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Cat.. I am not surprised you feel stressed and frustrated about this. I think personally, its unfair of him to tell you to get off the fence with what you are already dealing with. You are in a flare..and you are currently the bread winner. So now is clearly not the time to put you on the spot with this.

Perhaps though (and im not taking his side) he has wanted to talk about this for a long time? And maybe he is internally stressed with not having the work and watching you being so unwell. Having kids is a touchy subject for most people. I have always known that I wanted a family. That was my only goal in life.However.. I had a horrible pregnancy (as you know) and now I dread ever being pregnant again (though I know I'll do it.. because my daughter is so worth it).
Maybe you could approach this subject again yourself.. so its not the elephant in the room. Explain again, your reasons for not wanting a kid right now.. but that its not "off the table" and when those reservations are sorted (his job and your health) you can discuss it again?
I think you just need to be open, and he needs to understand.. you love him, you understand his desire to have kids.. you dont want him constantly thinking "she doesnt want kids.. I cant talk about it, in case I upset her or make her ill" and then it snowballs in his mind until he blows - like he just did.

I really hope you are both able to resolve it.. sometimes a good blow out of frustrations is a good thing to clear the air.

:hug: hugs to you cat xxx
 
Cat, I find myself being really frustrated for you. For your husband to expect you to take on the burden of carrying a baby with your health situation and financial situation is inexcusable. BAsically, unless he is willing to step up andnd find a job where he can support the family he has no right to ask you to take on a pregnancy. Perhaps he should have thought about that when he made the choice to stay on a career path that doesn't provide him with viable work. Especially knowing that you most likely can't carry a baby without going through agony and likely missing work, he needs to show he's willing to do his part by getting a job to support you and provide insurance. BEcause of my back issues and many other health problems, it turns out I'm lucky that I had my kids in my teens because I certainly couldn't carry a baby to term now. My husband understands this. AFter my brain tumor was removed he told me he wasn't owrried that I couldn't do much for his birthday coming up, because he was grateful just to have me here. Perhaps your husband needs to get some perspective on what he has in his life adn just how much it is worth to him.
 
Bluebird - I hate the feeling hot thing. I get that a lot. My body cannot tolerate heat in the slightest... its frustrating. Because my face sweats!! And I get so self conscious.. im naturally very fair - and I never used to sweat like this before my bowels started causing much more problems.

I can just sit there at home.. fanning myself because im roasting. . And everyone looks at me like " whats up with you? Its not hot!"
 
Hi Cat! So my prep is baisically taking a Dulcolax laxative and then drinking Miralax mixsed with Gatorade (not red). Then I hae to take some Magnesium Citrate the day of theexam.
Not so much looking forward to that fun part! :D
 
bozzylozzy said:
Bluebird - I hate the feeling hot thing. I get that a lot. My body cannot tolerate heat in the slightest... its frustrating. Because my face sweats!! And I get so self conscious.. im naturally very fair - and I never used to sweat like this before my bowels started causing much more problems.

I can just sit there at home.. fanning myself because im roasting. . And everyone looks at me like " whats up with you? Its not hot!"
Click to expand...

Yeah I was tossing and turning all night, then my husband was trying to cuddle whilst he was a sleep which is cute but not when you're boiling LOL like get the #@*& off me hahaha
 
Haha! I get like that with my hubby.. we bought a superking bed (6ft wide) last year. BEST. PURCHASE. EVER.
I can lay arms and legs stretched without having to touch him Haha! (I do love him)
 
Thanks guys for the support, I appreciate it so much. Yeah, me and the hubby are okay, we'll get through this. I have a hard time in social situations and it sometimes takes me a long time to process really difficult conversations like that one - the conversation was over a week ago and I've just been thinking about it ever since. I feel really awkward asserting myself and my needs in conversation, it's easier to cave and let the other person have what they want so that I can just end the conversation. :p But I know that this is something I can't cave on, because it can potentially affect my life & health in numerous ways, and I just can't go blindly into a situation which could cause me harm and homelessness.

I think part of hubby's problem is that his best friend M's 19 year old step-daughter is pregnant - so M is going to be a grandfather very soon. Nevermind that M's ex-wife was 13 (yes, 13) when she had her daughter, so it's 2 generations of teen mom happening and that's the only reason that the M is becoming a grandfather so young (he's like 37 and his ex-wife is my age, 33). (I should also note, even though it's his step-daughter, she's closer to him than she is with her own mother or bio father, so M considers her a daughter and he considers her unborn child to be his grandchild - when M left his wife recently, his step-daughter went to live with him, instead of staying with her mean/crazy mother.) So anyway, hubby is feeling like he missed the boat on having kids as his friend not only has kids but now a grandchild on the way too - hubby feels like he's so old because of this. I think that's what caused this whole issue in the first place. He's panicking, he's said that even if we do have a kid now, that he'll be 50 when the kid starts high school and that's just so old. He's said he wishes he had a time machine so he could go back and have kids when he was not so old. Ugh and sheesh.

My opinion is, I don't feel like we're too old or missed the boat. I have multiple friends who are my age or even a little older who are just having kids now. A friend from work had her first kid at 33 and her second at 35, and another friend is 34 and just had her second baby. I don't see a need to rush rush rush right now - if I could get back into remission, and if hubby could get any type of job at all where he makes more than minimum wage and works more than 8 hours a week, that'd be lovely, and then I think I'd feel more open to considering the idea. But right now I'm basically in "just get through this" mode and he's not helping at all, you know? I'm doing everything I can to control this flare (I haven't passed blood in like 2.5 weeks now, yay) plus I'm working full-time and I still have to take care of stuff around the house, run errands, and do all that other crap that life requires of me. The thought of having a kid while flaring and working full time? I get exhausted just thinking of it. Financial implications aside, a kid would cost so much money - and that's true even if the kid is healthy. If I had a kid who was sick like me, or disabled in some way or Autistic or whatever, that would cost boatloads more for a lifetime of care. And that is the stuff that really scares me. It's all terrifying to think about. And like with social situations, I go to my coping mechanism - it's an easier out to not have kids, than it is to even consider the negative consequences that could happen by having a kid.

I'm really rambling again but I hope that all made sense. It helps me a lot to just get it out there into words. I'm so bad at talking about this stuff but I can at least write it somewhat coherently and that helps me make sense of it all. Thanks you guys for reading and for being there and for your input, it really helps a lot. :)
 
You are right.. neither of you have missed the boat. My hubby was 30 when little one was born. And she was a "surprise" haha. My mum had my little sister when she was 43 .. my sis is 8 now. Plus my mum had a sterilisation after I was born.. and had it reversed 7yrs later haha!

I think it is much more common now for people to become parents in their 30's as opposed to 20's now

And wow.. 13 huh? I was still playing barbies at that age and wasnt interested in boys in the slightest haha

I forgot to update you all on my follow up GP and rheumy appointments.
GP let me talk through the whole experience blah blah.. then precribed anti depressants.
Then rheumy appointment (new rheumy) said he'll see me in a year :ybatty:
He's right in a way.. the sulfasalazine is helping loads with my joints. And he told me to take 1, 3 times a day.. instead of 2 in the morning and 1 at night. That way it was less of an impact on my bowels. Which I think could be helping - but jury's still out on that one..
This new rheumy says I shouldnt see another GI until I see how this med change goes.. because (this is what he said) "if you did have IBD.. then it would work on your bowels too"
He also confirmed my B12 deficiency is not caused by my meds.. and I would need the injections for life. JOY. (When my GP said it was caused by my meds) haha..

Anywho.. lets see how I go with the meds. I would like to come off the propranolol too at some point.
 
Hi bozzy! Slowly healing up. I'm having an EEG today because they think that I am having some sensory seizures from the surgery and the residual blood. it makes my fingers numb on my right hand and causes some numbness in my mouth on the right side and slurs my speech a little bit. My other healing does seem to be doing well, got my staples out Thursday and my scar looks pretty good. I thought for awhile that my eating issues were gettting better but when I tried to eat what I wanted things flared up again. So Im hoping that wehn I have my colonoscopy next FRiday they find something! :)
 
useless waste of time GI appt. He agreed to get me a ct-scan, but he won't do any other kind of test. He only agreed because I lost it on him. He told me that it's not all in my head, it's probably what they call functional bowel disease. There's nothing he do to help me feel better. I should pursue alternative treatments and go to psychotherapy a minimum of once a week specifically for this GI problem. When pressed for a diagnosis he said intractable nausea and vomiting. He ended up giving me a number for a second opinion, but he clearly thinks it's a waste of time. He told me that at some point I will need to accept that they're not going to find anything else, that there's no cure, no treatment, and I need to learn to live with it.

I lost it.. I cried and cried and cried. I'm still crying.

oh yeah.. he told me to meditate more and use more cinnamon, ginger, and something else.. I'm not thinking very clearly.
 
Oh Carrie, I'm so sorry hun. :( That sounds like an awful appointment and I would be crying too if it were me. Really, meditation and cinnamon, and psychotherapy!?? Ugh. I believe I've heard that "functional bowel disease" is just another term for IBS. Wow, that doctor sounds like a piece of work. It sure does not sound like IBS to me and I can't believe anyone still tries to get away with saying it's all in your head/you're crazy. That's just wrong, I'm so sorry hun.

Did you at least get paid today? Some good news in that regard I hope? And I'm hoping the bad appointment today just means that you get to go to Cleveland Clinic and see a (hopefully) much better GI? Hopefully there's a silver lining to this crappy day.

Ugh, that just makes me so mad! Don't get me wrong, I'm all for mindfulness, I sort of get meditate-y when I work out - I focus very hard on my body and what's going on inside of it and how can I strengthen it and make it work better. But sheesh, I certainly don't think anyone can cure themself or get into remission with exercise or meditation - I couldn't even keep myself in remission and I was working out every day for awhile there (plus I was on Asacol/Delzicol - so the combo of meds and exercise didn't do it either). Ack, I'm so mad on your behalf! Any doctor with half a brain wouldn't have said any of that BS to a patient!

Sending you a big hug. I wish I could say something to make it better. :(
 
I had my dates off.. I should be paid at midnight/wednesday morning. I managed to get into my adp account and it looks like a check was cut so I should be paid.

I meditate. I use alternative treatments. he was totally blowing me off.
 
Rome II IBS criteria do not have two out of three. it's never relieved with defectation. It only sometimes occurs with a change in stool frequency. stool form varies regardless of how I feel.

