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lizbeth said:
Do you ever feel like life is like a juggling act trying to balance everything?
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Short answer - YES!!! ;)

Longer answer, absolutely. Between work, home, hubby, pets, bills, etc - I have become an expert juggler! At least with Entocort back in my life, I'm feeling better and can do a little more so that's a big relief. There's still not enough hours in the day for everything I want to/need to do, though.

Lizbeth, I hope your dad is okay and that the surgery goes fine. Keeping you in my thoughts and hoping for a good outcome. Big hugs! Hope you feel better too - the unidentified "strips" in your stool, I have no idea what that could be, but I hope you get it figured out and that it's nothing major.
 
Cat-a tonic, since Entocort works so well for you, it does seem like you might have microscopic colitis. I am on that forum and it's the drug that works for most of us. There are some people who take 3mg. every 2 or 3 days as a maintenance dose.

It's great that you are able to work out! I'm a personal trainer and remember what it felt like when I first got sick and had no energy. Entocort ( and major diet changes) got me back to my healthy weight and back to working out. It worked very quickly for me too. . Glad to say that I am off the drug now. hope you continue to feel good.
 
Cat, osteopenia is loss of bone density that is a pre-cursor to osteoporosis. When I had my bone density scan last spring, I was right on the border of osteoporosis, which is not good news for a woman in her 30s! Unfortunately, I cannot exercise much because of the ME/CFS or it causes a big relapse. I saw a physical therapist for a number of sessions, and she gave me some gentle exercises to do at home daily. However, she specifically told me not to try to lift weights. It's kind of a catch 22 because part of the reason for the osteoporosis is also that my diet is poor due to my GI problems and inability to tolerate so many foods and supplements.

From what I understand, osteoporosis is not that reversible. My doctors and I aren't so much concerned for my bones right now, but what my bones are going to look like in a decade. That's what makes me cautious about a steroid, even one that is less systemic like Entocort.

At some point in the next couple of months, I need to go back to the rheum. and see when I need to have another bone density scan. Maybe I can ask her what she thinks about the idea of Entocort.
 
Lizbeth, I'm so sorry to hear that your symptoms have been difficult AND you're dealing with a hard situation with your dad too. I hope that the surgery goes well.
 
Chickadee, sheesh, it sounds like your various conditions are all competing to make the other conditions worse. I totallly blanked on your CFS, of course you wouldn't be able to do something like lift weights with chronic fatigue. :( I'm glad you're able to do some gentle exercise, that's something anyway. If you do have an opportunity to try Entocort, it may heal things in your gut enough to allow you to eat a few more foods and hopefully somewhat improve your nutrition. That was my experience - before Entocort, I wasn't able to tolerate anything even mildly spicy. After Entocort, I was healed enough that I could once again tolerate mildly spicy things like taco seasoning and mild salsa. So I could eat more variety than what I had been eating.

Leah, that's cool that you're a personal trainer. Have you had a hard time with certain exercises? For me, I have a hard time jogging because I have arthritis in my right hip, and jogging really aggravates that and causes pain. I also sometimes have a hard time doing abdominal exercises with my iffy guts. I'm currently at a healthy weight so I'm basically in a maintenance phase, I want to maintain my weight and my muscle mass and just basically try to make my body as healthy as possible through exercise. I lift weights every other day, and on the non-weight days I try to do something else active like yoga, cardio (usually stationary bike), or walk my dog. But when I'm feeling ill, I take more rest days than I'd like. When I was in remission, I was working out 5-6 days a week. Lately it's been more like 3-4 days a week. I really want to get back to feeling consistently well so that I can work out more!

How's everyone else today? Speaking of feeling ill, I'm having a bad day. I had plenty of bad days when I was on Entocort a few years ago, so this wasn't unexpected. I passed blood yesterday evening and haven't felt great since. I feel exhausted and my guts are fairly unsettled. I'm just taking it easy today and hope to be feeling better again tomorrow.
 
Hey there everyone,
So I'll be taking the hubs to his surgeon this afternoon to find out if he did any damage. Here's hoping he didn't. He's feeling some pain but not too severe, so we're both hoping he just bruised things a bit. His tailbone's a beautiful purple color so he obviously took most of the impact there.
My belly is super unhappy today and I'm just not sure why. I'm guessing maybe because my back has been so bad the last couple of days I took quite a bit of vicodin and that tends to make me really constipated, and that moving through where it's already been hurting might be aggravating things. Plus I had aged cheese a few times and I know cheese is kind of hard on me so the combo might have been too much. Starting to feel like I just shouldn't eat. Grr. And when I was at the store yesterday this little kid ran right into me with a cart from behind, hard, which wasn't exactly top-notch for my lower back which has already been pretty bad from the weekend...... he said Oh! Sorry! and just ran around me. I couldn't even breathe. Which was probably good for him because I kind of felt like....... probably shouldn't even say it!

So anyway. I hope by this weekend we are all feeling better and things are looking up.

Cat, yeah, they do have great sushi, so I'll probably get a roll, and also really good hibachi shrimp and scallops :D!
 
Thanks for the support everyone. We had a family meeting and I think things are going in the right direction. I'm out of my house, staying with friends and looking for work. I still have to check on my mother and uncle in the mornings. They're getting more home care during the week. We have another meeting in a week to figure out the long term situation.

A nonprofit center I'm a member at is helping me with all this. My lawyer is on the board of directors there. They are helping me get free medical care and with some job counseling. It's giving me a real sense of hope.
 
Mccindy, you know how stress can wreak havoc on our systems. It sounds like you have a good dose going on right now. Hope everything settles down soon for you and you start to feel better.
 
Gosh -- you all have so much going on in addition to your own health concerns. I can't imagine not feeling well and serving as a caregiver on top of that. Life feels like a juggling act half the time, and I'm the only thing I need to juggle!

Here's a new, weird thing: flank pain. Both sides. No idea what's up with it. It's dull and intermittent and only hurts for a minute or two on one side at a time. My kidney function is always at like rockstar-awesome levels, so I doubt it's that. Strange. Whatever it is, it's definitely a different pain than the abdominal stuff I have all the time.

I'm still puzzled about this mysterious dark red stuff in my stool. The fact that it was negative on 2 of 3 occult blood test strips (and only barely, barely positive on the third) makes me think it's not blood...but what the heck is it? It's not solid, so it's not bits of food, and I don't drink anything with a lot of food coloring. No alcohol, so it's not red wine or anything either. And I hate beets, so that's not it.

I don't know. I guess it isn't blood, but it still looks so much like it that it's hard not to freak, especially since it's now a regular thing -- I'm more likely to see the not-really-blood than not lately.

Back to D more or less regularly it seems, despite cutting out lactose. My stomach definitely does better without the lactose -- the D isn't nearly as painful or crampy -- but I'm bummed that I'm still having issues. An attack every 4 or 5 days. Better than I've been at my worst, but still a bummer.

I've thrown in the towel on my docs. At this point, if something's wrong, it's gonna have to get bad enough to land me in the hospital, I think. Until then, everything's going to get written off as health anxiety.
 
Hey,
Looking for any advice. I started the creon about 4 weeks ago. The second morning of taking it, I emptied my entire intestines in about 3 seconds. Never seen so much in my life. All formed but loads of mucus. Then I've pretty much gone back to normal. It's not got a yellow tint anymore or as much undigested food but there's no other change. I've actually found it getting looser and more floaty. My GP has told me to experiment for another month. If my pancreas is fine and it's my bowel that's damaged would creon help? I'm on 10,000, one a meal. I'm not sure if that's enough. I'm going to try 2 per meal.

Also, another question which has been bugging me since my scope. (It'll be 8 weeks this Friday since my scopes and I've still heard nothing. No biopsy results, no "8 week appointment". So I'm getting a bit fed up.) My upper endoscopy said "unremarkable". The colonoscopy said "normal mucosa" but didn't say 'unremarkable'. Is that significant or am I clutching at straws that he might have found something. I woke up at one point and saw a lot of thick green bile/mucus. I think it was at the ileocecal valve but I was massively sedated. The photos I've seen of colonoscopies all have runny yellowy bile. I can't find anything about thick green. I wondered if that could indicate a problem further up the bowel.... or it doesn't mean anything.

Worked out my hair loss is due to manganese. So I've managed to halt that. I've just started with fluorescent wee, which apparently is excess B2 or B12 so that's something I CAN absorb. And presumably if I get lost in the dark, I can just pee into a bottle and it shall light the way.

Feeling really zoned out again at moment. Hope this makes sense.
 
AnotherCatLady said:
Hey,
Looking for any advice. I started the creon about 4 weeks ago. The second morning of taking it, I emptied my entire intestines in about 3 seconds. Never seen so much in my life. All formed but loads of mucus. Then I've pretty much gone back to normal. It's not got a yellow tint anymore or as much undigested food but there's no other change. I've actually found it getting looser and more floaty. My GP has told me to experiment for another month. If my pancreas is fine and it's my bowel that's damaged would creon help? I'm on 10,000, one a meal. I'm not sure if that's enough. I'm going to try 2 per meal.

Also, another question which has been bugging me since my scope. (It'll be 8 weeks this Friday since my scopes and I've still heard nothing. No biopsy results, no "8 week appointment". So I'm getting a bit fed up.) My upper endoscopy said "unremarkable". The colonoscopy said "normal mucosa" but didn't say 'unremarkable'. Is that significant or am I clutching at straws that he might have found something. I woke up at one point and saw a lot of thick green bile/mucus. I think it was at the ileocecal valve but I was massively sedated. The photos I've seen of colonoscopies all have runny yellowy bile. I can't find anything about thick green. I wondered if that could indicate a problem further up the bowel.... or it doesn't mean anything.

Worked out my hair loss is due to manganese. So I've managed to halt that. I've just started with fluorescent wee, which apparently is excess B2 or B12 so that's something I CAN absorb. And presumably if I get lost in the dark, I can just pee into a bottle and it shall light the way.

Feeling really zoned out again at moment. Hope this makes sense.
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I take creon and I've never had anything like that. I take it cause I have sjogren's which can make your pancreas 'dry'.
 
Moogle - It does sound a bit like things might be looking up for you? Cautiously optimistic.

My husband's doc says he didn't do any damage (yay!) and things look good. So that's great news. He'll still be off work for a couple of weeks but he's feeling relieved. Worker's comp called him yesterday and told him they are picking up the bill for the whole thing, previously they had denied it and we thought we were going to have to pay for it. Two good newses in one day!
Here's a bit TMI (warning!) for you all. Last night I woke up (just to pee) and my sheets were totally soaked from sweat (that's not the TMI). Sucks to get back into bed when that gets cold while you're peeing, you know? This morning I woke up and to go so bad I barely made it and went so much, I honestly cannot figure out where so much BM could fit inside me, I'm really not a very big person, you guys! My poor toilet! The worst of the pain I've been feeling is a bit better so maybe that's why it was as bad as it was. This morning is more nausea than anything else.
I've had night sweats like that every night for this whole week, and at least one-two sores in my mouth this week also. Plus all that pain, despite my careful eating. But huh, it's just IBS. But really, I'm happy today, with all the good news from yesterday, things really are looking up, I'm going to enjoy it.
 
