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Yeah, CT scans get a good "overall" picture, whereas MRI gets better detail of specific things - that's what my GI told me. Also, CT is better at seeing dense tissue like bones, whereas MRI sees soft tissue like organs better. Plus like I said, you get radiation with CT, but MRI is done with magnetic fields so no radiation involved. So for looking specifically at your digestive tract, MRI would be the better of the two types of scans.
 
Annnd my D is back to totally unformed and orange!

Maybe he'll want to do an MRI. The only time I had an mri it was for my spine.
 
Aw Carrie. :( Big hugs! That's so disappointing! When do you see your doctor again - surely you can pick their brain as to why the patency capsule didn't pass? It wouldn't just get stuck for no reason, they don't get stuck in 99.9% of people! So surely there must be something going on, either inflammation or stricture/narrowing of some sort. Did they see where it's stuck? Is it the same place they saw it in when they did x-rays yesterday? If so, then obviously that spot needs more investigating! Would double-balloon endoscopy be feasible, I wonder? I know that test isn't done often, but it can see the full small intestine and take biopsies and may even be able to dilate strictures. Don't give up, at least this gives you more things to investigate. Hang in there! I hope you enjoyed the hamburger and that your body won't punish you for having it. Sending you a big hug.
 
The nurse? told me that it was in the same place, or very nearly the same place, as yesterday. Which could still be either the small intestine or the colon, but I've been having diarrhea so it seems highly unlikely it's in the colon? at least, that's my thought. It's not like I haven't been passing stools. Where ever it is, it's where my colon and part of my small intestine overlap. I'm guessing that's somewhere above the belly button.

If the doctor doesn't call or leave me a message today I'm going to call him tomorrow. The nurse said he'd call so I'm going to give him some time. plus I'm really a mess. I want to just go to bed, but I don't because then I'm letting "it" win.
 
Aww carrie! Like cat said before.. surely there is something wrong for you not to have passed it like a stricture/inflammation narrowing etc.
Hopefully the doctor will keep at it
 
Gutted Carrie, I'm guessing capsule will just dissolve now? Well your not alone I managed to eat some noodles just waiting to see if I get punished for eating them. Out of interest if I'm drinking Complan as my main diet how often should I be passing stools. I'm so messed up with codeine I end up taking laxatives to go to the toilet, so ironic as previously I was going to the toilet every hour! Feels so cruel!
 
Carrie, you mentioned MRI - I bet an MRI could pinpoint where it is stuck. Since it's just the patency capsule and not the pill cam itself, there's no metal in it and it should be safe to have an MRI. I would mention that idea to your GI when he calls - maybe he could rush you in for an MRI. Just a thought anyway.
 
yeah the mri is probably cheaper than the pill cam anyway....

Paul, I'm not sure exactly what kind of nutrition Complan is. I checked out the website, and I'm going to assume it's whole nutrition which means you should still have normal bowel movements. If you're only doing liquid then maybe once every other day? It's hard for me to say because I'm having loose to liquid diarrhea while on a 100% liquid diet. I don't even know how that is happening. I would have thought I'd stop having movements!

Anyway, Complan seems to be sort of low in fiber so I'd expect less output overall, but it should still move through your system at a regular pace.

The other kind of nutrition I was thinking of was elemental nutrition. I think you have less bowel movements if you are on elemental nutrition.
 
I'm not sure the price of the pill cam offhand, but MRIs are pricey. I just had a "bony pelvis" MRI last month to check my hip arthritis. The bill just came in the mail - it was about $4,000 - fortunately my insurance is paying most of it so I'm only on the hook for about $500.

As for what type of stools to be having while on a liquid diet - I believe Dusty once explained it like this. If you're having only liquids, you should generally expect to have liquid output - in line with what Carrie's experiencing. It doesn't go in solid so it wouldn't come out solid either. Makes sense to me although I'm probably not explaining it as well as Dusty did.
 
