad episodes usually within a week or two. I don't have (visible) blood in my stools anymore, and things are much better on 40 mg of Omeprazole now than they were a year ago when I had just started taking 20 mg a day and didn't understand what foods to avoid yet. And so if this person is not very helpful either (my last GI was horrid - rude and unhelpful), it won't be quite as crushing. I know there are more doctors in the world and I'll find one who can actually help me out sooner or later.

I think I've decided to go the private practice route if this one ends up not working out either. Though I'm hoping to at least make them give me a pH test.
 
Cat I hope you are feeling a bit better today!

I have been constipated a bit again this week, since starting the buscopan, so I'm not sure what that is all about! Although I suspect my hemorrhoid has something to do with it, sorry for gross detail but I had a bit of leakage so thought I would use some of the stuff the doctor gave me as the hemorrhoid has been sore, and within an hour I was able to go. So I'm not sure if it is that or the buscopan causing problems but either way I wish it would stop!

Annoyingly the constipation, if you can call it that, has me once again doubting whether there is more to this than IBS or not, as I know alternating constipation and diarrhoea is typical of IBS. Although when I refer to it as constipation I mean going every other day with normal, formed stool and not much straining needed. So I'm not sure that counts.

I'm definitely feeling the low weight this week though, every day about 4.30pm I get really exhausted and drained all of a sudden and have to lie down, my heart beats too fast and so hard I can see it, my chest goes tight and I honestly start to feel like my body is shutting down. It's so frustrating!
 
Something totally non-related belly related: I turned in my final project for my final class yesterday!!

On the belly side: I then proceeded to eat fried food when a friend suggested we go out to celebrate - why do I self-sabotage?? OUCHIE!! It's getting a tiny bit better this morning, but man, that was stupid.

Hope everyone has a good weekend.
 
Congrats, Wildmtn! I feel for you on the fried food, though. It's delicious but sooo not worth it!

Izzie, good luck with the new GI today! Please let us know how it goes. I hope they're a good doctor (can't be much worse than your old GI). I hope you can get the pH impedance test, too!

Sarah, interesting how it happens at the same time every day - I don't suppose you could arrange to see your GP at 4:30 so that they could see what happens? Your heart beating fast like that, it sounds worrying. I haven't ever heard of something like that happening at the same time each day, I hope you can get it figured out and that it's something that's easily treated!

As for me, I'm doing okay. Still having some twinges of pain and discomfort, especially when I need to use the bathroom (as soon as stool enters my rectum, things become very uncomfortable and there's a fair bit of cramping). I haven't passed any more blood though (some mucus which was slightly bloody but barely so) so that's good. I don't think the hemmies have fallen off yet - I was told I might see them in the toilet when I pass them, but I haven't seen anything yet. I'm just trying to be patient and heal. One month until I go to Japan, so I just want to be all healed up by then!
 
Just had my colonoscopy - looked normal [emoji30] maybe biopsies show something, all down to the pillcam tomorrow. I really want Humira to help my joints.
 
Hey all!

The new GI was good! Actually how I expect a decent doctor to treat their patients! New bloodwork for hb, celiac, ferritin. Also calprotectin and f-hb.

Will do another (or different? not sure) esophageal motility study and an esophageal 24-hr pH test within 3 months or so, hopefully. There was a bit of a language barrier so I'm not sure we understood each other 100% there.

Sooo, yeah. Basically got everything out of it that I hoped to. However, she had not gotten my charts sent to her and I'm a little concerned that once she does things will sound different. I'm worried my old GI wrote that I'm a nutcase or something :p

Oh and she's sending me to a dietician to do FODMAP. Which is... blargh, I don't really think it's good for anything but I'll try it. Can't hurt. She's not ruling out IBD entirely yet, but seems to think it's unlikely, more likely that I have GERD and "IBS" (which i still don't think is a real diagnosis, but whatevs)

The thing that is discouraging is that she told me - and I've noticed myself - that treatment options for GERD and small hiatus hernias here are basically non-existent. Unless my hernia is HUGE, they won't even consider a Nissen fundoplication or anything radical like that. Medication-wise, I'm pretty much on the max dosage that they'd perscribe to me already. Unless the pH test shows that things are real bad. It's all "lifestyle changes". Which is so depressing because I want them to just... cut something out or give me a pill or just FIX IT so I can go back to my normal life already :p

But like I told her, I need a diagnosis and to at least be monitored so I don't end up with inflammations or pre-cancerous conditions or anything like that.

I'm trying to lose weight, right now, that's kind of my focus. If I do get a GERD diagnosis I'm planning on looking into the LINX procedure, even though it's not performed in this country yet, but I wouldn't want to look into surgical options until I'm at a more ideal weight, since I suspect that weight (belly fat, more specifically) could be making this all worse than it needs to be.

It went well, but I think there's a part of me still expecting to walk into a new Dr's office and be prescribed some magic pill or quick fix so this will all just go away. I mostly feel exhausted and kinda sad whenever I have to deal with any of this.
 
Izzie, I'm so glad to hear that your new GI is good! The other esophageal motility test you mentioned - was it esophageal manometry? I haven't had that one myself but my GI has mentioned it to me. He said that if I ever do have surgery for my hiatal hernia, that I'd need to have the esophageal manometry test done first. If esophageal motility is abnormal, then having the fundoplication surgery would actually make things much worse (in other words, if the esophagus already has issues with moving food down into the stomach, tightening up the valve between stomach & esophagus will make that even more difficult). So yeah, if you're even considering having surgery, it's definitely good to check on your esophageal motility first.

Lorikeetie, sorry to hear about the normal colonoscopy. It's always so frustrating when you know something is wrong but the test results don't reflect that! Hopefully the pill cam will show something. Do you have to do prep all over again for the pill cam? Poor thing!

How's everyone doing today? I'm so-so. My guts have not been happy ever since I had the stupid hemorrhoid bands put on. It's been diarrhea every day and some nausea and cramps and just feeling bleh. My instructions did say that I might feel this way until the hemmies fall off, so I'm getting impatient for the stupid things to die and fall off already! They made it sound like it'd take about a week for the hemmies to fall off once they're banded, so if that's correct then it should just be a couple more days until they fall off. I just want them gone from my life! They've been a literal pain in the ass (well, the rectum).
 
I honestly don't know. But I mean I did do a swallow study so I guess it's something else? Didn't seem like surgery is going to be an option. At least not the Nissen. Might need to go abroad to look into the LINX.
 
L - so sorry that you didn't colonoscopy results that instantly read as to what is wrong :( I know how frustrating that is!

I - happy to hear about a good GI!

C - ugh for the D and hemmie pain :(

I am surprisingly having mushy to nearly formed stools! Odd that it's happening when I'm on antibiotics, AGAIN! Can't wait to see what GI makes of it when I see him next week. I admit to be being a little nervous that my high dose of vancomycin ends tomorrow -- I'm scared the D will come back, or worse, I'll relapse with C-Diff :(.
 
Thanks Ron and wildmtnhoney

Cat - no I had my scope yesterday and just been on clear fluids- Pillcam today. So one lot of prep [emoji4][emoji4] but a lot of starving!!
 
Lorikeetie, I bet you're starving! Have you swallowed the pill cam yet? When I had mine, I was just allowed water for the first 4ish hours after I swallowed the capsule, but after that I was allowed to eat a light lunch and from there I was allowed to eat normally again. So hopefully you get to eat soon! Hang in there!

Wildmtn, if you relapse after tapering down your dose of antibiotics, can you call the doctor and ask to go back up to the higher dose for a bit longer? I've done that with steroids, sometimes my body just isn't ready to taper yet but my GI is always fine with me going back to the higher dose for awhile longer. I'm glad to hear that you're doing better! Hopefully the improvement continues.