Cindy, I've had bowel movements like that too, and I'm also not a very big person. You go and you go and you go. And you think, "Holy cow, I'm going more than I did the last time I did prep!" And you finally stop going and you wipe and you wash your hands and you go to leave the bathroom... and as your hand is on the door handle, you get that urge to go again. That's what my bad flares are often like. I had no idea how much fecal matter the human body could hold up until I had episodes like that! It's ridiculous! There was a great article written by Dave Barry about colonoscopy prep, and there was a line to the effect of (I'm paraphrasing), when you prep you poo out everything you've ever eaten, and then your colon travels in time to the future and you poo out things you have eaten in the future. :p Sometimes that's what it feels like - like there's no way I've eaten this amount, not even within the last week! How is this much volume of stuff coming out of me??

I will say, I've found this to be quite helpful. If I'm having a bad tummy day, I need to eat VERY lightly for dinner. I only had an English muffin for dinner last night, that was it. That way I didn't have a ton of bulky food sitting in my colon while I was sleeping, and my morning wasn't too bad either because I didn't have a lot to get rid of from the night before. I slept better and had a good morning. I know, it's not great for my weight which I need to maintain, but I think the pros outweigh the cons.

Moogle, the job counseling and health care stuff sounds very good! I hope your next meeting next week goes okay. Good luck with the job hunt!

Bureaucratic, you say your kidney levels are okay - but with that intermittent flank pain, it sounds like kidney stones are a possibility to me (I'm not even sure if kidney stones would mess with kidney levels or not). My hubby had kidney stones a few years ago and his were like that, he'd be okay one minute and the next he'd have pain. The pain could be anywhere from meh to severe, and it moved around somewhat - it wasn't always in the area of his kidneys, sometimes it was like referred pain. It initially presented as LRQ abdominal pain for him, and he also got nausea & vomiting with it, so for a bit until he got diagnosed with kidney stones, I was afraid he might have IBD too! At any rate, if it continues or gets worse or anything, I would strongly encourage you to get it checked out. If the stones are small enough, you might be able to flush them out and pass them without surgical intervention. But if they get too big, like one of my hubby's stones did, it can get impacted which is supremely painful and needs to be surgically blasted out (they stick a tiny scope up your pee hole and zap the stone with a laser, you then still have to pass the broken up bits of stone which isn't fun either). The good news is, most stones can be pretty easily diagnosed with x-ray and/or CT scan, so get to your GP or the ER if it continues. And drink lots of fluids - just good advice in general, but if it's a stone you can try to flush it out yourself. I hope it's not stones, but please do get checked for stones if the pain continues.

AnotherCatLady, can you call your doctor's office and see why you haven't heard anything back yet about the appointment? I've heard the NHS sometimes has long waits, but 8 weeks without even a call sounds pretty excessive to me. I would give them a call just to make sure you're still on the waiting list and that they haven't forgotten you, etc. As for the green mucus, I have no idea but it'll be interesting to hear what your doc has to say about it. I saw the pics from my last colonoscopy - I was out cold but they showed me pics afterwards. My colon looks absolutely beautiful, pristine, not a trace of redness, no ulcers, no inflammation, no scarring, nothing. It could be a model, it's that beautiful. Which is frustrating of course because why am I having symptoms if my colon looks so perfect? Where on earth is my illness hiding? So anyway, yeah, green mucus is not normal and I hope your doc has some answers for you on that.
 
Hello!

I'm so glad I have found this group as I feel like I've been going out of my mind with all this!
I started getting symptoms 2 years ago when I was 15. Constant never ending trips to the bathroom, the pains you get all through your stomach that can't be controlled no matter what pain killers you take, bleeding, sickness ect ect... I have been through multiple tests, so far to no avail. Colonoscopy's, endoscopy's, CT scans, MRI scans, blood tests... I feel like I am going out of my mind. I don't get a day off from my symptoms, I just want to feel like normal for one day! Except i guess this is normal now for me.
I have a Video Capsule Endoscopy booked for the 25th of this month and i feel like it couldn't come sooner! I had one booked for last week but after spending all night throwing up the laxative they gave me to take, i couldn't manage an hour and a half car ride in pain with extreme diarrhoea so have had to reschedule. I hope this comes back with a result as i am being left in the dark with nothing to halt or steady the symptoms.

I have had such a tough time since the symptoms began, lost all my friends, my family sit round moaning that I'm only "feeling sorry for myself" and the boyfriend had to be talked round after constant arguments because i couldn't leave my house, being told i was "just lazy" everyday killed me inside!

In the last 3 weeks I have massively deteriorated, I have gotten to the point where I am passing out at least twice a day, throwing up daily and not being able to leave my bathroom for fear of the worst. The doctors have done nothing but a blood test after going to the surgery 9 times in 2 weeks. I have massive anxiety after the last 2 years of being forced to go to school and spend the whole day in their toilets with other girls taking the mick out of me because I had to do more than a wee at school! I have only just in the 2 days been prescribed anti anxiety tablets, which haven't had much affect yet, but I'm hoping will soon.

I'm missing a lot of time at work, I'm scared of losing my job now... but I can't physically get the bus there, I wouldn't make it without a toilet! Not only that but when I'm there I can't spend all day in the loo! It's getting to the point where I can't live my life at the moment, and that's horrible after 2 years. I can't move from the pain most of the time. I'm constantly drained and shattered, I have no energy left and I'm struggling to hold any food down now. I'm living off bread sticks right now and even those are hard to keep down.

I've got to the point where I don't know what to do any more and any help would be amazing! Even things that have worked for yourselves and relieve the symptoms slightly! As being prescribed anything until I have been diagnosed is a struggle!

Thanks, Rose :)
 
Hi Rose, welcome to the forum and the club - I'm glad you found us. You poor thing, it sounds like you have no support from family or friends? :( That's horrible, but unfortunately not all that uncommon. It sucks, but the forum is here for you - we're always around to listen to you vent or to help you out with whatever you need. You are NOT "just lazy" or "feeling sorry for yourself" - you're legitimately physically ill. The next time someone tells you that you're lazy or whatever, if it were me I'd be tempted to ask them if laziness causes bleeding out the butt! :p Seriously, though, this is a safe place and we know you're not making it up, it's not laziness nor stress nor all in your head. We're all in the same boat and we've all heard those about ourselves things too - and they're just not true.

As for your question about what to do to get some symptom relief - heating pads or hot water bottles can help relieve some of the tummy pain - hot baths work okay too. Over the counter pain meds aren't a good idea unfortunately, as most of them are NSAIDs (meaning they can actually worsen inflammation & bleeding in the digestive tract). So make sure to avoid things like aspirin, ibuprofen, etc as they may only make it worse. Paracetamol/acetaminophen is pretty much the one safe over-the-counter pain med that isn't an NSAID and won't make things worse, but it's not very effective for most people (as you probably already know). Also, if you take too much of it, you can damage your liver.

Can you talk to your GP about them possibly prescribing you some medications for symptom relief? Something like Zofran (generic name Ondansetron) works really well for nausea with a low risk of side effects. And Lomotil is a pretty effective anti-diarrhea medication. If you have a lot of abdominal cramping, you may also want to ask about Bentyl (generic name is Dicyclomine) - it's more of an IBS med (and I don't think you have IBS from the sound of it), but it works okay-ish for some of us. All of those are prescription drugs so you will have to ask your doctor, but given the amount of suffering you've been going through, hopefully you can convince your GP to prescribe something to help you at least get through until your capsule endoscopy.

What's the plan for your upcoming capsule endoscopy - are they making you do the same prep that you threw up previously? I know for some people, if they have to prep and then drive, they get a hotel room near the hospital the night before so they can prep there and then just go straight to the hospital without a long drive. Just a thought for you. Are you in the UK? If so, you may want to ask to try the Picolax prep, as you only have to drink 2 cups of prep itself and then a lot of clear fluids of your choice to stay hydrated. I did that prep in August (it's called Prepopik here in the US but it's the same thing) and it was very easy on me - it did make me nauseous for a bit, but I didn't vomit, and it was easy to drink just 2 small cups.

I hope that helps a bit and I hope I answered most of your questions. Best of luck on the 25th, please keep us posted on how it goes.
 
Thanks for the support, it's nice to speak with people who know exactly what your going through. GP has refused to prescribe anything until I get results from capsule endoscopy. I have been through such a battle with them over the past 2 years. It took a locum doctor who was covering sick leave to actually refer me to a specialist! But I can try again!

They gave me the Picolax last time and that's what didn't agree with me, nor does MoviPrep which i have also had the joy of throwing up! They have said to me that as long as I don't eat for 30 hours and don't take any medication, including pain killers for 48 hours before the procedure, they can then do it without. Although, 30 hours seems an awful long time to not eat for, only aloud one glass of lucosade before 6am on the day of the procedure so I don't pass out on them, which is likely to happen anyway at the moment! But I am aloud clear fluids up until 10pm the night before. I can't drive so I have to go from home as the hospital is a bit of a way out and closest hotel is 15-20 minute walk, and I don't think i'd manage that. I think i will have to plan out exactly where the toilets are on the way so i can get my sister to stop there while she's driving me! With any luck it'll go smoothly!

I will let you know how it goes and get onto those doctors!! Thanks again, Rose
 
Rose-- Welcome, though I'm sorry you're going through all of this. Cholestyramine has helped me reduce the constant diarrhea when nothing else worked. That might be something about which to ask your doctor for symptom relief while they try to find the cause.

Cat-- Yes, I've wondered if Entocort would help me eat more. I'll bring it up next time I see my rheum. One month after my doctor prescribed vancomycin for my Clostridium infection, the insurance co. FINALLY approved it, and I started it last night. Crossing my fingers that it will make a difference.......
 
Rose, are you able to see a different GP? If your current GP won't even give you medications for symptom relief (which won't affect test results one way or the other because they're not reducing the underlying inflammation or anything like that) - then it might be time for a second opinion from a different (better) GP. With you not driving and needing the bathroom so often, I realize that might be easier said than done, but hopefully there's some way that you can be seen by a more competent GP who will at the very least try to relieve your suffering somewhat! If you can't see a new GP easily, are you able to go to A&E or an urgent-care clinic? If you tell them about the bleeding, the passing out, etc, they may be able to prescribe you some symptom relief-type meds if your GP won't.

Chickadee, I'm glad you FINALLY got that medication! I hope it works wonders and is worth all the hassle and aggravation. And I hope you still pursue some type of complaint because your insurance company really sounded to me like they were jerking you around. Good luck with the vancomycin, I'll be interested to hear how it goes - keep us posted!
 
RosannaKate, do you have Immodium AD there? it's an OTC anti-diarrheal that works pretty well. ….just to get you through until you get a dx and perhaps some prescription drugs.
Good luck
 
RosannaKate - I agree with Cat above. Those are some good med choices to ask about from your doctor. But if you can't get anything for relief soon, try another doctor who can help you.

Thanks for the support everyone. Things are already looking positive for me. I'm sticking with taking 1/2 pack of Cholestyramine once a day. I missed it for two days while I was moving and dealing with the changes. My loose BM started back today and will probably get worse if I don't take it. I found that the Cholestyramine is my best compromise for now compared to Immodium and fiber. I'm going to slowly try to make diet changes and do a journal. I think being free from the stress at home will help me to take care of myself better.
 
leah H said:
RosannaKate, do you have Immodium AD there? it's an OTC anti-diarrheal that works pretty well. ….just to get you through until you get a dx and perhaps some prescription drugs.
Good luck
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Thanks leah H, i have tried over the counter Immodium and it doesn't have any affect, i still end up on the toilet so many times in the day and in the night. With any luck my test on the 25th will give an answer and I'll be able to get some medicines to just help me through and make it bearable.
 
