Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Ha ha, giraffejen, it sounds like you're a similar driver to me. :p I get impatient as well - just today, in fact, I had to go to the bank, and there's a roundabout on the way (just a regular basic roundabout, nothing like that magic one). And there was an older lady driving slowly in the roundabout and she clearly didn't know what she was doing or who had the right of way (she did) so even though I yielded to her, she slooooowed down even more. Ugh! :p I was definitely yelling! "Drive! Move your car! Go!"

Speaking of cars - I think Kelleh is on her Sweden vacation right now, but Kelleh, if you see this when you get back - you had mentioned that American cars imported to the UK always seem to be automatic, even things like Mustangs. My co-worker drives a newer Mustang so out of curiosity I glanced into it when I was in the parking lot at work today, and sure enough, it's an automatic. How boring! A sports car, I would think that you'd want it to be manual! Manual just feels cooler to drive, plus you can accelerate faster in a manual and obviously acceleration is a big deal in sports cars. Now that I've thought about it more, it's so weird that so many cars here are automatic. I've done an informal survey of people I know, and I only seem to know 2 people who currently drive manuals - my brother and one friend, and both of their cars are older (1999 Honda and a 2001 Saturn). And I only know that my friend's Saturn is a manual, because it broke down in my driveway on Saturday. :p The starter went out but we didn't know what was wrong so we called for road service. The guy came out and taught us how to pop start the car by pushing it down a hill and then popping the clutch - fortunately I live on a hill! That was an interesting day, ha ha. It worked, though! I'd never seen a manual car be pop-started before so I learned something new.
 
Hey all!

I'm impressed by how well my meds work lately - and worried about my dependence on them. I really couldn't manage without them, I can't miss a dose without getting really really sick really fast.

Can't wait for my impending move, I'm hoping everything will calm down a little when I don't have to commute anymore. With hospital visits and just having an easier time getting to and from work and lectures, doing regular chores will be easier now that I'll have my own laundry room and dishwasher etc. Less wasted time and more independence, is the goal.

Not having a license I've been really dependent on others to drive me places and get me to the hospital for appointments and help me with laundry because I don't have access to a machine etc. etc.

It's going to be really nice to be able to do everything for myself.
 
Hi Izzie
I'm really happy your meds are helping you feel better.
I love your excitement at moving. Most people dread it! It is a huge upheaval in so many senses, but once you are in the place you want to be and you have unpacked the necessaries then great. Expecially if for you it means that life will be easier. I completely understand wanting/needing to have all the conveniences around you and not having to commute.
So how will you decorate your room?!
 
My heart is FINE :D It just beats fast. And I may or may not have a long QT interval (I'm all confused on that, but I just sent a message to the cardiologist asking for clarification - again). The cardio is sending me back to my GP for any vitamin testing (which I think she'll do, as my nutritionist is worried as well).

In other news, I'm off the dr for non-belly trouble again today, this time for my daughter. She has acne and gets blood drawn as she's on Accutane. Her last blood draw, her blood sugar was 49! She was up, and about, had had breakfast, and it was lunch time, but she was ok. But now we have to follow up and see what it may mean. In the past, when I used to exercise regularly, I was told I had exercise-induced hypoglycemia (I would pass out during cardio -- which they now think may be my heart, or blood pressure, or not) and my most recent A1C -- my cardiologist and endo both said it was "one of the lowest they had seen" - it was 4.something, which meant an average of the 90s in the last 3 months. I guess that's odd since I am WAY overweight. Or just odd in general. <shrug> I do have an aunt who is Type I diabetic, so I worry about pancreatic function.

In belly news -- I'm still on Xifaxin for a bit longer. I have actually had formed stools!! :ywow: Not regularly, but a few, and that makes me sooo happy, and hopeful! Maybe this has been post-infectious IBS afterall? If so, and this works, I will be one happy girl.

Izzie - I am on so many meds everyday to function, I just don't worry about it anymore. Better living through chemistry, I say.

That roundabout! OMG!

Kelleh - I know you're gone, but I hope you're having fun!

Cat - Maybe set a timer to remind yourself to eat? I have one son that gets so busy that we have done that before. He's 9, and tiny, but he seriously just forgets! I mean, he eats at meal times, but he should still stop and snack. So we set a timer to remind him to come inside and EAT!
 
I'm feeling awful today. :( Guts are actively angry and I don't know why. This started yesterday evening. I presume that my not having an appetite for a few days was building up to this? I'm nauseous, having a lot of d, I'm pale, having chills, just feel yuck. It's not a flare, I don't think - usually I get stuff like night sweats in a flare, and this started yesterday evening but no night sweats last night. And I slept through the night without having to get up to go, so again, that also makes me think it's not a flare. And no joint aches nor any other flare symptoms. Just my guts being unhappy for some unknown reason! I didn't eat anything unsafe, I've been taking my meds and doing regular exercise and just generally doing everything right. I really don't know why this is happening which is a bit frustrating. I like to have reasons for things! So yeah, I'm sick and frustrated today. Not great. At least I have a 4-day weekend coming up. I'm hosting thanksgiving this year but it's just my parents and brother coming over, so it should be pretty low-key, and hubby's doing most of the cooking. Hopefully my guts will allow me to eat some turkey on Thursday.

Izzie, you make moving sound almost fun! ;) I hate moving, it's always such a tremendous chore. The last time I moved was 7 years ago when we bought our house, and I'd be happy if I never had to move again. But I hope you enjoy your move! It sounds like there will be a lot of benefits to having a new place. And as for not having a license - do you at least have a bicycle? Or do you rely solely on walking/buses?

Wildmtn, that's great that your heart is okay! And that the Xifaxan is helping, that's wonderful! You were having vision issues as well, right? Has that also cleared up or been figured out?
 
Cat - yes, my eyes are wonky -- my Rx changed to basically double what it used to be. I have the new glasses, with the new Rx, and while things have gotten a teeny tiny bit more blurry, maybe, I haven't been back to an eye dr again yet to verfiy. Frankly I'm scared to, because they don't know what's causing it. Which is a silly reason. I see my Neurologist next month so I'll talk to her about it then.
 
Good luck to everyone with appointments coming up, and may our guts be okay through Thanksgiving.

I'm having tests to check for fistulas in a few weeks: first a fistulogram (also called a vaginogram), then a barium enema. I am really not looking forward to having people poke around those parts, but if it can lead to a diagnosis I'll endure it. The more time goes on the more I think that I might have a fistula, or possibly more than one. Has anyone here had either of those tests before?
 
Oh wow Cat, I've never lived anywhere for 7 years, not even when I was a child.

Whatever is going on with you sounds pretty miserable, here's hoping it passes quickly!

I do have a bicycle but I'm not reckless enough to try and use it much in the winter. Too risky in traffic. I'm pretty comfortable on buses if it's only short rides in the city, so I do alright.
 
I am SO ITCHY and am covered in hives. Have been for days. Probably (hopefully) it's just a bad case of winter itch but it is SO ANNOYING and nothing seems to be helping. I'm scratching myself bloody in my sleep and it's just driving me nuts.
 
CatLady, I have never had those tests, so I hope someone who has chimes in.

Izzie, my mom used to rash with stress, but have you changed anything recently - soaps or anything? I'd personally get checked out by my gp if it's that severe, just to get some sort relief if they can offer it if nothing else.
 
Izzie, the hives & itching sounds like an allergic reaction! Have you started any new meds, eaten any new foods, even done something minor like switched to a new soap or shampoo? I hope it goes away soon, but if not, get it checked out!

I like living in the same place for a long time. My parents bought their house when I was 6, and I lived there until I was 19. My parents still live there so they've been in that house for 30 years now! And yeah, it's been 7 years that we've owned our house - it'll be paid off in about 10 more years, so that'll be really nice.

CatLady, I haven't had either of those tests! So I can't offer a lot of insight for you, but I hope they go really well and get you the answers you've been looking for. When are you having them done? Keep us posted on how they go and what the results say!

Wildmtn, good luck with the neurologist next month, I hope the cause of your eye issues is nothing scary. Keep us posted!

As for me, I'm doing quite a bit better today. Guts are still not super happy, but it's like there's a tentative truce now. It's like I'm South Korea and my guts are North Korea. :p Every so often one attacks the other and there's yelling on both sides and then things calm down and go quiet for awhile again until the next incident. That's the current analogy that I'm using to explain what's going on in my body, ha ha.

For those in the US (and for anyone else who celebrates it), I hope you all have a happy thanksgiving and are able to eat lots of yummy food without trouble. And I hope your families, or whoever you see for the holiday, don't stress you out too much.
 
I usually have pretty bad skin issues in the winter but this time it's been a whole new level. I'm giving it until after the weekend then it's back to the GP for me...
 
Hives and itching went away with allergy meds, better moisturizer and topical steroid yay!

Does anyone else with GERD/reflux have chest pains when belching a lot? I'm wondering if it should concern me or if it's just... gas pains basically?

Moving in a couple days - SO STOKED!!! Will try to hold out over the holidays but then I'm going to really push for diagnosis/better treatment again in my new city.

The PPIs are working pretty well right now, things get worse when I cheat (eat too much, drink coffee or consume other acidic things, drink alcohol, forget medication or switch brands etc.) - but when I don't... things are okay-ish. I can function and only get some minor pain and burning. And a lot of belching.

But I still need a formal diagnosis and a doctor who takes me seriously. This illness thus far has gone up and down and I don't want to have to jump through a million hoops before I can get proper help when things get bad. I'm sure you all understand.

Kellehbeans - Hope your Swedish getaway was/is fun!

And I hope everyone in the US had a great Thanksgiving and that you were able to have at least some of your favorite foods without getting sick!
 
Izzie, I sometimes get chest pains but mine are weird. I usually don't get the classic heartburn type pain. I seem to get pains in my left chest, like in the ribs/lung area on the far left side. For the longest time I didn't know what was causing these pains, and they can be pretty sharp. But once, on a whim, I took some antacids while experiencing the left chest pain, and it went away almost immediately. So it's apparently some sort of referred heartburn pain? It's weird. My pain doesn't seem to be correlated with belching, but it does happen more when my GERD is more active. My belching usually mainly happens in the gym, it's definitely brought on by exercise.

I had an okay thanksgiving. It's honestly my least-favorite holiday - I don't do well with stuffing myself with food (although I was really good this year and didn't over-eat). And for me, I've had some bad things happen on/around thanksgiving in previous years - in 1998 one of my best friends suddenly died just before thanksgiving, and in 2006 my grandpa had a cardiac arrest and nearly died the day before thanksgiving. So I spent the holidays on those two years sort of in shock and obviously not having a good time, and every thankgiving since I sort of sit around wondering what bad thing is going to happen this year and reminiscing about the friend I lost and thinking about my grandpa (he's still alive but very unwell). But yeah, my guts were okay and I ate a reasonable amount of food.
 
Congratulations on surviving Thanksgiving! I always get images of turkey and pumpkin, but perhaps you have other delicacies. I eat pumpkin nearly every day, so does that mean every day is Thanksgiving?

I am off to see a surgeon tomorrow about a perianal growth. The MRI did not show up a fistula - which is what the GI thought it was - so I really wonder what it is. The sooner it gets cut out the better. Walking, sitting, cycling and inserting the pentasa suppositories might be a bit more comfortable.

I am very nervous at the moment. I am looking for a job. The last two "perfect" jobs fell through due to lack of resources and restructuring. I just had another interview last week and I don't even dare think about it, I would like that job so much! Please everyone, channel your most positive thoughts to the man I spoke to! And yes, I told him that the 4 year gap in my CV had been due to illness. Honesty is the best policy?