Hey everyone still no appointment going to call the GP and GI in the morning. Getting so sick of this I don't know what to do anymore to cope I just want to be better :( the incontanice is not a new thing sadly and they do know about it was just too afraid to share stupidly!
Congratulations Bozzy xxx
 
HEy all.... well I had my appt this morning. The polyp was a precancerous adenoma. It is all right because the ytook it out. It just means that I will have to have another colonoscopy in five years. Also, he did say the dreaded words..... "IBS". boo! he wants me to adjust my diet to match the low-fod diet. A few more fruits but otherwise not much differet than what I've bee ndoing. I have a med to start tomorrow that he thinks might help. HE says he doesn't think I ever had Crohn's. I feel like I got a lifetime crap diet sentence because who knows with an IBs diagnosis whether I'll ever bre able to eat normallyu again? Grr!
ialso had to up my anti-seizure medicatio again because I've been havign petit mal seizures since Saturday. I'm still on target to return to work part time on the 26th. The doc thinks the seziures are normal brai nrespoise to surgery and the blood that's still in there. My talking and typing have gotten worse since they started but that's suspected to be post-ictal and hopefully will improve again. So not a good-ews day!
 
Well been to the docs and tracked down my biopsy results... I don't believe it but there normal. I don't know how to respond to that, I wanted them to find something to treat this pain but no. Instead I'm booked in for a urgent MRI of the small bowel. I hope this is the right direction to go in? We're moving house in the next 8 weeks so I hope I'm a little better by then.
 
Sorry to hear that you didnt get any answers paul.. I am glad theyre doing an MRi scan.. and hopefully you wont need to wait long.
Im keeping my fingers crossed for you

Mccindy - :hug: big hugs to you.. thankfully the polyp was found and they can keep an eye on you now. Sucks that they dont trust your previous diagnosis of Crohn's. What tests did they do when they did diagnose it? The only reason I asked is because I was diagnosed with Crohns with just a CT scan. Then later on when colonoscopies were negative for IBD. they diagnosed IBS instead.
 
Just so you guys know, I'm not going to be around the forum much for a little bit. I have to deal with some grief/anger issues. I wrote a lot more about it in this thread:
http://www.crohnsforum.com/showthread.php?t=54812

Long story short, and old friend died in some horrible circumstances and it's going to take me some time to deal with it. I'm vascillating between anger, sadness, confusion, frustration, and just pure disbelief. I'll be okay, I just have to figure out how to work through this and get to being okay. But I'm not really in a mindset right not to be able to provide a lot of support to others on here for now. I'll still check in and will read, but probably won't post much for the next little while. Just so you guys know why I'm not around much.
 
bozzy - the original diagnosis was via colonoscopy. NO biopsies at that time, he put me on Pred for four months and then did an exploratory bowel and said he didn't see it. So who knows. I guess for now I'll stick with the diet wit hsome very careful experimentation. adn we'll see what the meds do for me. I start them tonight.
 
I still keep looking for that patency capsule.. I imagine by now it's dissolving or breaking up though so I probably won't see it.

I did see bits of tomato from yesterdays pizza, because screw you body. if you're going to suck no matter what then I'm going to at least occasionally have something yummy. like pizza.

I've also drank an unfortunate amount of barq's root beer since Thursday. nothing that would be out of the ordinary if I was still drinking soda, but I'm not. need to nip that in the bud right now.
 
long time no post for me:(

I have been having the worst time! I have had some serious stomach pain, and now my kidneys feel like they are being stabbed. I have an appointment with my doc Thursday, but I'm not sure I can wait that long. on top of the stomach pain and kidney stabbing, I can barely walk without wanting to cry.

he said that I will have to do a MRI..finally! I only hope t gives me answers.
 
I was on the phone with my dad a little while ago, and we were talking about my sick again. My dad believes doctors way too easily I think. So he tells me he has nervous colitis (another name for IBS). The doctor who diagnosed him is dead now (!), but when he diagnosed him 10 years ago it was after a colonoscopy in which dad's colon was so inflamed he couldn't do an entire viewing.

Someone correct me if I'm wrong, but IBS never causes inflammation right? What they told him 10 years ago, ok they probably thought other things, but as far as we know, these days, IBS doesn't come with inflammation?
 