Hey guys,
My poor son is AZ has norovirus. He's been throwing up and had D for six days. Hard on a momma to be so far away from her sick baby! He's on an antiemetic now, so he's able to keep some liquids down, but he definitely lost some weight with it. He said, now I know how you feel, mom.....
 
Moogle, I'm so glad to hear that things are going okay and that you're feeling positive. I know you've needed this change for awhile now, to move towards taking care of yourself and your own life. I'm so glad things are starting to fall into place! Please continue to keep us posted on how things are going.

Rose, you definiely do need a doctor who treats you with more respect and who takes your symptoms seriously. I'm pretty sure doctors have to take an oath to "do no harm" - sounds to me like by not even giving you meds for symptom relief, that GP of yours is doing some harm. Not good!

Cindy, oh yuck! I've been hearing that Norovirus has been going around, I've been trying my hardest to avoid it. At least one person at work had it a few weeks ago but fortunately I avoided catching it (knock on wood). I've been washing my hands a lot as I read that hand sanitizer does not kill the norovirus. A lot of people rely too much on hand sanitizer, but it doesn't kill key things like norovirus and also c diff, both of which would be devastating for one of us to get. So proper handwashing it is! Maybe convey that to your son too - norovirus is one of those weird things that you can re-infect yourself with, so he should wash his hands a lot and bleach surfaces that he touches, etc. If his wife hasn't caught it yet, she should also wash her hands frequently, avoid any food that your son prepares while he's contagious, etc. I'm sure you probably know all this already what with working in a hospital. But yuck! Norovirus is such a hideous thing, and it seems like a really bad strain has been making the rounds like crazy this winter. (Particularly on the cruise ships - I have never wanted to take a cruise, but now I really don't want to!) Hope your son feels better soon!

How's everyone doing today? I'm yucky. :p Woke up this morning with bad hip pain! I looked at the weather report and it only said 20% chance of precipitation - in other words, they didn't think it would snow. I was thinking, the way my hip was feeling, it was going to snow a lot. My hip always aches when a bad snowstorm is coming. Sure enough, it's pouring snow right now, it almost looks like a blizzard outside - Cat's hip 1, weather forecasters 0.
 
I had food poisoning a few years ago, which I think worsened my IBS stuff. I never been that sick before. I pray that I don't catch that virus again! Cindy, I hope your son gets well soon.
 
porter89xxx said:
Im so glad that you put this undiagnosed club up

Im also undiagnosed, im 20 years old, my problems started in late 2008, i was at work and callasped feeling all fluey, got told i had a chest infection and was signed off from work, forward 5 weeks later i was on holiday and started getting alot of pain diarrheah, sickness, got home and was told i had gastroenteritis if no better to go back, wne tback after the weekend and was told my appendics needed to come out and was sent to hospital where i was told it would be took out that night, it wasnt they were doing tests on my appendics and couldnt understand why it didnt look inflammed yet i was so doubled up in agony, anyway they took them out, did it help...... Nope. I got constipated and ended back up in hospital where they thought i had a blockage, did a small bowel study and come back with, we think you have crohns we found inflammation and ulcers in the small bowel, we will do a colonoscopy but you need to take these steriods and anti inflammatory tablets, foward 2 weeks better feeling much better i had the colonoscopy, suprise suprise the biopsys come back normal but there was still some inflammation, they then decided to do a pill cam, also normal, (was still on steriods). They then decided no its not crohns at all and was given the diagnoses of ibs, had a mri scan and an endoscopy which have come back normal and that is my story so far, bleeding since april this year and 1 hospital admission this year my weight has fell off of me now classed as underweight and generally getting worse, still fighting for a diagnoses.
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Have you looked at gluten free?
 
Hi whidbeyislandhash, welcome to the forum - would you mind introducing yourself and telling us a bit about your story? By the way, the post you responded to is a couple years old, so I don't think she'll respond as she hasn't been very active on the forum in quite some time.
 
Texted my son this morning and he did say he's feeling quite a bit better. he and his wife have been avoiding each other since he got sick and she's been disinfecting their whole apartment hoping to avoid and has so far, so it must be working! Apparently the norovirus is quite bad in places like AZ and CA.

Rose, I think you and I both need new docs. My hubs told me today that he thinks I definitely need to make an appoinment sooner rather than later down at Mayo and just get down there to see if someone will do something for me, since my GI in the Cities refuses to give me anything but an IBS diagnosis. I'm down another pound and the med I'm on for my head takes away my appetite, causes nausea and has a weight loss side effect, so if I can't find some way to eat more than the few foods I tolerate now I'm going to waste away. My cousin told me he's talking to a friend of his about edible cannabis that's supposed to both settle the stomach and stimulate the appetite (my mom called him). I know there's been some talk of MN being one of the states that's considering making medical marijuana legal, which would be great, as I've heard good things about it for IBD sufferers, but I don't know that it's worth my job to take the risk, so I want to research how edible affects people and shows up on blood tests before taking any chances.
My son has a friend in AZ (where medical marijuana is legal) who has moderate Crohn's, and since he started using it he's been able to tolerate quite a few foods he used to not be able to eat, I guess. Worth some research if it becomes legal here.
 
It infuriates me that all these docs have a "diagnosis" of IBS. That isn't even a disease! There are so many different types of colitis,that many doctors aren't even aware of some of them. Were biopsies done McCindy? How about a tryptaise stain to count your mast cell count?

If you are looking into marijuana, you want to look into a "tincture" that has a low THC level and a high CBC ( I think that is right) level. Eating regular edibles will definitely get you high, whereas the tincture won't. I know someone who takes it with a lot of success ( I'm in Ca.). It's not cheap though.
 
Leah, I agree on the IBS thing - particularly when people are having symptoms that are clearly not part of IBS, like night sweats, fevers, blood in stool, getting up in the middle of the night to go, weight loss, plus all the extra-intestinal stuff like joint pain. My GI tried to feed me the IBS line - he thinks I have IBD because I have had some of those "red flag symptoms" like weight loss etc, but he put me on Entocort 3 years ago and it got me into remission. When I fell out of remission, he suggested that maybe I was actually still in remission and that IBS was to blame for my relatively minor symptoms. I was like, uh, no. That's insulting. Yes, it's true that so far I've had only normal test results - so either I have something like Crohn's which is hiding really well, or maybe I have microscopic colitis that's been missed on biopsy, or like you said any number of things that aren't well known yet. But for a doctor to just dismiss symptoms as IBS when it's not clear what's going on, it's wrong and lazy and it's insulting too.

Cindy, glad to hear that your son is feeling better! Also good that his wife was able to avoid it. I hadn't heard that, about norovirus being bad in AZ & CA. I hope it doesn't spread more here in the midwest, I'm already a germophobe as it is! :p
 
Mccindy, i think we need a pact to get new doctors!!! They just don't listen because they don't know how it feels! They can train in medical schools for years but most will never have an IBD experience and see what it does to a person. It's painful and stressful to deal with! But they just don't seem to empathise!
 
Cat-a-tonic, it's too bad that they haven't gotten to bottom of it . I also think you both need new doctors! Since Entocort worked for you, I'm suspicious that it is Microscopic Colitis ( collagenous,lymphocytic,or mastocytic enterocolitis) that you have. It is the most undiagnosed IBD because the colonoscopy looks "normal". And Entocort is the one drug that seems to work best for it, but not for other IBDs. If CC is what you have, then it is connected to having other autoimmune things like thyroid issues, connective tissue diseases ( like RA) ,iritis, and pernicious anemia If you do have mastocytic, then your mast cells are degranulating and causing a histamine inflammatory response. Have you tried OTC antihistamines and eating a low histamine diet? Might be worth a try. Besides the diet, the antihistamines were the last piece to my "puzzle"
Just a thought :)
 
So i wanted to give a quick update of this mornings events - hopefully getting somewhere! I spoke to a new doctor this morning and they are rushing me down to the surgery to examine me as the new one i spoke to suspects colitis due to the mucus symptom that none of the others picked up on. With any luck they can help me whilst waiting for the capsule endoscopy as im feeling very swollen and sicky this mornimg, took quite a bad turn at about 1 in the morning where i spent an hour on the toilet with mucusy blood pouring from me. About to go down to surgery and hoping i can have an uneventful trip, knowing my body that wont happen, but i can hope!

Hope everyone is alright this morning!
Rose :)
 
Leah - I did have biopsies with my last colonoscopy, but they didn't show anything. I asked about my small intestine, as I know Crohn's can be in there as well, but he said he thinks if it didn't show up in my colon, it's not there at all. He did find one precancerous polyp that he removed. I told him my sister has microscopic colitis but he brushed that off as coincidence. I had a few blood tests with my GP, including one for Celiac (negative) but that was it, the GI didn't do any blood tests. After the scope, he just decided it was IBS with a constipation component, and that the night sweats must be a peri-menopause thing even though I've had them for the last 10 years.

Rose - hooray! Best of luck!
 
Leah, unfortunately antihistamines don't seem to do anything for my guts. Yeah, I know that microscopic colitis looks normal on visualization and can only be found on biopsy - I've had 2 colonoscopies in the past 4 years (one in April 2010 and one in August 2013), and my GI took a lot of biopsies both times and he specifically looked for any signs of microscopic colitis on the biopsies, but he found nothing. I know that microscopic colitis (and Crohn's too) has a skip pattern, so you basically have to luck into biopsying the right spots as the inflammation is patchy. So I guess it's possible my GI just didn't luck into getting the right spots? Not really sure. My main "pain spot" is in the LRQ, I think it's in or near the TI. My GI always biopsies my TI and those biopsies have always been normal too, so I have no idea.

I don't have any of the other autoimmune issues you mentioned, either - no RA (I have some type of arthritis but my ANA is negative/normal so my GP said that means it's not RA). My thyroid tested as normal, no iritis, no pernicious anemia as far as I know. The issues I have besides the mystery IBD are: the arthritis, which is mainly in my right hip. Severe GERD which is caused at least partly by a hiatal hernia. And I have "focal nodular hyperplasia" which is basically benign tumors on my liver. None of that is autoimmune as far as I know.

Rose, best of luck, I hope this gets you some relief and/or some answers! Please keep us posted, this sounds very promising and I hope they can do something for you!
 
Annnnnnd now my poo is black. For realsies. Black like a car tire. Maybe the blood that wasn't blood according to that test really was blood after all. Suppose I'll know soon enough. If I really am bleeding, I must be turbo-anemic by now, at the rate I've been going ... so I'll pass out or something eventually. Hahaha. Proactive, ain't I?

Can any of you guys palpate a roundish mass on your right side, about an inch or two in from the narrow of your waist, roughly inch or two below the ribcage? It's underneath the muscles and fairly large, and soft but smooth. I can't tell what it is though, but I've not noticed it before -- and I push around a lot as a habit I picked up from learning I could help move uncomfortable gas along that way. Anyway, it's not tender, just definitely something that I hadn't noticed before.