As for me, I'm in trouble. :p I had bought some boxes of fancy, delicious Swiss chocolates to give away as gifts at xmas. I gave some small boxes to a few of my co-workers. And it turns out, I apparently had bought one too many of the small boxes, so I put it in my desk drawer at work and must have forgotten about it. I went into that drawer today looking for something else, and found an unopened box of chocolates. Yes, I'm eating them ALL right now (fortunately there are only 4 pieces in the box!). My GERD and guts aren't going to be happy, but I cannot not eat these. They're wonderful and they're already giving me some stomach pains. Ugh and yum. :p
 
Cat - yes I have done. Allow to drink after 2h and then light lunch after 4h. I am actually more thirsty than hungery. Have a performance meeting with HR at work today - what a fun day it is going to be!!
 
I hope your meeting goes okay! What a rough day for you, hopefully it goes by quickly. I feel for you, I tend to get more thirsty than hungry as well when I have to be nil by mouth. The worst was at my last upper endoscopy, which was already a few years ago now. I wasn't allowed to eat or drink anything at all from the time I got up, and my scope wasn't scheduled until 11 AM that day so I spent a few hours of the morning being very thirsty. Then, to add insult to injury, my GI was over 2 hours late to the appointment. So it was past 1 PM by the time he finally showed up! I was miserable, so thirsty! I was cold too because I had changed into my hospital gown. They had given me a warm blanket at 11 AM but of course by 1 PM it had long gone cold. That was not a fun day.
 
Meeting was terrible. It's only going to get more stressful unless I resign. Going to try fighting and hope my concentration improves. Need a better treatment for my arthritis!! Don't think Pillcam showed anything significant - GI said he would look at it quickly and call tonight and it's past the time he said.

Guess I will get what rheumy offers but I am stuck as I don't meet pharmac criteria (government funding) for biological therapy and can't afford $2000 a month (or whatever the price is).

Cat that is rough u hate Drs who run late. GI is pretty good at being on time, but some of the orthopaedic surgeons have been so late!
 
Lorikeetie, I'm not sure if this is available in all countries (you're in NZ, right?) but I know that some of the biologics have discounts/savings programs through the manufacturers. Remicade has Remistart http://www.remistart.com/ and Humira also has a savings card where it looks to be $5 per injection https://www.humira.com/humira-complete/cost-and-copay - I'm not sure about the other biologics but I know those two have those programs through their manufacturers. Definitely look into those and see if you can get them.
 
Hey everyone! So the craziest thing happened to me the other day, and I had to share. I went to a new doctor, and she was actually great! She said that what I have doesn't sound like IBS and that she's pretty sure I have an autoimmune disease. She also felt my thyroid and said it feels swollen, and she told me that my high cholesterol was a sign of inflammation in my body. It was so strange to actually have someone believe me!! Anyway, who knows if she'll be able to help, but I'm just happy to have someone that doesn't think it's all in my head. She actually looked at all the different medications that I've tried and she was like, "I bet you just wanted to yell at all these doctors for always prescribing you anti-anxiety meds and anti-depressants." YES. THANK YOU.

I still feel like crap, but I'm just thankful to have someone who believes me and really thinks it's an autoimmune thing (which I've been saying for two years).

Hope all is as well as possible for everyone!
 
akgirl said:
Hey everyone! So the craziest thing happened to me the other day, and I had to share. I went to a new doctor, and she was actually great! She said that what I have doesn't sound like IBS and that she's pretty sure I have an autoimmune disease. She also felt my thyroid and said it feels swollen, and she told me that my high cholesterol was a sign of inflammation in my body. It was so strange to actually have someone believe me!! Anyway, who knows if she'll be able to help, but I'm just happy to have someone that doesn't think it's all in my head. She actually looked at all the different medications that I've tried and she was like, "I bet you just wanted to yell at all these doctors for always prescribing you anti-anxiety meds and anti-depressants." YES. THANK YOU.

I still feel like crap, but I'm just thankful to have someone who believes me and really thinks it's an autoimmune thing (which I've been saying for two years).

Hope all is as well as possible for everyone!
Click to expand...
I am glad you feel positive about your doctor
 
I just may have a pity party/cry fest after I drop my son off at school this morning. My course of Vancomycin ended yesterday midday. Violent, mushy, bowel movements started around 8:30pm, and have moved onto D this morning. I'm am hoping with all my might that I am somehow "causing" this by stressing that it would happen, and that if I can find time to chill out today, it'll all go away. But I was enjoying my daughter in a school play last night when it started. My belly was the furthest from my mind at the time.

Dammit!

I just want to be HEALTHY!
 
Akgirl, that's fantastic! Hopefully this new doctor can figure things out and get you feeling a lot better.

Wildmtn, call your doctor and let them know! Hopefully they can either put you back on the Vanco, or do something else like fecal transplants. Either way, let your doctor know right away. Hopefully they can get you feeling better again very soon.

How's everybody doing? I'm so-so. Getting really impatient with this stupid hemmie situation. It's been one week exactly since my hemmies were banded, and I was told it takes about a week for them to fall off. So I've been looking, but I haven't seen anything that looks like a hemmie pass in my stool yet. I was told that it's possible I won't see them, that they may be mixed in with the stool. So maybe I just missed seeing them, but it feels like I still have the hemmies, I don't think they fell off yet. I just want the stupid things gone already! My impatience is increased because I haven't been to the gym in a week, I'm not allowed to go for another full week, and just argh. I can't work out and I haven't passed the hemmies yet. I just want this to be over with, I want them gone and I want to go to the gym. I have to be patient but I'm having a really hard time with that.
 
I'm doing mediocre health-wise, but I'm in a good mood so it's okay. Realized after doing some math today that I worked 90 hours in February, while also studying 100%. No wonder I've been stressed and miserable!

I'm going to attempt to take things down a notch so I don't burn out completely. I've had no time for things I enjoy, I've hardly been able to take a nice long walk all month. And that's just a recipe for misery, in my book.

It's my birthday this weekend so I'm going to go stay with family and hopefully have a nice quiet celebration. I feel like my family is finally getting on board with my dietary limitations, I got a phone call asking to specify what I can and cannot eat so they can adjust accordingly.

Cat, I hope things progress for you so you can go to the gym again! I know how frustrating it can be to lose your outlets.
 
Happy birthday, Izzie! I hope you have a nice celebration and that your body allows you to eat some yummy food. I also hope you get to take lots of walks soon!

Speaking of walking, I've been looking at Google street view of Japan. Holy cow, I'm going to be walking so much! Which I was prepared to do anyway, but the scale of things... Tokyo is massively huge and even Kyoto is intimidatingly large. Good thing I'm in remission and taking care of the hemmie problem, because I'm going to need all the good health I can get to make it through this trip. I've read things in guide books, that very casually say crazy things like, "You can climb Mt. Fuji in a day!" And I'm like, maybe other people can but I don't really think I can! Or even want to try! I will observe the mountain from the ground, thank you very much, I will not be going up it.

I just really hope that my body can handle the amount of walking that I'll be doing. I need my hips, knees, and my entire digestive tract to play nice for a few weeks. Slightly anxious now, if I have a bad day or a few bad days I'm just going to have to find a way to push through it.
 
Happy early birthday Izzie!!!

I have an appointment with GI on Wednesday, barring things getting worse. I'm feeling a little better as I sit and knit right now.
 