Hi all,

I'm new on the forum. I am undiagnosed for IBD. I had a biopsy done about 3 years ago from colonoscopy and it was negative.

I was first diagnosed with IBS, then diagnosed with gastroparesis after an emptying exam.

I've had issues with loose bms for years, but lately I've had full blown D almost weekly. My GI doctor is testing for fat malabsorption after I mentioned that I can't digest fat well. I just cannot gain weight, even if I eat a lot.

Even though I'm undiagnosed, I hope to learn from experiences and advice because I can relate to your stories and knowledge. Thanks :)
 
I think youj're right Carrie. My doc said he thinks I have IBS because he saw no inflammation at all in m colon. Inflammation fits into "I' in Inflammatory Bowel Disease. id' think he'd do well to see another GI doc and get reexamined.
 
I'm also pretty frustrated because my doc wanted me to start on a new med for IBS and my insurance compay denied it. I have to wait while they get it authorized.
 
Just felt like stopping and saying hi to you all, carrie, bluebird, bozzy, and everyone else! Welcome to moogie. I really miss Cat these last couple days and I'm really hoping she's coping with her pain and sorrow. Hugs to everyone!
 
Ate some tomato and cucumber around 6pm. Five hours later.... Cucumber seeds in the toilet. I'm miserable and cranky. The doctor better call me tomorrow.
 
welcome moogle! - i think because it has been 3yrs since your last colonoscopy.. i think it would be good to have another one now seems as your big D has worsened. what does your GP think?

mccindy - how come your insurance wont cover the IBS meds?? that is so frustrating!!!

carrie - sending you big hugs :hug:

i miss cat too.. but this forum can be hard to keep up with all the new members and posts.. so it will be good for her to have a break. hope you are ok cat! xx
 
I'm going to try to call the GI doctor this morning. I'm so worried he's going to blow me off :/ anyway, got the xray reports from the patency capsule.. it says .. nothing much.

8/14:
RESULT:
IMPRESSION: THE EXTREME UPPER ABDOMEN IS EXCLUDED. THERE IS A RELATIVE
PAUCITY OF SMALL BOWEL GAS. THERE ARE NO AIR-FILLED DILATED LOOPS OF
LARGE OR SMALL BOWEL.

PATIENT'S CAPSULE IS IDENTIFIED IN THE RIGHT LATERAL ABDOMEN JUST ABOVE
THE LEVEL OF THE ILIAC CREST. IT PROJECTS OVER THE REGION OF THE CECUM
ON THE AP FILM AND JUST ANTERIOR TO THE SPINE ON THE LATERAL VIEW.
ALTHOUGH THE CAPSULE IS MOST LIKELY WITHIN THE CECUM, IT MAY STILL BE
WITHIN THE DISTAL ILEUM.

8/15:
RESULT: The superior aspect of the abdomen is excluded from the image.
There is a patency capsule in the lateral mid right abdomen, centered in
the midline on the crosstable lateral view. It is at the level of the
distal ileum or the cecum, and overall not significantly changed in
position. No dilated bowel loops.
 
Hi bozzylozzy,

I'm going to ask my gi doc if he thinks a second colonoscopy can be done. They have been willing to work with me pretty well in the past.

I'm waiting for the results of the fat malabsorption test now. I hate the waiting part!
 
Carrie - is that where you get your stomach pains? (Where the patency capsule is stuck).. surely this must prove a thickening of the bowel lf some sort?? Good luck when you can get in touch with your GI.

Moogle - I hope they do send you for it.. like I say.. make sure you let them know about you bm changes. I hate waiting too (its so annoying!) It will be a good idea to get your vitamin and inflammation levels checked too in the mean time. Keep us up to date and good luck!!
 
bozzy, I think that's one of the spots where I get my pains. It's hard to say, because I'm not entirely sure where my cecum is in relation to my big fat stomach. lol. I think its around the midline. I get another sharp pain in the left above belly button, and another one that feels deeper inside me. Everything else is crampy and/or enduring pain that just never goes away. I called and left a message for my GI doctor pointing out I had diarrhea the whole time the patency capsule was in me, so I don't see how it could be in my cecum for two days.
 