Izzie, you and me both are wandering souls. Since I left home 22 years ago the longest I have stayed in one home must be 3 years.
 
buttER, yes, turkey, pumpkin pie, mashed potatoes, things like that are all thanksgiving staple foods. Fortunately I do fine with those foods. But I also went to my aunt's house for a sort of bonus thanksgiving on Saturday, and instead of those foods, she was serving ham, corn, potatoes with the skins on - none of which I can eat! I did peel the skin off of a potato and there was also fortunately a bit of chicken, so I didn't starve. But it definitely wasn't ideal. I prefer the "classic" thanksgiving foods because those are much safer for me.

Good luck with the surgeon! Let us know how it goes. Good luck with the job as well, really hope you get it! I will be thinking happy thoughts and keeping all my fingers and toes crossed for you! I know how stressful job hunting can be, my husband also badly needs a full-time job in his field (computer animation). He's had a few interviews for jobs that would have been perfect, including one job where they said they had 100 applicants and hubby made it to the top 3 and he had several interviews with them. But, he didn't get that job either which was a massive letdown. He's currently working part-time in a shop for hardly any money and the hours are very sporadic, so he really needs a better job. It's been very frustrating for him especially, and for me as well as I've been the primary breadwinner for the whole time I've been ill, and it's been very difficult at times to deal with being chronically ill and holding down a full-time job. Him having a "real" job would take a lot of pressure off of me. I wouldn't necessarily quit my job if he got a full-time job, but I surely would feel less stressed. As things stand now, if my health took a major nosedive, I'd still have to work. If I don't work, then we lose our health insurance which means I wouldn't be able to go to the doctor or continue taking my medications. That would be extremely bad. Plus, my income is what pays our bills, so we'd likely lose our house if I couldn't work. Long story short, I *have* to work, because flaring out of control while living in my car is just not an option. :p But if he had a job, I wouldn't necessarily *have* to work. I could potentially stop working if my health demanded it, if he had a full-time job with health insurance benefits. The "what ifs" are so much better if he gets a good job, versus what they are right now.

Sorry for that rant! Can you tell I'm frustrated? ;) I really do hope you get the job and I understand your frustration at missing out on the previous "perfect" jobs. Let us know what happens! I will definitely be thinking of you and hoping for the best!
 
Hey all,

Sorry, been to Sweden and I have been inactive and not done much reading. In all honesty, the pain has pretty much cleared up recently. The frequency in toilet has not improved. However, I have noticed that if I don't eat fruit for a week, my BM's become almost normal. *ALMOST* So, I am just riding this out at the moment.

Hope all is well with everybody! Sorry, I haven't played catch up yet!
 
Cat you are a marvel. It sounds like a very stressful situation to me, you have all the pressure on you. And I don't know how you are, but I know that stress is not good for me one bit, I begin to fall apart. I hope your husband can find a suitable job (ie one he likes, can use his talent, and contribute to your earnings). It is easy to get dispirited when jobs are scarce. Being number 2 or 3 is nice to know even though it doesnt land the job. It is all about getting seen and making a good impression if you have the chance. Has he thought about freelance?

Kelleh welcome back, tell us all about the trip. Snow? Raw smelly fish? Tall glamourous Swedes? I'm glad the pain is less. You and me both will just have to drool over a fruit salad. Fruit messes me up no end, although I seemed to manage nectarine and cranberry crumbles over the summer but it's not the season any more.

I cycled to the hospital this morning (a beautiful cycle path along a canal through the woods so I can't complain) and the surgeon I wanted to see was not there, he had been called into surgery. I didnt want to see his replacement because he is not a GI surgeon. So a waste of time apart from the fresh air and exercise and a new appointment for 2 weeks time.

How long can I expect to hear if I have a job. I mean, I told them I was interested yesterday.....!! You can tell I am nervous/excited/worried about it. In the meantime I have been doing some coursework from a conference and I am quite pleased with myself, one completed yesterday and one completed today. Only one more assignment to go and then I might have to do something else like clean the house.

Have a good day everyone.
 
Did have snow. Had a case of a stolen snowman around the university campus. But, yeah, beginning of week was pretty cold, but it was generally really nice - it was easy to cope with! Did eat proper sushi while I was over there, but not the fermented fish!

I think I have fructose malabsorption. One of my doctors told me he'd diagnose me with it, just because I'd eliminated everything else apparently. I really need to push for the breath test, which I think is pretty hard to get hold of in the UK.

Good luck with the job!
 
Just popping in to say "hi!" I'm doing alright. Finished my course of Xifaxin and of course my stools are going backwards :( but we'll see if that was just a fluke couple of days. I sure hope so.

Izzie, glad the itchiness got better!

Butter - good luck with the job!!

Kelleh - welcome back :)

Cat - your Tday sounds like it was relaxed like mine was. I tried to eat carefully, and was ok for the most part (some grumbling, but nothing majorly bad).
 
buttER, yes, it is stressful but for the most part I'm okay. As long as I'm well enough to exercise, then I'm okay. Exercise is my stress relief and my anti-depressant, so I can deal with the stresses of life and work as long as I'm in the gym regularly. But when I'm not doing well and am not able to go to the gym, that's when things start to snowball. Fortunately, I've been doing pretty well lately. Ever since I had the iron infusions, my energy levels have been way up and I'm able to work out regularly. I've had a few bad tummy days here and there that have kept me out of the gym, but so far since having the infusions it's never been more than a few days that I've had to avoid working out. So far, so good!

I honestly have no idea how long it takes to hear back (from what I've seen with hubby, it seems to vary a lot, could be days or even weeks), but I hope you get a response about the job soon! Yes, hubby has done freelance work in the past and he still gets occasional freelance work. But there's not a lot of freelance projects coming in for him lately. He's done a couple freelance animations lately but that's it. It's certainly not something that can be relied on and doesn't even come close to paying the bills. What he needs is steady, reliable full-time work.

Kelleh, that makes sense about the fructose malabsorption and you improving after not eating fruit. Can you eat any veggies? Or do those cause issues as well? For me, I tend to do okay with most fruits. For awhile I had issues with strawberries, but lately I seem to do okay with them. I can have all other berries as well, sometimes blueberries change the color of my stool but they don't cause any pain or other symptoms besides the color change. I can have bananas as long as I limit myself to one per day - any more than that and I get vurpy and have some stomach pain, not sure why that is. I can do things like peaches as long as I remove the skin. Veggies seem to cause me more issues, though. Salad in particular is hit or miss, I seem to be able to digest it about 50% of the time but the other half the time it puts me in pain and sends me running to the bathroom and passing undigested chunks of lettuce. Fun times. :p

Sounds like you had a fun trip although I'm curious to hear more about this snowman theft that you mentioned! How much snow was there? We had a fair bit of snow here, about 6 inches or so, but then the weather warmed up and turned rainy, so our snow has already all melted (don't worry, there will be lots more coming all winter long!).

Wildmtn, that is interesting that your stools are worsening now that you're off the Xifaxan. I don't know enough about it to know if that means anything or not. Like you, I'll be interested to hear how you do longer-term.

How's everybody doing today? I'm pretty good. Going to the gym a lot this week - did weights yesterday, doing cardio today, weights tomorrow & Friday (rest day Thurs). I need lots of workouts to combat holiday stress. The holidays are already starting to stress me out because I still have a fair amount of xmas gifts to buy (and not a whole lot of money to buy them with). My tree is up and decorated though so at least that part is done. And I do have some handmade gifts done - my nieces are getting new scarves, and my sis-in-law and her husband and one of my uncles are all getting blankets. I'm working on the last scarf for my youngest niece and then I should be done with my xmas crocheting projects, I think. It doesn't seem possible that it's already December, though. Massively stressful when I woke up this morning and saw today's date!
 
Cat, I think I can tolerate veg. A lot of them don't contain fructose. You know prunes are meant to have a laxative effect? Well, they have the complete opposite effect on me. Luckily I've finished the bag now, but that doesn't stop me from eating other fruits, because I just feel as if I have to.

Well done! How are your energy levels doing now?

As for me, I've been struggling with my mental health quite a lot these last few days. I think it probably has something to do with the fact I am due for my time of the month. As I type this, I am finally having some cramps. I just want to get it out of the way!
 
Kelleh, my energy levels are great. I have had a few days in a row this week of not sleeping well, but even so I feel fine. I'm maybe a little tired, but it's nothing near as bad as it was before I had the iron infusions. I've still been able to work out almost every day (today's a rest day only because I know I need to let my muscles rest now and then to avoid injury - I'll be back in the gym tomorrow). My guts aren't stellar, though. I had Mexican food for dinner yesterday and my guts did not like that at all. It was homemade with tummy-safe ingredients (ground turkey instead of ground beef, and goat cheese instead of regular cow's dairy cheese). So it should have been okay to eat, but my guts got really unhappy. I had to take a Zofran to calm things down, and I also did a steroid suppository as a preventative measure to try to avoid having another bleeding hemmie. Ugh. So yeah, my energy levels are great but my guts are only so-so.

I'm sorry to hear that you're struggling. Hopefully your time of the month is over with quickly. How have you been doing otherwise, have you been okay? Are you still going to the gym regularly? I find that working out helps a lot with my mental health - I feel so much happier and calmer and less stressed when I've been working out regularly. It's like the depression and stress go away, at least temporarily, and it even helps me feel better about my body and my weight and stuff like that.
 
I see my nutritionist today. I get to tell her that stopping coffee didn't help, but being on Xifaxin did, and adding coffee back in during Xifaxin didn't make things worse, but now things are weird - D one day, C the next, and then D that woke me last night around midnight :(

Kelleh, so sorry you're having a rough time, hope it is just your time of month and that it's over soon

Cat, love hearing that you are able to work out and that it's making you feel so much better, but so sorry that the homemade Mexican was so hard on you! :-/
 
Aww, Wildmtn, that stinks! I hope things improve soon and that your fissure heals quickly. It can't be easy on you going back and forth from c to d, either, I'm guessing that's not helping the fissure. Hopefully the nutritionist was able to do something helpful for you. Hope you're feeling better soon!

Yeah, I loooove working out - the gym is my happy place - so I'm very happy that I'm able to work out like I want to again! :) I think the worst of the Mexican food episode is over so I should be able to go to the gym tomorrow as planned. The good news is, I had planned for today to be a rest day anyway, so it's just as well that my guts decided to throw a hissy fit to coincide with my rest day. :p I'm feeling okay right now so I should be good to hit the gym again tomorrow. I'm even thinking of taking a bike ride on Saturday - it's supposed to be sunny and 50 degrees F! That's unseasonably warm for December in Wisconsin, especially considering that the other week we got 6 inches of snow (it's already all melted though!). I went from having to shovel, to being able to ride my bike on a sunny warm-ish day. That's nuts! But I'm not complaining, ha ha.
 
Well, Wildmtn, I'm joining you in the "bleeding out my backside" club today. :( I definitely have a new internal hemmie. Fortunately I only passed a small amount of blood this morning, and nothing since then, but I'm slightly panicked about it. I can't afford to lose blood because that will drop my iron levels all over again. So I took some more Zofran to calm my stomach again, and I'll do another steroid suppository tonight (probably will do the suppositories for a few nights just to be certain). Ugghhh. So displeased with going through this stupid butt bleeding stuff yet again. I'm so over this!

Work is extra stressful at the moment, too. A co-worker of mine has suddenly had to go on medical leave, as he started having heart symptoms, and tests quickly determined that he needs a triple bypass! So he's having that done today and we were told it's a 4-6 week recovery time. So during that 4-6 weeks, the rest of us need to take on his duties while he's out. Because of the nature of my co-worker's projects, I just know that the bulk of the work is going to go to me and one other girl because we more or less know how to do those particular projects. So yeah, on top of my butt bleeding fun, I now am going to have extra work and extra stress for awhile. Fun. And I feel really bad for my co-worker who is having heart surgery - he's had UC for years, and he survived cancer a few years ago. He's definitely been through a lot of bad health stuff already, so I really feel bad for him. And I miss him! He sits right across from me and I know I can always vent about my health stuff to him and he'll understand. So on top of being stressed, I'm pretty sad and scared for him. Just hoping his surgery today goes okay.
 