Rose -- good luck! You're so young -- I hope you figure things out quickly so this doesn't have to be a drag in the years when people are supposed to feel invincible :).

Cat -- quick note about the RA thing. ANA isn't a stellar indicator for rheumatoid arthritis, from what I've read and remember a rheumatologist mentioning. It's only positive something like 25-30% of the time. I don't know if you have a reason to question the doctor who ruled out RA, but I hope they didn't do it based just on ANA. Have you ever had a scan of your hip? Depending on how long you've had the pain there, there's a slim (very slim -- this is rare) chance you've got Perthes disease like me :-D. Basically the blood supply to the femoral head gets cut off at some point during childhood, briefly, I think, but long enough to damage the joint -- causes the joint to get all misshapen and often leads to extremely early onset of arthritis in the affected hip, especially if the Perthes was severe, untreated, or undiagnosed at onset.
 
Bureaucratic - yeah, I had an MRI of my hips last summer. I saw a very worthless rheumatologist who told me the MRI was normal and therefore he had no idea what was wrong with me. He told me several times "follow-up with your primary care doctor." Uh, no, he sent me to you because you're supposedly the expert. Ugh. My GP said he sees a bit of unidentified arthritis-type changes in the sacro-iliac joints of both my hips, but other doctors I've seen have not been so sure, so I don't even know for certain if I have arthritis or if there's something else going on. The worthless rheumy gave me a couple steroid injections into my bad hip on a whim - I got several weeks' worth of bad side effects from that, which makes no sense because the injections aren't supposed to be systemic (I was nauseous, exhausted, refluxing like mad, and had worse hip pain for about 3 weeks after the injections). Once the side effects went away, my hip actually felt better for awhile. It's gotten rather bad again lately though. It's always worse in the winter, so I'm just looking forward to spring. That'll help. Physical therapy helped it for awhile too, for a couple years I had little/no hip pain - but nowadays, even though I still exercise as much as I can, it doesn't help the way it used to. That's why I saw the rheumy, but like I said he was worthless, so I'm kind of back at a dead end with regard to my hip.
 
I have always had some type of digestive issue... when I was a kid it was terrible constipation, gas and bloating... nothing was ever done about it, and I had always been accused of trying to get attention. As I got older it was either constipation, diahrea, gas bloating, or all of the above... sometimes there would be periods of months or a year or so with terrible constipation, then I would seem normal for a while, then diahrea forever! Then for about 7yrs I was almost normal, although I had loose stools. Then, in 2008, at 41yrs old I became pregnant and was fine until about 7 or 8 months along, and one day out of nowhere I developed the worse watery, runny diahrea ever. I was constantly in and out of ER because of dehydration and crapping blood (tons of it). I was told there were no real tests that could be done because I was pregnant and it was either stress, hormones, or all in my head! After my son was born it did not go away and my doctor kept telling me its all in my head... I found another doctor who finally agreed that passing blood and mucus all day long (going 20 or more times a day) was not the result of bad nerves, and was concerned because I have a family history of colitis. I was checked for parasites and had a colonoscopy (was checked for several forms of colitis, Crohn's, and cancer) but everything came back negative. I was told that it was observed during the colonoscopy that I had lots of scar tissue however, and a few ulcers that appeared to be healing. I was put on several meds, all of which made me worse, not better. This is ridiculous... I pass blood, mucus, cant pass gas unless I am on the toilet because something else will pass as well, have really loose stools, or runny ones... and sometimes they are hard to pass even when very watery. I cant hold a job, and keep getting fired because I spend more time in the bathroom then working, or don't make it in because I cant leave the house! Further tests were to be done, but have not been scheduled because I have lost my health insurance (this affordable health care reform thing is not so affordable and I no longer am eligible for Medicaid). I tried eating gluten free and at first I thought it made me feel better, but now I feel bad again. Of course I cant get disability without any type of diagnosis and I am going nuts trying to figure out how to support myself and my 4yr old son... I have no support from family, and many who I thought were friends either don't take this seriously or think I am exaggerating. I am so sick of being accused of this, and of not wanting to work, being lazy, or hearing "its all in your head". I have always prided myself in being independent and a hard worker and am finishing my studies to become a certified fitness trainer, but I cant see how I am going to be able to work if I cant keep this problem under control. I want my son to look up to me and be proud of me, not think of me as a sick mommy who is no fun... this is so depressing I just don't know what to do or where to turn anymore. The problem flared up again over the Christmas holidays and has been getting worse and worse ever since and I don't know what to do with very little income and no insurance!:confused2:
 
Are there any clinics in your area that charge on a sliding scale based on your income? We have one here. It's for the uninsured or underinsured. Some pay a small fee, some pay nothing.
 
Naturelover said:
Are there any clinics in your area that charge on a sliding scale based on your income? We have one here. It's for the uninsured or underinsured. Some pay a small fee, some pay nothing.
Click to expand...

I am not sure... how would I go about finding one, or if there is one around here... is there a specific name for those? I never thought about that, it may be a good option... thank you for the suggestion!
 
BN - I tried, now full of regret.... my right side is the bad side. and I poked around to feel. Now it hurts over there, but I didn't feel anything like what you described. I think I have before, but I kind of always assumed it was like a loop of bowel or something?
 
Well, today went well and completely terrible at the same time!
I GOT MEDS!!! They have put my on codeine for the time being to help with pain and diahrrea until they have completed a capsule endoscopy - Result!
However with all good seems to come a bad in my life - they have detected that something could be wrong with my heart as it is beating much much faster than it should be and thats really worrying. They think that could be part of the reason behind the passing out. Got to go and have an ECG on monday to find out if there is any problems that could be or could become life threatening.
Hell really is breaking loose in my life at the minute!

At least we have one result and that is a better doctor and some medicine! :) its a start atleast!
Best wishes to you all! Rose
 
Cat-a-Tonic said:
Bureaucratic - yeah, I had an MRI of my hips last summer. I saw a very worthless rheumatologist who told me the MRI was normal and therefore he had no idea what was wrong with me. He told me several times "follow-up with your primary care doctor." Uh, no, he sent me to you because you're supposedly the expert. Ugh. My GP said he sees a bit of unidentified arthritis-type changes in the sacro-iliac joints of both my hips, but other doctors I've seen have not been so sure, so I don't even know for certain if I have arthritis or if there's something else going on. The worthless rheumy gave me a couple steroid injections into my bad hip on a whim - I got several weeks' worth of bad side effects from that, which makes no sense because the injections aren't supposed to be systemic (I was nauseous, exhausted, refluxing like mad, and had worse hip pain for about 3 weeks after the injections). Once the side effects went away, my hip actually felt better for awhile. It's gotten rather bad again lately though. It's always worse in the winter, so I'm just looking forward to spring. That'll help. Physical therapy helped it for awhile too, for a couple years I had little/no hip pain - but nowadays, even though I still exercise as much as I can, it doesn't help the way it used to. That's why I saw the rheumy, but like I said he was worthless, so I'm kind of back at a dead end with regard to my hip.
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Cat I'm not sure if I mentioned this before so I'll apologise now if I did. Recently at a gp appointment we were discussing steroid injections and he told me he had been reading some research that showed injecting steroids into muscle or just under the skin proved to be as effective as directly into a joint, it seems that (in true layman's terms) the steroid was able to"find" where it needed to go, so that might explain why you had other problems after your hip injections?.
 
Lizbeth, thanks, that's very interesting information. My worthless rheumy seemed to think that my hip pain was more muscular rather than in the joint itself, so he had given me 2 injections into the 2 large muscle groups that are in the outer hip area. I did have relief from my hip pain for maybe 4-5 months before the pain started coming back, so I think it worked, but I don't think that a few months of relief was worth a few weeks of icky side effects. Still, that's good to confirm that the steroid likely went where it was needed and that's why I got some relief after the side effects died down. I'll file that information away for possible future use, in case I ever decide to get another steroid injection (not likely, but possible).

Rose, are you dehydrated? I'm guessing probably so with the many bathroom trips you've mentioned - it's very easy to get dehydrated when you're having diarrhea and/or vomiting. Even being a bit dehydrated can raise your heart rate, so hopefully it's just that and nothing more sinister. If the ECG doesn't find anything, ask your doctor if perhaps you could do a bag or two if IV fluids and see if that helps the issue. Being in pain itself can also raise your heart rate I believe, so possibly the codeine will help you in that regard as well. And yes, as you said, codeine should help with both pain and it should slow down your bowels, so you should hopefully get some decent relief from it. I'm glad it seems you now have a doctor who is taking things seriously and actually helping you! Good luck on Monday, keep us posted on how the ECG goes. I hope your heart is okay!

Hi Zoey, welcome to the forum. I would just do a google search for "free clinic" in your area - I know they are pretty common here, I think there are 2 in my neighborhood alone. If you are a member of a church, you could ask someone at your church about it as sometimes those clinics are run/funded by religious charities. Also, I can't believe your doctor said everything from your colonoscopy was "normal" when you had ulcers and scar tissue! You don't get scar tissue from just anything - IBD (Crohn's/colitis) is pretty much the only thing I know of that causes scar tissue in the intestines. So that's ridiculous that that doctor didn't diagnose you! Can you call that doctor/hospital and ask for a copy of your colonoscopy results? If you can get those, showing that you had ulcers & scar tissue, perhaps you could bring those records with you to a free clinic and show them to the doctor there. They might be able to prescribe you something like prednisone, which is both affordable and effective for IBD - it could be enough by itself to get you some relief from this flare. That's what I'd do if I were in your shoes - get those records and take them to whatever doctor you can see for free/cheap. I believe doctors legally have to hold onto medical records for at least 10 years, so they should still have your colonoscopy records on file. They may ask you for a small fee in order to print/photocopy your records, but I believe if you say you're not able to pay, then they're legally obligated to print them for you anyway free of charge. So yes, try that if you can, that'd be a good starting point. Good luck hun, I know it's ridiculous in this country with our medical system and everything costs a ton even with insurance. I hope that helps a bit - let us know how it goes!
 
Rose-- Have they tested your thyroid? Hyperthyroidism can make your heart beat really fast and also lead to diarrhea. I'm glad you got some meds. Codeine should slow things down.

BN-- You probably know this, but some medications (like Pepto-Bismal) and some supplements (like iron) can cause black stools. Check to see if that's a side effect of anything you're taking. If not, you should probably get that checked out in case you're having bleeding in your GI tract somewhere.
 
Cat-a-tonic - i do get slightly dehydrated from time to time but i drink so much water to stop thst where possible. However if the ECG comes back clear i will definately mention that. Unluckily for me there is heart problems all through the family, so that in its self gives me more of a risk of developing something.

Chickadee - yes they have tested my thyroid and everything was ok with that, so i guess thats a good thing!

Thanks for all your support, its lovely having people who know how you feel! I will keep you updated :)
 
BN-- I know you've kind of sworn off of doctors, but you may want to reconsider. :/

Rose-- Well, yes, I guess it's good that your thyroid is normal, but that would have been a fairly easy fix. My heart beats a lot faster when I am severely anemic. (Maybe 105 bpm.) You may be anemic since you've been having GI bleeding, though I would think they'd have tested for that by now. I hope you get the heart testing done soon!
 