So now I have a mouth ulcer - not wed when I did the pillcam!! (Going on the theory of if there is an ulcer in my mouth - there may be some in my intestines!!). Stupid body. Unless GI finds something in the pillcam pictures when he looks at them more closely over the weekend- it will be "you have IBS"
 
Izzie hope you're having a good birthday and I'm so glad you've finally got a doctor who listens!

Akgirl I'm glad you have also managed to find a decent doctor, I really hope they can figure everything out and help you feel better.

Cat, how are you getting on since the banding? Any relief yet?

Wildmthoney I'm so sorry the antibiotics haven't helped long term, I really hope the GI is able to help on Wednesday and figure out what is going on.

I'm still not feeling great but went back to work Thursday, the chest pain/tightness is still lingering which is bugging me so I will see if I can pop by the walk in or GP tomorrow. I'm not overly worried but I think it's time I got it looked at, especially as I've been this underweight for a while now.

I don't know why but over the last week or so I've been doubting myself more and more, I think because I've been having a good spell with much less D and slightly less pain I'm doubting whether or not there is more to it all than just IBS. I can almost rationalise it all as IBS and the M.E/CFS causing the extra joint pain and exhaustion. I still have very little appetite and a fair bit of nausea and the burning pain and all of that stuff, I'm still really underweight and both struggling to eat enoug to gain weight and struggling to gain weight when I do eat more, especially because eating more usually means more pain and D and nausea. I'm starting to have mixed feelings about going for a second opinion, like I'm starting to wonder if it's worth it. I can't work out whether it's because I don't have the strength or the energy to keep going through appointments and potential disappointment, or whether it's just because I've been feeling a little better tummy wise or whether it's just that that consultant has got me wrongly doubting myself or something else. It's such a confusing and frustrating time.
 
Last edited:
Does anyone else get really bad dry mouth from PPIs (or any other medication you may be taking)? How do you deal with it? It's ANNOYING and feels gross, especially for someone like me who already has sensory processing issues...
 
Sarah - I'm no doctor, but by the sounds of your symptoms, it definitely seems like more than IBS to me! In my experience, most doctors are too lazy or don't care enough to really investigate for each patient. We have to be our own advocates, and that's not fair because we didn't go to medical school, and they just think we're exaggerating or being wimpy when we tell them what we really think is wrong. I think you should get a second opinion. And maybe a third, fourth, fifth.....I think I'm on my sixth now, actually. But it's so frustrating, so I completely understand why you're hesitant to do so. Even with my new doctor who actually believes me, I have this fear that she's not going to be able to fix me and she's just going to give up like the rest of them.

Izzie - I don't have dry mouth, but I know they make mouth washes for that.....have you tried any of those? Or maybe some gum or mints could help a little bit?
 
How are all of you doing today?

I just heard back from my new GI. FC, f-hb all negative. No celiac. Ferritin SUPER low. Hb normal.

She doesn't know what the heck is up with my iron levels, but they're effed up. I might end up getting infusions/injections/something, but it's slowwwww so I don't know.
 
Hi, new to the group really feeling down waiting on MRI on the 14th March.. My cal protection markers were 232.. I haven't been able to eat in 2 weeks and have a constant temp and tirdness..
 
Izzie - I have the opposite ferritin ok (29) and Hb low (106). Need to get a blood test done today. Stupid body not behaving. GI didn't see anything on my Pillcam or colonoscopy. So no confirmed Crohn's. Must just be my arthritis causing problems!
 
Saw GI. I really do like him a lot. He is sure I am just continually suffering from C diff. So, he wrote a script for a loooong Vanco taper. Of course my insurance is causing difficulties, but hopefully I can get that straightened out today. (The taper is over 2 months, and my insurance only wants to cover one month). However, if I "fail" this Vanco taper, he and I talked about fecal transplant. The hospital he is affiliated with has the material to perform them, and he says I'm a good candidate since I've been ill so long. I've read such positive things about them, I admit to being hopeful that I have that as an option. The procedure as he explained it is that they do a colonoscopy first, then they transfer the material, all in the hospital. Sounds not too awful.
 
Hi Cait, welcome to the group! Keep us posted on how your MRI goes. Have you had any other tests such as colonoscopy?

Izzie, how low is your ferritin? Mine was super low as well, mine was at a 4 just before having iron infusions. After the infusions, it went up to something like 180! :p BIG difference! Oh, and yes, I've had really bad dry mouth. Being on steroids seemed to make it much worse, it's tolerable now that I'm off the steroid suppositories. I just drink a lot of water and sometimes suck on candy to encourage saliva production. There's not a great long-term solution that I've found, though.

Wildmtn, that sounds like a good plan. I hope that one way or another, you can kick this stupid c diff infection for good! I've read a lot of good things about fecal transplants as well (I know someone who works in a hospital and he said there's been fantastic success with them in his hospital). Good luck with the long Vanco taper in the meantime and I hope your insurance company allows you to have the medication you need (isn't it fun when we get to fight with insurance just to get what we reasonably need to be well?).

How's everybody doing today? I'm meh. I can't tell if this is part of the healing process from the hemorrhoid banding, or if I already have a new hemorrhoid, but I passed a small bit of blood last night (just the teensiest bit). And things felt a bit swollen and unhappy back there. Nothing external going on so it's all more unhappiness going on in my rectum, but I don't know if the bleeding was from the banded hemmies falling off (I was told there would be a scab where each hemmie fell off and that those scabs might not bleed or they may bleed a little or a lot). I'm hoping that's the case, that it's a slightly unhappy scab, and not a new hemmie. I'm SO OVER having rectal issues! Seriously, it's been a year that this has been ongoing, I just want my stupid rectum to heal and be okay for awhile.
 
Akgirl, thank you, I have my GP appointment tomorrow to discuss a second opinion and I have to say, after the last couple of days I'm feeling much more certain about going through with a second opinion.

Cat I hope that it's just part of the healing process for you and not new hemmies already forming! Do you have a follow up appointment booked?

I am definitely having a spell of feeling sorry for myself. Over the last few weeks symptoms are slowly creeping back in, so a couple days before my appointment I had a night with 8-9 episodes of D, lots of crampy pain and nausea with another what I call "phantom fever" where I feel boiling but thermometer says I'm normal. Then I've not felt right since then with on and off symptoms, the last couple of days I feel like it's intensifying again, lots of nausea and bathroom problems. Hopefully not TMI but the last couple of days I've also had some really foul smelling wind along with D and mucus. Plus the pain is definitely back, including a couple of new pains under my ribs on each side. I've also had an increasing amount of chest pain which I'm assuming is from malnutrition so I will be mentioning that to the doctor tomorrow!

I really hope I get some answers and treatment soon, I am so fed up of feeling awful and having to miss work and feeling like my body is failing.

On the plus side it's giving me time to re-read the Harry Potter books!
 
Sarah, I don't have a follow-up booked with the colorectal surgeon, no. Honestly, she was a fairly dismissive doctor, so I don't really want to see her again anyway. I do see my GI in May, that's my next appointment, so I guess I'll just try to heal for now and have him do an anuscope then and see if he can see what's going on in my rectum (I'll be in Japan for most of April anyway so not much time for an appointment before then - I just need my body to play nice while I'm travelling!). I'm doing better today, so hopefully this is just part of the healing process.

Oh, and there's no such thing as TMI on the forum. :) We all deal with horrible stuff that maybe you wouldn't talk otherwise, but on here it's fine and we all go through similar things. I get those "phantom fevers" as well when I'm flaring! I get horrendous chills, like there's nothing I can do to warm up - I can bundle up in clothes, sit under my electric blanket, even sit in a hot bath, but I'm still chilled to the bone. But, when I check my temp, it's always normal or slightly low even. It's never an actual fever. It's weird but I've just come to associate it as being yet another flare symptom.