Ah, darn it Cat, I'm sorry! That is a lot to have happen in a short amount of time - I hope the bleeding stops soon (for both of us!) and that your coworker comes through his surgery fine, and that his recovery time flies by for the rest of you taking on his work.
 
Thanks Wildmtn. I'm just sort of on pins & needles for the time being - my co-worker is supposedly getting out of surgery by 2 PM, so we should know more then. (It's 11:30 AM here right now.) So just sort of nervous for a bit until we hear hopefully good news about his surgery.

I think/hope the bleeding has stopped. My lower abdomen is pretty crampy so I've had a couple bowel movements since the bloody one this morning. Fortunately though no more blood so far. I had really wanted to go to the gym today, but now I'm thinking that it's probably wisest to rest instead. That's frustrating but rest is probably what my body needs more right now. Whenever my body frustrates me like this, like when I'm not able to work out but I'm pretty much functional otherwise, I tend to go shopping. So I'm going to go shopping today instead of go to the gym. I never buy anything particularly large or expensive, usually something along the lines of clothing from the consignment shop, or yarn from the craft store. As long as I have something to look forward to and a little treat for myself for getting through a rough day, then it's okay. That sounds dumb but that's how I get through days when I have to cancel a workout.
 
Hey guys,

Long time! How is everyone doing? I hate to jinx things so I will keep quiet about myself.

Regardless of how I feel I literally always suffer from so much excess 'air'...i mean to the point where I hate people staying round, just becomes stressful. Does anyone have any good remedies for this? Its such a nuisance.

Also, this time of the year has caused me to pile on the pounds :cry:
 
Hi everyone
Megan if you have some good news I would like to hear it!!! Daily life is so sh***y for me I would happily rejoice for anyone that is having a good time. Can't help you in the windy department. Move here and it is so windy no-one would notice anyway.

I have had a sugar craving even though I don't have PMT at the moment. And I have also been eating loads of things that I know I shouldnt (crisps). How can I stop myself? I now, don't buy them in the first place! I think it's just because I want something tasty because my diet is so bland. And I never know what to have for lunch or snack. So my guts are getting a little bit messed up. I need someone to tell me to behave and look after myself.

Cat I hope your colleague's surgery went well. That is a huge operation. Do you have any other sympathetic colleagues at work? will you get recognition or compensation for taking on extra workload?

Kelleh do you know if any "contraceptive" treatments stop the misery of PMT? I noticed I am getting worse and worse especially over the last year. For me it is the mental health and also nausea and dizziness that mean I lose weight every month.

By the way, how many vacation days do you usually get in the US? I'm applying for a job with a US company (but working in Europe) and I suspect it is way less than the 28/32 days annual leave I am used to.
 
Hi buttER,

Well the phase of about 3 months where I still never found out what was wrong with me, lost weight, had 24/7 stomach ache and upset stomachs, was pale etc etc...seems to have subsided in the recent months (touch wood). Now, its like my old IBS...occasionally causes issues but compared to what those months were like I will never complain about it again in the same way. Im having CBT because of it all only because every time i get a twinge i get scared its coming back and its a way to just get me to calm down and not expect the worst...i think its helping.

The thing i am suffering from is the above mention gas (had a laugh at the comment about where you live, would be handy for me!) and also bleeding after a BM occasionally for the past 2 months...its usually only a little on the toilet paper and its bright red, i have no pain etc so im assuming its an internal hemmie that apparently can take a while to heal, however its disconcerting none the less so i will probably follow up with my GP.
 
On reading a few previous posts it seems a lot of us have bleeding...i hear some long as its bright red its usually not much of a concern? I've had a few very healthy friends have hemmies/fissures before and its filled their toilet bowl with blood so it seems to be something everyone can get. One of my friends even called their dad upstairs to have a look because she was so worried..when is turned out to a hemmie she had a hard time looking her dad in the eyes for a few days, images of her dad staring into an unflushed toilet haunts her haha
 
Well I can't comment on bright red blood, mine is usually darker.
Its interesting to hear that CBT seems to be working. I keep wondering if I should try it. When I start to feel even just a little bit bad it changes my behaviour so I am more reluctant to do things because I assume I will get worse and then taking part in anything can be miserable.
 
Megan, I pass blood semi-regularly and mine is always bright red. I've had multiple tests done and the cause for me always seems to be internal hemorrhoids. So, not too scary of a cause, but the recurrent blood loss has caused me some trouble, specifically very low iron and ferritin which caused horrendous fatigue. My iron got so low that last month I had to have 3 iron infusions (I can't take iron tablets as they're very hard on my stomach). So yeah, hemmies are mostly benign but can cause a lot of bleeding sometimes, which over time can be problematic.

Speaking of bleeding, I had more blood in my stools over the weekend. :( Fortunately not too bad, just a teeny bit on Saturday night and a bit more on Sunday night. I'm back on steroid suppositories for a bit to try to heal this latest hemmie. Really wish I could just get off of this carousel of bleed, steroids, repeat. I haven't even paid for my iron infusions yet and I'm already experiencing more bleeding, it's just ridiculous. I see my GI again in February, and last time I saw him I had complained about the bleeding, and he said he could refer me to a colo-rectal surgeon if I wanted. If nothing has changed by February then I'm going to ask him for that referral. I don't think a surgeon could help, it's not like it's the same hemmie each time. It always seems to be a new one that bleeds, I heal it with steroids, wait a bit, then a new one pops up, repeat. Bleh, it's just depressing me. Blood coming out my ass is the least acceptable of my symptoms, you know? It's like, normal people are sometimes nauseous, normal people sometimes have joint pains. But normal people don't have blood pour out their ass. It's just so wrong, I hate it. And I obviously don't want to become iron deficient again either because the fatigue was horrible. Just ugh.

Sorry for the vent. At any rate, Megan, you said you would mention the bleeding to your GP and I think that's a good plan. They should be able to do an anuscopy, which is just a tiny scope that looks into the anus & rectum to look for hemorrhoids. No prep and no sedation required, I've had several anuscopies done and they can always be done right in the clinic during the appointment. It's not fun, but it's pretty easy and over with quickly and they should be able to ascertain the source of the bleeding. My GP also can prescribe me the steroid suppositories, so your GP should be able to give you something similar if it is an internal hemmie. Good luck and keep us posted!

ButtER, as far as vacation time in the US - I have been with the same company for almost 13 years now, and I've worked my way up to getting 26 days of paid time off per year. That's sick days and vacation days lumped together though, and for me the majority of them end up getting used as sick days. Which is honestly fine because I can't afford to take many vacations anyway. But yeah, if you're currently getting 28 or 32 days annual leave, you likely won't get that many if you work for a US company, particularly when you're just starting out with that company. I would imagine you'd get more like 10-14 days per year to start out with. I'm sure it depends on the company though.

And yes, my co-worker's triple bypass heart surgery went very well! Which is a relief. He might be back at work at some point in January which seems awfully soon. He's being released from the hospital in a few days which also seems really soon! Yes, I do fortunately have other sympathetic co-workers, but nobody else who has IBD themselves aside from my co-worker who just had surgery. I do have one co-worker who told me that her brother died from UC complications at age 28, so I know she's sympathetic because even though she doesn't have IBD herself, she's obviously had her life greatly impacted by IBD. And pretty much everyone in my small department at work has some health issues including my boss, so they're all sympathetic. My boss is very kind and understanding when I need to call in sick or go home sick, so that's very good.

ButtER, you mentioned getting dizziness when you're on your time of the month? Have you had any bloodwork done lately? I ask because when I lose too much blood at one time, I definitely get dizzy. You might want to make sure you're not losing too much iron or hemoglobin or anything like that. Do you have any fatigue or paleness, or paleness of the gums? My GI said that pale gums are a telltale sign of anemia so now I'm a bit obsessed with looking at my gums! :p
 
What a strange coincidence - I too have had a LOT of dizziness my time of the month this week and am thinking my anemia must've gotten worse, at least temporarily. I'm both pale, dead tired and dizzy, so yeahhh.

Haven't had any pain or other reason to believe I'm having GI bleeding again, so I think for me it's just that with my anemia from the bleeding I had earlier this year (my iron levels never recovered - is this normal?), when I get my period it just gets a bit too much for my body to handle. Will try to get an appointment for some bloodwork just to be safe, though.
 
Izzie, that definitely sounds like something to get checked out and I'm glad you'll be having bloodwork done. When my iron deficiency was diagnosed, my GI did say that some women do get seriously anemic from heavy menstruation, so it's definitely possible that it's your cycle causing this (for me, I'm sure my cycle isn't helping matters at all, but it's never been super heavy and my primary cause of iron deficiency does seem to be the stupid recurrent bleeding hemmies). Have you moved to your new place yet? And if so, has the search for new doctors begun? Because with the symptoms you described, that sure sounds like something that you need to see a doctor for right away.

In the meantime, can you eat some foods that have high iron? That might help the dizziness at least (I only get the dizziness when things are really bad, but the paleness and exhaustion were there basically all the time). I know that eggs are a pretty good source of iron. So many foods that contain iron seem to either be trigger foods for me or just plain disgusting. :p I can't do red meat and I have trouble with spinach too. Molasses is very high in iron, and it's not a trigger, but I find it repulsive. Still, I told my hubby that I have a new rule for myself - whenever I pass blood, I need to immediately eat a spoonful of molasses. So I did that last night after passing blood, I had a spoonful of disgusting molasses. Ugh, yuck! It was horrible! But hopefully it helped. Lots of foods, like breads and cereals, are fortified with iron, so I'm trying to have a lot of those as well. I think even my instant oatmeal has added iron. So on today's menu I have two cooked eggs in my packed lunch, and I had oatmeal as a snack earlier. Maybe if I can just eat tasty high-iron foods all the time, then I can keep the molasses spoonfuls to a minimum. :p
 
I've moved, yes, but I haven't talked to my old GI about transferring my charts yet. But if I see a GP here I'm sure I'll mention it and if it's a good one, who knows, might get a referred right away.

I'm trying to eat more red meat - which I actually can tolerate quite well. Also taking some iron supplements (though not pure iron pills - my stomach cannot handle those) and trying not to have tea after meals (because it messes with iron absorbtion).

I'm feeling pretty chill about everything with my stomach issues right now, not really because I have any answers yet, but because I can control it well enough with PPIs and avoiding triggers. It's started to make sense to me, so it's not as scary anymore. That's not to say I should get lazy and not actually get some answers...

Is dairy good or bad for iron absorbtion? I seem to recall calcium not being so great to combine with iron supplements?

I'm probably going to get in to see a GP tomorrow so we'll see how bad it is. I did almost faint at work last week though so that's obviously not the best sign.
 
Oh, and Izzie, I didn't answer your other question, as to whether it's normal for iron levels to not really recover over time. I don't know if it's normal for "healthy" people, but it's normal for me. I had started with the rectal bleeding in March. In June my iron was at 43 which is already low. Then in August I had 5 bad bleeding episodes in a single day which made me tremendously dizzy. I went to urgent care in August but they were terrible and didn't even test my iron so I don't know what it was, but in October when my GI tested it, it was down to30. So yeah, for me, it's normal for my iron levels to not recover. I'm on reflux meds of course which might effect that? I can't take iron tablets either. And as I said in my previous post, I can't eat a lot of high-iron foods such as beef or spinach, so I mostly rely on fortified foods like enriched bread, oatmeal, cereals - and eggs also. But clearly that's not enough (I was eating those enriched foods and eggs all along), which is why I'm adding the molasses now as well. I honestly don't know if it'll make any difference, and realistically I probably will have to go back for more iron infusions at some point if the recurrent rectal bleeding continues.