Hi Moogle! Welcome, kupo. :) I've been replaying Final Fantasy 12 lately and I recently replayed Kingdom Hearts 1 & 2, so I've had Moogles on the brain lately, ha ha. If it's been 3 years then yes, it's probably time for another colonoscopy. Did they only do one biopsy on your last scope? This time around, ask them to do lots of biopsies. Things like Crohn's and microscopic colitis have "skip patterns" meaning they're patchy, so the more biopsies they take, the better the chance you have of something being found. Good luck!

Carrie, IBS does not cause inflammation. I've heard that some doctors now think that IBS can cause verrrrry mild inflammation, but that's up for debate, and IBS certainly wouldn't cause inflammation to the point where a scope couldn't make it through. That sounds like classic IBD to me!

Thanks Cindy and Bozzy for thinking of me! I'm here, I've been reading, just not always feeling up to giving support right now. I feel bad about that but I need to deal with stupid emotional crap. I don't remember how much I've already said about my friend who died, but he died in a really stupid way that angers me. In a nutshell - he apparently robbed a pharmacy, fled from police, shot at police and rammed cop cars with his car, then fled on foot and broke into an empty house, barricaded himself inside, and when the SWAT team finally came in hours later, he shot & killed himself rather than surrender. In other words, it was all his own stupid fault and he could have prevented all of it if he weren't a drug-addicted idiot. I knew he had some problems with drugs but I didn't think it was this bad. Plus, another friend many years ago died while saving this friend's life (in a house fire) - if someone died saving your life, wouldn't you want to honor that person by living well, rather than by squandering and then ending your life? I'm just *so* angry at him for going this way - and now he's gone and I can't yell at him or talk sense into him. AND it's re-hashing a lot of the emotions I went through with my other friend who died in the house fire! These 2 guys were best friends, one died a hero very nobly and the other died a loser and a coward. But they both died way too young (at 19 and at 33). It's just a stupid senseless frustrating situation and obviously I still have a lot of emotions to deal with. I'll be around sporadically, and I am reading - just not always posting because I'm not in a very good mindset right now. I hope that better explains why I'm not able to be around as much right now. It's a terrible situation and there's really nothing I can do to make it better, and it's hard to deal with. I've known this guy since like 7th grade so we've been friends for like 20 years - he's smart, funny, just a wicked sense of humor - and this is so out of character for him to make such poor decisions and act so stupidly. It's hard and I have to deal with it. So that's what I'm going through lately, why I'm not able to be super supportive right now, because I'm mentally & emotionally exhausted from this situation.
 
Moogle33 said:
Hi bozzylozzy,

I'm going to ask my gi doc if he thinks a second colonoscopy can be done. They have been willing to work with me pretty well in the past.
Has your Doctor done a biopsy during your colonoscopy?
My doctor didn't see any inflammation during my colonoscopy, but did a biopsy anyways and found the inflammation a bit deeper in the tissue.
Thank god she did, otherwise I would be nowhere!!!
Click to expand...
Click to expand...
 
Cat I hope you are ok sorry to hear. Go exercising I know that helps you a lot. Keep strong little solider :)
 
Grrr... I think I have a new symptom .-. I have had nausea on and off for a couple years. I usually experience this after eating... its random and mild, but this new nausea is debilitating... it feels like I'm about to have the flu. This has happened a couple of times in the past six months usually when I have a nice day event or vacation. Then I have two days of feeling horrible no energy, body aches, migraines . This is so frustrating! Anybody else have this or know how to make it better? I'm beginning to think I should just stop eating all together... I already skip breakfast and lunch most days just so I can function <.<
 
Pirate, do you take zofran? if not, ask your doctor for zofran. Even my most intractable nausea has been at least lessened to functional when I take the zofran.


The GI's nurse called me back to tell me that the doctor is going to talk to me about a double-balloon endoscopy when I see him next Monday. why not just schedule it?
 
bozzy - I think the insurnace company is looking for more documentation to suppport the new drug. They are already payign for my anti-seizure emds so I think they are trying to figure out why I need so mnay medications now.