"The Rome II diagnostic criteria for IBS include at least 12 weeks or more, which need not be consecutive, in the preceding 12 months of abdominal discomfort or pain that has two out of three features: (1) Relieved with defecation and /or (2) Onset associated with a change in frequency of stool; and/or (3) Onset associated with a change in form (appearance) of stool. Supportive symptoms of IBS include (a greater than 25% occurrence of) (I) Fewer than three bowel movements per week (II) More than three bowel movements per day (III) Hard or lumpy stools (IV) Loose (mushy) or watery stools (V) Straining during a bowel movement (VI) Urgency (VII) Feeling of incomplete bowel movement (VIII) Passing mucous during a bowel movement (IX) Abdominal fullness, bloating or swelling. (1)"

I also have three of the red flag symptoms listed on this page: http://en.wikipedia.org/wiki/Rome_process
 
I am literally so annoyed. I just got back from my GP and I caught a quick look at the letter my GI sent. 'There is no bleeding or mucus' - I've been bleeding for 5 years?! How am I supposed to get diagnosed and get proper treatment when the doctors won't even LISTEN to what I'm saying? Disgusted right now.

Also, even though I've been hospitalised twice and told my condition was life threatening, the GI is saying my condition is not serious enough to treat. Honestly. The mind boggles.
 
Isgs, I understand your frustration. the first doctor I saw for my brain tumor said in the report he wrote that I did not hae a seizure and might have just "assumed" it or passed out. He also said that I wasnt having headaches, which I was. I'm glad I got a second opinion about it since it resulted in saving my life. My Gi now says that I have some symptoms of Crohn's but a lot of stuff doesn't match so hes' not sure I have it, even though I was previously diagnosed with it. Just goes to show not all doctors know everything or agree wit heach other.
 
Wow, that's awful that you guys had incorrect information put in your files! I guess I am lucky in that regard, my GI did put "IBS" in my file (he feels I have IBS and IBD together, I disagree) but other than that all my info is correct to the best of my knowledge. I like emailing my doctors for this reason - I save a copy, so that I have everything in writing. That way if something gets screwed up later, I can whip out the email and show them.

Carrie, I have red flag symptoms too - I have had 3 of the red flag symptoms also (unintentional weight loss, waking up to run to the bathroom with diarrhea, and blood in the stool - the blood is relatively new, it only started in May of this year). I also get chills in a flare although I never seem to actually have a fever. I'm thinking I read somewhere that dehydration is another red flag symptom, and I have had that one frequently as well. It seems like so many doctors just outright ignore the Rome diagnostic criteria and will lazily slap an IBS label onto anyone with gastro symptoms though, and that sucks. It seems clear to me that many, many people are erroneously diagnosed with IBS when they have something inflammatory/more serious going on. It's frustrating that that happens so regularly and that we have to fight so hard for real answers if we (rightly) don't accept the IBS diagnosis.
 
I "spoke" (we email) to my GP this morning.

My blood counts are getting weirder so I have to go in today to have my iron checked. I told him I want to go off all of my daily medications. I told him my GI doctor seems done with me and I'm looking for a new one. I'm still pretty annoyed from yesterday.
 
Hokay... whew long week so far! I love this forum. Thank you all for posting, answers so many questions. I feel like I know you all already with so many commonalities.

I made that Dr. Apt. My gp ran a cbc and occult sample and referred me to a GI. I couldn't help but think why did I wait so long, coping, dealing, ignoring this?!... it made me feel silly and probably made my dr. Think I'm a nut for not stressing how bad my intestinal issues are the first time I saw her.

Cat - Thank you for welcoming me :) I have to say that I do have insurance now, I just didn't when I was 21, which led to the infected gullbladder.

My results are back on cbc and occult... both normal. Not surprised on that one, I have had back problems once so bad I couldn't walk for two weeks and you could see the inflamation and all my test came back normal(except xray showed arthritus) My gp is still sending me to GI *crosses fingers* That they figure this out. Having control over my body again would be nice :)

Thank you again.
 
Actually, your doctor probably wasn't too surprised. People don't like to talk about certain topics if they can avoid it. How long you live with it before you realize you have to do something is different for everyone.

The other thing is that most people will unintentionally downplay your concerns. Oh it's just the runs, eat this/do this and it'll get better. So it leaves people in a situation where they continually question the severity of their problems. It makes it that much harder if your doctor does it to you. If you've had that experience before you might even be more unwilling to broach the subject.
 
Hi again Pantaloons! I'm glad you do have insurance now, and I hope you can be seen by a GI very soon. Yeah, I think we all tend to underplay our symptoms, even to ourselves - I'm not sure why that is. I've said things like this to myself so frequently in the past, "I have awful symptoms and I feel like I might be slowly dying... then again I can still work, so maybe it's not so bad?" :p Try not to underplay your symptoms if you can help it, let your doctor know exactly what is going on when you see the GI. And tell them ALL the symptoms you have, even if some things don't seem related to your digestive system. If you do have something like Crohn's, it can cause all sorts of "extra-intestinal" symptoms as well, so if you have skin issues, eye pain, joint pain/arthritis, migraines, etc, let the GI know about all that too. Good luck with the GI and keep us posted!

How's everyone else? I'm feeling okay today. The guts are more or less behaving themselves, the arthritis is being quiet-ish, my back pain is pretty much gone, and my shoulder pain is a lot better. I no longer feel sharp stabbing pain whenever I move my left arm, so that's a definite improvement! :p It's just started pouring rain here. In a bit I'm going to go curl up on the couch with a nice cup of chamomile tea and my crocheting, and I think I'll turn on the fireplace and watch a movie. It's a good evening for relaxing! :)
 
*Cat-- Unfortunately, I can't really exercise right now, and I know that's one of the reasons for the bone loss (super-close to osteoporosis at 35). However, I'm going to see a PT in a couple of weeks, and I'm hoping that we'll be able to come up with something that I CAN do, even if it's really simple and gentle, to start to build up my bones and muscles. Right now, even if I just walk around the block, I end up feeling so sick that I'm then in bed for a number of days. So...we'll have to start really slowly. I think I might be able to do better with light resistance or weight training, as opposed to aerobic exercise.

*Carrie, Isgs and Cindy-- When I have requested copies of my medical files or have gotten copies of letters/reports sent from one doctor to another, I have found a frightening number of flat-out errors, not even taking into account things with which I disagree. I'm now making it a point to ask for copies of things more regularly so that I can correct errors as quickly as possible. Some have been pretty significant. I think that a lot of doctors are not good listeners.

*Carrie-- I'm really sorry about your experience with the GI. I know how depressing it can be to hear that type of dismissal. :( I'm glad you're looking for a new one. I also tend to get the "IBS" label, and I also have 4 of the "red flag" symptoms:
-Pain that awakens/interferes with sleep
-Diarrhea that awakens/interferes with sleep
-Blood in the stool
-Weight loss (lost 35 lbs when I first got sick...though slowly gaining some back)

I don't know what I DO have, but I don't think it's IBS. I hope we all find the answers we need and treatments that help us feel better.
 
yeah, I haven't had blood in my stool as far as I can tell. I don't know if the dr did a fecal occult blood test. I didn't find any results for one when I was looking at my test results earlier. So far my regular doctor seems to be very involved in my current issues. He has not once tried to invalidate any of my concerns during this current issue. In the past he would explain and give me information to read over if necessary. I was really getting ready to leave him, but he's stepped up to the plate recently.

I'm still trying to get in touch with the new GI department. I had the hardest time trying to make appointments today!

In good news.. I've eaten more today than I have cumulatively over the last 3 days, if not longer. It's really painful. It makes me nausea act back up, and I start sweating. But basically the minute I swallow my first bite my entire digestive tract starts cramping/spasming/tightening up. That lasts a few hours from what I can determine so far. This will be my third time digesting something substantial. late last night I managed two eggs. This afternoon I managed another three eggs. I just now had some soup and bread. The eggs hurt way worse than the soup and bread, but I don't want to end up getting an iron shot. I heard they hurt like mad! I don't like needles. I'm becoming way more numb to having my blood drawn than I would have ever thought possible, but injections still freak me out a bit. unless they go into an already placed IV. weird right?

Anyway.. we'll see how this goes. I really need to get into a state where I can head back to work. I'm not a financial wizard. I have pretty bad shopping urges when my moods are swinging. I don't have a savings to fall back on. My boss keeps telling me not to worry about it. I think he's crazy. He obviously has better financials than I do ;) I spoke to my mom today though, and she might be able to lend me a mortgage payment if I need it. We're also going to cancel our January cruise :( :( which is basically a mortgage payment when we get the money back. Although I'm stressed about it, I'm actually less stressed about the money than I am when I'm working and feeling good. I had to give up most of that stress when I went on medical leave. So as long as the mortgage is paid we're good, I'm good.

Chickadee, I've been thinking that I have to get copies of my medical records from the former GI doctor. I hope that's not too difficult. Some doctors are very pissy about it.
 
Hey cat
Sounds like stress u don't need :/ kids are scary lol!! Plus would your body be ready for it?
Potassium was 2 something and keep having a really bad fever so keep sweating more so prob gone down more :/ I don't seem to get cramps just heart palpitations and the shakes which my doctor said could be muscle related tremor. I've no idea what they are starting me on but they mentioned azothyaprine and steroids.
Hopefully the end of this flare is soon :/
Xx
 
Carrie-- Oh, I know that sweaty, nauseous feeling, and it's so miserable! Have you tried anything for the nausea? Ginger capsules helps me somewhat, especially if I take them about 20 mins. before eating. Zofran works quite well, but I think it sometimes makes my stomach cramps worse. I'm only taking it when things are really bad.

Because of some other health problems that I have, I was at life-threatening levels of anemia this winter, and I had to have 8 weeks of iron IVs. It really didn't hurt. Of course, it would be better to avoid this, if possible.
 
oh you know I think I was confusing my friend's vitamin b shots with her iron drip. My brain is on a deserted island somewhere.

ginger was making me feel worse so I'm mostly lying down, meditating, sipping a drink. I've also passed from extreme nausea into extreme pain. I'm actually happier with the pain. I'm used to dealing with pain.

oh and my std was approved! yay! I sent my doctor another message this morning about how I'm feeling. The GI dept told me they couldn't get me in until September!! so yeah... don't know what to say to that.
 