Long story short, yes, it's normal for me, but I'm not normal. :p I know that's not very helpful but that's my experience.
 
Izzie, I'm not sure about dairy - I believe I have read somewhere that vitamin C helps with iron absorption though. I believe it said something along the lines of, if you take an iron tablet, take it with orange juice as that'll help you best absorb it. With your reflux issues, I'm guessing that the acidity of orange juice is not so easy on you, so that's probably not happening. I don't think I've heard anything about dairy/calcium in regards to iron, but maybe you could take a vitamin C supplement with your iron? Might help. I'm thinking about adding a vitamin C supplement to my daily regimen as well (I currently take so many supplements that it costs a lot and I need to make sure what I'm taking is helping and won't hurt).
 
Re: Blood coming out of your butt, does anyone here get that more often while menstruating? I've now had this several times now, and it is a LOT of blood. I'm having it right now, even though I'm not supposed to be bleeding because I'm on the wrong part of my birth control cycle, grr. The blood from my butt looks like the same stuff coming out the front, so I think this may be related to my possible fistula? But I don't know.

I had a barium enema today, and hopefully will have results within a few days. It wasn't very fun, but at least I don't have to do another x-ray exam like I thought I was going to.
 
Cat-a-Tonic said:
Kelleh, my energy levels are great. I have had a few days in a row this week of not sleeping well, but even so I feel fine. I'm maybe a little tired, but it's nothing near as bad as it was before I had the iron infusions. I've still been able to work out almost every day (today's a rest day only because I know I need to let my muscles rest now and then to avoid injury - I'll be back in the gym tomorrow). My guts aren't stellar, though. I had Mexican food for dinner yesterday and my guts did not like that at all. It was homemade with tummy-safe ingredients (ground turkey instead of ground beef, and goat cheese instead of regular cow's dairy cheese). So it should have been okay to eat, but my guts got really unhappy. I had to take a Zofran to calm things down, and I also did a steroid suppository as a preventative measure to try to avoid having another bleeding hemmie. Ugh. So yeah, my energy levels are great but my guts are only so-so.

I'm sorry to hear that you're struggling. Hopefully your time of the month is over with quickly. How have you been doing otherwise, have you been okay? Are you still going to the gym regularly? I find that working out helps a lot with my mental health - I feel so much happier and calmer and less stressed when I've been working out regularly. It's like the depression and stress go away, at least temporarily, and it even helps me feel better about my body and my weight and stuff like that.
Click to expand...

Glad to hear that you are having the energy to go to the gym! I finally have finished all of my monthly, but I have a stomach ache now, which started last night and still continuing now, albeit right this moment, it's not hurting as much because I took some ibuprofen - leading me to believe it was from muscular pain rather than anything else. Went to the gym last night, and tried to do 2 sets worth of heavier weights than my usual to try and get used to doing more, and must have upset my stomach!

Did manage to get another fissure over the weekend though, but hey ho, think it may be healing this time, unlike the norm!

Sorry for not being active recently. Hope you are all as well as can be!
 
CatLady, I can't ever seem to tell where the blood is coming from when I'm on my period! I usually go with the presumption that most/all of it is coming from my lady parts, but it's honestly anybody's guess. How are you able to discern what blood is coming from where during your time of the month, if I may ask? I'm honestly curious to know because I can never tell!

Speaking of blood, more last night. I emailed my doctor from the toilet asking if there's anything else I can do or take to stop the bleeding. The steroid suppositories work well, but their effect doesn't seem to last 24 hours. I'm only supposed to do one suppository per day, just before going to bed, so that's what I do. And in the morning I poo out the remains of the suppository and I have a non-bloody bowel movement, go about my day, and am more or less okay up until the evening. Then every evening for like the last 5 days I have had a bloody bowel movement, it really seems like the suppository has just worn off by evening so the bleeding starts up again. So we'll see what my GI has to say.

Kelleh, with the bleeding happening again, I haven't been to the gym in a couple days. I'm trying to let things heal right now. It's frustrating because I do still have good energy! It's just the same stupid crap getting in my way again, ugh. I did work out on Sunday and I think, like you said, that upset my stomach more too. I hate that, when I try to push my body towards health but things just get worse. Ugh. I think I'm having a mini pity party today. I'm feeling frustrated and depressed, I cried in the bathroom this morning. Then I pulled myself together as much as I could but I still don't feel very together. I couldn't miss work today so I am trying to put on a happy face but even that isn't very convincing, I don't think. I'm basically vacillating between sadness and anger right now - I was super angry driving in my car this morning and now I'm just sort of bleh and weepy.

Sorry for that vent. Glad to hear your fissure is healing! That's very encouraging! Be very careful with ibuprofen, though. It can worsen stomach issues. I was taking a lot of ibuprofen in the months leading up to when I first got sick, and I do wonder if it was a factor in my illness. I'll never take that stuff again. But the summer before I got sick, I would go kayaking from 4-8 hours every weekend, so yeah, I took a lot of ibuprofen and then I got sick in October and have never been the same since. It's apparently very rough on the digestive tract. So be careful!
 
Cat, not being funny are you due for your time of the month with the weepiness? I know obviously this IBD is upsetting inside of itself, but you seem a little more upset than usual? Maybe it's just because you do have the energy and you're frustrated that you know you need to rest?

Either way, I hope you feel much better soon.

I lied about it getting better. For the first time ever, a fissure bled. Urgh. I guess it's a fissure any way. No idea. Annoying!

I know the ibuprofen is rough on the stomach, but it seems to have helped a bit, so for the time being, I am going to just take it when needed (if paracetamol doesn't work of course!), unless I am truly scolded again by my GI.

I have a job interview on Thursday! Argh.
 
Kelleh, no, I just had my period the other week - I always get it the last week of the month (I'm on the ring so I can time it the same every month) so it ended around Nov 29 or 30th. I'm definitely just weepy because I'm so frustrated. My GI responded to my email, and he's referring me to a colorectal surgeon. I don't think the surgeon is going to be able to help and clearly my GI isn't able to help any more either. And I don't want surgery because I don't feel like that's the right option for me and could just make things worse. It's just hemorrhoids ffs! It shouldn't be causing me this much trouble. And I just feel stuck, you know? The same stupid garbage keeps happening over and over. It wouldn't even be that big of a deal if I could just hold onto my iron, but I lose a bit more each time and can't seem to replenish it myself whenever I bleed out my ass. Just, ugh. I just want this to stop happening, I would like my blood to stay in my body where it is needed. You wouldn't think that's such a crazy request! Or such a difficult thing to fix!

Not being able to go to the gym is just another element of the frustration. I'm also exhausted today, my stomach was unhappy all night and I couldn't get comfortable and couldn't stay asleep, every time I moved or rolled over I got woken up by my stomach. It's being a real jerk lately. (I honestly haven't been super nice to it diet-wise either, but I also haven't been eating so badly as to merit this sort of reaction from my stomach.) I'm just having a day, a pity party day. I'm feeling very unwell and I'm very emotional. Usually I try to call in sick on these days so that I can stay in bed and cry and get all the emotions out so that I can be okay for awhile after the pity party day, but no such luck today. I have to work, I'm basically out of sick/vacation days, so that's adding to things even more. I just want to let all the emotions out, but I can't because it's weird when someone is sobbing at their desk. :p So I'm just trying to get through the day without scaring or weirding out my co-workers, at this point. It's not going super well though. I think I already weirded out one co-worker. She came by my desk to ask if I wanted to order anything for lunch (some other people were putting in a lunch order at a delivery place). I've been pretty nauseous this morning and food is not something I want any part of right now. So I very quickly and maybe a bit too forcefully said, "NO! No thank you." And I'm pretty sure the look on my face gave her the message of, go away and never mention food again! Hah.

Anyway, sorry for the long vent. Aw, I'm sorry to hear that the fissure isn't healed after all, that's definitely not a fun time. I hope it does heal for real soon. Good luck with the job interview! Is it for the same type of work as you do now? You do something with computers and code, right? Software development or something like that? That seems like a really cool field with a lot of interesting job possibilities. At any rate, I hope you get it - good luck and keep us posted!
 
I completely understand. Just go to the CR surgeon and see what they can do. If they can do nothing and say it's further up because your haemorrhoids have healed (and what not), then you go back to the GI and demand they help further.

I'm not sure you're going to weird out or scare colleagues, so if you do happen to let it out without meaning to, I am sure that you will be OK. :) You never know, they may actually be very supportive of you!

Don't worry about a 'rant', this is the place to be for a rant! I just hope that you feel damn better soon!

Yeah, definitely the same, but for a 16k payrise, moreorless! I think I'm batting out of my league, but now they've sent me the job spec, I actually may be more than capable! Anyway, experience from an interview never hurt anybody. I am just finding it hard to want to move, and I feel as if I won't get anything as I don't have a degree - although I have an equivalent. But hey, I will see. Stomach is not good at the moment, keeps hurting again! It was silent for 3 weeks!
 
This is definitely TMI, but ever since I started having weird stuff coming out in my urine and bowel movements, I've wiped the front ant back separately. So it seems to me that bleeding out of my butt is strongly related to vaginal bleeding. And the color and appearance of the blood looks the same, which leads me to believe that it's coming out of the same place.

Hopefully I find out barium enema results today or tomorrow. If it's another normal test I may scream. At least I have a colonoscopy scheduled for a week from today. If that comes back normal, then I don't really know. Maybe I'll ask to be tested for celiac disease, since my sister has it.
 
CatLady, ah, that makes sense. I hadn't thought about wiping both areas separately! I have a bidet sprayer attachment thing on my toilet at home so I don't know if that would even work as the entire "down there" area gets wet from the bidet sprayer, but I could try wiping separately at the office as those toilets don't have bidets. I'll make myself a mental note to try wiping separately when I start my next period. That sounds like a much better idea than just guessing/hoping that it's all menstrual blood and coming from the correct hole!

As for the possibility of celiac, upper endoscopy with biopsies is considered the gold standard for diagnosing celiac. The blood test for celiac isn't super accurate (I forget if it's false positives or false negatives, but it's known for giving a high number of false results). Since you're having a colonoscopy and will be sedated anyway, you may want to call and see if they could do an upper endoscopy at the same time as your colonoscopy. A lot of doctors like to do both scopes together just to be thorough anyway, so they should be open to the idea. Or, if you really suspect celiac, you could always just try a gluten-free diet for a few weeks. If you notice improvement then you likely do have either celiac or a gluten sensitivity. Some people with Crohn's also just tend to do well when they cut out gluten for whatever reason - I have an aunt with Crohn's but no celiac, but she does much better when she's gluten-free. So, that could be worth a try as well. Good luck with the colonoscopy, keep us posted! And good luck with those barium enema results as well, got my fingers crossed for you that you get some good, worthwhile results!

Kelleh, thank you. :) I think I just needed to vent this morning! I'm doing significantly better mentally this afternoon, no more weepiness. And wow, that is a dramatic rise in pay, I hope you get the job! I wouldn't worry too much about not having a degree, either. I only know one person who does computer code writing, my brother. He also doesn't have a degree, he dropped out after 3 semesters of college and then after working crap jobs for awhile (gas station attendant, food delivery driver) he taught himself how to program computer code via the internet, and now he has a really high-paying job. He still has no degree but it doesn't seem to matter much in that type of job. I will say, he did go out to Silicon Valley in California to look for a job there but he had no luck. I'm sure that there is a ton of competition for jobs out there though so in that case having a degree probably does matter. But anywhere that's not Silicon Valley, it seems like having a degree isn't an absolute necessity. So, good luck! I really hope you get it!