So last night we went to this local restaurant for a friend of mine's "back to work party" (she also has brain cancer, how ironic is that?). I couldn't eat much, but there were some little grllled lamb chops, thought those would be safe. So I had two little chops and some strawberries and this morning a TON OF D! and now I feel like total butt. I don't know if they were marinated in something maybe or if lamb is an unsafe meat for me or what. and I'm down another darn pound. 127. I just don't know. I'm calling Mayo. Hopefully I can find a doc with an opening sometime soon who's willing to see me.

Sorry everyone for the rant. I'm just frustrated. My brain meds mess me up, and this belly stuff just won't end, and aren't we all just a mess. I hope some of us get better soon!
 
Cindy, strawberries tend to bother me, but like you said maybe it was something the meat was marinated in. I get ill for days from the smallest amount of coconut - at Thanksgiving, my aunt made gluten-free gravy and she thickened it with a small bit of coconut flour. I didn't think to ask what was in it and I only had a little bit, but wow, I got nauseous fast and spent the next 4 days alternately on the couch and in the bathroom. So sometimes just a little bit of something can have a huge impact! I hope you feel better soon, and good luck with Mayo. I hope you can find someone there who can figure things out already and doesn't just write you off as having IBS.

Bureaucratic, could you re-do the blood in the stool at home test thingy? You had mentioned something about citric acid or energy drinks possibly tainting the results - can you stop drinking those for a few days and then do the test over? (I don't want to send you into caffeine withdrawal - can you switch to coffee or something else when stopping the energy drinks?) Black stool is concerning particularly if you haven't taken anything or eaten anything that can color your stool like what Chickadee mentioned. Just to make sure - you haven't had anything like spinach, blackberries, blueberries? Those are the ones I know of that change my stool color. I'm pretty sure a grape popsicle once turned my stool dark, too. Anyway, that's concerning and I'd get it checked out if it were me.

Rose, how are you doing today? How are the new medications treating you? And how'd the ECG go?

Chickadee, that's interesting to know that anemia/blood loss can raise the heart rate, too. I'm presuming that drops your blood pressure, also? I have chronically low blood pressure and I find mine is related to dehydration and/or low sodium. I wonder if I might be anemic too though since I always feel so run down and crappy for several days after I have an episode of blood in my stool. Maybe that's more related to inflammation than blood loss, I'm not sure. I'm going to see my GP next month for my yearly physical, and I'm going to ask him to test my blood for various stuff (iron, B12, etc). It'll be interesting to see if blood in my stool every couple weeks or so has had an impact.

How's everybody doing today? I'm so-so. I had a 2-day migraine all weekend, lovely. And it's snowing like crazy today (I'm SO sick of winter!). So I'm not wonderful but not hideous either, I'm okay. Hanging in there. Still waiting for Entocort to fully kick in - I think it's the culprit behind my recent few migraines, so I am hoping my body adjusts to it soon.
 
Hey Cat-a-tonic, the new meds seem to be helping! In alot less pain and only been to the toilet 6 times today instead of 20+! Which is a good thing!

ECG didn't go too well, while they've said it didn't show anything that is life threatening(thankgod!) They've said its way too fast and thats really dangerous... So guess what! They are testing my thyroid again -_- if they take any more of my blood i might cry!!! Hate needles aswell!

Had a bit of a rough day and sat and cried my eyes out as i've been feeling SO drained and pressured... just need a diagnosis already as this is starting to really drag me through the ground :(.

Hope your all well. Rose
 
My gut REALLY won't cut me any slack today. I've been on the toilet within 10 minutes basically any time I eat or drink more than a couple sips of anything ever since I ate something with lactose yesterday -- I'd been more diligent about cutting it all out since my stomach has been acting up lately. Last night my left side was so tender it actually seemed to be causing tenderness in the skin, too, like over the area with the pain deeper in the guts -- the skin over it felt bruised.

Not really sure what to do. Supposed to take off on a vacation tomorrow. I think I can handle it, bathroom-wise, if I eat extremely lightly -- not really hungry anyway -- but I'm nervous. I still have no idea if this stuff is blood or what, but I do know I definitely just saw the stuff I ate 12 hours ago back in the toilet pretty much undigested :-/.

It's easy to forget how screwed up my stomach really does get when it gets this bad. Now that I'm back in the thick of it though, I remember what made me so sure this couldn't just be IBS. This isn't "oh dear, a bit of diarrhea, this is unfortunate" type cramping. It doesn't go away. It doesn't even get worse before I have a bad bout of toilet time because it's pretty much awful constantly. My whole abdomen hurts.

There should be some website where you can post a picture anonymously and just ask a doctor, dude, is this blood in my poo? I could REALLY use that right now.
 
Yes, we think you have Crohn's is what I heard for 10 years. I don't, and they can't prove I do, so they have to treat me differently now, and I get a lot of resistance. Mainly I think it is due to how expensive my treatment is, and how successful. My doctor wants to write up a paper on treating C-Diff with this, and how many people could be falsely diagnosed and mistreated. I just started the Immune Deficient Support group here. Please join me there for a further discussion on how to get tested and find out.
 
Well I ended up going home early from work yesterday. I just couldn't take the pain and rumlbing anymore. I ate lunch and it got worse. So much pain. I'm not sure if it was the lamb or if it was a marinade on the lamb but I'm afraid of it now! I've contacted Mayo and am waiting to hear back from them.
My hubs was looking at me last night and said he thinks I'll disappear sideways pretty soon. I'm adding a second Ensure protein shake daily and trying a hard-boiled egg too. But it's hard, I'm never hungry and often nauseated.

BN, that bloody stool thing has got to be figured out soon for you! There has to be some explanation.

Cat - yeah, when you're anemic, the blood can't carry as much oxygen so the heart has to work a lot harder to move the oxygen that's there around the body faster. That makes arrhythmias start.
 
Cindy, refresh my memory, do you take any type of anti-nausea medication? Zofran or anything like that? It can be mildly constipating so maybe not ideal for you, but if it could help you eat more and maintain/gain weight, it could be beneficial.

Bureaucratic, I hope you're able to have a good vacation. As for a website where you can anonymously ask doctors questions - I know of a website where you can anonymously email questions about lab tests and get them answered by medical professionals. I've used it a few times myself - sometimes it takes awhile to get a response, since it's volunteers who are responding to questions, but I got good responses on several occassions. Here's the link:
http://labtestsonline.org/
It's a bit convoluted to get to the section where you email your question, but basically you have to click on the name of a test and then click the "ask us" tab. So from the home page, for example, I selected Inflammatory Bowel Disease, then clicked on Fecal Occult Blood, then "ask us" which brought me to the screen where you submit your question.
http://labtestsonline.org/understanding/analytes/fecal-occult-blood/tab/ask/
You can't attach a photo, and I don't think the question goes to an actual doctor to answer, but it is kind of what you were looking for. A start, anyway. Hope that helps a little bit.

Rose, it's okay to cry. Why are you feeling pressured, is it your family doing that to you? I hope you can get some answers from the capsule endoscopy - only a week away, right? Try not to be scared of needles - unfortunately, having to deal with needles is just part of having a chronic illness. Not fun, but necessary. And maybe you can treat yourself to make yourself feel better about it. I remember that when I was a kid, anytime I had to go to the doctor, my dad would give me a toy afterwards - he'd show me the toy beforehand so that I had something to look forward to, and after the appointment I could play with the toy. When I got sick, I decided I'd do that for myself (not with toys though). For the first year or so that I was sick, anytime I had to go to the doctor or hospital or pharmacy, I'd buy myself a little bottle of nail polish to cheer myself up. It was pretty and made me happy, it wasn't too expensive, and painting my nails was something I could do even when I didn't feel like doing much of anything else. Of course, as a result, I ended up with wayyyy too much nail polish, ha ha. :p But it did cheer me up, knowing that even though I have to go through something yucky like having needles stuck in me, I could still go buy myself a little sparkly treat afterwards. :) So maybe you could get yourself a little treat after the thyroid test to cheer yourself up too. Just a thought. Hang in there hun, only a little while to go until the capsule endoscopy, and hopefully that will get you some answers.
 
Hey!

Get the feeling i could be up all night after sleeping all day! Threw up my meds on the way to work this morning so turned around and went back to bed.

Cat-a-tonic, quite a lot of pressure from my family as all they do is moan at me to go to work because apparently i am "just feeling sorry for myself" and "being lazy''... fantastic help they are. Boyfriend isn't much better right now, somehow lying to me that he's busy doing something important and then updating his facebook status to ''great night watching sons of anarchy''... very important, he hasnt even got the time to text me goodmorning or goodnight anymore... great support from someone who ''loves me more than anything in the world.'' Apparantly, the lads don't count in that statement.

As for treating myself - that sounds like a plan! However i'll need to find something cheaper than my clothes addiction as thats costing me a fortune already!

Capsule endoscopy a week today! So with any luck, i will get diagnosed with something! Apart from work getting annoyed with me having so much time off... need to get a doctors note to cover me, except will hace to wait until monday as thats when my doctor comes back from a week away. Except my immune system is so so low at the minute my eye condition is coming back and eye lids are cracking - painful!!!

Hope you've all had a good day. Rose :)
 
Hi everyone and welcome to ask the new folk :). I've been trying to keep up to date with everyone but I'm way behind, I do want you all to know that I think about you a lot and hope you are having better days.

I finally got home yesterday, dad had his neurosurgery on Saturday morning when a sizeable clot was removed, he's doin really well so I though it was a good time to sneak home plus it was my other halves birthday and I wanted to surprise him. We had a lovely night. My tum has sort of been behaving apart from excruciating pain but that's a daily problem that I'm used to. I get my mri results on Monday when I should hopefully find out what the heck is going on and maybe come up with a plan of action.

Cindy one of my other daily troubles is nausea for which I take zofran or cyclezine and they do help me eat better, I usually take one of them a little while before a meal time.
 
Hey everyone! mayo called me back and I have an appointment with a GI down in Rochester! It's not until the end of March, the 25th, but they told me to expect to be down there for 3-5 days bc the doc will probably want me to have tests done while I'm there (sheesh, another scope already?). But maybe I'll have a good GI this time who will really listen to me and give me some answers. Last night and today have been rough. Every time I eat I feel sick after and get really crampy, with the worst pain in my RUQ, the spot I usually do hurt.
I guess I haven't taken any anti nausea stuff. I'm worried about the constipation since I have problems with that but I guess if my nausea is bad enough to keep me from eating maybe it's worth the risk?
Lizbeth, glad to see you back and to hear things are going okay for you!

Rose, hang in there. I hope you get some good results from your next test.
 
I had an experience today and I'm thinking you guys can relate. I made myself totally depressed and mostly I just need to write it out. This might be kind of long, my apologies in advance.

So I am a garage sale fanatic. I freaking love buying useful, cool stuff for way cheap. Getting a bargain gives me a rush. My dad and my grandma are hoarders, and although I try very hard not to be a hoarder, I definitely do get a thrill from finding something I need/want for like 50 cents or a buck at a garage sale. Obviously I live somewhere cold & snowy half the year, so I haven't been to a garage sale since summer ended, and I've been kind of in withdrawal. :p I've been going to thrift & consignment shops regularly but it's not quite the same. I got desperate, so today I went to an estate sale.