I'm beyond mad right now, I wen't to my GI and basically she's doesn't know what the $@&$ I have and is sending me for a CT scan on Tuesday, if that's negative then she's sending me to Washington.
She won't listen to my GP at all.
She says "maybe it's celiac or maybe a bad case of IBS" what BS "ibs" your having a laugh aren't ya? she just is pulling things out her ass because she doesn't know. I've been upset all day and now I'm just mad :(
Plus she prescribed no pain meds! So fantastic and I have to go on a none glutton diet. -___-
 
Carrie - don't give up you know your body better than they do and on average IBD patients get misdiagnosed 3 times. I beat the average I was four :/ thi kin of you and hope you feel better but I know that seems impossible right now but you will be or day and you can help people one day just like you xxxx
 
Chickadee, for what it's worth, I do better with yoga & weights than I do with cardio - and it's not for lack of trying. I've never been a fan of cardio, but I know I need to do it. I can't jog though, the arthritis hurts way too much when I try, and as of this flare I can no longer ride my bike, and lately I'm having trouble even doing the stationary bike, and walking has also been more of an issue lately. So cardio has been a real pain lately, pun intended. But I can do yoga and weights with relative ease and no pain, so hopefully you're similar and can do some light weights or gentle yoga or something like that. Good luck with PT, I hope you can figure out some ways that you can exercise without too much issue!

Carrie, I'm glad the short-term disability was approved! That's got to be a big relief. I can't believe you can't get in to see the GI until September though! Is this with a new GI? Can your GP do anything in the meantime or can you get on the cancellation list for the GI? Maybe if you called them and explained the situation, possibly they could get you in sooner? I know that in a "typical" situation it takes about 3 months for me to get a GI appt, but if he knows I'm flaring/suffering then he'll work some magic to get me in much sooner if need be. And I've found that crying on the phone also works to get me in sooner. Just a few thoughts for you, because it sounds to me like it will be torture if you have to wait it out until September!

Bluebird, it sounds like your doc is giving up on you, but at least she's willing to refer you to (hopefully) a better doc. I hope the gluten-free diet goes well and I wish you luck with the CT scan too! Have you had a CT yet? I found it to be one of the easier tests I've had, you probably will have to drink some contrast beforehand, but it's not too bad. Not nearly as foul as drinking colonscopy prep, I promise! :) I had to drink contrast mixed with lemonade, and it mostly just tasted like lemonade. Like vaguely chemical-y tasting lemonade, but not awful at all. I will say though, the contrast went right through me and I nearly didn't make it home, so be careful about that! Make sure to get straight home after the scan, or at the very least make sure you are near a bathroom. Good luck!

Gabi, steroids and aza sounds like a good combo - steroids are fast-acting and should get the inflammation under control pretty quickly, and the aza is more of a long-term med and it should hopefully keep things under control once you're off the steroids. It does sound like your potassium is low if it's only 2.something, did they say anything as to whether they could do anything for it? Supplements or injections maybe? It sounds like things are falling into place for you, I hope you get good relief really soon. I hope your experience with steroids is similar to mine - when I first started on prednisone, my symptoms went away within the first 24 hours and I felt so fantastic! I had so much energy too, I cleaned my whole house and didn't stop smiling the whole time. :p I've read that "euphoria" can be a side effect of pred, and I definitely got that one! It made me feel like superwoman! So I hope it gives you a similar effect and that you feel just fab while on it. :)

How's everybody else? I'm okay, questioning yet again whether I'm flaring or not, because I've had a few good days in a row. I'm eating well, sleeping okay, exercising regularly. I had such bad back & shoulder pain earlier this week & last week, that my other issues temporarily took a back seat to that pain. The back is feeling fine now and the shoulder is getting back to normal, and I find that my guts are still pretty quiet and the arthritis is average but not bad. So once again I just don't know what's going on with my body! I don't trust that the good days will last, but I'm also trying to enjoy the good days when I have them. I see my GI on Wednesday, so less than a week away now, and I keep revising what questions I want to ask him. I have a whole lot of questions written down but I need to figure out which ones are the important ones.
 
Yes, it's a huge relief to have the disability approved! Even if I have to keep extending it. Extending it doesn't seem particularly difficult, they just ask my GP for another certificate. I'm actually on the cancellation list for all of the GI doctors at Cleveland Clinic in NE Ohio. So whoever and where ever they are, unless they're more than an hour away I expect I'll go to them if I'm given a chance.

I let my GP know about the September timeframe, and he said we'd talk again after I get the results of my ct enterography (scheduled for Monday) And yeah, there's no way I can be out of work until September. FMLA leave maxes out at 12 weeks.

My iron bloods came back, and my iron is low but not terrible. He's going to check it again in three months. Eating these eggs is bound to raise it back up some too. I'm glad I don't need to deal with a supplement. it's hard enough to take the meds I already have to take.

Speaking of contrast, it goes right through me as well. I'm actually sort of worried I won't be able to keep it down. *crossing fingers* I'm super lucky that my hospital is basically at the end of my street. The worst luck and worst traffic ever, and I'd still be home in like 3 minutes. It's walkable when not ridiculously sick.

I just ate zucchini. Definitely doesn't hurt as bad as eating eggs, but it still hurts and made me sweat like crazy. I'm going to try to keep my foods list pretty small for the time being, just to be on the safe side.
 
Well she want's me to go see a dietitian but they are all the way in DC, nouts ever easy is it? lol I've calmed down though before I just got so worked up because I felt like nearly everyone just didn't care, my husband even said "no point getting upset" whilst I was in tears and its like "duh I know it doesn't help but doesn't mean I don't feel frustrated" but its all good I have some things coming up to occupy me, nevermind occupy Wallstreet occupy Ali's mind!! (My real names Alison but my friends and family call me Ali, feel free to call me that too)
So I've just had one of those day where you feel like the world crashing down on you, maybe some self pity.

I've had a CT scan of my brain and back I think but never had to do drink a drink obv, I picked Vanilla smoothie, it defo looks better than my colonoscopy drink (omg I feel sick thinking about it)

I agree though she kinda has gave up on me, Her whole attitude today was terrible. Almost like "meh I can't be arsed with you" but thankfully she has said to go get a second opinion, problem if I have to wait 4 weeks for an appointment because my husband is going away with work on a ship for 3 weeks and has no time before hand.

It's not I want to have Crohns. I don't but for the love of Chris Hemsworth (Thor) I just want answers and I don't want to be fobbed off with some sort of half arsed guess.

bla bla blaaaaa nuff said lol
 
Unfortunately, most of the really high iron food is still too intense for me to eat. I'm hoping I can try to eat chicken again in a couple days. I could try some spinach next time I go shopping (tomorrow or Saturday). I've never liked liver.. of course it's the best source on the list :p maybe pumpkin seeds.
 
I'm actually learning to like liver - chicken liver anyway. It's not bad. We do a lot of poultry in the crock pot and hubby always gives me the liver when we do up a whole bird. I'm to the point where I'm thinking of looking for a package of just chicken livers - not sure how I'd prepare them, but the thought intrigues me.

Bluebird, my hubby can't stand it when I cry either. I think I've mentioned this before, but he feels like crying/sadness is "unproductive" but that anger is a "productive" emotion, so he thinks I should get angry when I'm frustrated, rather than sad. Don't ask me how anger is supposedly productive - I can't think of anything beneficial that I'd produce while angry! :p But anyway, don't listen to those people - cry as much as you need to, it's okay and it's completely normal when you're going through stuff like this. During the first year of my illness, I estimated that I cried about 6 days out of each week. It's okay - if you don't want to cry in front of your husband becuase of his comments, that's okay too. When I cry, I tend to either go into the bathroom, or I get in my car and cry, or if I'm having a bad evening/night then I'll wait till hubby's asleep and then let the tears flow.

So Bluebird, your celebrity crush is Chris Hemsworth? :) He is a nice piece of eye candy for sure, although blondes aren't really my type. For some reason I've had a bit of an Asian fetish lately, and my current celeb crush is TOP from the South Korean pop group Big Bang. He's such a beautiful man, he's so pretty it should be illegal! Look on Youtube for "Big Bang Fantastic Baby." That's the video that made me swoon for TOP (he's the one with blue hair - he looks like an anime character in that video, like somehow the blue hair made him even more unearthly gorgeous). :D Rowrrr! He's got this voice to die for, too, very deep and husky and gruff - the voice doesn't seem like it could belong to such a beautiful man, which somehow just makes him sexier. Swoon! :p

Carrie, that's good that you live right by the hospital. I live right by one of the hospitals in my city, but of course the one that my insurance covers is the farthest away of the 3 hospitals in my city. :p How long are you able to extend the STD for? If I'm remembering correctly, a former co-worker of mine had to go on STD for cancer treatment, and I think he was able to get 12 months of STD total. I'm not sure if that varies by company/situation though.

How's everybody else doing today? I'm okay - the hubby is having some gut troubles though! We went to the gym last night after I got home from work, and he seemed fine then, but when we got home from the gym, I started making dinner. He said he had no appetite and didn't eat anything. Then he had to run to the bathroom like 4 times with (presumably) diarrhea. (I didn't ask, but I didn't hear vomiting, so I presumed he had d!) I asked if he was feeling okay, and he said, "Well I thought I was" then he had to run to the bathroom again. It was an interesting bit of role reversal - him with d, me with quiet guts! He seems better today though - he's usually super healthy and can often recover from colds/viruses etc within less than a day (whereas if I get a cold, I'm sick for weeks). So, hopefully he just ate something funky earlier in the day or whatever. It was a bit weird with the roles reversed like that though! I have to say, I enjoyed being the one who didn't have diarrhea for a change. :p
 
Calm down cat.. if you were a guy, I would be telling you to get a cold shower!!! :p haha
My celeb crush is Hugh Jackman (wolverine) yummmmmmm-yyyyyyy! ;)

My guts have calmed down a lot since I stopped having naproxen (nsaid) .. I was prescribed it after my surgery.
It is so hot here and very humid.