I hope your stomach calms down soon! Mine finally did, I didn't eat anything all morning and was pretty nauseous, then all of a sudden I got HUNGRY! So now I'm stuffing my face which surely isn't the wisest option, but lately it seems like even the wisest options lead to butt bleeding, so at this point I don't even really care. :p I'm sure I'll care later but not right now, right now I'm just starving!
 
Hi everyone

Kelleh I have a job interview on Thursday too!! Lets hope the 10th December is a lucky day for both of us! I am lined up to see 7 people in 5 interviews over 2.5 hours. OMG. They only invited me for interview yesterday, my family is here to visit until tomorrow, and tomorrow afternoon is full with school performance, ballet lesson (not for me). I would prefer to have more time to prepare, especially as I only got the job description yesterday too. I'm not sure how much I am going to be tested.

Cat-a-Tonic you are having a rough patch. How is your colleague after his op? And I was wondering if you can get the steroid suppositories half strength and use them every 12 hours. It wont hurt to see a GI surgeon to get an opinion either.

CatLady I also really hope the scans will shed some light about what is going on. I would be quite freaked out I think.
 
ButtER, good luck to you on Thursday as well! I hope you and Kelleh both get some good news about the jobs!

I'm not sure if the steroid suppositories come in half strength dose, I think it's only the one dose (it's 25 mg of cortisone). It's only meant to be done at night - ideally, you put in the suppository right before bed, and it works its magic all night. If you use the bathroom in the night though then you're essentially pooping out the steroid, so because of that it's not really meant to be done during the day. You can't be expected to insert a suppository, then not use the bathroom for 8 hours during the day, particularly when things like IBD are involved (and yes, I can feel the suppository in there and it makes me want to go, so it's sometimes hard to keep it in all night - last night I had to get up to go and it seemed like I poo'ed out the whole thing, so I just did another suppository). So yeah, I guess I'll wait to see what the colorectal surgeon has to say. Then I'll likely go back to my GI. Oddly enough, I don't bleed out my butt when I'm on oral steroids. I was on Entocort for most of 2014 and I didn't bleed at all the entire time, but I started bleeding again about 5 months after coming off of Entocort. I don't like being on oral steroids long-term though, so that's not ideal either (the long-term side effects are not good, plus Entocort gives me 5-day long migraines which is really not a fun time). I really don't know what to do. Just going to have to wait it out until I can see the surgeon I guess!

Oh, and my colleague is doing very well. :) The latest update on him is, he's extremely lucky to be alive - apparently his condition was referred to as "the widow maker" by his doctors. So yeah, he's lucky that they caught his heart condition before it killed him! He's apparently doing very well, he was even released from the hospital today! Considering he just had the surgery on Friday, that seems very fast. No idea when he'll be back to work, but so far he's doing very well and is extremely fortunate.
 
Just talked to the doctor. My iron levels are ****, I'm pretty severely anemic. I don't know if it's CBC or something else but it used to be 109 (which was low), and now it's 95.

I'm terrified.

But that's me getting worked up. I don't know if it's my stomach bleeding further or if it's just that my levels never recovered from the last time. I haven't really seen any signs of stomach bleeding lately, just had regular GERD (or whatever it is, but I'm pretty confident it's reflux) symptoms, so... I don't know. Guess it could be bleeding a little all the time or something. Calling my GI today to DEMAND a referral, I don't care what he says at this point he's going to write the damn thing or I will report him.

And starting iron... pills or infusions or something, I haven't spoken to the doctor yet but I need to do something about the iron ASAP because I'm starting to feel it with the dizziness and being tired etc.

Also think I'm going to ask the GP to do another occult blood test just to check.

Ugh, it's so hard for me to control my anxiety when stuff like this comes up.
 
Last edited:
I also have an interview on Thursday....coincidence!

Izzie, have you tried CBT? Could be something worth looking at for the anxiety. I have found it helpful albeit I do occasionally still let me anxiety run away with me at times, but I think everyone does.

Out of curiosity, I have been wondering about the following: can the symptoms of crohns be awful for months and then just disappear completely without any medical aid or does remission usually only come after medicinal intervention?
 
meganwilson1991 said:
I also have an interview on Thursday....coincidence!

Izzie, have you tried CBT? Could be something worth looking at for the anxiety. I have found it helpful albeit I do occasionally still let me anxiety run away with me at times, but I think everyone does.

Out of curiosity, I have been wondering about the following: can the symptoms of crohns be awful for months and then just disappear completely without any medical aid or does remission usually only come after medicinal intervention?
Click to expand...

Well honestly my anxiety is perfectly under control when I'm taken seriously by doctors :p Soooo, I mean. I don't feel like I should be treated for anxiety when the only reason I'm anxious at the moment is that I'm friggin sick.

I've been in plenty of therapy, so really it is something I'm perfectly capable of controlling, I just wish that I didn't have to hound medical professionals in order to be taken seriously. Because it's needlessly stressful.
 
@Cat - I'm very glad you felt better after a while! The vent was just what the doctor ordered! (No pun intended here)

The thing is, a lot of it is to do with experience, which I have. I don't mind if I even get the Junior role that they handed me. There's one for Junior and one for a normal SharePoint Developer. I'm quite excited to go, and I've recently got my confidence back because I've managed to have self-control over my eating and exercise, and I'm not so bloated as I used to be! I don't think I'm going to be able to eat before I go, but by the time I get back to work, it'll probably be about 2:30pm. Then I'll feel guilty for eating! I'm just worried, because job interviews for me will always come with tests. I've never been on a job interview with the experience I have - so the worry is, am I good enough? I'll do my best, but will my best be good enough? I'm absolutely PANTS at tests! But, we shall see. I'll go in with a pretty smile, and hopefully that'll win them. :p

@butter - wow, that's a coincidence! Hope you do well in your interview! What sort of job are you going for?

@megan - 3 of us is insane! Let's hope that all 3 of us do extremely well and get a good pay rise/job if that's what you're going for! What are you being interviewed for if you don't mind me asking? Also, I think you may be able to go into remission without medical intervention - I guess it just depends on what you're eating and how you're looking after yourself!

@Izzie - Wow girl! You definitely need to demand a referral NOW! This is where things start getting too far and you definitely need some answers, quickly if you can, or things could get even further and you could end up in hospital!

Also, I understand about the anxiety thing. Plenty of therapy, know how to handle it. But you KNOW you're ill, and it's pretty ironic when you have to hound medical professionals to get to a decent stage. That's like me. I was meant to have a psychiatric appointment soon, but nobody has actually contacted me. :p
 
@kellehbeans - RIGHT? So annoying.

But yeah the doctor wasn't too alarmed? Alarmed enough, but it's not so bad I need a transfusion or anything. Just more friggin pills that make me nauseous :(

I have no real reason to believe I have GI bleeding currently, but I'm no doctor so I really don't know. My stomach symptoms are okay, I don't have any pain, some heartburn and some belching but no worse than usual. No visual signs of GI bleeding at all.

Could be that I just never quite recovered from the last bout and I also just had my period which was unusually heavy soooo yeah. Doesn't have to be the end of the world but I really would like some actual HELP for a change(!)

I do feel better now living in a new city because here I can get myself to hospital within 5 minutes if I need to. So that's comforting, if things get too bad I can always just go to the ER. That was not really the case when I lived in a smaller town where the closest real hospital was a 30 minute drive away...
 
@kellehbeans, i took the plunge and went for teaching positions...i have applied to do a PGCE but in reality i think i should try being a Teaching Assistant for a year and see how it goes (such bad pay though). However, anything is better than now, i havent worked since September because i quit to do work experience. SO POOR.
 
@Izzie - Just give the pills a chance, sometimes when you first starting taking something new they will make you nauseous. I find that with my AD's, they used to make me throw up occasionally. But once you settle on them, and your body gets used to them, you'll be OK. It's only so you get better. Just take care of yourself. Your period could have possibly been another cause of the drop in iron levels and why the doctor wasn't that concerned, but knows it's low enough for you to need some pills.

@megan - Oh Megan! I didn't think teaching assistant was that bad of a pay, especially for the work you have to do? I can understand why you'd quit work experience though - at least you have something to put on your CV! Always looks good. :)
 
Izzie, they must use different units of measurement over there for iron. I know that when mine was at its lowest, it was at 30 ug/dL. My GI said that 50 is the bare minimum that it should be at, and my mom was saying that for female high school track runners, they won't allow girls to join the track team if their iron is below something like 75. So yeah, I was really really low as well. It definitely is scary and I completely understand your anxiety over it! But the good news is, most doctors do take low iron very seriously, and they should get you on some treatment right away. If you end up having iron infusions, I should be able to answer any questions you have about that. :) Deep breaths! Now that it's known that your iron is low, the first priority should be to get your levels up, and second should be to figure out what's causing the deficiency and of course to put a stop to it. Unfortunately for me the second part is proving much trickier than the first (more blood in my stool last night, ugh).

I also agree that getting a fecal occult blood test done sounds like a good idea. You wouldn't be seriously iron deficient without some sort of bleeding going on (I think). Certainly I didn't become severely deficient until I started bleeding regularly. And yes, my understanding is that small but constant amounts of occult bleeding can indeed cause anemia/iron deficiency, so that could be the cause.

At any rate, I've been in a similar situation so I know how you're feeling. It's terrifying to have solid information about how terrible you're doing, but in a way it's also validating. For me it certainly explained why I was feeling dizzy at times and constantly exhausted. And I will also say, if you do have the infusions - I felt a noticeable difference the very next day, so if you have infusions you should hopefully also feel some immediate relief. Let me know what the doctor says! If they schedule infusions, hopefully you can have them soon. I had my first infusion exactly one week after my GP placed the order for them, so here at least there seems to be a very short waiting time for appointments. I'm rambling now, but good luck and keep me posted! And let me know anytime if you need to vent about the anxiety, I have been there done that just last month (and might do it again if my ass doesn't stop bleeding) so I know what you're going through.

Edit: Wait, I just read your most recent post. So it sounds like you did speak to the doctor and they're just saying that you should take iron pills? If it were me, I wouldn't accept that. I told my GI that I cannot take iron pills as they upset my stomach, so then right away he said we could do infusions instead. Honestly, the infusions did upset my stomach (particularly the first infusion, the second and third infusions weren't nearly as bad) but it was worth it to just have an upset stomach for 48 hours rather than every day from taking pills. If it were me, I'd call the doctor back and say that iron tablets just make you feel awful and ask what your other options are. They should offer you infusions, it's ridiculous to make someone with a history of digestive issues take a pill which is known for it's stomach upsetting properties.

Megan, wow, good luck with your interview as well! Isn't there some old saying about how good things come in threes? Hopefully this is good luck for all 3 of you! And as for whether IBD can spontaneously go into remission or at least get much calmer/quieter spontaneously - yes, I believe it can. It's not common and it's not something that can be relied upon - it's not a remission that's being maintained by medicine and there isn't necessarily mucosal healing, just a reduction or elimination of symptoms (but symptoms don't always necessarily correlate with inflammation - you could still have simmering inflammation that could do damage over time if not treated). So, long story short, it could be remission, but if it were me I wouldn't trust it and would still pursue further testing and treatment. But I am glad to hear that you're doing better!

Kelleh, that's fantastic about your getting your eating and exercise habits to a more healthy place, well done. :) But please don't feel guilty for eating at 2:30 PM - I eat lunch at that time! I always eat a late lunch, particularly on days when I go to the gym on my lunch hour. Because of my GERD, I need to not eat anything for at least 2 hours before working out. So I have a snack, usually oatmeal, at about 11:30 AM. Then I go to the gym at 1:30, get back to work at 2:30 and then eat a small lunch at my desk while I catch up on emails. It's a pretty good system.