You mentioned diarrhea at night - do you mean that the urge to have diarrhea wakes you up? If so, that's definitely NOT an IBS symptom but it is an IBD symptom. With IBS, it's thought that there's a brain-gut malfunction, so the brain misfires and erroneously sends a signal to the gut to cramp, causing some crampy pain and diarrhea. (I don't think IBS is even a real thing, and some doctors agree, but that's a whole other thread for another day.) So it's thought that with IBS, when the brain goes to sleep, that signal stops and the gut isn't told to cramp during sleep. With IBD, it's inflammation in the gut that is causing the diarrhea and other symptoms, and obviously that inflammation doesn't go away when you sleep. So that's why you'd have what's called "nocturnal diarrhea" with IBD but not IBS. To me, it sure sounds like you have IBD or something inflammatory, but not IBS. So do keep on pursuing that diagnosis.

I love re-reading favorite books. :) I'm re-reading the Lonesome Dove series myself right now (the first 3 books anyway, since the 4th one is terrible and I refuse to acknowledge it).
 
Cat-a-Tonic said:
Sarah, I don't have a follow-up booked with the colorectal surgeon, no. Honestly, she was a fairly dismissive doctor, so I don't really want to see her again anyway. I do see my GI in May, that's my next appointment, so I guess I'll just try to heal for now and have him do an anuscope then and see if he can see what's going on in my rectum (I'll be in Japan for most of April anyway so not much time for an appointment before then - I just need my body to play nice while I'm travelling!). I'm doing better today, so hopefully this is just part of the healing process.

Oh, and there's no such thing as TMI on the forum. :) We all deal with horrible stuff that maybe you wouldn't talk otherwise, but on here it's fine and we all go through similar things. I get those "phantom fevers" as well when I'm flaring! I get horrendous chills, like there's nothing I can do to warm up - I can bundle up in clothes, sit under my electric blanket, even sit in a hot bath, but I'm still chilled to the bone. But, when I check my temp, it's always normal or slightly low even. It's never an actual fever. It's weird but I've just come to associate it as being yet another flare symptom.

You mentioned diarrhea at night - do you mean that the urge to have diarrhea wakes you up? If so, that's definitely NOT an IBS symptom but it is an IBD symptom. With IBS, it's thought that there's a brain-gut malfunction, so the brain misfires and erroneously sends a signal to the gut to cramp, causing some crampy pain and diarrhea. (I don't think IBS is even a real thing, and some doctors agree, but that's a whole other thread for another day.) So it's thought that with IBS, when the brain goes to sleep, that signal stops and the gut isn't told to cramp during sleep. With IBD, it's inflammation in the gut that is causing the diarrhea and other symptoms, and obviously that inflammation doesn't go away when you sleep. So that's why you'd have what's called "nocturnal diarrhea" with IBD but not IBS. To me, it sure sounds like you have IBD or something inflammatory, but not IBS. So do keep on pursuing that diagnosis.

I love re-reading favorite books. :) I'm re-reading the Lonesome Dove series myself right now (the first 3 books anyway, since the 4th one is terrible and I refuse to acknowledge it).
Click to expand...

Hi cat thanks for welcoming me, no colonoscopy will be next on the list if the MRI does not show anything I hope to god it does though as I've had a rough year and the date I get MRI is the date all my problems started last year!! I have read loads of people's stories and o know there is a lot of ppl worse off than me I just want to be my normal self again and able to function like I use too
 
Cait, I hope the MRI or colonoscopy will give you some answers. And sure, there may be people who are worse off than you are, but that doesn't mean you're not suffering as well, that doesn't negate what you're going through. Also - take things with a grain of salt when you read others' stories on the internet. People tend to talk about awful things online but not so much about the good/normal times. So you may read some horror stories, but that's in big part because people aren't flocking to the forum to talk about the times that everything went well. :) So it may seem like a lot of people have it worse than you, but it may also just be that the people dealing with horrible stuff tend to also be the most vocal about it.

Update on me - I used the bathroom a little while ago and there seemed to be the slightest bit of blood on the TP. It was so slight I can't even really be sure it was blood. But, I didn't poop, I only peed. Usually, with my hemorrhoids, I only see blood on the TP/in the toilet when I poo, not when I just urinate. So this makes me think that this slight bleeding does seem to be part of the healing process, likely from an internal scab. Must have just leaked out a tiny bit when I used the bathroom, but even when I'm having fairly heavy hemmie bleeding, it doesn't tend to leak out when I just urinate. So yeah, I think this is me healing? It's so hard to tell. :p The colorectal surgeon said I should be healed up in 2 weeks, and it's 2 weeks as of today - but, I tend to be a slow healer, so maybe it's just taking some extra time for me. I'm going to go with that theory anyway. The bad part is, I'm not supposed to work out until I'm healed, so I think this means I'm staying out of the gym for a few more days at least. Ugh, oh well.
 
Sorry to hear your not healing quickly, I so miss the gym and feeling good about myself this is a horrible journey I haven't bled fro my back passage in years thankfully, I feel like such a drama queen being on this forum and might not even have C which I hope I don't but would also like a diagnosis and a good nights sleep I have a new complaint everyday and as much as I can see others around me getting fed up they have no idea how fed up I am 😫🙉
 
You're not a drama queen, I promise. You're suffering and just want some help and answers and it's taking awhile to get those - that's definitely a situation that's worthy of complaint! As for other people getting fed up, those people should feel extremely lucky that they don't have to deal with the things that we go through, they have no idea how good they have it. So don't worry too much about those people. If they were in your shoes for even 5 minutes, they'd change their tune.
 
Hi guys,

Sorry to hear most of you haven't had much of a break from your suffering.

Cat-I can so relate to hemmies/fissures...its like one bout of (o so mild) constipation and im back to having slight bleeding. Its such a pain...in the butt :)

I have had a bit of tummy trouble this last week, however I think it is more to do with what ive been cramming in my mouth, basically anything bready/fried..you name it, im eating it.

Funny story though, went to see my doc last about not feeling great and before i had even said hi to him he said 'you do not have Crohn's.'...i was like 'but...i just feel like i do!' and he said 'you really don't, you have IBS and it isnt a diagnosis to be sniffed at'. Well, sorry to break it to you doc but it is, like 1 in 5 or something ridiculous suffer from it and its a diagnosis of exclusion not a diagnosis itself, its a joke. But anyway i digress...i am feeling so-so.

I have noticed my anxiety is pretty bad these days, im in a bit of a life rut-not working, bf troubles etc etc. I went to see How to be Single at the cinema today and it has inspired me to go travelling by myself, whether i actually will is another story. Plus you are meant to travel lightly and i already know one full suitcase will be full of medication without cosmetics/clothes and what not, so thats not going to happen!!
 
Well biopsy results from the colonoscopy were normal - no Humira through the gastro route as I only have IBS. Onto see the rheumy I think!
 
Megan, I am not good at packing light either! I'm going to Japan at the end of this month, and I'm bringing at least 6 bottles of medication with me, plus wipes and creams, and safe snacks for the long plane ride, and a zillion other things. I'd love to be able to pack light and just zip away to travel with only a small bag on a trip, but the circumstances of my life just don't allow for that. Hah, I just went away overnight for work earlier this week, I went with a co-worker. She had one small bag. I had a suitcase, my large purse, plus another bag of stuff that didn't fit in my suitcase. And that was just for one overnight! :p It's going to be slightly scary when I start actually packing for Japan because I'm going to be there for 3 weeks so I will need to bring a lot of stuff. It's not going to be pretty.