If you don't know, an estate sale is where someone has died and their stuff didn't go to any heirs or they didn't have a will or whatever, so their estate sells off all their belongings at basically garage sale prices (sometimes a little more expensive, but the stuff also tends to be nicer). And it's held in the house of the person whose estate it is. So basically, you go to a dead person's house and pick through everything they owned and maybe buy some of it. It feels so strange and intrusive to me. This was, in a way, a person's whole life - their home and all of their belongings. It's pretty morbid. And it can be so depressing.

I remember, I went to an estate sale about a year ago and it made me so depressed. The woman whose estate it was, they said she died of colon cancer and she wasn't that old. Well, being (probably) an IBD'er, I know my risk of colon cancer is higher than that of the average person, plus there's a history of colon cancer in my family. So I started comparing myself to the person whose estate it was, and I still think of her sometimes, particularly when I use the little blue bowl that I bought from her estate. I know, it's stupid and weird maybe to think of a person who I never met and didn't know, but in a little way at least she was like me. So then the mind jumps to, maybe I could die like she did, and then people would be nosing around all my stuff, and how depressing would that be!

So the estate sale I went to today was even worse I think in terms of how depressed I became and how much I could relate to the dead woman whose stuff I was perusing. Her bookshelf revealed to me that she leaned politically the same way I do. Her clothes revealed she had awesome style and wore a similar size to me. Her basement was FULL of crafting supplies and multiple sewing machines and tons of fabric (*I* have multiple sewing machines and tons of fabric too!). Her clothes seemed to indicate she wasn't very old, she had some very stylish and cute, modern stuff. So I started wondering, how did she die - was she sick? Then something on her bookshelf confirmed it - I saw a book called "The Lupus Book." Oh, so I'm presuming she had Lupus - that must have been horrible. I don't know if that's what killed her, but she was a chronically ill person like me. Just based on her stuff, I related a lot to her - she was crafty, cool, and chronically ill. Like me. And again I started thinking, what if this was my house? Someday it probably will be. How weird and sad it would be for strangers to pick through my life's collection of stuff and make judgments about me and what kind of person I was. Like that's all you are when you die, is just stuff (and presumptions based off of said stuff), and anyone who shows up to buy your stuff can have it. It's hard to put into words, it's just seriously depressing.

I'm not going to go to any more estate sales, I just can't handle it. At garage sales, it's a living person selling you their unwanted stuff, which is way different than a sell-off of everything that was owned by someone who died. There's no emotional component, at garage sales they want to get rid of it but at estate sales I think the person who owned the stuff would object to a lot of it being sold. Looking at the lady's jewelry at the estate sale today, I couldn't help but think that she wouldn't want to get rid of her stuff to just anybody if she had any say in the matter (she had some gorgeous stuff). I felt guilty about buying one of her necklaces, and I'm sure I'll think of her when I wear it. Maybe that's a good thing? Maybe being remembered is the best thing you can hope for when you die? I didn't know her but I feel connected now. I also feel sad. I feel like I'm not properly conveying my emotions, but I hope this all made sense. No more estate sales for Cat because they apparently just wreck me and make me think about what will happen when I die and they also make me sad for and relate to total strangers. Ugh.
 
BN-- Could you ask your doctor for some of those test cards for occult blood (smear tests)?

Cindy-- I'm so glad you got an appointment scheduled at Mayo! I hope that they are able to help you. Have you ever tried taking ginger capsules? I find them to be helpful for nausea. They don't work as well as Zofran, but they shouldn't be constipating.

Cat-- I can understand why an estate sale would be upsetting/depressing. I had a friend who used to work for a company that set up estate sales, and just hearing his stories made me sad. :/

Well, the vancomycin seemed to be helping, but now I'm back to loose BMs. I see my doctor tomorrow though.
 
Chickadee, thanks. :) I could never do a job like that. I'd be simultaneously wanting to buy everything and also too depressed to do anything. If estate sales gave zero information about the deceased, that would be one thing. But just looking through a person's things tells so much, it's impossible not to think about what kind of person they were and draw comparisons to yourself.

I will say, I did once go to an estate sale a few years ago that I was actually okay with being at and didn't get super depressed. The lady apparently was VERY old and died of natural causes - I can deal with that (the colon cancer lady and the lupus lady got to me because they apparently both died too young and had relatable ailments, so it's easier to compare them to myself). So the lady who was very old, at her estate sale, there were a bunch of other old ladies in the kitchen, not shopping but just gossiping about the deceased (I guess they all knew her). They were marvelling at how many kitchen utensils, appliances, etc that she had. "Look at this! She's got an egg timer! She never made eggs!" "What is this, a breadmaker? She never baked anything!" "She's got all this cooking stuff - she never cooked once in her life!" I did think that was funny. If my stuff is scrutinized after I die, I hope it's in a similar way. I don't cook either but I have a lot of kitchen stuff. :p "Cat couldn't follow a recipe to save her life, why did she have 15 cookbooks??" Ha ha.

As for the ginger thing - it actually can be constipating too. Before I got sick, I would take ginger as a natural sea-sickness remedy any time I had to go on a boat. I get sea sick VERY easily so I would always pop a few ginger capsules. The rougher the water looked, the more ginger I'd take. My mom is the same, she also gets sea-sick easily. We were on vacation once and we were going to go on a whale-watching boat, and the water looked rough, so we both took 5 or 6 capsules each. And we were fine, no sea sickness at all, not even a tiny glimmer of nausea. But neither of us pooped for days either! My mom asked me later if I got quite constipated, and I said yes, I sure did. So it seems it was the ginger that did it. I'm sure just taking one capsule would be fine and wouldn't constipate, but it also might not do a whole lot for nausea. You can get ginger tea too which might not be constipating (hot liquid tends to move things through quicker for me sometimes) and you can also try pickled ginger or just get fresh ginger root. I've even seen ginger candy & gum, I think at the Asian grocery store. So there are ginger options besides capsules - they might not do much, but they could help. Worth a try!
 
Careful, I found out the hard way that I can't take Ginger or cinnamon. Bad allergic reaction, throat swelling shut. However, mainly when i am real sick, no problem during remission. Wierd stuff
 
Hmm...I take ginger capsules every day (usually 3-4 per day) and certainly don't have an issue with constipation. I also get any kind of motion sickness very easily and up my ginger dose for travel. I guess you could just see how your body reacts, Cindy. Obviously, not a good idea if you're allergic, though.
 
Thought i'd just have a bit of a ramble this morning,
I have been off work since tuesday being ill... throwing up and in excruciating pain! I have been so so poorly overnight throwing up 7 times in the night and still wake up feeling sick and feeling like someone is running a knife around my intestines. So i tell my mum i'm going to stay home and try to get slightly better as i also have a massive cold, which i could be refused my test in the hospital tuesdsy because there is a bad case of neurovirus and they don't want any more germs in the hospital. So i thought the best idea was to take today off work and get better! Apparently, according to my mum thats not the case and i should go to work even though i have spent all night being sick to wake up and have all my stomach problems again in the morning. Is that really too much to take nearly a week off because you are genuinely poorly! Waiting for my doctor to return to get a sick note for work aswell, feel like they are starting to get funny with me too. What the hell can i do if im ill!
 
Oh, Cat. That does sound like a sad experience. I can see, in a way, why it got you down. Honestly, though from another side, I'd think the girl whose stuff it was would be so glad you got her necklace and would be happy you were wearing it, especially since it sounds like you had so much in common. I'd be happy knowing someone so much like me who would understand such things and would think specifically of me whenever she wore it. So I think you should treasure it and not be afraid to wear it, and do think of her when you do wear it.

I'll have to check into the ginger thing, I know my hubs has a medication that's supposed t help with nausea that he was given after his surgery, but I can't take that because when I checked into side effects, it can decrease resistance to seizures and that would be VERY bad. I know I don't have an allergy to ginger bc I've tasted it at sushi restaurants, and used it in cooking, but I'm not sure about the constipation thing. Something's gotta help though. I couldn't even finish my cereal this morning because I was so nauseated, and I've been nauseated and had cramping all morning. It's pretty miserable, and the appointment on March 25th seems pretty far away.

Rose, I'm so sorry to hear things are going so badly for you. I wish your family was more supportive of your condition. Hopefully you are able to get some rest after such a bad night.
 
Well today hasn't gone too well... been in really bad pain and feeling very poorly. I then get a phone call to tell me they want to sign me off work for three months! My job is the only thing i have in my life to keep me going right now. I've had a bad flare for the past couple of weeks and had to take it off as i can't leave my bathroom. Without my job there is no point me even bothering anymore because i can't stay at home for 3 months as i don't get along with my family so it's like giving me a prison sentence.
Really don't know what to do now and so wish i wasn't me anymore. Could anything get much worse :(
 
Rose, I'm so sorry to hear that. Can they do that, legally? I don't know where you live specifically, so I'm not sure. It's too bad you don't have any good friends close by who would take you in for a bit so you wouldn't have to feel like you were trapped with your family. I wish they were more supportive of you. I just can't imagine why they aren't. Grr. Hugs from me.
 
As I'm undergoing tests, legally they can. As long as they don't actually lay me off they can sign me off sick for 3 months and I get practically no say. I'm in the UK. I wish I did have some close friends, but they all left when I got ill, I was unable to have so much of a social life and that's what they wanted. Real friends eh!
I've been off for 4 days this week and all my mum has done is scream and shout at me for no reason. I feel like I'm in jail or a never ending nightmare!!
Thanks for your support though mccindy, means a lot to me.
 
unfortunately legally then can, I had the same done to me, its a pain, luckily it was only 2 weeks.

RosannaKate, im sorry your family aren't supportive, maybe being signed off might show them you really are ill though?
 
Rose, that's all just terrible about your job and your mother and everything. For what it's worth, I'm 34 and my mother isn't supportive at all either and I don't have a lot of friends (I have a few but they mostly live in other cities). So I don't have answers, but I can relate. Even though my mother has seen me really ill, she's seen me way too skinny because I was too sick to keep any weight on me, she's seen me too sick to leave the couch, etc - she's still not supportive. (On the day that she came over but I was too sick to leave the couch, she complained the whole time that she couldn't go shopping because I wasn't able to go with her - ugh.) I can't believe a parent could do that to their child, but it happens. And it seems even worse without a diagnosis, my mother can say well they didn't find anything wrong with me so I should just change my diet and I'll be fine. Hmph. Things should get somewhat better when you're legally an adult (you're 17, right? Is legal adult age 18 in the UK? I know it is 18 here in the US but not sure about other countries). At least when you're legally an adult, you can move out! I live in a different city than my mother so I don't have to see her very often, which is quite helpful to my stress levels and my overall health. So hang in there, not long until the capsule endoscopy which will hopefully find something, and then not long to go until you're an adult and can leave that toxic environment. I know it feels like a neverending nightmare now, but there is definitely a light at the end of the tunnel. You just need to get a diagnosis so that you can get some treatment and relief (so that you can get back to work - you may need to find a new job too as that sounds like a toxic environment too!), and you need to move out as soon as you're able to. Once those things happen, everything should improve dramatically. Just got to hang in there until then, hopefully not much longer now.
 
Akiva - Thanks, 3 months seems so long! I don't need 3 months off my job, i need the consultant to pull his finger out! I love my job and these days the commucations industry is so difficult to get into in the UK i don't want to lose this as i want to become a coloumist! Unfortunately my delightful mother has seen me lose 2 1/2 stone very very quickly, throw up and pass out almost daily right now and spend all day in the bathroom. Still she doesn't care. I haven't told her about my job yet as i don't want the extra stress before undergoing yet another test.