Speaking of the gym, I guess I'm skipping going again today. The bleeding happened again last night and my stomach feels just a bit "off" today so I know I should rest and try to let things heal and not go to the gym. I'm not nearly as emotional as I was yesterday, I'm back to feeling a normal amount and range of emotions. :p And speaking of waiting to get an appointment, I'm doing that myself - I had emailed my GI asking for him to please put through the referral for the colorectal surgeon, so now I'm waiting for a call to schedule that appointment. I hope it doesn't take too long.

Oh, and this is very nice - my hubby built me a present. :) Have you guys ever heard of the "squatty potty"? It's like a little stool that goes around your toilet, it helps you get into more of a squatting position when you're using a standard toilet. Squatting rather than sitting, it supposedly helps empty the bowels better and it also supposedly helps prevent hemorrhoids. Since hemmies have been the story of my life this year, I had asked hubby if he could try to make me something similar to a squatty potty so that I could give it a try, because I have been getting desperate to just stop the stupid bleeding already. So, he built me one yesterday! :D So far so good, I did feel like it was easier to evacuate my bowels last night. I did pass blood, but it was my first time trying the homemade squatty potty and I think the blood was going to happen whether or not I squatted (last night was like the 6th night in a row that I've passed blood in the evening, it's becoming a trend). So I'll continue giving it a try for a while and see how it goes. I really hope it helps to reduce the hemmies and bleeding.
 
Just wanted to take a quick moment to send good luck with all three of the interviews this week!!

Izzie - I'm so sorry your iron is so low, I hope they get that sorted quickly!

Cat - I have had the SquattyPotty ads, with the unicorn, on my FB feed this week LOL!! I hope your homebuilt one works wonders!

I'm off to see my mind-body counselor today. I'm not sure what we'll work on, because I feel like I've got a good handle on the belly pain, and while I had a big scare with the heart rate thing recently, I have a handle on that, now, too. Maybe we'll check in *shrug*.
 
Yes, I called back and I have a phone appointment with the dr tomorrow afternoon. So first thing is to get iron in me in a way that I can handle, and an occult blood test just to make sure that I'm not having GI bleeding right friggin now.

I don't think it's impossible that the recent dip is due to just... periods and bad diet? When I started getting iron deficient I could SEE that I had bleeding, and I had horrible GI symptoms so that all made sense. But now I'm having none of it, so either it's very very occult bleeding or it could be that I'm just now coming off a really heavy period, and have eaten rather poorly for a while. I don't know. I find it strange to believe I'm having GI bleeding right now since I feel pretty okay stomach-wise?

It's really complex having just moved, because the new GP doesn't have my old charts so I've had to call a million and one people to try and get them transferred -_- They'll get here next week, apparently.

The old GI is still refusing, so called the GP and he was like "screw 'em, I'll refer you, it'll be easier anyway" - so that's happening. Probably won't get in with a new GI until like... February-March, though, so blaarrghhh.

Until then I have an adequate GP and live very close to the ER so I guess it could be worse? :p My stomach is feeling the same as it has been. Controllable, stable, but a pain in the ass sometimes. Am feeling the anemia in a "fun" new way though - lots of dizziness and am sleeping like 12 hours a day.

ETA: Oh and new GP is thorough and already scheduled a follow-up in 4 weeks to check if the iron levels are improving etc. so at least he doesn't seem to be a complete jerk.

Oh and what the heck is MCV? Apparently mine is 70 when it should be over 80? Don't know what it is.
 
Good luck with the phone appointment, Izzie. I hope you're given other options besides just to take iron pills or try to eat more high-iron foods.

No, I don't think it could be due to just periods and bad diet. My GI explained to me that most women tend to be on the low end of normal and men tend to be on the higher end of normal, and periods account for that. I'm not an expert, but I would have to think that your diet would have to be supremely horrendous to make that big of a dent without something else (like GI bleeding or malabsorption) going on. You said that you can eat red meat, so right there that's a big source of iron. Even if you're eating a lot of fast food, you're still likely getting enough iron on a daily basis. Breads are usually fortified with iron - I had ordered a sandwich to go from a local sub sandwich shop the other day, and out of curiosity I looked up the nutritional info online. The bread in that one sandwich has 45% of my daily recommended iron! For just one sandwich! I was thinking it wouldn't have hardly any iron, I was very surprised. So I apparently get a lot of iron in enriched foods without even realizing it, and I'm presuming you might as well. Because of that, I really don't think it could be as simple as just diet and periods without something else going on as well.

My MCV was low as well and my GI explained to me what it is but then I forgot! :p It's something to do with red blood cells I think. I'll have to do some googling and I'll also look up what my MCV was. My GI was concerned about it but he made it sound like it was something that the infusions and/or stopping the bleeding would fix.

Wildmtn, I haven't seen that ad! I'll have to look for it, too funny. I'll keep you posted on how the homemade plywood squatty potty is working. So far I can tell you that my cat hates it, ha ha. She likes to sit by my feet and/or by the heating vent in the bathroom, but it sort of blocks her access to both now. She's made it known that she's very miffed. :p Usually she follows me right into the bathroom every time, but she hasn't set foot in there since the homemade squatty potty has been there.
 
Okay, so back to the MVC thing - I looked mine up and my MCV was 78 back in August. My GI said it should be at least 80. I didn't think 78 was a big deal because it's pretty close to 80, but my GI made it seem like it was a fairly big deal. He was concerned.

I also googled MCV and found this:
http://answers.webmd.com/answers/1198398/what-is-mcv
I thought this sentence was interesting:
An MCV below 80 fL is called microcytosis (or microcytic anemia if the red blood cell count is also low). Microcytic anemia can be due to iron deficiency, blood loss (in women, most often from menstruation), chronic illness, or a condition causing abnormal hemoglobin like sickle cell disease or thalassemia.
Click to expand...
Hah, I have all of those that I put in bold! Blood loss, iron deficiency, chronic illness. So, I guess that explains why my MCV was low-ish.
 
That's pretty interesting. 70 is probably really ****** then...

Spoke to a nurse again and she was concerned about my Gaviscon intake and thought that might be a contributing factor? Apparently it blocks iron absorbtion and I've been taking a fuckton of it. That and Omeprazole and possible malabsorbtion? I'm not sure how sudden this drop would have been seeing as I haven't had bloodwork done since like... I don't remember exactly but early October maybe?

Everyone I've spoken to thus far doesn't seem to think it's another GI bleed since I don't have pain/changes in stool and am on Omeprazole... Sounds like they're more inclined to believe it's some kind of malabsorbtion thing. But I guess I could be having microscoping bleeding that contributes to anemia over time even if it's not noticible to me. I've no doub that the bleeding I had earlier this year is what started the anemia, but I had actual symptoms of it then so I'm more hesitant this time, since I can imagine that just coming off of a bad period and having done a lot of not-so-smart things re: iron (i.e. stopped taking the iron pills because side effects and didn't look into another solution, drinking way too much friggin tea which is not great for iron, taking Gaviscon, being on Omeprazole and eating somewhat poorly).

But we'll see, I'm trying iron pills tonight at least to calm my own stress about not doing anything - maybe I'll get lucky and this brand doesn't make me feel awful, and tomorrow I'll talk to the doctor.

It'll be easier next week when my charts are here, right now I'm trying to remember everything off the top of my head and doctors are so hesitant to believe their actual patients, they want numbers black on white.
 
Hello, brand new here. I have been unwell for 3 years, being told by GP and gastro it was IBS. But my symptoms are vomiting after eating, extreme tiredness, bleeding and the worst in diarrhoea, it can keep me up all night. I am about to lose my job due to my high sickness level. I have finally found a Dr. who has said I might have crohns so I'm awaiting bloods next week and a referral back to gastro. Its literally ruining my life at the moment, I'm only 24 and its destroyed 3 years of my life, causes me so much anxiety, often I cant leave the house (once you soil yourself in public it puts you off!!) Just very fed up and sad : / losing my job will just top it all off, I couldn't survive without a job
 
Hi aprilwilliams91, welcome to the forum and the club. I'm sorry you had to join us, but glad you found us. Your situation sounds really bad, I'm so sorry to hear it. I also wouldn't be able to survive without a job so I understand that completely. May I ask, where are you located? If you're in the US, you should be able to apply for Family Medical Leave (FMLA) which will give you some job protection. I'm not sure if there are other similar programs in other countries, but if you let us know what country you live in, someone on here might be able to help.

May I also ask - what tests, if any, have you had done so far? And do you know what blood tests you'll be having done next week? If you've had tests done in the past, did any of them reveal anything?

I'm glad that it sounds like you've found a doctor who takes you seriously, that's a very important thing. Your previous doctors sound awful. Bleeding, vomiting, and being kept up at night with symptoms are all not part of IBS but could be IBD (Crohn's/colitis) so I'm glad you're pursuing testing. Keep us posted on how your blood tests go and how you're doing!
 
Cat-a-Tonic said:
Hi aprilwilliams91, welcome to the forum and the club. I'm sorry you had to join us, but glad you found us. Your situation sounds really bad, I'm so sorry to hear it. I also wouldn't be able to survive without a job so I understand that completely. May I ask, where are you located? If you're in the US, you should be able to apply for Family Medical Leave (FMLA) which will give you some job protection. I'm not sure if there are other similar programs in other countries, but if you let us know what country you live in, someone on here might be able to help.

May I also ask - what tests, if any, have you had done so far? And do you know what blood tests you'll be having done next week? If you've had tests done in the past, did any of them reveal anything?

I'm glad that it sounds like you've found a doctor who takes you seriously, that's a very important thing. Your previous doctors sound awful. Bleeding, vomiting, and being kept up at night with symptoms are all not part of IBS but could be IBD (Crohn's/colitis) so I'm glad you're pursuing testing. Keep us posted on how your blood tests go and how you're doing!
Click to expand...

Thanks for the reply. I live in the UK, I'm not really sure what I could get here. What is especially annoying is I work in a hospital! When my symptoms started 3 years ago I had bloods and stool sample tested, they said they showed some inflammation but not a lot. I hade an endoscopy, so a camera down my throat to test for coeliac disease which was negative, then I never really got much help after that. I went gluten free and this stopped the vomiting but did not help massively with diarrhoea and didn't help at all with bleeding or tiredness. I'm also type 1 diabetic, and undergoing investigation for a very fast heart rate, so its all making me feel very fed up!! I had to take 6 Imodium's just to leave the house the other day but I hate taking them as it just makes it worse in the long run. Ive been off work for 2 weeks, with my sickness percent already at over 25% I attempted to go back to work today, I last 3 hours as when I ate lunch my stomach started again : /

Thanks for the support I'm really glad I found this forum!
 
Welcome, April.

Barium enema came back normal. No fistula seen. At this point I don't even know what to think. I'm just tired and frustrated. We'll see about the colonoscopy, I guess.

I know I didn't prep properly for the barium enema. I was supposed to be fasting, but no one told me. I wonder if that could have affected the results?
 
April, it is possible to have both celiac and IBD (or IBD and a gluten sensitivity), so that could be why stopping gluten helped you somewhat but you're still having a lot of symptoms. As for the heart rate issues, I'm going to tag Wildmtnhoney as she's been having some heart rate issues herself lately and might be able to be more helpful than I can be on that subject. I can certainly relate to feeling fed up, and I hope you can get some answers and start feeling better very soon. We're always here for support so please feel free to vent or ask any questions here! :)

CatLady, how frustrating! I haven't had a barium enema myself so I don't know the answer to your prep/fasting question (anybody know?). How long were you supposed to be fasting? I would imagine that you'd have to fast for a full day at the very least in order for your colon & rectum to be emptied. If they're just looking at the last part of the digestive tract, that's the last part to be emptied obviously, so it would take quite awhile. Depending on your transit time, it could be 2 days or even more. So, I honestly have no real idea but my guess would be that it wouldn't make a huge difference? Hopefully someone else will know more than I do on that subject. I am really sorry though to hear that they didn't find a fistula - I know that would have explained everything, and it's so disappointing to not get answers. When do you have the colonoscopy?