You should go travelling, though! Even if you don't go far, and just go for the day, it could still be a good experience. I like taking day trips. Like, for me, I'm really into local crime history of the 1930s, in particular I'm obsessed with John Dillinger and Baby Face Nelson. There are places within a few hours' drive of my house that were significant in their history - like, last year we drove up to the northern part of Wisconsin, to a place called Little Bohemia, where Dillinger and Nelson and their gang had a shoot-out with the FBI in 1934. They kept the building just as it was, so the bullet holes are still there in the building and even in the windows, and also there are still bullet holes in the trees, and the inside of the building is also just as it was in the 1930s. It's a really neat place and I'm so glad I went to see it! So see if there's something that interests you within a reasonable distance of where you are, and go spend a day travelling and exploring. :)

As for the hemmies, my bleeding has at times been much more than slight, which is why I had my hemorrhoids banded. I'm sick of losing a lot of blood every time my body decides that it's hemmie time. The banding will make my current batch of hemmies go away, but it doesn't guarantee that I won't get more hemmies in the future. So I still have to be careful. For me, it seems like any time I have diarrhea, that's when I form a new hemmie. And since I'm prone to d anyway, I need to be careful about what I eat and I also need to take meds fairly regularly to slow the flow of things. Fun.
 
Cat I hope they hurry up and heal so you can enjoy Japan properly! Are you still sticking to the steroid suppositories too to keep things under control?

Lorikeetie how are you feeling about the colonoscopy results? I hope the rheumotologist can get you sorted with the humira.

I've had my GP appointment today which was mixed. Good thing is she is going to refer me to the dietician, I have another ECG on Thursday and I have prescription for the next step down for vitamin D when the high dose runs out, as well as the forms to get the blood test done to check the levels before I switch doses, so that saves a trip in a couple of weeks.
Sort of downside is she thinks it's too early to seek a second opinion as the consultant isn't finished testing apparently. Which was news to me! So the GP kindly printed me the letter the consultant wrote to them which explains things better than she did in my appointment. So from that I learnt that my IgA was slightly low in September and was lower still in January, my TtG was negative, but the question she has with that is if I had a false negative for my coeliac blood testing so if symptoms aren't settling with buscopan etc then a gastroscopy with duodenal biopsies might be next. This wasn't mentioned to me at all! It also states that the biopsies of my large intestine showed "mild chronic inflammation" which is non specific. I'm not sure about anyone else but the key word I took from that is chronic. She also stated that the inflammation seen in my TI on colonoscopy looked "unconvincing" on the endoscopy pictures. Like, I'm sorry but what does that even mean? Did the endoscopy nurse imagine it or did her specially trained eyes deceive her or what? So I'm not overly happy with that and the way it has been disregarded.

Honestly I feel so mixed about the appointment today, not helped by having a bad night last night and a rough day today. Cat I don't often get woken up by needing to go to the toilet, it is a more occasional thing, but I am regularly woken up by pain, by nausea and by overheating/night sweats. I think partly I do need the toilet some of those times but I have some degree of control over it and am usually too exhausted to want to get up to go downstairs to use the bathroom. But last night the pain and nausea kept me up until 1am and woke me at 5am. They have stuck around all day with three lots of almost D with lots of mucus so I'm guessing it's related. The pain is particularly on my left side near my ribs, almost like it's the top of my descending colon maybe. My LRQ is sore as usual too but the upper left is definitely worse today, I can't actually describe the pain well, it's like an intermittent sharp searing pain.

I'm really regretting eating dinner, I feel so sore and uncomfortable and I just know nausea and pain will keep me up again. My mum and I are meant to be going away for the weekend tomorrow and I just don't know how I'm going to have the energy to get through it and try to enjoy it.

Part of me hopes the consultant goes ahead with the gastroscopy because I just feel like it's another opportunity to maybe find some answers especially with the amount of nausea I get and feeling so full easily and for a long time etc. I just wish I had answes already.
 
Things finally got resolved and dh will be able to pick up my meds later tonight! Very happy about that as I had a rough day today. No fever, but lots of d with mucus. Especially happy as my daughter has a dance competition Sunday and I wasn't sure how I was getting through!
 
New here, left a comment in the my story section but yeah eating sucks, bleeding sucks, diarrhea sucks, sleeping is .. like rolling dice. I use my vacation to take the extra day off work so I can nap my weekends away recharging for another work week. I'm out of appointments, alienated by a teaching hospital that got my diagnosis wrong and they know it, they told me to change insurance companies, so I did, didn't help much, doctoring is dying. What sucks worse?, never eating out, cooking all your own from scratch, not being able to have a girlfriend, no intimacy, I'm doing better alone anyways. People hate you because you look so healthy, they doctors run you through the same toolbox of tests.. Well, I'm into supercharging my immune system here, I avoid sick people, I can spot them from twenty feet away by the crap they eat and the soda bottles, I can see it in their complexion, in their eyes, the way they carry themselves, how often they call into work sick, I'm jealous in my own way but they have no idea the misery my life is. The last time I talked to my Mother she told me about some guy she met who was so happy he had his colon removed to aleviate pain, my sister was snickering at me over the phone, I just don't know about my family here anymore, they are slowly being blocked by me. I already talked to a woman I met at a tea shop who stole/married some guy from some remote island, he came to America ate our diet, now he's missing his colon, gallbladder, and it sounded like his pain is worse than mine by far, my god I would have left this place and went straight home at the first hint of trouble, as it is I'm considering an escape plan to some equatorial area where autoimmune illness does not exist, I'll just sell everything, cash everything in and just go bust or health, don't want to live like this anyways. What I still don't understand is the people I do know who have diagnosis for gut illness still eat garbage!:eek2::eek2::eek2:
 
Okay so I am doing a ph monitoring test in april, HOWEVER - the appointment slip says I'm not allowed to take Omeprazole or anything at all basically for 10 days prior to my appointment. ARE THEY KIDDING?! If I don't take my meds for one DAY I'll end up in the ER because of the pain.

I'm going to call, but has anyone else done this test? Did you have to stop your meds entirely? I mean, I want the test to show something, so I want to do everything by the book but I'll get so sick if I go without meds for TEN days. It won't work.
 
Sarah, no, I'm currently not on the steroid suppositories. When I had my hemmies banded, the colorectal surgeon advised me to stop taking them for at least 2 weeks because they could make things worse rather than better. So I've been off of them for just over 2 weeks now.

Your symptoms definitely sound like way more than IBS - being awoken for any gastro-related issue (nausea, pain, etc) is not part of IBS. And night sweats usually indicate either inflammation or infection. I get night sweats in my flare-ups as well, for me it just means that I have active inflammation.

I'm not sure what they meant by saying your inflammation in the TI was "unconvincing" - that's a new one to me! If it were me, I'd ask the doctor what they mean by that. If they saw inflammation, then surely it must be an IBD I would think! Particularly in the TI, since that's the spot where Crohn's is most likely to manifest. Definitely worth asking about and maybe getting a 2nd opinion about as well.

Izzie, that's weird. When I had my pH impedance test, I was specifically told that I must continue taking all my reflux meds as usual because they wanted to see what a typical reflux day was like for me. I was instructed to eat my trigger foods to get things riled up, but they also said I should take my meds as usual. I would definitely call the doctor and ask about that. I know that would be an absolutely horrendous 10 days for you and I think your doctor needs to know that you wouldn't be able to function!