Cat, it can be so difficult to udnerstand why someone does something like your friend did. IF he was addicted to drugs, that certainly would explain his behaviror changing. My sister has been on and off drugs since she was 13 and she is a comletely different person on them. She is selfish and rude nad will do things I find it hard to believe she would even do. It is very sad and I feel so badly for you. They just do't consider the effects that can be had on the other people in their lives.
 
waitinggame32,

They did a biopsy during the colonoscopy and it was negative for Crohn's. I will still ask about another scope and possibly taking multiple biopsies.

Cat-a-Tonic,

I've been playing FF 12 lately too. I played through it once before and I'm revisiting it. Sorry to hear about your friend.
 
I got a bit of good news - my GI approved the prep (Prepopik/Pico Salax/Picolax) that I requested, so I don't have to go through Gatorade & Miralax again. Yay :)

Cindy, yeah, my friend was on drugs - but for the longest time he was only an occasional pot user, nothing stronger than that. The news said he robbed the pharmacy of Oxycontin, so apparently he had moved on to stronger stuff more recently. I hate when news articles online allow for comments, because a lot of the comments were like, "One more junkie off the streets, good riddance." I have to restrain myself from responding to them and saying that he was a nice, funny, intelligent guy who went through some bad times and used unfortunate coping methods. Anyway, yes he was a drug user - but that doesn't define who he was, you know? Like how having chronic illness shouldn't define us. It's a part of us but it's not the only part, and not the biggest part either. I'm rambling again, but yeah.

Gabi, I have been hitting the gym - too hard! I'm trying to make myself bleed some more prior to my colonoscopy next week. So I'm pushing my abdominal muscles a lot as that usually triggers the bleeding. So far no blood, but I have 9 days until the scope so I'm determined to pass blood before then.
 
After over 6 months of not eating, losing over 40 pounds and being in constant pain - and newly, nausea - I was just IBS'd. and told that I'm 'just the sort of person that has a terrible reaction to viruses, and probably will always have it'. "it" being extended periods of severe D and weightloss. He said (and I quote) "You're not dead, so that's a good sign". He said the high calprotectin meant nothing.

He said I should just see how I feel over the next few months (on top of the 6 I've already had) and if I still feel bad to call my GP. You could hear my husband holding himself back. I cried.

We had another big earthquake on Friday, with aftershocks aplenty. I'm overwhelmed and not coping.

Apologies - that's all I came here to say; so self-absorbed.

I wish you all love and hugs.
xLT
 
:((((( not good!!!! In such severe pain today I was nearly screaming. Been on the loo all morning :( I have now an a appointment for the 12th of Sept at The University of Georgetown if I hadn't said already. Since becoming ill I've lost 20/21 lbs so far. I managed to stabilize my weight but now the pain is so severe I can barely eat and everyday my weight is decreasing.

Hope everyone is doing better today, I wish whatever I had/we had was a person because I would kick the s**t out of it (no pun intended) -___- ha x
 
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Be careful Cat u don't want to do damage you are sick enough. Does anyone ever get the strange feeling like your bowels are stuck to your abdominal wall? I feel like mine are all the time.
Having a bad day and the tremor is so bad with my make up and all on its the only thing that gives me away :(
The pain is also so bad I can't sleep with out my sleeping tablets and the fatigue the past week has be horrible.
Life just gets better :/
 
BB I hope you start to feel better :( I lost about 18 lbs before I managed to stabilize it. The only way is for me to force myself to eat chicken and other "normal" food. it hurts so much to eat, but that pain eventually passes. I thought I was even gaining weight, but I dropped back down again this morning. I know this is kind of gross, but I think the meat chunks are holding up the party which is letting my body absorb more nutrients before it gets pushed out the other end.


and my reflux is ridiculous today. ugh. it hasn't been this bad in more than a year. wtf, body.
 
I agree with Carrie630, sometimes you need to eat what you can even if it doesn't feel good. I'm starting to develop a slight phobia of eating which isn't good. So I just eat three meals a day and try to make it low fat, low fiber. I'll snack in between meals with something light like a bowl of chex cereal.