Cat-a-tonic - Parents ay! They are supposed to be the ones here for us and instead they are the ones making our lives worse right now. In the UK you can legally move out at 16, however... finding a private landlord to accept you under 18 is practically impossible, which for me isn't until november :(. Not only that is i get paid £3.85 an hour, which doesn't go very far once i've paid my rent to live at home and food and clothing abd other essentials, in fact, that dissapears very quickly! I just can't afford to do it. You see all these people winning millions on the lottery and then blowing it... i sit there like even 1,000 would be a lifeline to me right now just to take the pressure off.
I just want a break from all this illness and strain, i need a break to get through this!
 
RosannaKate - Parents are a pain at times, im lucky my mum is mainly supportive. Im kind of stuck in the same boat with regards to consultants, I phoned them up and bollocked them and got an appointment a little earlier, perhaps you could try that?
Would it be possible to do any of your job from home? Or perhaps write something whilst home? When I was a little younger then you I wrote an article for my favourite magazine at the time (practical fishkeeping, sad I know but hey I love fishkeeping :p) and it was published, if you've got to be off maybe you could do that and keep a foot in the door?
If you need to chat send me a pm.
 
Hey akiva, thanks for all that. In my job they actually allow home working, although even when i explained to my managers my condition and that it would be really useful to homework they immediatly dismissed it saying "you can come into the office so no. If your sick your sick so working at home isn't going to help.'' Then the best bit!! ''You just need to rest and get better then come back to work.''
How rediculious! 'Rest and get better' when i tried to explain it wasn't as easy as that i just got ''sure it is, thats what we all do when were ill' -_____-!
I've tried the articles for magazines since i was 16, the problem is that they've always said ''the article is great but we've already got writers we've employed so we don't need anymore for the magazine''. It's not an easy business now, everywhere wants journalism degrees and they cost a lot of money to get! So i don't want to lose what i have now. So just pushing through right now. With any luck i'll get there :).
 
Zoey. I really feel for you. All I can suggest is to TOTALLY revamp your diet until you can figure out how to get in to see a doctor. Gluten probably is a problem ( the biggest culprit), but when we have gone years and years with no treatment, other food intolerances show up. Our system becomes very inadequate at digesting. If I was in your shows, I'd take ALL gluten, dairy, and soy out. And until you feel better, take any fiber out of your diet ( like RAW fruits and veggies and beans). Try to stick to meats, COOKED veggies, and some white rice. Broth is good with chicken and cooked carrots. I also ate GF cereal ( Chex) with almond milk… and eggs. Eating like this for a good six months has made me almost normal again.

Good luck
Leah
 
Hey Rose, just a random thought - the forum has a newsletter that goes out every so often, and I know that David has been looking for people to write articles, etc. Perhaps you could be a regular columnist for the newsletter? It wouldn't pay anything of course but it could get your name out there (assuming you'd want to attach your name to a Crohn's forum newsletter) and get you some experience, something to put on a resume' perhaps. Here's a link with more info about the newsletter:
http://www.crohnsforum.com/showthread.php?t=52941

Oh, and Rose, best of luck tomorrow! Are you doing prep today? If so, good luck. I know it's not fun drinking gallons of laxative, but if it gets you a good result then it's worth it. Keep us posted on how tomorrow goes!

How's everyone else doing today? I'm pretty well. I think the Entocort is doing me a lot of good, it's been over a week I think since my last bad day. I was able to go to the gym and also do a lot of housework (laundry, dishes, cleaning, vaccuuming, organizing, etc) yesterday - and I wasn't crazy exhausted by the end of all that. Last time I was on Entocort, it made me feel like a normal human again and this time seems to be similar - that's definitely a good thing! :)
 
Hey Cat-a-tonic, i've been lucky that i don't have to do the prep as they didnt want to risk me having to cancel as i threw up the last lot they gave me. However i've not been able to eat all day or take my codeine so i'm starving and getting bored of having to run to the toilet! Been having a bad couple of days with that and tummy pains are horrible right now.

Glad to here your well and i will certianly have a look at the newsletter, thanks. Rose :)
 
I wish I could share my mother with all of you! She is good and caring to me about all my issues. and has extra attention - if you know what I mean, sometimes she gets a bit overwhelming about it, but with seeing how other mothers can be, I really appreciate her.

I had a good weekend seeing friends and family back in Wisconsin. Didn't eat much, I just haven't found anything to help with that. My cousin even sent me some edibles to try to see if that would boost my appetite. Tried those for several days, but no luck. I never felt hungry, any more than usual (which is basically not at all). It's gotten to the point where I never want to eat and kind of just have to decide I should and kind of make myself do it. Which sucks since I'm already nauseated, it just makes that worse. Boo. At least I drink a lot of water, I guess, so I'm at least hydrated enough? But even when I eat what I know is food I tolerate consistently, I'm still having that pain in my right belly off and on pretty much every day. Hopefully when I go to Mayo they find SOMETHING.

Leah - I wonder if going for years untreated is why I've developed so many intolerances in the last two years. I pretty much ignored all my symptoms, over the years and just figured that having an upset stomach and being bloated was just how things were going to be for me. Kind of wish I could back now and tell myself to figure things out, since now I can't eat much.
 
It could be mccindy. Thats why I try to implore people to get on the diet thing as early as possible. IF anyone has doubts about the FOOD connection, just know that I know many people who have gotten better with diet ALONE. Even though I used Entocort for 6 months, I totally revamped my diet at the same time ( within a month of dx). It's two years later now, and although I have had mini flares along the way, I have continually been healing. I can tell. I have slowly been able to add many foods back in successfully. The elimination diet takes a lot of patience, but it's so worth it in the long run.

This past weekend, my husband and i went to the Mendocino Coastline ( Northern Ca.) for a getaway. So beautiful. Anyway, I have been completely gluten, dairy, and soy free…and most fruits are out too… for the past two years. On this trip, I took a few risks. I wine tasted on the way up AND on the way back. The H-2 antihistamine helps with that. I also broke down and ate a GF cookie that was made with BUTTER ( dairy)! AND I'M FINE!!! I have had once a day solid BMs all weekend and today. Yay!

So, I hope that gives some of you hope. And if there are some of you who haven't figured out their intolerances and stopped with the fiber, fruits and sugars, then maybe you will take a hard look at that. It has made a huge difference for many people I know…including me :)

Leah
 
Mccindy if only i could share your mum, could do with some supportive family.

Well guys, an update on capsule endoscopy- we've just about got through it so far. Ended up stuck in the bathroom from 5am and then was throwing up from 6 :( never felt so ill in my entire life, so thats not too good. Just about managed the ride to the hospital (in pjamas as i couldnt get dressed!) However i have never run so fast to a toilet in my life when i got there. Everything went well with getting it into the small bowel, so home until 5:45pm when i have to take all the equipment back. Fun! More long journeys! At least the pubs on route are open this evening if im desperate! Nowhere to go at 8 this morning.

With any luck everything else will go as well and thats the last of the tests! Hope your all well, Rose :)
 
Rose, I tell you what.... you're a little younger than my own boys, so you could technically be my daughter, age-wise. I'm sorry your own mother is not supportive or helpful. Please feel free to come to all of us here, and you can also contact me via private message as well, to talk about anything you'd like, or just to vent. I've seen my own kids through some tough times, and I also know what this IBD stuff is like, so I can support you two ways. I know it's not the same as your own mom, but I'd like to do what I can for you.
 
Cindy, will you just adopt all of us? ;) Just kidding of course. Seriously though, that's sweet of you to be so supportive to Rose. Your sons are lucky to have such a strong, sensible woman as their mother. My mom, well, let's just say she's messed up. :p My dad's got OCD and is a hoarder, and my brother's had some issues with drugs although he apparently has cleaned himself up for the time being - so yeah, we're a super fun dysfunctional family. :p I'm the most normal one (I think? I hope!). Speaking of my family, my mother informed me yesterday that she's going to come down to my city for a visit this weekend, but now the forecast looks like lots of snow all weekend long - never thought I'd say this after the winter we've had, but yeah, let it snow! If it keeps my parents from driving and gives me a blissful restful weekend alone, that's awesome.

Speaking of hoarding, my grandma is a hoarder too. She's collected zillions of random things over her lifetime and sometimes she gives stuff away. A year or so ago, she gave me her vintage button collection. The box of buttons literally weighed 45 lbs and I couldn't imagine how many buttons were in there but I guessed maybe 10,000. I want to sell a lot of them on Etsy, so I've been sorting through them and I finally finished last weekend. I've been putting them in little bags, 15 buttons per bag. I just counted the bags when I finished filling them, and I have 680 bags with 15 buttons per bag to sell (that's not even counting the buttons I kept!). By my math, that's just over 10,000 buttons. And that's just what I'm going to sell, that's not even including the buttons I kept for myself! That's insane. I can't imagine a universe where a person would need 10,000 buttons for any reason. I kept some of the pretty and cool ones for myself for crafts, but even so there's no way I'll use all the buttons that I kept, and I only kept a fraction of what my grandma had. Absolutely crazy. My whole family is nuts. And that was just buttons, she hoards everything else too!

Anyway. Sorry for that ramble. Just had to vent about how my family is crazy. :p So how's everybody else today? I've had some crazy work stress today, so that plus the possible upcoming family stress (come on, snow) is making my guts a bit iffy. I need to go to the gym and work out hard, and then sit in the bathtub with a glass of wine and some chocolate. That should do the trick! :)
 
I've had mild diarrhea about 75% of the days for the past month. I say mild because it's only 3-4 times per day (usually) and the cramping isn't too bad. Still, the urgency has been quite significant. I've been getting up most mornings and needing to sprint to the bathroom, which is not fun. :( I've increased my cholestyramine and am still having issues. I took a little bit of Immodium yesterday, which helped some. (I could just speed walk to the bathroom this AM instead of trying to set a world record for the 100-yard-dash.) I've lost 4 lbs in the last 2 months, which isn't a huge amount, but it's not great either. I've tried so many things that I'm kind of at a loss as to what else I could do now.
 
Chickadee, that sounds awful. And 4 lbs is kind of a lot when you can't afford to lose weight to begin with - I seem to recall you recently said you're hovering near 100 lbs? At the risk of sounding like a broken record, do give some more thought to possibly trying Entocort. For what it's worth, I've been back on Entocort for 3 weeks as of today, and I'm feeling better. I had a very stressful day yesterday so I had a bit of d, but only like 2 episodes and I didn't have any other symptoms (no fatigue, no nausea, not even really any cramping). I've maintained my weight (trying not to gain, which is easier said than done on a corticosteroid!), my appetite is good, I have decent energy, I'm just generally feeling better and more human now that Entocort has kicked in. Just my experience of course and yours may vary, but given the horrible d and weight loss, it really sounds like you need *something*!

I know there were pros and cons, and I believe the cons were related to your bleeding disorder? It might be time to re-weigh those pros and cons, though. Entocort can help heal the gut and it can help you gain weight (both because the gut is healing and can absorb more calories, and because it gives you a decent appetite). So potentially it could curb the d and help you re-gain some weight and just feel better. I don't remember if I mentioned this yet, but there's a generic version available now too - there apparently wasn't a generic 3 years ago when I was on name-brand Entocort, but now I'm on generic Budesonide and it's significantly cheaper. Anyway, I'm rambling. Long story short, it's done me a lot of good and I hate to hear of you suffering like this. I hope you can figure something out to get things under control! Big hugs.
 