How is everyone else getting on? X
 
I don't know that I've seen many Hugh Jackman movies. I have seen The Prestige, which was a really good movie, but admittedly I may have been drooling about Christian Bale way more than Jackman in that film. :p

Hmm, tell a supermod to go take a cold shower?? *plots to come back when Bozzy doesn't suspect it and post a bunch of pictures of TOP* (evil laugh)

(The sad part is, I'm really like that on Pinterest - most people use Pinterest for posting recipes, crafts, etc. I use it to post a zillion pictures of TOP, ha ha! Um, sorry if you follow me on Pinterest - or maybe I should say, you're welcome. :p )

Okay, for serious now. Bozzy, I'm surprised they prescribed you an NSAID with your history of tummy troubles! I think NSAIDs played a part in triggering my IBD. The summer of 2009, hubby and I went kayaking almost every weekend, and sometimes we'd be out on the water for 4, 6, even 8 hours at a time. All that paddling meant massive muscle soreness, so I was popping ibuprofens like they were candy. I even started taking them pre-emptively before paddling to try to minimize the soreness later. If I knew then what I know now about NSAIDs, I would have never touched the stuff and just dealt with the soreness. It seems too much to be coincidence that I was downing ibuprofen in summer '09 and then got sick in the fall of '09. It's my assumption that there is a correlation there. So needless to say, I'm very wary of NSAIDs now because I feel like they played a part in me getting sick!
 
you guys are making me chuckle! I have a couple of celebrity crushes. I think Ewan McGregor is super cute, especially in The Island and Moulin Rouge. I also realy like Jason STatham too. Cat, I agree with you on Christian Bale and his drool-worhiness! Hugh Jackman played the Wolverine in all the X-men movies, as well as Van Helsing and in Les Miserables.
I also had the same situation with ibuprofen last spring. lwas taking them tdaily for my back nd I think they heped to push me into a flare.

I'm doing okayk still waiting for the update on my EEG, no word yet but it's frustrating! I did some housecleaning yet and it made me quite tired which certainly shows in my typing.
 
haha!! i dont use pinterest.. hugh jackman was in all the x-men films and Australia..
but CHRISTIAN BALE!??!?! eewwwwww!

i feel really stupid for taking them.. but i didnt realise at first lol - because they just give you drugs in the hospital.. and im like "anything for the pain!!"
i know nsaids really upset your stomach.. for normal people - let alone those with a sensitive one. i always have to have omeprezole to stop the burping and nausea

besides - as fair as anyone in the medical profession over here is concerned - i have IBS.
oh well, im ok :p
 
Yes Christian Bale!! He's a fine-looking man, especially in the Batman films with his big lovely muscles. Cindy and I obviously have good taste that you don't seem to share, Bozzy. :p Now I'm gonna post pictures of TOP and Christian Bale on here. Ha ha ha!

You should join Pinterest. There are a lot of pictures of cute guys, er, um, I mean good recipes on there. Yeah. Recipes. ;)

Cindy, how long do EEG results typically take? I hope you get them soon, and that the results are good. Not long now until your scope - I hope the prep isn't too vile this time around. Good luck with it - I hope it finds something to explain your tummy issues and you don't get written off with the IBS label.

Bozzy, I know on paper you have "IBS" but you really don't want to make yourself worse! I am so anti-NSAID that I yell at healthy people for taking that stuff. :p My mom ran a marathon and then popped a couple ibuprofen and I was like, "What are you doing!??" And she was like, calm down, stop being crazy! I can't help it though. Even Tylenol (acetaminophen/paracetamol) is supposedly safe for IBD'ers to take, but I hate taking it too because I know too much can mess up the liver. All these supposedly safe over-the-counter meds really aren't all that safe at all, and most people don't even know it. I certainly didn't know it until I got sick myself.

My lips are driving me nuts! The corners of my mouth are badly cracked and it's getting painful just to open my mouth - eating and laughing in particular are becoming quite painful. I started taking B6 again in desperation, hoping it'll help my lips more this time than it did before. Yesterday I was talking to my boss and then I looked in the mirror afterwards - just the act of talking had flaked a bunch of skin off of my lips and I looked really gross. But I had a meeting with my boss today and I explained that my health is tenuous at this point and that I'm having new weird symptoms and stuff so I will have to go to more doctor appointments. She seemed really understanding, so hopefully she wasn't too grossed out about my lips sloughing skin while we were talking. :p

I hope everybody has a good, restful weekend. Big hugs to all!
 
supposedly the results came in today and have been faxed to the surgeon. I should hear something Monday, I'm hoping. I'm a little sad about my scope timing because there is a neigborhood block part the night of the sixth and that's the night of my prep! boo. so Iwon't be able to eat, but at least I'll be able ot hopefully meet m neighbors (hoping the diarrhea part will mostly be done when we are supposed to get together).
Cat, I'm so sorry abou tthe lips! I hope the B6 does more for you this time and the docs have some answers for you.

I thoght of another cutie - I think Joseph Gordon-leavitt is pretty hot too. :D
 
Ooh yeah, JGL is a cutie pie for sure! You have good taste, Cindy. :)

Okay, so on the subject of cute boys, here's that video I was talking about earlier. Skip to 1:10 if you want to see TOP in all his blue-haired beauty. (It's a fun song though so also feel free to listen to the whole thing - if you do watch the whole thing, a couple of the other guys in the group are shirtless a bit later in the video, and they're both quite muscley and handsome.)
https://www.youtube.com/watch?v=AAbokV76tkU
If you wish to drool over pretty pictures, here's my Pinterest board dedicated mostly to TOP:
http://pinterest.com/capyboppy1/gorgeous/
You're welcome. :D I'm glad I can share my fantasy boyfriend, ha ha. :p

Oh goodness, a block party on prep night! That sounds dangerous, I would wear a pad or something if I was going to be any more than like 20 feet from the bathroom! Good luck with it, I hope it goes okay.
 
mccindy said:
you guys are making me chuckle! I have a couple of celebrity crushes. I think Ewan McGregor is super cute, especially in The Island and Moulin Rouge. I also realy like Jason STatham too. Cat, I agree with you on Christian Bale and his drool-worhiness! Hugh Jackman played the Wolverine in all the X-men movies, as well as Van Helsing and in Les Miserables.
I also had the same situation with ibuprofen last spring. lwas taking them tdaily for my back nd I think they heped to push me into a flare.

I'm doing okayk still waiting for the update on my EEG, no word yet but it's frustrating! I did some housecleaning yet and it made me quite tired which certainly shows in my typing.
Click to expand...

Good call on Ewan and Christian Bale. I've had crushes on both of them since the mid-90s . . . *swoon*

I've got my follow up appointment later this month - they wanted to give it a few weeks to see if diet changes helped - and so far they seem to be.

I have been following SCD paleo since the day after my scopes . . . tried some gluten after two weeks clean, just to see, and my digestive symptoms immediately returned . . . but got better quickly as I started avoiding it again immediately after. I may have been negative for celiac, but clearly there's some sort of gluten intolerance involved in all this . . . :/
 
Cat: yes I love me some Chris Hemsworth! I love Aussie men rawrrr! I dunno if I have a type I also find Matthew Grey Gubler from Criminal Minds sexy who is totaly different haha but maybe because he looks so innocent and I want to corrupt him hahaha x

Btw today I passed my driving test!!!!! :) x
 
Nice one bluebird! It took me 3 attempts to pass mine.

Mccindy - that is rubbish how it falls with your bowel prep. However it could be a good distraction for you.

Cat - even when its mine and my husband's date night - maybe go for a meal and to the cinema. I always end up talking about my celeb crushes!! Haha! Im not being mean to him.. but we always have a good laugh and banter. He always makes me laugh about the silliest of things. He is 7yrs older than me - but we act like little kids. Its great :p

Bluebird - you mean thing.. wanting to corrupt an innocent ;) haha!!
 
Hi everyone :) Over the last week or so I have read through this entire thread! I was hoping to see Starrrgirl and Cat diagnosed by the end of it, was pleased to see sunshine and Alli getting diagnosed though! :)

For my story, I will just give the short version here and link my other threads... I have been having symptoms like extreme distention/bloating, nausea, vomiting (/reflux?), pain and constipation (although the constipation is a lot better lately, can get more into that if anyone is interested, lol)

I had not suspected crohn's until going back to my GI about a month or so ago and when I showed him the pictures of my distention and described in detail how the vomiting/reflux was happening he felt I had a narrowing in my small intestines. He never mentioned crohn's, but when doing some research when I got home I saw crohn's was the most likely cause of narrowing. I had a CT scan, and I recently got the results from my new GP (who I LOVE)- I have two small areas of intussusception in my proximal mid bowel I think it said. (where part of the bowel "telescopes" into itself). I wish now I had gotten a copy, but I was so surprised by this that I never thought to ask. This is something that is normally seen only in children, so I never dreamed I would have this. Also in children it is an emergency as it usually presents as a complete bowel obstruction.

So I am just waiting now to see my GI. My GP said he would leave the plan to him and didn't want to really speculate as he wasn't sure what he would want to do. He just wanted me to know the results :)

With all my reading it seems a huge portion of intussusception in adults is caused by tumours or growths, etc. It can also be caused by things like celiac disease or crohn's. (celiac has been ruled out with blood and biopsy both). My report said no tumours were noted, it also didn't mention anything about inflammation being noted. It is possible that this can just happen idiopathically (no known reason or cause), but since it is in two separate spots I think that would be HIGHLY unlikely. I am very eager to see my GI and wish the appointment had been sooner. Only a few more days to wait now. It also said this can be transient and go back and forth to normal, but it seems from what I read most cases require surgery.

Here are my previous threads if you want more info on the development of my illness and what testing I've had etc.

http://www.crohnsforum.com/showthread.php?t=53234
http://www.crohnsforum.com/showthread.php?t=53954

I love the support and camaraderie of this group from what I've been reading so thought it was time I joined in :) Hope everyone else is doing okay.
 
Hey Folks and Folkesses,

I am in a kinda "Holding-Pattern" with my night sweats and burning stomach pain and conjunctivitis etcetera.

Over the past few nights, I have woken up with a layer of sweat on my skin that appears to have encompassed my body from head to toe.

However, my bedlinen has not been saturated and soaked through.

Started taking the course of 400mg Acyclovir Anti-Viral Tablets this morning.

Only time is gonna eventually tell me what is the underlying cause of my weird bad health symptoms.

In the meantime, I am focusing on moving forward with my life, and shitting my son out of the house, and doing stuff like, ordering the printing of my "On-Line Garage Sale" and Dog Walking Business Cards that I have created and designed.

I refuse to leave this earth, without being a success of some kind, even if it is just in the "Teeny-Tiniest Itsy-Bitsiest Small-Smidgiest Way" !!!

Last night, I watched a repeat screening of "Jurassic Park", for about the Eleventy Trillionth Time.

Not sure why it is, but I have always found Jeff Goldblum to be really sexy and physically attractive.

However, I have never understood the logic and rationale behind my thinking that about him, becos he isnt very pretty at all !!!

But, the way he has managed to pull off some of the script lines in movies like:-

. Independence Day
. Jurassic Park
. The Fly
. etcetera ...