Currently taking Elavil which is supposed to be constipating. It helps me sleep, so I'm digging that.
 
Cat - I do understand what you mean. Tose online sites that allow comments only cause trouble because people will say things onlin that they would never say to someone's face. The comments that people post show they think very little of the people who are affected by such tragedies. I'm sorry that such terrible things are being said where you can read them. Just remember the guy you knew and don't dwell o nthe fact that his life ended in suc ha tragic way.

BB, Carrie, Gabby, Lenatilde, and Moogle- sounds like everyone is having a very bad week! It sucks that everyone is in so muc pai and having a hard tie eating. I feel so badly for all of you. Hang in there guys, hugs to all!
 
Hello, just wondering if anyone here is living in Brisbane, Australia and could recommend a GI or CRS.
Thanks.
 
I did try and eat yesterday, I eat hummus and non salted pretzels as normally I'm fine with that long as I don't go mental lol but it hurt being in my tummy. I even tried drinking a lot of the chocolate soya milk I have but even that hurt.

I went out on Sat and had a bit errr too much to drink, now I was getting bad pains before but I think because I threw up everywhere it may of made it worse? But funny enough the next day my tummy wasn't bad. I dunno this whole life change is a struggle, I am so bad for doing as I'm told but I have been trying, I guess I'm still learning so I'm going to slip up.

Currently having bad pains again.

Sending hugs and kissys to everyone and <3 you all xxx
 
I'm a mess today. Massive headache and the guts are pretty unhappy. Cramps, nausea, d - yuck. Hubby and I had, not really a fight, but yet another "discussion" about money this morning. I can't buy my prep until he gets paid tomorrow and from what I've read, the Prepopik stuff costs like $50ish even with insurance. Hubby works 1 day a week for minimum wage, so his check is usually in the $50-60 dollar range each week and I told him I have to spend his whole paycheck on prep (so we still can't buy anything fun and can barely afford to buy necessary stuff like food/gas etc). He got mad because he felt like I was calling him a loser or whatever and then he just kind of shut down and got depressed (he wants a better job but can't find one). I was already in a terrible mood because I feel like crap, so that was just great.

Still depressed about my friend too. We had a mutual friend who died at age 19, and this situation has basically brought back a lot of the grief & emotions I went through when that friend died. For some reason last night I suddenly remembered that my 19 year old friend was mad at me when he died and that re-upset me all over again. So my mood is very low because of that & because of hubby/money and because I feel like crap. It's just the neverending pity party at Cat's house lately.
 
Hey everyone you will never believe it! And you will never believe that I am happy!! My doctor started me on steroids! Finally after 16 months of being sick she started me on them. Azothyaprine to follow from my GI she said.
Although I am a little scared can anyone give me some advice or warnings.
It's called budesonide 3mg 3 times a day xx
 
Gabi, I was on budesonide (Entocort is the brand name) for about 7 months, and it put me into remission. :) It can take a few weeks to kick in, up to a month I think. For me, it took just over a week for me to start feeling noticeably better while on them.

You're taking 3 pills, 3 times a day? I started at 3 pills too, but I was instructed to take them all at once, first thing in the morning. Steroids can make you kind of hyper/energetic, so I was told that it's best to take them right when you wake up - that way they've sort worn off by bedtime and hopefully you can sleep okay without feeling too wired to sleep. So if taking them 3 times a day isn't going so well in terms of you being able to fall & stay asleep, I would ask your doc about taking all 3 pills at once right away in the mornings.

I hope you start to feel better soon! I'm so glad to hear a happy update from you!
 
I think I screwed up. I never should have eaten those meats and green beans. I'm in pain and stopped up with these rocks.. I've never seen anything so dry, really. rocks. they're slowly coming out, but omg it hurts. And I still have to do those two stool samples!

Yesterday I also screwed up (a little bit). I got some sushi and tempura. I loved most of the sushi. I got some fancy roll, and I couldn't eat it. too much spice (pepper, wasabi, spicy mayo, eel sauce, etc). I had one piece of chicken tempura. Anyway.. I didn't feel so well a little while later, not in the normal way which was also happening, but in the, uh oh what did I do kind of way.. Then I got a migraine. it was so terrible I had to give in and take a fiorinal which I hate to do because it has an NSAID in it. I hadn't had one since June sometime before last night.