How's everybody doing today? I'm okay-ish. I had a teeny bit of rectal bleeding and discomfort yesterday again. And I've noticed a weird correlation. Every time the hubby and I get "intimate", I have a teensy bit of butt bleeding afterwards (we don't do butt stuff!). I guess because the lady parts are right next to the rectum, so the rectum gets mad whenever there's a party next door? :p It's weird. It's been over 2 weeks but I guess I'm still healing from the hemmie banding. And it's only ever a teeny bit of blood, like a drop or two at the most, and just very mild discomfort, so it's nothing horrible. It's been this way since the hemmie banding though. It's odd. I hope my stupid rectum heals up soon already. I know I'm a slow healer but this is getting borderline ridiculous.
 
Then go to the ER, I go at least 5-6 times a year, they won't do anything for you, well maybe if you have some kind of diagnosis they can, but for me all I get out of the deal is another EKG, even if I tell them, you know .. I ran five miles yesterday, nope, heart ok, check, off with you, symptoms, ignore.

I was going to say .. monitor your own PH, or if they are doing an esophagael PH test, can't people tell if they have GERD or heartburn by taking something that soothes that, sometimes when I go to the ER they'll give me some kind of liquid to drink and then say do you still feel pain? One of the last times they gave me ranitidine, well that gave me awful diarrhea and my food was coming out the other end undigested, losing weight fast!, didn't stay on that long.
 
@Cat-a-Tonic I thought it sounded weird too. And there's like a big "IMPORTANT!! DON'T TAKE YOUR MEDS!" thing so it's clearly not open to interpretation. I will call, though. Like, I can't even imagine going a couple of days without meds, I'd be miserable.

Have you spoken to your doctor since you had the procedure? Is it supposed to take this long to heal? Sounds like a literal pain in the ass :D (sorry, I couldn't help myself)
 
Hey all, I'm new here. Posted last week on the Undiagnosed Club main forum. But I am in need of some community as I deal with this. I spent my whole day yesterday in some degree of pain, often near tears. Called GI today and I got scheduled for a colonoscopy the first Tuesday in April. I don't know how I'm going to make it. My lower abdomen hurts so bad and I am so freaking tired. Also, being in this diagnostic limbo is frustrating because Dr hasn't even given any recommendations for management until then.
 
Sarahfh - disappointed in a such a weird way (should be happy I don't have Crohn's). I hope my rheumatologist can offer something else and hopefully it works. Finally have a date for my shoulder surgery after a 8-month wait -- 31 March which is not far away at all!! Work are not impressed about being of sick again, but I can't really help it. I see my ankle surgeon on Thursday - in December he recommended further surgery and u don't think it will be much different now.

Just sick of being unwell!!
 
Hi I'm new here. I am undiagnosed. I have had multiple infections of a parasite that has caused me no end of problems. The GP feels it is likely something underlying like an IBD that is meaning I keep getting it back. Even when no parasite I have symptoms. Have an appointment booked with a gastro in April and likely will get colonoscopy booked then. My dad had UC diagnosed at 14 and he died 19 years ago from complications of the disease aged 52. So some family history of IBD too.

Went to GP today for scripts and mental health review and of course he asked how my other issues were going post flagyl for blastocystis. So I end up being examined and it was painful! He said its inflamed and I asked if it was something like just haemorrhoids and he said no they don't give symptoms like I have. He gave me steroid suppositories to hopefully help the discomfort and inflammation(except none of the chemist keep them in stock so I have to wait for them to be ordered in 😳). Hoping they help!
 
Hello all. I haven't been in awhile as I was waiting for my EGD/Colonoscopy which I had yesterday.

Here's what I was told:
Gastritis
Barrett's Esophagus
and Grade 1 internal hemorrhoids ( I already knew this. That bitch hurts!)
They took a bunch of biopsies, and are going to test for H. Pylori as well. What I don't understand is that I just took Augmentin for SIBO, so wouldn't that kill H. Pylori? or is that a different drug that does that?

Nothing was explained to me as my GI needed to get to his next appointment, but I think they were going to call me when all my biopsies came back.

What can I do for gastritis? Anyone have this?
 
Hi OhioRyan, welcome to the club. How long have you been experiencing this pain? Have you tried anything like a liquid diet for a couple of days? There's also the BRAT diet (bananas, rice, applesauce, toast) or low-residue diet (generally anything that's bland and easily digested, like rice, white bread, potatoes without the skins, baked chicken or fish, etc). Those might help get you through until your scope. If the pain gets worse, if you have new symptoms like fever or vomiting, anything like that - go to the ER. Tremendous abdominal pain like that could indicate a blockage and that's not something to mess around with. I hope you have a relatively easy time with things until your scope! Please keep us posted on how it goes.

Hi ShellK, welcome to the forum. I've been on steroid suppositories recently myself - I hope they help you! Are you having any tests for IBD? With a family history like that, it definitely sounds like something that should be investigated. Good luck, I hope you get some answers soon!

Izzie, yeah, I would definitely call the doctor. Even if that's their usual protocol, hopefully they can make an exception for you and allow you to continue taking your meds. No, I haven't spoken to the doctor - it was my first time seeing that particular doc (colorectal surgeon) and she was somewhat dismissive. She made it sound like most people heal up in 2 weeks, but I'm a slow healer, so I just presume that I'm still healing. I didn't pass any blood yesterday so that's good at any rate. My guts are fairly riled up, which I think is just because I'm exhausted (we just had the time change with daylight savings time and that always wrecks my sleep schedule) and because I went back to the gym for the first time yesterday (I got sick of waiting and I didn't even do any abdominal exercises but my guts are acting like I did a zillion crunches). So I've had some d, but no blood. So I don't know. I'm just tired and can't think too much about it today, I'm using up all my energy just dealing with my guts being unhappy and with being so exhausted.
 
PaintedElephant, I've had recurrent gastritis episodes due to GERD. Barrett's can also be caused by chronic reflux, so it sounds like you likely have GERD. Have you noticed any reflux symptoms? You'll probably want to start on a reflux med such as Prilosec or Nexium (there are milder meds such as Ranitidine, but I've found that I can't keep my GERD under control with Ranitidine alone so I take both Nexium and Ranitidine). Other ways to treat GERD include not eating large meals (especially within a few hours of bedtime), and propping up the head of your bed a couple inches. Oh, and this is weird, but when I feel a gastritis attack coming on, I make myself eat something. Gastritis causes me awful stomach pain and nausea, but for me the cause is that my stomach acid is going nuts and is starting to eat away at the lining of my stomach. So if I manage to get some food in my stomach, that gives the stomach acid something to work on other than the lining of my stomach, and that actually really helps. It's fairly awful to have to force myself to eat something when I'm that nauseous and having that much stomach pain, but it really does work. So I'd recommend you eat frequent small meals if you're able to, no big meals. Drink a lot of water too, that will help dilute the stomach acid.
 
Hi Cat
I had a colonoscopy 10 years ago and was told it was 'just' IBS. I am booked to see Gasto specialist in April which my GP thinks will mean being booked for scopes. I have had blood and stool tests recently. They have been mixed in results.
Should say I'm an Aussie in case I say strange things [emoji38]
 
Shell, if it's been that long since your last scopes, I agree that it's time to have them done again, especially if things have changed or worsened since your last scopes. And no worries, we have a few Aussie members on the forum who sometimes say interesting things (tagging DustyKat, ha ha) so I'm used to it! ;) What blood & stool tests did you have and what were the results, if you don't mind me asking? Were any of your inflammatory markers high? (CRP, ESR, or fecal calprotectin?)
 