And has made me laugh out loud to "Me Myselves and Eyes", has to be a good thing in my book, I reckon.

Wonder if Jeff is married, and I am still in with a chance ???

Or, is he even still alive for that matter !!! (becos I might have missed that telly episode of ET (formerly and previously known as "Entertainment Tonight") due to one of my many bouts of ill-health preventing me from watching the telly for days and weeks on end ...

Praps I should do some goggling ...

Or not ... :frown: ... becos I dont know if my physical and psychological health could cope right now, with finding out that Jeff died years ago !!!

Love from Frankie xox

Pee-Eff:- I have loved reading all of your posts in here over the past month or so since I became a member, becos the number of times I have experienced "Light-Bulb Moments" aka "Epiphany's" aka "Knowledge and Directional Momentum", are too numerous to mention, so keep writing about your "Wonderfully-Weird" health defects and symptoms, becos if it wasnt for so many of you mentioning your long-term chronic night sweats, combined with a few of you discussing pregnancy pro's and con's ... then it would never have occurred to me, to go down the path of researching "Adrenal Glands Low Cortisol Hormone Levels" ... and I am just so grateful ... becos surely there must be a Doctor Specialist in the World somewhere, who would be delighted to know that so many members of this website forum have symptom commonalities, such as saturating soaking night sweats, and sudden extreme day time rises in body temperature, not to mention, long term almost constant daily stressors that cause high levels of anxiety, which, then those raised levels of anxiety, become a significant stressor in itself, thereby kinda causing a "Vicious-Cycle of Sadness and Madness", that nobody should be forced to have to suffer in silence with indefinitely.

Pee-Pee-Eff-Eff:- Think I've gotten everything off my chest, so, thanks for being my captive audience (lol) ... :hug:
 
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Hi Jessie! Intussuseptions in adults are rarely idiopathic. My cousin has Crohn's, and one of his biggest problems are intussuseptions. He has had to have them removed surgically.

Freaking night sweats! I have them really bad. I hate lying back down on soaked sheets after I go to the bathroom.

I'm a little better, I am eating. I had chicken soup last night, but I feel absolutely nasty this morning. Already started with the diarrhea. I'm also afraid I might vomit. Hopefully pills will kick in before that happens.
 
Hi Carrie! Thank you for sharing that! Was his inflammation from crohns visible on CT? Was he diagnosed because of intussusception or before? Since they couldn't see any tumours or leading points, that was a bit of a relief but I'm scared it was something smaller they couldn't see. Do you think it would be more likely that the CT would not pick up on crohn-like inflammation/ulceration etc than tumours?
 
If I remember correctly, his crohn's was found during a double-balloon endoscopy. Others will need to chime in here, but I don't think I've ever heard of someone being diagnosed with crohn's based off the CT scan. I know it can show tumors, intussusceptions, diverticulitis, and adhesions.
 
Hi guys. Rough day today for me. I'm exhausted from visiting friends in Wisconsin last night and something I ate seems to be disagreeeing iwth me. I had cramping this morning, and now I have diarrhea which is very odd for me (usually I'm constipated. Not sure how excited I am about that two days before my prep day! Resting today, jow that we're home but the traveling really seems to hav etake n it out of me. Hpign to regain some strenght. I got toldl last night about a milion times I need some fattening up! Pretty difficutl to do wit hthe weight I lost during the brain surgery, and not being able to eat much sicne! boo.
 
Hey guys having a hard day so much pain I just wana give up and too many accidents today to count. Embarrassing to say the least. Random question but has anyone got like red blood blisters on their skin and lips? They look like a pimple full of blood. Does anyone know what this is or may be?
Hope uz are all in high spirits I think of u all constantly :)
 
Gabi, a post from when? I see two in a row. I would think a mod would message you if they removed your post for some reason. And we get into some necessary tmi here so I can't imagine what you could have said :)
 
Hey Gabi, I don't see any deleted posts for you, and yes, if you had posted something not allowed (like name-calling) then a moderator would have sent you a PM explaining why your message was deleted. I'm guessing then that maybe it just didn't post right? Like if there was a temporary "burp" in your internet connection or something like that (for lack of a better word, sorry it's early and I'm not thinking clearly!), you may have hit post but it didn't work for whatever reason. But I don't see anything deleted so it wasn't anything that was done by a moderator. Either a glitch on your end or a quirk of the forum, something like that. If it happens again - this goes for everybody - let me know and I'll have it looked into. Thanks! :)
 
Hi guys. I've been browsing this forum for a few months.

I'm 23 and have had had symptoms for several years, but over the past few months have worsened to the point that I am regularly waking up in the middle of the night... I only had 4 hours sleep last night. And haven't managed to sleep today either.

I'm currently waiting for the results of a calprotectin test to see if i do have an ibd or if it is just good old ibs. I'm really terrified that it will come back positive but at the same time I am also a bit worried about it coming back negative. Is that weird?

I'm super worried about what's going to happen over the next few months.

Ahhhh.

Bye :panda:
 
Hi Thunderstorm, welcome to the forum. :) Why are you waking in the night, is it to run to the bathroom with diarrhea, or is it because of pain? Either of those can indicate IBD but are not part of IBS - so my guess would be that you've got something more than IBS going on. Calprotectin is a good start but isn't necessarily a definitive test and that alone won't get you an IBD diagnosis - have you had any other tests like colonoscopy, or any scans like CT or MRI? What about bloodwork, have they looked at things like your vitamin levels and CRP/ESR (inflammatory markers)? Have you seen a GI yet or just your GP?
 
Hi Cat-A-Tonic.

I'm waking in the night either due to severe stomach burning, pain and/or nausea. And also due to bowel pain + discomfort. Sometimes diarrhea. Today I woke due to really awful pain at 5am ish and had to rush to the bathroom, but BM was reasonably formed + has been for the 7 other times I have been today :/ just with horrible pain/discomfort.

I've had various blood work over the years due to severe fatigue, all have been normal bar the usual iron + B12 deficiency. I haven't had any blood tests for over a year though despite seeing 3 different GP's.

I saw a GI last week. I think he is just starting with the more gentle tests first - calprotectin + gallbladder scan. I'm really anxious about it all and he mentioned that he didn't think that I would tolerate a scope well and I agree with him! hah.

Thanks for the reply :)
 
Hi thunderstorm! Welcome :)
Are you having injections for the b12?
I would really push those symptoms to your doctor regarding being woken up in the night with those symptoms. Because as cat says.. IBS wont do that to you?

I like the fact your GI is starting with less invasive tests.. but the definitive way to diagnosis any bowel infections or IBD is to do a colonoscopy with plenty of biopsies :)

Have you had any other symptoms (such a bleeding)?
Hopefully you can get some answers soon :) x
 
Hi Bozzylozzy. Thanks :)
I am indeed having those horrid B12 injections. My GP says that I should have them every 3 months for the rest of my life (ugh!).

I have had red blood on and off for years which I always put down to tears or hemorrhoids, but more recently have noticed a bit of what looks like darker blood :/ Not much though, thankfully.
My weight has also fluctuated quite a lot over the years. At my worst I was just around 90lbs at 5'3.

I also get joint pain quite frequently which has been put down to CFS.

My GI is supposed to be quite good, but I was full of nausea+anxiety so did forget to mention a few things at my appointment. I'm quite tempted to email him, haha.
 
Does anyone have any idea when I can take lomotil again post barium drink? I got very very bad total liquid bm last night, and it has continued this morning. It got _really_ bad after I finished the first bottle of barium, and since then I've got like 8 times o_O

sucks

ETA: the doctor said I have to wait 24 hours before taking lomotil..
fyi for anyone else who ever wondered. I couldn't find this info online when I searched, so now it's out there :)
 
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Thanks for the info, Carrie, that's good to know. (I'm sure I didn't wait 24 hours to take Lomotil after my CT scan, I am sure I took it much sooner than that - I seem to recall that my CT was in the afternoon and I took Lomotil that evening - oops!)

Thunderstorm, have they ever done tests to confirm the source of the bleeding? Speaking as someone who's been passing some bright red blood lately (I've never been a bleeder until like May of this year), it's not always due to a fissure or a hemorrhoid. They ruled those out for me, and they also ruled out bacterial infection. I seem to bleed when I use my abdominal muscles too much, which is very odd. But anyway, my point is, don't just assume it's fissures/hemmies, because it might not be. Particularly if you're now passing some darker blood as well, that's definitely not fissure/hemmie-related.

And I'm sure you know this already, but bleeding is also not a part of IBS. The waking during the night, that definitely isn't IBS either. You said your doc wants to do less-invasive tests first, but it sounds to me like you really need a colonoscopy to see what's going on in there already! Yes, the prep sucks, but it's a necessary evil.

Speaking of prep, Cindy - is tomorrow your prep day already? Yikes, good luck! I hope you're stocked up on wipes, creams, etc and of course I hope it all goes well. I know prep is in my near future as well, I see my GI on Wednesday and I'll be asking him to schedule a scope for me. I'm already mentally preparing for it - I put a few extra books in my bathroom yesterday :p and I have a stash of flushable wipes hidden away (the hubby has been using them all up on me! The nerve!). Okay, going off on a random tangent here, but does anyone else have a little bookshelf in their bathroom? I have a few regular books and one Sudoku book (I keep a pen in there too). They are lifesavers for when I have to run to the bathroom and don't have time to go grab my kindle! :p

How's everyone else doing today? I've been a bit more fatigued the past few days. Resting more and exercising somewhat less. I'm not a fan of this latest twist - but it lends credence to the "I'm flaring" theory, so I'll go with it and will of course tell my GI when I see him in a couple days. I passed a bit more blood the other day too so clearly things still aren't right. It's definitely time for a scope. Yayyy. Not. ;)
 
Cat - yep tomorrow is the big day! I have my Kindle at the ready witha new long book loaded up so I should be able to make it through. I do have some wipes also . other than the post-prep chills, I'm hoping to make it through fairly well.
 
I got an appt with a new GI for Friday morning! yay!

that barium drink generated a ridiculous amount of gas. it won't stop popping and gurgling!
 
My bowel woke me up AGAIN last night despite taking a low dose of imodium before bed. So only had less than 5 hours sleep. Less pain but much more loose and mucusy. Ugh. I'm completely exhausted. :(

I have emailed my consultant..

I hope you are all okay.
 
Good luck Cindy! Have you started prep yet? I hope it goes really well! I hope tomorrow goes as smoothly as can be too and that you get some firm answers as to what's going on with your guts.