Hi all!! I'm an undiagnosed case of I believe CD. This has been going on for approx 30 years!! Went to to ER when I was aprox 10yo with severe abdominal pain.... Checked me out for appendicitis and let me go! I remember not being able to eat drink or having a bowel movement for about 2 weeks!! Suffered for years w/mostly constipation as a child and bouts of abdominal pain! About 10years after that I found myself in the ER again with severe abdominal pain!! ER doc diagnosed me with severe constipation/gastroenteritis. Saw my GP who placed me on pericolace and stool softeners. Went with that for a few years then bam! Had the worse abdominal pain/vomiting....work up all done etc.... Ended up in the OR with peritonitis......removed about 12 in of small bowel and 6 in of colon to untangle both from a huge ball of scar tissue!! Pathology came back with ileitis and a yersinia infection! Crohns suspected but no definate diagnosis. Three months later after that major I developed a small bowel obstruction with perforation! Again emergency surgery was performed and a temporary ileostomy was done. @ that time the surgeon who performed the surgery was quite sure that I had CD so I was referred to a gastroenterologist who said he wasn't convinced I had CD and basically told me that I didn't need to see him again! Six months later I had the ileostomy reversed. Also suffered severe joint pain.
A few years pass and if course I have chronic constipation/and a few bouts of diarrhea. And thn it happens again!!! A small bowel obstruction.... And pathology doesn't really confirm anything!!! It's inconclusive so I go about my life again hoping it doesn't happen again!! So year b4 last again I have a small bowel obstruction buy was able to get by with bowel rest and rehydration. Another year goes by...... 2013 spring again I have a bowel obstruction and this time I need surgery again!!! Ugh! This time they find 2 large square stones obstructing the small intestine and conclude that it's from debris not passing thru and calcifying. So I go on with my life once more and now I have a GI bleed passing with my stool! So, I have a consult with a surgeon and gastro and they decide to do an abdominal CT which showed nothing and a colonoscopy! Low and behold the source of bleeding is from ulcers on the terminal ileum!! So they decide to inject epi to stop the bleeding which worked but no biopsy was taken!!! I ask if this could be CD and the answer was I doubt it....they think it's caused by NSAIDs! Really????? I'm so frustrated and confused!! I'd appreciate any input anyone may have!!!:ybatty:
 
You poor thing! What a mess. Overuse of NSAIDS CAN trigger an IBD, but they are not even giving you a dx. Too much! Please tell us that you cut gluten out of your diet long ago. It sounds like you have so much intestinal damage that they can't tell what is going on. I can't believe they didn't take biopsies to determine CD, Crohns, or microscopic colitis ( which can ONLY be dx with biopsies).

I am a huge proponent of elimination diet to determine what you are reacting to and cutting those foods out of your diet… at least until there is significant healing. Because this has been going on for so many years, it could take a very long time to heal. You might need a dose of corticosteriods to calm things down while you change your diet. Any fiber can be very hard to digest and dairy should be out for now. What you eat can make a HUGE difference in how you feel and how quickly you heal.

There is a lab called Enterolab that you can send a stool sample to that will test for food intolerances. Google them. It is the most accurate for the most common offenders.

Good luck
leah
 
The thing is I don't really use NSAIDS all that much!! I told the surgeon that but he insisted the ulcers were from NSAIDS!!! And yes I have recently cut gluten out of my diet!!! But not milk.... Weird because diarrhea has not really been a factor for me!!! Chronic constipation is what I have suffered from my entire life!!!
 
chuckmya-- How crazy that you have not been able to get a diagnosis even with multiple bowel obstructions and even removal of part of your intestines! Besides the suffering that you are experiencing, the really awful thing is that some of this damage may have been able to have been prevented if you had been on maintenance medications for IBD. (If you don't have Crohn's, you certainly have some other type of strange, inflammatory thing going on.) Have you been to any of the "top" hospitals? Because your case is a bit unusual (with constipation and bowel obstruction as opposed to diarrhea), you might need to see doctors who are better than average.
 
Thanks for the suggestion, Cat! I'm glad you're doing so well on Entocort. The reason it might not be a great idea for me is because I'm right on the brink of osteoporosis (severe osteopenia when my bone density was measured last spring), and all steroids negatively affect bone mass. Still, I'm going to talk to my rheumatologist about it when I see her in a couple of months (since she's the one managing the osteoporosis). If she gives the green light, I'll bring it up with the GI.
 
chuckmya-- I had another thought. Have you ever heard of Hirschsprung's disease? It's something that is congenital and involves the nerves of the colon not working. It's usually diagnosed pretty early in life so you probably don't have that, but I wonder if there's anything that's similar to that?
 
Note to self: Never eat morningstar "meat" fake vegitarian taco "meat" ever again. Sweet toliet paper batman! Thank Goddess for wipes!
 
I have been to Lahey Clinic in Boston with one of my obstructions..... But all of the test results were negative or inconclusive! But have just continued with my GP who is awesome! The gastro @ Lahey Clinic did not feel that I needed to follow up with them....so they kind of dismissed me. I'm wondering if I have some sort of atypical case? Truly appreciate your imput!!!!
 
Cindy, thank you so much for all your support. It's almost like having a second mum you can talk to! It's amazing for me to have people who understand! Not to mention everyone else too! Given me so much support which is strange to me as i've never had it! I was really struggling with having it all trapped in me before with noone else who understood.

Chuckmya, i'm so sorry you've had such a struggle with it all.

Well i've had a bad few days, capsule endoscopy was a bit of a struggle but we got through. However now the codeine doesn't want to kick in for me so struggling with pain and d again. Work have been getting very arsey with me now and have to go for a meeting with HR on Wednesday, not good... get the feeling this may not end well.
Now been referred to see a cardiologist about my heart as my GP is stressing im too young for my heart to be beating so fast. All i need, more stress! I would really like a day off from stress, family and life!
Hope everyone else is well, Rose :)
 
Rose, I'm glad to hear you made it through the endoscopy. I wish your pain would just go away or at least get a little better. That work stuff just adds to your stress and you sure don't need that right now..... all the best of my hopes for you with your meeting next week. Try to take some time to relax and do some deep breathing. It really can help calm your nerves and make you feel better.

Cat - I'd happily adopt you all! I think everyone deserves someone supportive and loving in his or her life, and I've been lucky to have that in mine, so I want to pay it forward whenever I can.

My own belly has been pretty bad- the last couple evenings as soon as I start to eat, my RUQ starts to hurt so bad I have to stop. Last night it kept waking me up, and this morning I was only able to do about 15 minutes on my ellliptical before I just couldn't take it. I think my hubs is more frustrated than I am. It's going to be a long month til I go to Mayo, but I just keep telling myself it's scheduled, it's coming!
 
Hi Chuckmya, welcome to our little club. I'm flabbergasted that you've had multiple surgeries including ileostomy, you've had scar tissue and obstructions, but they still claim to not know what's wrong with you! Oh, and yes, it's not as common but you can definitely have constipation with Crohn's. Many people assume Crohn's means chronic diarrhea, but some people go back and forth between c and d, some have chronic c, some people just have pain but no change in bowel habits. We're all different. There really is no "textbook" case of Crohn's, which is one of the reasons why it's sometimes very difficult to diagnose. Still, with your history, it sounds pretty clear to me. It's obviously not IBS, and I doubt NSAIDs would cause that kind of scar tissue and repeat obstructions, etc. So where are you at now on the road to diagnosis - can you get a second opinion from different (better) doctors?

Melibean, I hear you on bad dietary choices. My hubby made this baked potato casserole dish for dinner last night. He decided to add broccoli to it, and he knows broccoli stems cause me trouble because they're so fibrous. So what did he do? Rather than remove the stems from the dish altogether... he cut them up into smaller pieces because he thought it'd somehow be easier on me. Nope, that just made it harder for me to pick them out! Ugh! I know he tries, but he doesn't always think things through. :p

Chickadee, sorry, my memory is not great, thanks for reminding me that the osteopenia was the reason for Entocort being somewhat risky for you. I seem to recall that you have chronic fatigue as well? Corticosteroids give me anywhere from normal human energy (Entocort) to manic insane up all night cleaning my whole house wonderwoman kind of energy (prednisone!). So possibly Entocort could help along those lines as well - and if you do find that you have enough energy to exercise, it could help with the bone issues somewhat. I believe I've exercised every single day this week and I don't feel tired thanks to the extra Entocort energy (let's see, Sunday was weights, Monday ice skating, Tuesday weights, Wednesday yoga, today I'll do weights, tomorrow probably cardio on the exercise bike, Saturday will be weights...). Obviously I don't have chronic fatigue syndrome so I'm not sure how corticosteroids would affect that, but it may be possible that you could counteract some of the effects of Entocort if you find you are able to do a bit of weight-bearing exercise.

Rose, I'm glad to hear things went okay with the capsule endoscopy - when do you get the results? I know it usually takes a few weeks, I think for my results it took about 3 weeks. Good luck with the heart tests, I hope everything is okay with your heart!

Cindy, that's so frustrating that you seem to continually be getting worse. :( I hope the wait to go to Mayo goes by quickly. Am I remembering right, did you say something like, you'll be at Mayo for several days so they can run a bunch of tests? If so, that sounds very thorough and promising, and I hope it's worthwhile.

Has anyone heard from lsgs lately? I wonder how her LDN saga is going and if she was able to continue getting her medication. Usually no news on the forum tends to be good news - when people are feeling crappy, they come to the forum to comiserate, and when they're feeling okay they tend to go back to their normal lives and aren't on the forum much. And that's fine, but it makes me wonder how people are when they disappear for a bit. lsgs, give us an update if/when you see this! Curious to know how you're doing and what's been going on!
 
Thanks everyone for taking the time to read my rant. I thought I was making a good choice because it wasn't meat it was somrthing different. I will have to check to see wht that was made of and make sure not to eat it again.
 
Thanks Cat!! I'm seeing my GP in a couple of weeks to talk about where to go from here!!!! I realize that I may be an atypical case BUT there's got to be some diagnoses here!!! Wouldn't you think??? The thing is I never really got to sit and talk to the gastro that did my colonoscopy..... I think sitting down with him to discuss my long history and possible treatment plan is in order!!! I only met him for 5 min prior to the colonoscopy so there was not much discussion involved. We were @ the time trying to figure out what the source of bleeding was and to stop it!! I saw him for a few minutes after the procedure but I was really loopy from the anesthesia so I really wasn't in a good frame of mind to discuss anything! So I guess my next step is to have a consultation with him!!!
 
Cat, been told results will take 4-8 weeks and then i have to wait for an appointment with the consultant to recieve the results... i've waited up to 3 months after test results came back for one before! Hopefully it will be quick - my fingers are firmly crossed!!

Hopefully one day we will all get answers we deserve! I think if i get the 'severe IBS' line this time i will scream in the doctors face!!
 
Melibean-- Most "fake meat" products have soy. I don't do well with soy, and in fact, test allergic to it. There's a chance that could be the issue.
 

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