Cat-a-Tonic said:
PaintedElephant, I've had recurrent gastritis episodes due to GERD. Barrett's can also be caused by chronic reflux, so it sounds like you likely have GERD. Have you noticed any reflux symptoms? You'll probably want to start on a reflux med such as Prilosec or Nexium (there are milder meds such as Ranitidine, but I've found that I can't keep my GERD under control with Ranitidine alone so I take both Nexium and Ranitidine). Other ways to treat GERD include not eating large meals (especially within a few hours of bedtime), and propping up the head of your bed a couple inches. Oh, and this is weird, but when I feel a gastritis attack coming on, I make myself eat something. Gastritis causes me awful stomach pain and nausea, but for me the cause is that my stomach acid is going nuts and is starting to eat away at the lining of my stomach. So if I manage to get some food in my stomach, that gives the stomach acid something to work on other than the lining of my stomach, and that actually really helps. It's fairly awful to have to force myself to eat something when I'm that nauseous and having that much stomach pain, but it really does work. So I'd recommend you eat frequent small meals if you're able to, no big meals. Drink a lot of water too, that will help dilute the stomach acid.
Click to expand...

Cat- Thank you!!! Because of the SIBO, I'd already started eating smaller meals, and making sure I'm chewing everything well. It really did seem to help a lot. The funny thing is, I don't feel like I have the typical GERD symptoms, but I do get a lot of Chest pain, nausea, bloating, can't eat. ect. I just didn't think this had anything to do with reflux. I used to take meds for GERD several years ago, but it wasn't anything excessive, and I'm not even sure when/why I stopped taking them. The only thing I worry about is them prescribing a PPI, which I've read can be a contributor to SIBO! Good lord. I don't want to keep causing that, but I guess GERD should really be treated. I wish there were more natural ways to cure this. I don't like being on long term medications. I would take Ritanidine when I was pregnant, and it really seemed to help, but I do not believe I've ever taken anything stronger than that. My GI hasn't called in anything yet. Aren't those prescription?
 
You can get lower doses of Prilosec (omeprazole) and Nexium (esomeprazole) OTC. If your doctor feels that you need a higher dose then it'll have to be on prescription. Like, I think you can get 20 mg Nexium OTC, but I take 40 mg so I have to have a prescription for that.

I get a lot of those symptoms too - sometimes I bloat out so much it's crazy. I don't know if I have the typical GERD symptoms either, or some of my symptoms are "silent" or something like that. I have a hiatal hernia as well, so sometimes stomach acid/contents just pour up my throat when I bend over forwards - very disconcerting and unpleasant!

Oh, I should also mention - in addition to eating smaller meals, you should probably try to avoid any foods that are highly acidic and/or trigger reflux symptoms for you. Anything acidic like spaghetti sauce or orange juice, plus for me anything greasy sets me off (fried foods are the worst) and chocolate, and, for some odd reason, cucumber really triggers my GERD. So just pay attention to what foods seem to bring on more symptoms and maybe avoid those foods or eat them in extreme moderation.
 
Cat-a-Tonic said:
Hi OhioRyan, welcome to the club. How long have you been experiencing this pain? Have you tried anything like a liquid diet for a couple of days? There's also the BRAT diet (bananas, rice, applesauce, toast) or low-residue diet (generally anything that's bland and easily digested, like rice, white bread, potatoes without the skins, baked chicken or fish, etc). Those might help get you through until your scope. If the pain gets worse, if you have new symptoms like fever or vomiting, anything like that - go to the ER. Tremendous abdominal pain like that could indicate a blockage and that's not something to mess around with. I hope you have a relatively easy time with things until your scope! Please keep us posted on how it goes.
Click to expand...

Cat-a-Tonic, I read up on diet changes last night. My GI specifically said he didn't recommend any dietary restrictions, but I can't keep on. I am going to avoid several of the high.er residue foods, as well as dairy and tomato sauce. Hoping the month goes quickly, the fatigue is getting annoying
 
Cat-a-Tonic said:
You can get lower doses of Prilosec (omeprazole) and Nexium (esomeprazole) OTC. If your doctor feels that you need a higher dose then it'll have to be on prescription. Like, I think you can get 20 mg Nexium OTC, but I take 40 mg so I have to have a prescription for that.

I get a lot of those symptoms too - sometimes I bloat out so much it's crazy. I don't know if I have the typical GERD symptoms either, or some of my symptoms are "silent" or something like that. I have a hiatal hernia as well, so sometimes stomach acid/contents just pour up my throat when I bend over forwards - very disconcerting and unpleasant!

Oh, I should also mention - in addition to eating smaller meals, you should probably try to avoid any foods that are highly acidic and/or trigger reflux symptoms for you. Anything acidic like spaghetti sauce or orange juice, plus for me anything greasy sets me off (fried foods are the worst) and chocolate, and, for some odd reason, cucumber really triggers my GERD. So just pay attention to what foods seem to bring on more symptoms and maybe avoid those foods or eat them in extreme moderation.
Click to expand...

it's just so much! :( I've read that you should avoid caffeine/ coffee with Gastritis and that makes me want to cry. I only drink one cup of coffee a day and it doesn't SEEM to bother me. However, I do want to give myself a chance to heal properly. I also drink my coffee black which is probably more acidic.

In terms of after a Colonoscopy/EGD how long is normal to be bloated?? I don't feel like I have gas, but my stomach feels all puffy like It did before I treated the SIBO. I feel a little nausea today, and just general discomfort in my belly. I did eat crappy foods yesterday, so maybe it's just something that I ate. It scares me though because it feels exactly like how I felt when the SIBO was in full force.
 
PaintedElephant, I don't do any coffee/caffeine at all, I gave that up when I first became ill in 2009 as I started getting migraines along with the gut symptoms, and caffeine seems to both trigger migraines and make my guts more unhappy. So for me it was a no-brainer to give up caffeine. Long story short, I don't know if it would affect my GERD because I haven't had any coffee at all the entire time that I've had GERD! Sorry I can't be of more help on that.

They pump a lot of gas/air into your digestive tract during a colonoscopy, so you might be bloated for a few days afterwards. And if you ate poorly that might have affected things too - particularly if you were putting crappy food into an empty digestive tract. If all your body had to work with was junk food, then it's likely not super happy. Take care of yourself and eat simply, and if you are able to, try to do some light exercise (walking/yoga) to move the gas along and get it out of your system.

OhioRyan, have you had any bloodwork done that might shed some light as to why you're so fatigued? Certain vitamin deficiencies (vitamin D, B12, iron) can cause terrible fatigue. I had severe iron deficiency last year and I felt like a zombie for months! If they can get that part figured out while you're waiting for the scope, you might be able to treat it and start feeling at least somewhat better.

Yeah, most GIs give similar advice about diets - I think that's because there's technically no proven link between diet and flare-ups (some people would argue that's false - I don't think there's enough data out there yet to be sure either way). However, for most of us we do find that we have trigger foods that make symptoms worse (note that symptom severity doesn't necessarily correlate with inflammation, so while certain foods may make you feel horrible, they're likely not actually affecting your illness or inflammation). A lot of us find it helpful to keep a food & symptom diary - make note of what you eat and what symptoms you're experiencing, and see if you notice any patterns develop over time. For me, that's how I was able to figure out that garlic is one of my trigger foods.
 
I have been using GI Buddy to track my symptoms, and I can add a food diary in the same ap. I think it makes sense that higher residue foods can "scrape" inflamed intestines and cause pain. Also that bulky foods can be painful to move through as well. I have had trouble with dairy since I was 19/20 y.o. so that I'll give up to decrease gas and bloating.

I had annual blood work just before the first episode of pain that should very slightly deficient vitamin D, thyroid and iron studies were normal. My iron studies and cell counts were normal at the ER about 3 weeks ago as well. I try to take a D supplement, but I forget. I am looking for a pill box to keep with me so I don't have all these giant bottles (wellbutrin, birth control, cholesipol (only really when I need it, it made my gut a wreck), and vitamins).