Thunderstorm, I hate nights like that. :( Have you heard back from your consultant yet? Does Imodium usually work okay for you? I find that it doesn't do much for me, but I have a prescription for Lomotil (basically prescription-strength Imodium) and that works a lot better. Even on a bad day, one Lomotil will usually slow/stop the d for about a full day. It's like Imodium in that you're not supposed to take it often, but for big events or if I'm going to be somewhere (like hiking or whatever) where there might not be bathrooms, I sometimes take a Lomotil so that I don't have to worry so much about bathroom stuff. It's worth asking your doctor about if Imodium isn't working so well.

How's everyone else? I'm actually having a really good day! Guts are quiet, arthritis is quiet, energy level is good, I slept wonderfully last night, and I'm just feeling basically the opposite of how I was feeling yesterday. :p I don't know how or why I lucked into having such a good day and I don't expect it to last, but I'm trying to enjoy it while it lasts. I'm sure I'll be back to feeling exhausted and crummy tomorrow, that's the way it seems to go lately, but wow - it's been a long time since I've felt this well! Makes me really miss remission!

Speaking of that, I see my GI tomorrow. Hopefully that goes well. I want a scope and the I want to switch meds and of course I want a diagnosis and then I want to get back into remission. :p I feel like a little kid writing a list to Santa - but have I been naughty or nice?? Think my GI will grant everything on my wish list? Or am I going to end up with coal in my stocking? ;)
 
Hi Cat! Prep SUCKS! lol I'm about midway.... I think.. but I will say drinking this Miralax with orange Powerade Zero is MUCH beter than the nasty gallon of GoLightly or whatever I had to drink last time
Tomorrow morning I have to get up at 430 am to drink 10 oz of Magnesium Citrate. Don't remember that one from last time but I'm not looking forward to it!
I am looking forward to having the scope done and finding out if they see anything!

I'm glad to hear you are havign a good day Cat.
I hope everyone else is having a good day too! Bozzy, Bluebird, and everyone else!
 
Cat, good luck with your appointment, hope you get everything you want!

I also have my GI appointment re: my CT (which i know from my GP showed 2 small areas of intussusception). I am so glad to finally have it, I am nervous and excited to see what he will have to say and what his plan is. I just hope things start moving faster like if he is doing further testing that I don't have to wait a month or more for it. I don't know whether to wish for no surgery or wish for surgery. I just want to be fixed, so it's not long til I hear the plan!
 
Good luck with your GI appointment, Jessie! I know what you mean, I'd just like a plan too, the details of it seem less important than just having a plan. I had a plan - I was in remission and kept myself there with Asacol. Then they stopped making Asacol in the US, and I had to switch to Delzicol. Like 2 months later, I started passing blood and feeling worse. I think I'm flaring and I think the med switch set the ball in motion. So now I'm on a med that isn't satisfactory and I'm not in remission - I need a new plan!

Cindy, I hope the prep is still going okay! I did the gatorade & Miralax prep twice, and it was easy to get down, but it dehydrated me too much both times. I hope you don't get dehydrated! Getting up at 4:30, yuck!! Good thing you get a nice nap during the scope. Is your scope early in the morning? Hopefully you can nap a lot after it's over with too.
 
Thanks Cat! I'm sorry you're flaring :( Cindy I have drank the magnesium citrate a bunch of times and its not that bad. It's the aftertaste that is grosser. So just have some juice to wash it down quickly after taking huge gulps of it.
 
Hey people! How are you all? :)

I had my Ct scan yesterday so waiting on results, might start taking bets on it coming back as negative lol as like all the rest if my tests -___-

Woke up today and tummy was sore, my joints are sore, I'm bloated because of being on the time of month, kinda feeling a bit crappy today. Had to do two cake orders the last two days whilst in serious pain, I should of said no but I didn't want to turn away the sales or let someone down.
Btw I find that exercise doesn't help my symptoms dunno if anyone else is like that?

So I feel I haven't stopped the last few days and I'm ready for a lye in on Friday. Hubby is going away for 3 weeks come Sunday with work, will have no contact at all part from the odd email if he can get on a pc. Not looking forward too that :( anyone want to keep me company? Ha xxx
 
I finally slept all night! yay!
I received a letter from my GI (dated the day before before I emailed him) with my calprotectin results which were slightly raised. Compared to the what I have seen on here, it seems like nothing. It's definitely put my mind at rest a bit. Although in his letter he did say that along with the past b12 deficiency - it could suggest an inflammatory problem in the small bowel.. Surely the results would be higher if it was an ibd?

Though in the week or two leading up to the test, my bowel wasn't too bad. I wonder if the results would have higher if i'd done it this week..

My consultant hasn't emailed me back yet. :/

Good luck with your GI appointments Cat-a-Tonic & Jessie45. And good luck with your scope Mccindy! Yikes!

BluebirdinLove - How did you end up living in the USA? I'm very jealous!
 
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Hi Bluebird, I don't think I ever contratulated you on passing your driver's test - so, CONGRATS!! :D I hope you get something out of the CT scan. When I had my CT, my GI explained that CT gets a good "overall" picture of the abdomen, but it doesn't see fine detail like an MRI will. So if they think they see something on your CT, they'll likely send you in for an MRI of that specific area to get a better look at it. Oh, and I was also told that CT sees hard tissue like bones better, whereas MRI sees soft tissue like organs better. So, the CT may not see much, but if they do see something abnormal, an MRI will be the way to go. Good luck - I hope the results come back quickly and that you get something worthwhile out of them.

Cakes? Are you a baker? I find it kind of sad when bakers have to go gluten-free, that just seems so wrong to bake such lovely things but not be able to eat any yourself. I know that Quirkysoul (Meg) has a business where she bakes cupcakes, and she's had to go gluten-free recently too. That just makes me sad! That's sad about your hubby going away for 3 weeks, too. I think I live too far from you to visit & keep you company. :( But hey, you can watch Thor while he's away - your crush Chris Hemsworth will keep you company. :D Have you seen Cabin in the Woods? He's in that too. It's quite scary so don't watch it before bed (it's a horror movie with kind of a sci fi twist - it's really good and very unique, not like any other horror film I've seen). I know that it's on Netflix streaming, I've watched it a few times myself.

Exercise does help my symptoms - as long as I'm doing the right type of exercise. Jogging and lately bicycling too just make my joint pains worse, so I'm mostly avoiding cardio lately. But I can lift weights and that always makes me feel better, and yoga helps too. Not all forms of exercise are created equal, and everyone responds differently. What type of exercise was it that made you feel worse? Or was it just generally being more active/not resting enough? I find I really have to listen to my body - if it says rest, I have to rest and can't push myself. When I was in remission, my body was telling me to exercise, exercise, exercise! So I was working out like 6 days a week, and my body was thanking me for that. Now I'm working out 3-4 days a week and resting more, and that seems to be an okay balance for me in this flare. My long & rambling point is, listen to your body, and also try gentle forms of exercise when you're feeling okay. Some really gentle yoga might help a lot, and you can find lots of videos online for free so that you can do yoga in the comfort of home. :)
 
Bozzy, haven't had my appt yet - it's still morning here, and my appt is at 2:30. :) I'll let you know how it goes!

That sucks about the jobs. Are you on leave from your insurance/call center job or did you quit? I remember you talking about how you had a very difficult boss. I hope you can find something better soon!
 
Colonscopy complete!
Last night was terrible, I was in the bathroom every 1/2 hour from 4 until about 10. I woke up at 415 and went to drink the mag sulfate. I got about 8 oz down and then I had to stop. I thought it was better to stop at 8 oz and keep it down rather than push it to 10 and throw it all back up!
The colonoscopy went really well. The doc says he saw absolutely no sign of Crohns' disease. He did take a couple of biopsies just ot make sure. He also removed one polyp and is sending that to pathology to be tested because both my mom and one sister had precancerous polyps before. He thinks I just have food intolerances, or IBS. Frustrating! My hubs has a theory that maybe the brain tumor triggered some kind of GI sensitivity because some of the problems started a month or two before the tumor was found . So he's thinking I should try slowly, one thing at a time, wait a few days and then try again and see how it goes. ican say that veggies and salad will be last on my list becuase they cause more problems than anythgin else!
I didn't sleep that well last night since my belly hurt and I was afraid I wouldn't wake up i ntime to take the mag sulfate. I slept most of the way home after the test but am still pretty wiped out. Not eating for 36 hours really made me weak! I lost 3 of the lbs I had regained since surgery. Boo!
 
My appointment went well :) he talked a lot about the intussusception and explained it and answered my questions about the cause of it, etc. he feels it is idiopathic because it if was inflammation or something from crohns or another condition, it would have to be pretty significant to cause intussusception so therefore should have been noted on the CT (and no lead point could be seen). He has referred me to a surgeon. He thinks they may want to do a laparotomy and "run the bowel". I asked "when they find it, will they what.. Resect it?" And he said he doesn't really want to speculate and I can talk about that with the surgeon. But I assume that's what they'd do. You wouldn't just open up and do nothing. I want those pieces out so I can be back to normal!!
 
Cindy, that's so frustrating that your scope didn't point to anything solid. :( I was hoping you'd be able to "graduate" out of our little club (although, and this goes for everyone, I will never kick someone out of the Undiagnosed Club even if you get a diagnosis, you all are free to post here anytime and we're all here to support you no matter what!). Maybe the biopsies will be more enlightening, there's still hope. I hope the polyp is nothing major - goodness, the last thing you need is another cancer scare! I hope you can gain some weight back too. Can you eat avocados? They're one of my favorite "fatten up" foods, very high in healthy fats and calories, don't upset my tummy, and are wonderful for packing on a few lbs without stuffing yourself with junk food.

Well, I just got back from the GI myself. The appointment went very well - you know when you think about the things you want from your doctor, and then they agree with you 100% and give you everything you want? As I'm sure we all know, that doesn't always (or often) happen, but it happened today! :D I told him about the bleeding and how I'm not sure if I'm flaring, and how maybe the Asacol-Delzicol switch is playing a part, and how I'd rather have a colonoscopy than a flexi-sig to be thorough, especially since it's been 3.5 years since my last colonoscopy, and I also said maybe after the scope I'd like to switch to something like Apriso instead. He said yes yes yes, he agreed that in my situation a colonoscopy is better as he said he can biopsy throughout the colon and that he'd biopsy the terminal ileum as well, and then after the scope he said we'll discuss my medication options, and that Pentasa would be another option to try as well as Apriso.