As for me, today is slightly ridiculous. :p My boss asked me how I'm doing health-wise and I had to be honest and say not so good. She was like, "You have to be healthy!" Um, yes, I'm really trying! My stupid bleeding rectum hasn't gotten the memo though! :p Ugh, ha ha. At least I'm in a much better mood than yesterday!

Oh, and on the subject of iron deficiency - has anyone ever tried the "iron fish"? It's just a fish-shaped piece of iron, but the website says it's specially designed to be cooked with. So if you're boiling water, or cooking sauce or soup or whatever, you drop the iron fish in and let it sit in your cooking pot and a bit of iron leaches out of the fish and into your food/water, so you get a bit of extra iron with each thing you cook with the fish. I asked my mother-in-law if she'd get me one for xmas, so hopefully I get to try it out. It's supposedly been used in a lot of 3rd world countries where iron deficiency is a big problem, and apparently it does help. The website said you can even just boil water with the iron fish in it, then let the water cool and drink it throughout the day. So maybe I can add iron to my food and water little by little. At this point I'm getting slightly desperate to stop the bleeding and keep my iron up, can you guys tell? :p First the squatty potty and now the iron fish. If my GI can't help me with this issue then I'm determined to grasp at straws in an attempt to help myself! ;)
 
Thanks, Cat-a-Tonic. I appreciate the sympathy.

From what I've read the procedures for barium enema vary a LOT. But the website for the GI department I go to says to fast for eight hours beforehand, which I didn't do because I didn't know I was supposed to. They also changed the procedure I had. I didn't have a lot to eat that morning, just a bowl of cereal, but when the assistant technician felt my lower abdomen was she asked if I had a big meal. Nope--just chronically constipated. So I don't know if that could have affected the test.

My colonoscopy is next Tuesday, so hopefully that will provide some answers. I'm doing an extended prep, which means I get to drink double the prep and be on a clear liquid diet for two days. But if it can help clarify things, it will be worth it.

I've been reading around and am thinking that maybe my symptoms are actually endometreosis, since that can cause gastro problems. Unfortunately, there's no way to diagnose that definitively without surgery.

Ah, chronic GI problems are just so much fun. ;)
 
CatLady, yes, there was a girl who used to be active on the forum who eventually got diagnosed with endometriosis, so it could be that. And you're right, it can only be diagnosed via surgery, but they can do it via laprascopy which isn't super invasive and I think the recovery time is pretty quick. If you suspect endos and rule out other potential suspects, I think it might be worth at least looking into.

Oh yuck, as if colonoscopy prep isn't bad already - a double dose! :( You poor thing. The two days of liquid diet also do not sound like a fun time. My advice - don't watch any TV that has commercials. Stick to things like Netflix. During one of my preps, I was watching regular network TV, and I swear every commercial had amazing-looking food that I couldn't eat. (Seriously, Red Lobster commercials are evil - particularly since the food in the actual restaurants looks nothing like the deliciousness on the commercials!) Also, I found this to be helpful - last time I did prep, I treated it like a spa day. Seriously, I bet a lot of celebrities do "cleanses" that rival any prep formulation, so I already had that going for me. :p I made my bathroom as spa-like and relaxing as possible. I had fancy (okay, dollar store) candles burning and a nice relaxing playlist on an ipod on a dock playing on repeat in the bathroom. I took a bath with my fancy (also dollar store) bubble bath, and did a mud masque facial (I think that cost a whole $3, ha ha). In between bathroom trips I painted my toenails and played with makeup (I don't normally wear makeup). It actually worked out pretty well, it was definitely the least awful of the prep experiences I've had. Pampering myself was a nice distraction.

In all seriousness, good luck! So you do prep on Monday but you start the liquid diet on Sunday? I'll be thinking of you and hoping it's not too miserable! Update us after the scope when you're able to.
 
Welcome April! I'm also sorry for the reason you're here, but glad you found us. I'm interested to hear that you have type 1 diabetes - have they tested you for other autoimmune things, specifically thyroid related for the heart rate, like graves or hashimoto's thyroiditis? I have an aunt with type 1, and I have been diagnosed with hashimoto's thyroiditis which is causing my thyroid to go up and down - when it's up, my heart races like mad, and then it crashes and I gain weight and can't tolerate cold, etc (I just got tested, it's back down :( ). BUT, my glucose has also been weirdly LOW (my A1C was 4.something) so they are watching that, too, just because, I guess, autoimmune diseases can come in clusters and having one can put you at risk for others. So they are thinking my low A1C can be similar to my funky thyroid - that maybe my pancreas is spitting out too much insulin because it's being attacked, and we'll just have to watch it. -- which does bring me back round to Crohn's/IBD because that is ALSO autoimmune, and if the "cluster" thing is accurate at all, it'd be more likely (something I plan to bring up with GI when I see him next).

Anyway! All of that to say, yes, I recently had a LOT of heart palpitations, with my heart rate going over 120+ at rest, had a heart monitor, ECGs, etc...and all they found out was I sometimes have a "long QT" (scary, don't google it, or if you do, know that I'm ok!) and that otherwise I just have a fast heart rate and it is likely due to my thyroid.

Of course right now, I just found out that I'm hypOthyroid, and my heartrate has still been quick (was in the 90s today when they checked it at my counselor's office) so I don't know what that's all about. I used to have a nice, steady, 60-65 heart rate at rest, last year, or maybe even more recently. *shrug*

I see my cardiologist in another month+ to follow up, in any case. And my endocrinologist should call tomorrow about the thyroid (my TSH went from 1.06 to 5.70 in just 3 weeks!).

Oh! And re: tummy issues - I'm still having loose stools, but I'm happy to report that I'm NOT having watery D since getting off the Xifaxan! I know that may seem like a minor victory, but it's still improvement. Plus, the bleeding has nearly stopped (an occasional spot the tissue is all now) and it feels like it did when the fissure was healing last time, so that's a very good thing, too.
 
Ok - I feel a dunce. I just realized, that with my thyroid being so low...I should be constipated, not having loose stools at all. Now I'm just bummed. I'm having mushy loose stools more than 3 times a day already, what's going to happen when my thyroid is "normal"? :(
 
Wildmtn, hopefully whatever your guts are doing isn't solely based on what your thyroid is doing. It is good to hear that the watery consistency has gone away! I would definitely celebrate that as a victory. It sounds like you had some small but definite success with the Xifaxan! Hopefully things will continue to improve, and I also hope that your thyroid gets back on track too. I also don't do well with the cold, and we both live in cold places, so I feel for you! Stay warm! Are you having a warmer than average winter so far? Here in Wisconsin, we've only had one snowstorm and it already all melted - lately it's been temps in the 40s and even 50s (!!!) and just some rain, no further snow. So far not too bad, but I'm sure the bitterly cold weather is coming because it always does. I'm ready, though. I have two new electric blankets (one for the bed and one for the couch) and I have a new winter coat too. Anyway, I'm rambling again. Stay warm and I hope the thyroid improves soon!

As for me, I'm doing better today. I'm not quite trusting it yet, but I didn't pass any blood at all yesterday! :D The steroid suppositories must have finally kicked in, my appetite is all of a sudden insatiable and my hemmie seems to be healing. My weight is up by a couple lbs already though so I have to be careful. I've been trying to lose weight recently, and I even did lose like 2 lbs the other week, but I gained it right back on now that the steroids are making me balloon up (I gain about 1 lb per week on the steroid suppositories so this is normal for me). I've been stuffing my face with food! But, since I'm doing okay, I think I'm going to go to the gym today. I won't push myself too hard or anything, but it's been a few days since I've worked out and I want to get back to it, plus anything I can do to burn a few calories is a bonus, so today feels like a good day for a workout. I'm going to stay on the steroid suppositories for another day or two just to be safe - don't want to start bleeding all over again.
 
Cat, we've had warm weather too! Two little snows, but ours often melt quickly. But the past few days have been in the 60s F!! It's crazy. But, it's coming to an end it seems, the forecast shows snow by Saturday, and highs in the 30s by next week. I have a heated blanket for my bed too (it's neat, I can turn just my half on, so dh doesn't overheat) and soft blankets all over the house for couches and even in the office lol! Plus, I love to knit fingerless mitts, so I have several pairs of those stashed all over the house to keep my hands warm when I type or knit, because my hands get sooo cold.

I am going to try to stay positive that the Xifaxan worked. I'll just have to wait and see what happens, in any case.

I'm so happy to hear you are doing better and I hope you continue to improve!
 
Wildmtn, yeah, that's the kind of electric blanket I have on my bed as well! My hubby only turns his side on before bedtime, just to get the bed warm. Once he gets into bed, he turns his side off. Meanwhile I have my side set on medium the whole night! I cannot sleep if I'm too cold. I have fleece pajamas and I usually wear 2 pairs of socks to bed, and yes that's in addition to using the electric blanket! :p

I don't knit but I do crochet - I haven't tried making fingerless mitts but that might have to be added to my project board. Are your hands always cold due to the thyroid issues? Or have you been checked for Raynaud's? I'm not sure if I have Raynaud's or not - sometimes my fingers turn slightly blue, but not as bad as the pictures that I've seen online when I google Raynaud's. My hands and feet are ALWAYS cold, though, so maybe I do have it. If you aren't familiar with Raynaud's, here's a link for you (it's yet another fun autoimmune illness).
http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/symptoms/con-20022916
 
Cat - I had what appeared to be Raynauds in my nipples when I was breastfeeding my kiddos - it was horribly uncomfortable! My hands don't change color that dramatically, but they do get super cold and tingly like that, though, so it may be something to look into.
 
Alrighty then - spoke to the doctor. Apparently he won't be my actual doctor in the long run but he was an alright guy.

He said that he thought it was unlikely that it's a GI bleed because it's been a pretty slow drop. Apparently I was at 103 earlier in the fall and to go from there to 95 in a few months is not that drastic, and could have to do with the Gaviscon and periods and my body maybe not absorbing iron as it should. No reason to panic over the weekend, basically is what he told me, as long as I'm taking iron pills.

Will get to see my actual future doctor next week, and by then my charts will have transferred as well so here's hoping it'll be productive.

My hands are cold as ****, I'm tired all the time and can't walk up a couple steps without panting like I've run half a marathon soooooo yeah. If I don't see some improvement in a couple weeks I'm going to demand... infusions or shots or a transfusion or SOMETHING because I can't freaking feel like this.
 
Izzie, it's good that you've gotten some answers with regards to the iron deficiency. Good luck with the new doctor next week, keep us posted! I hope he (or she?) is very good and can get you feeling better, quickly.

As for me - nope, not going to the gym after all. I seem to be coming down with a cold! I think this will be my 4th one since the beginning of autumn. At least it's not more bleeding. I'm quite congested and I've got that "I'm coming down with something" feeling in my head. So some rest and soup is on order for me and the gym will have to continue to wait a bit longer. Bleh, but honestly I'm just happy that it's something other than bleeding that's keeping me out of the gym. :p Is that weird of me? I'm at the point where I almost don't care what my body throws at me as long as I retain my blood and iron, ha ha.
 