Other than a CT which showed "possible mild" inflammation of my proximal descending colon and rectosigmoid colon everything has been "normal".
 
Well, I spoke way too soon about the D not often waking me as on Saturday I was woken up at about 3.30am with urgency resulting in horrible wayery D which left me feeling awful, so nauseous and hot, cold and shaking. I didn't dare eat much on Saturday so I had a bit of smoothie, a couple of biscuits and a fortijuce.

I think my tummy symptoms are slowly getting worse again, the bathroom trips are slowly creeping up, the pain is getting sharper especially my left side again, sort of near the bottom of my ribs, as well as the familiar lower right between belly button and hip and the mucus is more frequent. I'm constantly nauseous and can't eat much before feeling full, when I do eat for ages after I have this annoying lumpy feeling in my stomach which I hate. I noticed this weekend as well I seem to be quite pale, I'm not sure whether that's new or not as I've always been pale and "english rose" colouring but I did seem extra pale. I really hope it doesn't all go downhill too quickly, I don't see the consultant again until 8th of April. I swear to god if she tries to brush me off again I will flip out. This can't be just IBS!
 
Ohio, have they ever checked your B12 levels? If not, that'd be something to ask about at your next appointment (B12 is absorbed mainly in the terminal ileum, and that's also the spot where Crohn's is most likely to manifest - and low B12 can definitely cause fatigue, so that's something to look into). Definitely do try to take your vitamin D supplement regularly, and now that spring is here, try to get some sun on your skin as well (vitamin D is absorbed from sunlight through the skin and you don't need much, just 10ish minutes of sun exposure to your skin). As for pill holders, I've noticed that you can get cheap ones at estate sales. Most estate sales are for people who were older, and most older people take a lot of pills, so yeah. I've gotten several pill holders at estate sales myself. Otherwise, any pharmacy should carry them as well.

Elephant, that doesn't sound too bad, I was thinking you meant much junkier food than that. The omelet would be fine with me but not the cheese, and maybe not the GF crackers either (so often, GF products seem to contain a lot of either corn or coconut, and I don't do well with either - I actually do much better with gluten than I do with most GF products!). Sometimes eggs can cause gas though so maybe that was contributing to the bloat as well?

Sarah, your flare symptoms sound a LOT like mine. I get really pale when I flare as well - it almost seems like most of the blood in my body goes down to the digestive tract so it all leaves my face. There have been times in flares that I've been so pale that I've literally scared myself! I went to use the bathroom during one bad flare and caught a glimpse of a corpse in the mirror - then I realized, I was looking at myself! Eek! I was so pale I looked dead! I don't know why it happens, but the paleness is definitely a flare thing for me. And you waking up with watery diarrhea, and having chills and the hot and cold feeling, all of that just sounds so much like what I go through and I would imagine it has to be IBD. It's definitely not IBS! Are you able to call the consultant or the nurse and let them know about everything that's been happening? Maybe they could get you in sooner - if they can quickly run some tests while you're actively flaring (even just blood/stool tests if nothing else), maybe they can catch something and get you diagnosed. Good luck and feel better! I know how miserable you must be because I've had similar flares - take care of yourself, rest a lot, and stay hydrated. If you get too dehydrated, go to emergency and get some IV fluids - they should be able to give you some symptom relief as well (anti nausea meds, etc). Hang in there!
 
Right now I'm convinced it's either Crohn's or coeliac to be honest, symptoms fit both but I've always ignored the idea of coeliac because I don't notice a particular difference with eating bread/pasta but then I have something containing gluten every day so who knows. Apparently low IgA can give false negative bloods for coeliac so hoping to use that to push for gastroscopy I think.

To be honest with how bad the consultant has been I don't want to call them but I may go see my GP. I'm really struggling with food, I have to really force myself to eat because of the nausea, tonight I had a slice and a half of peanut butter on toast and was full and feeling sick, it's like three hours later and I still have the horrible lumpy feeling in my stomach and nausea.

I don't always get watery D but it's getting more frequent again and when not watery it's soft stool that falls apart quickly and quite often floats, it's horrid.

With the nausea I struggle to eat and drink and I honestly feel like for someone to actually listen to me I'm going to have to faint in public or something. My chest pain was really bad after my shower today and I think if it happens again while I'm off work I will go to A&E. I've got nearly two weeks off starting Saturday so at least I wouldn't have to worry about calling in sick!
 
Sarah, make sure to keep eating gluten for now - if you do have celiac, and you stop eating gluten, things will start to heal up and then the damage won't be seen on the scope. But as long as you have gluten in your system, it'll show up on the scope and the biopsies and that way you'll know for sure either way. I am guessing you don't have celiac - I never noticed any issues related to gluten either, breads and pastas are some of my safest foods. I have had 2 upper endoscopies w/ biopsy, and neither test ever found even the slightest hint of celiac. Still, it was good to know for sure - my mom rags on me for eating gluten, but it's not a problem food for me and I don't have celiac, so there's no reason for me to stop eating gluten (my mom is crazy but that's another rant for another day!).

Floating stool means you're having a hard time breaking something down, probably fats - I believe I've read that undigested fats are usually what makes stool float. Undigested fats can also look oily in the stool. At any rate, you might want to look at what types of fats you're eating and how much fat you're getting in your diet, as it sounds like you're not digesting it very well right now. Possibly some "healthy" fats would go better for you - things like olive oil or avocado. You mentioned peanut butter - you might also want to try a higher quality nut butter like almond butter instead and see if that helps things at all.

How's everybody doing today? I'm freezing! It's so cold and windy and rainy here. It's weather that just makes me want to have a bath and a nap, but I can't do either. Guts-wise, I'm doing better I think. The daylight savings time change really did a number on me - when my sleep cycle is interrupted, my guts get mad, but I think they've adjusted now. I've had some rectal pain but it's fairly minor, and no bleeding. I still honestly have no idea what's going on with the rectal situation, if my hemmies are gone and that area has healed or is still healing, or what. It's 2 weeks from today that I fly to Japan, so I'm just going to try to continue to heal and will be bringing my hemmie creams and steroid suppositories with me just in case. Really hoping I won't need to use them!
 
I feel much better today than yesterday. I had quite a bit of pain through the night, I woke up a handful of times due to pain in my RLQ. I usually (like every day) have a bacon egg and cheese English muffin and a small coffee with "caramel swirl" from Dunkin Donuts. Today I had maple oatmeal made with water and iced coffee with almond milk. So much better! I spoke with a pediatrician I work with who has had a UC diagnosis since age 12 and she recommended just eliminating dairy, gluten maybe, and corn (since it has caused problems) and maybe seeds for the same reason. I feel hopeful that I will feel better, but more confident that this is a chronic illness that I'll deal with forever.
 
Ohio, that sounds like a good plan. You might want to try an elimination diet, where you eliminate most foods, then slowly and gradually add things back in one at a time and see what affects you and what doesn't.

I have oatmeal every day and it seems to do good things for me, so I'm glad to hear that you did well with it too. Small amounts of soluble fiber seem to help me (but insoluble just makes things wayyy worse). You might also want to try psyllium husks, as those are also soluble fiber and can sometimes help.
 
I've gone on sick leave for a week, from work and school. Feels great, to be honest, I feel rested and like I can take the time to actually take care of myself and not feel stressed. Have been visiting family and doing a bunch of feel-good things.

I'm a little nervous about my upcoming tests. In part because of the possible discomfort of them but mostly I'm scared that they won't show anything.
 

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
960
ras96mg
R
C
Your thoughts, please. 10 yr old.
Replies
9
Views
530
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