I nearly fell out of my chair when he said Pentasa - I had asked him if I could try Pentasa nearly 3 years ago, and at that time he said noooo, because he didn't feel I had anything going on in my small intestine. He put me on Asacol because it works mostly on the colon, and now I'm on Delzicol which also works on the colon. Pentasa is basically the same drug but works more on the small intestine. I'd freaking love to try Pentasa, it was what I had wanted years ago but I compromised and took Asacol instead. Ahh! So now I have 2 potential options, Apriso or Pentasa. And that's if the scope comes back totally normal, which I'm expecting it probably will, given my history of normal test results. If the scope comes back actually showing something then I imagine that I'll have even more options. Trying not to get my hopes up about that though because every test I've had in the past was normal, clear, inconclusive.

Although, I have to admit, I have gotten my hopes up a bit. At my appointment, my GI felt all around my abdomen. He kept going back to the LRQ, frowning, palpating it again. He asked if it hurt when he pushed on it (it didn't) and he asked if I had a bowel movement today. I said yes, several. He was like, Hmmmm. So he wasn't feeling constipated stool since I have been going to the bathroom, but he clearly felt something abnormal. Did he feel inflammation?? I'm sure he'll need the scope to confirm - but if there's actual inflammation that he can feel and that the scope could see, holy cow, maybe I really will get a proper diagnosis soon?? I'm really, really trying not to get my hopes up too much! I know this latest flare or whatever it is has been a game-changer, with my symptoms being completely different from my previous flares. Maybe that's a good thing, though - maybe that means that this time around, something will actually be found?

So yeah, it was a great appointment all around. My GI even said he will specifically biopsy the TI "to look for Crohn's"!! This, coming from a guy who would not say Crohn's in my presence and hesitates extremely to even say IBD, and has mentioned IBS multiple times in the past. I don't know if it's the bleeding thing that's making him more on board with the Crohn's & small intestine idea (his previous theory was microscopic colitis & colon involvement, no small intestine involvement), or maybe if it's the mystery abnormality that he palpated in my LRQ? But I like this shift in attitude and that it's more in line with my own theory, finally. I've had to fight an uphill battle to get him to take me really seriously - when I first saw him, he was a bit dismissive after my test results started coming back normal. Then I tried pred and it worked, and he had an attitude change and started working on a maybe-IBD theory. Now he's maybe kinda leaning towards Crohn's, which has been my hunch all along - !!! I am probably just reading too much into it and getting my hopes up too much. But wow, I would so love for the colonoscopy to find inflammation indicating Crohn's (or whatever it is, just as long as it gets me a proper diagnosis). I've been waiting so long. I was fine with waiting while I was in remission, because I felt good most of the time. But now I'm flaring or whatever and I'm back to being kind of desperate for answers. I really hope answers are on the horizon, as they seem like they might be. Ugh, I should not get my hopes up too much though or I'm just setting myself up for disappointment yet again!

So anyway, yeah. I haven't gotten the scope scheduled yet, the scheduling department will supposedly be calling me before the end of the week. I hope I can get in quickly. I'll keep you guys posted!
 
Jessie, yikes, surgery sounds scary, but if that's what happens then I hope it goes really well, and that it doesn't recur once the bad parts are removed. Are they not able to... I don't know what the term would be, de-telescope it? Pull it straight so that it's no longer intussuscepted? Or would would it just revert back to its intussuscepted state? (That's a hard word to spell by the way!) Hopefully the surgeon can answer that stuff for you. I admit I know next to nothing about intussusceptions - it doesn't seem to come up often at all on the forum, so I guess in that regard I'd agree with your doc that it seems probably not Crohn's-related. There are so many things that Crohn's can cause though that I wouldn't be surprised if it were Crohn's-related!

It sounds like the surgery can be done laprascopically though? That's good, you should have a quicker recovery than if it were an open surgery. Please keep us posted on what the surgeon says and if you'll be having surgery - I hope that whatever happens, you get some relief and some answers!
 
Cat, yeah surgery does sound scary but I have been feeling so awful that it would be worth it! I think they call that reducing. I have read a few articles that say you can attempt reducing using a double balloon endoscope (well could be done with barium enema if in the colon...). But in adults it doesn't have very good success. I am going to ask him about it though.

I'm not sure if it can be done laprascopically or not, it would be awesome if it could!

The only reason I ever started thinking crohns was because he (my GI) suspected a narrowing in the small intestines and I researched and saw crohns was the most common cause of that, so thought maybe it could be. However, now that I know it's this (and it technically is narrowing in the small intestines, so he's right!) I am glad it doesn't seem to be crohns too, and hopefully will just be a one time thing I can get fixed and then just be normal again :)

(You're right, intussusception is hard to spell! Hahah)

I will definitely keep yas posted. It will be awhile though. He is going on vacation and the referral letter has to be dictated so it will take two weeks for the surgeons office to even get the letter. Dunno how long after that...
 
Cat, I missed your other post about your appointment! I'm so glad you had such a great appointment!! That's great he listened to you like that and is willing to try pentasa even if your results don't come back with anything. It feels nice to have a doctor to supports you eh? :)
 
Cat, I'm so excited for you! Thank goodness the doc saw things your way and you're going to get a scope. I don't envy you the prep day though. I'd be so happy for you if you got a proper diagnosis this time. and at least he's willing to consider Pentasa for you.
yeah, I'm a little bummed about the lack of evidence of Crohn's. makes me really wonder what the doc was seeing in 1995 when they gave me my original diagnosis! So I guess we'll see what the biopsies show. Also, yes, I REALLY hope the polyp turns out to be nothing, I don't need more cancer going on for sure. He says if it comes back precancerous, I'll need another scope in five years but taking it out of there makes it safer. But still!


Jessie, I hope the waiting doesn't take too long. I know you're settled in and expectig a couple weeks' wait but hopefully it goes faster than that. I'll keep my fingers crossed for you.
 
Jessie, he can't quickly do the letter before he goes on vacation?? Sheesh, that's just great. I hope you can at least get in to see the surgeon quickly once the referral does go through. Can you maybe email your doctor, asking that since you have to wait 2 weeks for the referral, can he please rush it when he returns and let them know you're an urgent case? I don't know how it works with surgeons, but I know with my GI, if I let him know I'm flaring/miserable/whatever and need to be seen urgently, he can usually get me in within a few days. But if it's not urgent, a regular appointment takes like 3 months. So being labeled as an urgent case could make a big difference.

And if all else fails, cry on the phone (real crying, though, not fake crying). When I first got sick, I saw my GI for the first time and he ordered a colonoscopy for me. But something got screwed up along the way and I wasn't labeled as urgent, so they told me there was like a 4 month wait. I waited it out for about a month, but I was so sick and I just didn't know how I was going to make it another 3 months. I ended up calling the nurse, in tears, and explained that I was so miserable and I didn't think I could wait longer. She was sympathetic and got me in the following week. I'm not saying be manipulative of the system, but if you're suffering, it's okay to be emotional and to ask for help, and it might get you a quicker appointment.

Cindy, I am also wondering what your doctor saw that got you your initial Crohn's diagnosis. If it was on biopsy, that's pretty iron-clad proof, most doctors won't dispute biopsy evidence. 1995 though, that's quite awhile ago, I'm guessing they probably don't have the biopsy/scope information on file anymore from when you were diagnosed. Very mysterious! How are you doing today? Were you able to eat something yummy after your scope?

On the subject of scopes, what preps has everyone done? I'm looking to try something new, after having done Gatorade & Miralax twice (and getting too dehydrated from it both times). I see that there's a prep that's quite new to the US but has been around in Canada for awhile - it's called Prepopik in the US and Pico Salax in Canada. Apparently you just mix a sachet of powder into one glass of water and drink it, then drink clear liquids of your choice, then later you have another sachet of powder mixed in with water and drink more clear fluids. It's supposed be very easy to get down and the taste is supposed to be actually kind of nice. And with only 2 glasses total of the prep stuff and then clear liquids of your choice, it sounds too good to be true! I'm wondering if anyone in here has tried that prep? My main concern is getting too dehydrated again, as that's miserable and I have to go get IV fluids when it happens. Anybody have experience with Prepopik/Pico Salax?
 
Well I guess he did dictate the letter, but the service that types it out will take like 5 days to a week to send it back to them, and then they won't be in the office to mail it. I wish the clerk could have typed it out or something. Anyway, there is no changing it. :( I did emphasize to the clerk woman (who is the drs wife) that I am vomiting most times I eat and would really appreciate to be seen quickly so hopefully she will pass that back to him (although he knows my symptoms too lol).

Yeah once I get the appointment with the surgeon I can try getting on cancellation lists etc. I might also get my GP to talk to the surgeon as they know each other. I might do that before I even get my appointment if I have another appointment with him. Thanks for the advice :)

I think I did have pico salax for one of my preps once, but I can't really remember, seems I've done so many lol. If its the one I am thinking of, I was freaking out that I wasn't getting emptied enough and it seemed so mild (lack of cramping, less frequency of bms) that I was sure it wasn't working. But he said the prep was excellent in the report so...
However, take that with a grain of salt as I'm not 100% sure if that was the pico salax time or not. I know my body is more used to preps now. The first time I ever did one it was super painful with cramping and most times since its minimal cramping/pain.
 
Cat: thank ya thank ya!!! It will be nice to get some of my independence back :)

Yes I bake cakes :) I do all cakes from scratch (part from the fondant) I'm not a professional, I'm self taught but I do sell cakes, I don't make much money because my ingredients is expensive but I'm old fashioned and like to do it that way.

This is my fb page for my cakes:
https://m.facebook.com/QueenOfTartsUSA?m_sess&viewtype=public&__user=1470169860

You can see my work then :)

I can't eat them really but I remember how they tasted :) bloody good! Haha

Nope I've not seen cabin in the woods, I love scary films and I wish I could get Chris Hemsworth to come keep me "company" ;) rawwwrrrrrr

I dunno as far as excerise like if I walk too far my tummy hurts, joints get tired and I get exhausted :/


Hope everyone's okay? Had a bad few days with pain,bathroom and my depression. I hate replying off my phone lol always easier to reply by pc but sending my love to everyone, mwahs xxx
 
Bluebird, walking is rough on my joints too. Weights & yoga are always easy on my joints though. Have you tried yoga? There are some really gentle yoga moves you can try (not all yoga involves twisting yourself into a pretzel, ha ha, I'm not very flexible at all so I do mostly basic yoga moves rather than the more "advanced" twisty moves). There's also this thing I do sometimes as I'm in bed trying to fall asleep - you start with your toes and flex those muscles, then move up into your feet, legs, etc. Slowly move up your body and flex every muscle one by one - it's very relaxing. It's not quite yoga, but it makes you think about your muscles and every part of your body. It's both interesting and relaxing. :)

I think you'll like Cabin in the Woods. It's one of those movies that you have to watch several times to fully grasp the plot - and the opening scene will probably make you say WTF! But it's really good, it's a horror movie with some humor and some sci fi and a LOT of blood & gore and some really interesting plot twists too. I won't say more than that because I don't want to give anything away.