I got my colorectal surgeon appointment set up - it's over 2 months away, Feb 25th. The surgeon I got assigned to, though, I googled her and she's got crazy eyes! :p Seriously, she looks slightly terrifying. Her credentials sound good but her photo makes her look insane. Great, ha ha. Hopefully she's a good doctor, I guess that's more important than having crazy eyes. Seriously though her photo terrifies me. :p
 
Newly undiagnosed

Hi, I'm new to this site & undiagnosed. From reading your stories, most of you have been undiagnosed for a long time. I've been undiagnosed since August 2015. I'm 61, retired, female. Have suffered from severe constipation my entire life (marble poop every 10-14 days). This past August I woke up one morning feeling great, went to get my oil changed & started experiencing cramps that told me I was going to have diarrhea. I did, but the cramps didn't go away. 2 hours later, I was in bed in the fetal position & remained there for 4 days. Only got up to have more diarrhea & pass blood. My diarrhea continued for several months. I lost 17 lbs in one month. I've had 2 incomplete colonoscopies, next one will be in about 1 month. Also had CT scan & many blood tests. They are all coming back normal. I was too swollen & irritated for them to complete either colonoscopy. They won't diagnose me until they complete one. I've been on 14 day antibiotic program with 2 different antibiotics, am now on 30 days of a steroid, Lialda & Tramadol.
I am now back to marble poop. I see a different GI doc every time I have an appointment which is very frustrating.
I was supposed to have a total hip replacement Nov 23, but they won't do that until they figure out my gut and I'm in terrible pain with my hip. That is my story ~ so far. Jill
 
Last edited:
Hey guys.

So... good and bad news, I guess. Yesterday I was hit by a car at a crosswalk. They didn't see me, didn't even try to break, hit me straight on at 50 km/h. I thought for sure I was taking my last breaths there on the ground.

But I was lucky as hell, walked away with torn tendons in my knee, a bump on the head and scrapes/bruising. Might need surgery and/or physical therapy to walk right again, and I'm in terrible pain all over, but I'm just happy to be alive right now to be honest...
 
Jill - Welcome, although I'm sorry about what brings you here. I guess any biopsies taken during the partial colonoscopies came back ok? I hope they figure things out soon - I can only imagine how much pain you're in with your hip, my stepmom recently had her's replaced and I know how difficult things were for her before.
 
So just to go back to the bleeding...I keep getting it and whereas before I thought it was a hemmie I can see bleeding cracks now so I guess fissure. Is it normal for them to reoccur so often? And also I know reoccurring fissure can be due to crohns...but why? Is it to do with the amount someone goes to the loo, inflammation? What? They're painless more or less
 
Izzie, I'm sorry about what happened but am glad to hear that you're all right.

I'm doing two days of the liquid diet right now and have a question about it. Popsicles are on the list of approved foods, but do they have to be completely transparent to be okay? After last time I am not taking any chances, but it's been hard for me to find popsicles that are completely transparent. I have some mango popsicles that look appealing, but I'm not sure if they're okay.
 
Hey CatLady

Popsicles are ok, as long as there is no red, blue or purple dyes. They don't have to be see through, but can't have chunks of fruit or seed in them :) Mango ones should be fine
 
Hi JillMcR, welcome to the forum. Have you noticed any correlation between your hip pain and your digestive issues? I ask because arthritis/joint pain is a common symptom of IBD. I have arthritis in both hips myself so I feel for you, I hope you can get that surgery soon. Keep us posted on how your colonoscopy goes!

Izzie, holy cow!! I'm glad to hear that you're mostly okay, but how scary! Take care of yourself and heal up as best as you can. Are you in the hospital or are you home? And did they catch the person who hit you?

CatLady, there should be a list of non-okay colors of sports drinks, jello, popsicles, etc in your scope instructions. I think for mine they usually say no red, purple, nor blue. But orange, yellow, and green are okay for me. So I would think the mango popsicle is okay, but check your instructions or call the hospital to be sure. Good luck! Keep us posted on how the scope goes!

Megan, I've had recurrent fissures in the past as well. I can recall having them back in college and even high school (and this IBD or whatever it is, it didn't fully manifest until just before I turned 30). So, it seems to me that it's not solely an IBD thing. I tend to get fissures when I'm constipated - passing out a hard chunk of stool can sometimes cause a fissure for me. I tend to have diarrhea rather than constipation, so I haven't had a lot of fissures lately. That's my experience, although I know that isn't particularly helpful and isn't answering most of your questions. Hopefully someone else will know more than I do.

How's everybody doing today? I'm okay. Didn't sleep well last night - I stupidly had some nachos for dinner that did not sit well at all, so I was up a couple times in the night to use the bathroom. No bleeding though, I think the squatty potty is actually working as far as hemmies go. But I'm pretty exhausted though from getting up in the night and not sleeping well. I think I'm mostly over my cold though, haven't had a coughing fit in a couple days and I even managed to walk the dog on Saturday without making myself worse. So, baby steps towards improvement, I think. I just need to get through the holidays - I'm super stressed lately. Money has been tight and it's been a stretch to buy presents for everyone. Plus work has been stressful - I'm covering some of the tasks of my co-worker who went out on leave for heart surgery, and now another co-worker is spontaneously out until January so I have to cover some of her tasks as well. Ugh, fun. So between work and the holidays, it's been a stressful time. I honestly just want it to be January already!
 
The person who hit me stopped right after they hit me, and spoke to the police. I'm not sure if they were on something or just shocked, but they didn't try to help me or anything, they just stood a few feet away and stared while a pedestrian stopped to help me and called an ambulance.

I'm home now, and doing alright. In a lot of pain all over, but I feel like it's getting better. Probably didn't help my anemia though, and the whole process in the ER was scary. I had to be on a back board, and they had to cut my clothes off and I had to have a catheter put in and yeah... it wasn't the most fun I've had. But I was super lucky, just have to take it easy for a while now.
 
Cat-a-Tonic said:
How are you doing today, Izzie? Any better? I hope you're resting and healing and doing okay.
Click to expand...

It's actually going pretty well. Despite my body's recent rebellions I seem to be a decent healer :biggrin:

It's really downright impossible that I'm not injured worse than I am. Have some back pain and mobility issues but it's getting a liiiiiittle better every day. A bit concerned about this sciatica-like pain I get, I feel like that might be long term. But overall I can't complain.
 
I'm so glad to hear that you're still improving and healing! It is amazing how resilient the human body can be. I hope your pain isn't long-term and that you can heal fully. What's next for you, are you seeing your new doctor? I imagine the anemia still needs to be addressed as does your recovery from the accident?

So I just had an interesting conversation with my boss. She's starting to wonder if she might have IBD! She told me that she's been having some IBD-like symptoms, for example she recently had a salad and then was doubled over in pain afterwards. I described how salads often go for me, feeling the undigested chunks scraping their way through my guts, and she said that's exactly what she experienced as well. Soo, that would be interesting if she has IBD! She's always been a really understanding boss anyway, she has other health problems (mainly heart issues and some vertigo) so she understands chronic illness and understands why sometimes I call in sick kind of a lot. Now, though, with this salad thing, she's getting a whole new level of understanding of my specific issues, and I think this can only be a good thing (for me, obviously not for her!). I do feel bad for her, though. I know she's really stressed right now and I'm sure that's not helping her digestive symptoms. And if she does have IBD, that's obviously horrible for her. But, I feel like I can give her some good support and advice if she does have IBD, so I'm trying to be the silver lining for her. :)
 
Have appointments with everyone after New Years'. Right now I'm just waiting for the iron pills and my new diet to do its trick, and need to heal a bit more before I can start physical therapy and all.
 
Hi all, I had posted another thread a while back, but I'm definitely undiagnosed. My blood work just came back normal except for a high platelet count, so my doc wants to see me again in 3 months. If I'm still elevated and still having issues, off to the GI I go, as platelet count can reflect an underlying imflammatory disorder. Plus whatever I have is definitely genetic. 3 out of my 4 siblings are currently having issues and we've all lost 10+ pounds this fall. I finally did find a good doc though. She also gave me a script for IBS in the meantime to see if I notice any improvement. Plus orders to keep a food diary.

I'm just happy to find a doc who treats IBS as a diagnosis of exclusion and takes the pain/symptoms seriously after seeing 5 others who just told me to stop being so stressed (which I'm not particularly?). If it's IBS, I don't care, just help me control it.
 
Hi Kati, I'm glad to hear you've finally found a good doctor. What IBS med did she prescribe you? I've tried a few different IBS meds myself, but they mostly did nothing (one actually made me feel a lot worse!). I hope you and your siblings can all get this figured out soon!

Izzie, I'm presuming that you'll just be resting and healing until your appointments then? I hope you have a peaceful, quiet time until then and can do some healing and still enjoy the holidays. I hope the physical therapy goes well, too. I went through PT a few years back for my hip arthritis, and my physical therapist was wonderful and much more helpful than I had been anticipating. I hope you get a good physical therapist as well.
 
Cat-a-Tonic said:
Hi Kati, I'm glad to hear you've finally found a good doctor. What IBS med did she prescribe you? I've tried a few different IBS meds myself, but they mostly did nothing (one actually made me feel a lot worse!). I hope you and your siblings can all get this figured out soon!

Izzie, I'm presuming that you'll just be resting and healing until your appointments then? I hope you have a peaceful, quiet time until then and can do some healing and still enjoy the holidays. I hope the physical therapy goes well, too. I went through PT a few years back for my hip arthritis, and my physical therapist was wonderful and much more helpful than I had been anticipating. I hope you get a good physical therapist as well.
Click to expand...

That's the plan, yes. Though the iron pills are upsetting my stomach and making my reflux worse so if that gets unbearable I'll have to have a talk with my GP about shots or infusions or some other option. But I'm living with my parents for a while since I can't really walk, so as usual my hospital visits are a logistic nightmare :p
 
You might want to call the GP and let them know now that the iron pills are upsetting your stomach - that way, if you decide to go the infusion route, you could at least get the infusions scheduled (I'm not sure how long of a wait it is there for infusions - here it was only a week wait, not bad at all). I would wager a guess that with the holidays coming up so soon, they might not be scheduling infusions until after New Year's anyway. So might be best to get it scheduled now so that you could have infusions along with the rest of your appointments after the holidays. Just a thought.

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

Colonoscopy is finished, thankfully. The GI didn't really find many abnormalities aside from a very small polyp that was removed. They took a lot of biopsies, though, so maybe that will reveal something. But at this point I doubt it will.

I won't be able to see my current doctor again, most likely, because she's on vacation for a few weeks and my insurance changes in the new year. So I'll go to a new PCP and ask what else might be causing my D and C, possibly looking into testing for celiac disease.

I'm disappointed that there is still no known cause of my problems, but also relieved that nothing major was found. I'm somewhat hopeful that maybe things will get better now that I'm under less stress. We'll see. I think I probably don't have IBD, but I greatly appreciate the support I've received from this forum.
 
Hi, all. I have been going to a GI for years now and just recently got some new tests done and am confused by the results. Hoping you can help!


I had the Prometheus test done and it indicates UC. It also says My AutoAntibody ELISA is 34.2 EU/ml and the normal range is <19.8 EU/ml. What does this mean/indicate? My IFA Perinuclear Pattern was NOT DETECTED and the DNAse Sensitivity was NOT DETECTED.


My STAT 3, NKX2-3, ECM1, and ATG16L1 all show variant DETECTED. THe reference genotype says Variant not detected for three of them but Variant DETECTED for STAT 3. MY ICAM 1 came back at 0.43 ug/ml, VCAM-1 at 0.47 ug/ml.My hematocrit and hemoglobin were both HIGH and my C-reactive rote in was <0.5 MG/DL.


My colonoscopy indicated I had some abnormalities such as rare crypt abscesses, cryptitis, scalloped folds/edges.

Im confused and hoping someone can help!
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
2K
musicalwiz
M
Papantoine
Neglect?
Replies
3
Views
923
jadegreen
J
R
Nearly 4.5 years in with Crohn's.
Replies
3
Views
2K
ronroush7
ronroush7
C
Your thoughts, please. 10 yr old.
Replies
37
Views
4K
mohanskin
M
N
Advice on diagnosis
Replies
1
Views
1K
Scipio
Scipio

Latest posts

Back
Top