Your post made me drool thinking about cake! Yum yum. Have you seen the blog "Cake Wrecks"? It's kind of hilarious, it's all photos of supposedly professionally made cakes but they look awful or have bad misspellings or whatever. Here's the link:
http://www.cakewrecks.com/
It makes me laugh but it might just make you sad as a baker! :p

Jessie, that's a good thought about having your GP talk to the surgeon personally. I don't know if my GI & GP knew each other before I got sick, but they definitely know each other now! ;) Thanks for the info on the Pico Salax stuff - that actually sounds ideal for me, I need a less-violent prep. The Gatorade & Miralax just made me go and go and go forever, I felt like I'd drink a glass of water and it'd just shoot out my butt mere moments later! :p So even though I was drinking a ton of liquid, I got really dehydrated because it went through me too fast. I just wasn't absorbing enough liquid, regardless of how much I drank. I'd rather avoid having to go get IV fluids again if I can avoid it, so a gentler/less explosive prep sounds right up my alley.

Speaking of prep, I still haven't gotten a call from the colonoscopy scheduling people, so I'm going to call them in a little bit. My wish list for today is to not have to wait months for the scope, and to get the prep I want. Wish me luck!
 
Cabin in the Woods is awesome!

I saw my new GI doctor today. He seems pretty nice. He scheduled an EGD and colonoscopy for Monday and a capsule endoscopy for Tuesday/Wednesday. He also ordered some more blood and stool tests. I'm not going to be eating for days! lol. I was like, doesn't matter, I can't really eat anyway.

I'm down 15 pounds now. I don't think I've passed all the barium yet. A little comes out that looks like barium poop, but then it goes back to the D.
 
Jessie, they can try to blow it out which is what I think you describe above with the endoscopy or enema. They can also go in to your abdomen and try to pull the two sections apart. If that doesn't work, they cut it out. I do recall reading that it can re-occur if it was pulled apart (as opposed to cut out).
 
Carrie, wow, that's a lot of tests very quickly, sounds like the new doc is more on top of things than your previous doc! Very promising, and I hope it pans out. Does this mean that you only have to do prep once? If you don't eat after the colonoscopy, you'll still presumably be cleaned out for the pill cam? Good luck with everything, please keep us posted, and I hope one of these tests gets you somewhere! Best of luck and fingers crossed for you!

I got my colonoscopy scheduled too - it's on Aug 28th, so a little less than 3 weeks away. When I asked the nurse about the prep, she said my options are Golytely (yuck), moviprep (yuck) or Gatorade/Miralax. She had never even heard of Prepopik/Pico Salax. So, I emailed my GI to see if he'd authorize Prepopik for me, and I laid out my reasons why I want to try it. Hopefully he'll be on board with it. If not, I'll do Gatorade/Miralax again but will go sloooooowly with it and drink tons and try not to dehydrate this time. At least I can get that one down - I've never done Golytely nor moviprep but I know I've heard that Golytely is awful, and I think I've heard similar things about moviprep. The nurse did say that there used to be a pill version of prep, but it was pulled from the market, otherwise she'd be happy to let me do that one. So yeah, hopefully Prepopik is an option, it sounds like the best prep for my situation. If I didn't dehydrate so easily then I'd be happy to do Gatorade/Miralax again, as it is easy to get down (it just tastes like Gatorade, the Miralax makes it slightly thicker than regular Gatorade but it has no taste).

Oh, and my scope is scheduled for 7 AM - score! My last scope was at like 1:30 in the afternoon and that sucked, I hated getting up and waiting and waiting and feeling like crap and having to stop drinking fluids like 4 hours prior but I was still so dehydrated, it was not fun at all. Just getting up and going there and getting it over with sounds so much better! My co-worker who has UC agreed, he said a 7 AM appointment is like the best time to go have a colonoscopy. So yay, there's one bright point - if I can get the prep I want then I'll be a pretty happy camper (as happy as someone who has to induce wicked diarrhea and have a camera shoved up their butt can be, ha ha).
 
I just had a scope/bowel prep last month (july 30th) now I get to do it again for surgery. Miralax and Gatorade... yuck. I woke up this morning having dreamed all night I was in pain (because I was) due to my bowels mis behaving. I go for surgery with my ENdometriosis specialist on Monday August 12th. She is hoping to clear up the cause of my SBO from a year ago as well as address any other bowel adhesion problems. I fear that its another useless surgery as the real issues seem to be in my small bowel and no one has looked at it. I'm hoping though that this surgery will help me get closer to getting to a GI who isn't a complete useless twit. If my problems continue after she has "cleaned up" the endometriosis I think she will be able to get me in to Virginia Mason in Seattle, which is the closest GI specialists. I'm so frustrated with not being able to get any tests except the same one over and over again. I have had three colonoscopies, the most recent even showed red angry bloody spots that the GI ignored and were not even mentioned in the report that I was supposed to take to the surgeon. I don't know if there is way to force him to give me pictures of those parts of the bowel or not? Does anyone know how to challenge and diagnosis. His report said "all was normal" and it clearly wasn't.
 
I have never seen cabin in the woods! And I wont either.. I am a massive wuss when it comes to horror movies.. particularly zombies. So for me the scariest film I have ever seen was "28 days later".. I remember playing resident evil on my older step sisters (her boyfriends playstation) when I was like 8yrs old.. and had nightmares for a looong time lol.

Cat - that is so good about your colonoscopy! Is that prep you're requesting the same as picolax? I had that and it was great! Much better than klean-prep I had before.

Omaklackey - sorry about the rough time you've had.. you should be able to get copies of your report and pictures surely? Maybe a second opinion could be in order... because if you saw red spots on the screen and they ignored it.. thats not good. It was similar for me.. because I only had gas and air (no sedation) I could fully see what was on the screen. And it didnt match what they were telling me
And I wish you best of luck for mondays surgery :hug:
 
Hi Cat! I wasn't able to eat at athe restaurant I wanted to after my colonoscopy becuase I wake up really slowly from the meds - I ended up sleeping all the way home. We did talk about stopping but I was so nauseated I couldn't think about eating . Sometimes when I don't eat regularly that happens. My hubs says since we couldn't go to the Original Pancake House that day, we will go there after my follow up appt. So that will be fun! They have delicious food and a great gluten-free menu.
Also Cat, I don't honestly reember if there were any biopsies with my original diagnosis. I think the doc told me he saw Crohn's during the scope. So who knows what he saw? Kind of bugs me because he must have seen something out of the ordinary but this doc didn't see anything. Guess I'm hoping that I don't get those three words - Irritable Bowel Syndrome.....

Bozzy, cabin in the woods is a great movie! Kind of a twist on the classic horror movies from the 80s and 90s. I really liked it!

And hey guys I thought of another Holllywood hottie on my list! Joe Mangianello is SUPEr hot. I love achance to check him out!
 
Bozzy, I believe it's the same as Picolax, yes. I know it's the same thing as Pico Salax so I would imagine it's the same - it seems to have different names in different countries for some weird reason. Everything I've read seems to say that it's good in that it doesn't taste nasty and you don't have to drink much of the prep itself. I really hope my GI approves it for me. Worst case scenario, if my GI says no, I read that Pico Salax is available over-the-counter in Canada, and that as an American I can buy it over the internet from an online Canadian pharmacy without a prescription. It's a little pricey to do it that way, but it can be done. I'm considering doing that over going the Gatorade/Miralax route yet again. I'd rather be on the same page with my GI if possible, so I guess I'll have to weigh my options if he says no to it. Hopefully he'll say yes.

Omaklackey, you have the right to get your medical records, yes. They should either make them available to you online or make photocopies of them - I know with my doctors, they offer both options, but for the photocopies I have to pay something like 10 cents per page. It's free to view my records online. And from what I've heard, if I told them I wasn't able to pay for the cost of the photocopies, they'd do them for free. So definitely ask for copies of all your files, including the images. Maybe they could email them or burn them onto a CD or something too - but it is your right as a patient to have access to all your medical files.

Cindy, if you do hear those dreaded 3 words (or letters), it's up to you whether to accept it or not. With not being able to eat so many foods and having such a hard time putting & keeping weight on, I would say do not accept an IBS "diagnosis." You don't lose weight with IBS, and fiber is supposed to help IBS - you mentioned veggies are a big problem for you, and that to me says not IBS. Just because they didn't see it in a scope doesn't mean it's not IBD - as I'm sure you know, Crohn's can manifest anywhere in the digestive tract, and often likes to hide out in the small intestine. So if it comes down to that, I'd say ask for more tests - have you ever had the pill cam done? It can see the entirety of the small intestine and the scopes don't get anywhere close to that, the scopes only see the very beginning & end. Or maybe when you have your next MRI done on your brain, perhaps you could ask your GI to schedule an MRE at the same time to look at the digestive tract while you're there. Just a few thoughts for you. If it were me, I would definitely not accept it as IBS - you're struggling too much and having too many & too varied symptoms for it to be "just IBS." Keep fighting!

Hmm, I don't know who Joe Mangianello is, I'm going to have to google him. But I thought of another gorgeous guy too - Aaron Rodgers, the QB for the Green Bay Packers. :) Cindy, I know you're a Wisconsin girl so hopefully you're still a Packer fan and haven't turned to the purple side! Ha ha. ;)
 
Don't worry it's probably my Internet connection or I didn't press post or something!!
I got my bloods redone and still no increase in potassium despite the tablets/supplements - I suppose it is because I use the loo A LOT!! Has anyone else got memory problems with their sickness as I always forget things and I can forget entire conversations I've had. It seems to be getting worse. I've been on sleeping tablets for the pain at night as I don't sleep unless I have them but I still get up to use the loo anyway but inbetween I do sleep thankfully. I was wondering can they build up in your system and make you forgetful or maybe it's pain killers. I'm a bit worried as I really want to go back to university in September but I can't recall a thing :/
 

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