All that rambling to basically say, yeah, I'm going back on my potato diet. it's a good thing I like potatoes. I know Kelly was really happy that we were eating together again, and I think I can still keep that up as long as my scent aversion stays under control. I feel so bad about how depressed she is. This is taking a definite toll on her, and it's difficult. She doesn't have health insurance and has to do sliding scale care. Her "rating" appointment is this week. It's a tough situation. if I put her on my medical plan then my total out of pocket will likely go up. Right now I hit my maximum out of pocket most years, but I think it doubles if I add Kelly. It still might happen depending on how those insurance exchanges end up here in Ohio.
 
Carrie, do you think you're obstructed or partially obstructed? I'm sure you already know this, but please go to the ER if anything like projectile vomiting or horrendous pain starts happening. I've never had an obstruction myself (knock on wood) but I've read that it's apparently not possible to straighten your legs if you have a total obstruction? So watch out for those signs and go get checked out if it seems like an obstruction.

I love the potato diet too. Between potato chips, mashed potatoes, and baked sweet potatoes (with brown sugar, yummm), I could probably live happily for quite some time with just those and nothing else. In a bad flare, potato chips are one of my staple go-to foods. They never seem to cause me trouble, I need the calories when I'm flaring badly and I need the sodium too. Sweet potatoes are good too because they have potassium - I seem to lose sodium super fast when I'm having a lot of d, and I lose potassium fairly easily too. I just can't hold on to my electrolytes very well. I'm rambling now, but I'm eating bananas (risky for me as they seem to cause reflux & pain) and I just bought some sweet potatoes that I'll eat soon too - trying to get my potassium level up a bit before I prep next week, as I know I'll lose sodium & potassium from prep.

In case you guys haven't noticed, I'm posting a bit more today. I'm feeling yucky physically (massive sinus headache and guts are a crampy mess) but I'm feeling somewhat better mentally & emotionally. I feel like I hit a low last night and had some wicked grief, but getting that out seemed to help and I am doing better today. I'll try to be around the forum a bit more but of course it all depends on how I'm feeling. I'll definitely be around the forum next week, as I'm prepping on Tues and have my scope on Wed. I'm very curious about this fancy new prep I'll be doing, and I hope it isn't too harsh on my system.
 
Sorry you're not feeling well Carrie. Lately, I've been addicted to baked lays chips. And roasted potatoes are my go to side dish most nights. I don't feel good eating anything fried. I love tempura too so that's frustrating.

Glad you are posting more Cat. I know you had some rough events happening lately.

I'm having a pretty good day. I'm lucky that my stomach is chilling out. I took an imodium last weekend. It worked too good. Stomach has been frozen up since Sunday. I know my stomach is plotting revenge on me right now though. :voodoo:
 
I don't think I'm any more obstructed than I have been, assuming a structure or something. I hope. I think I could be impacted? How ridiculous to go straight from diarrhea to an impaction. We will see. I'm bleeding bright red when I try to go. Not a large amount. I'm hoping something happens tonight so that I don't have to consider miralax.
 
Yea Cat 3 tablets 3 times a day. Is it safe to take them all at once because I have awful sleeping problems and can only sleep on a strong sleeping tablet.
I've suddenly gone from being so happy now back to fear back to shutting down emotions and going back into my own world. What of they don't work? Will they try me with something else or will the take back their diagnosis and leave me back to square one. I can't go back there. I don't know of she try another on if this doesn't work before quitting but she kind of have me the impression that she would use this as another diagnostic tool. It's all mind messing and I don't know what the doctors want of me any more or what the hell did they not do this 16months ago. I'm never happy for too long!!
 
Gabi, where is your inflammation located, do you know? Colon or terminal ileum? Budesonide primarily works on those areas - so if your inflammation is higher up in the small intestine then Budesonide probably won't do much. But if it's in the colon or the TI then it should work. It's milder than prednisone as it isn't systemic, so give it time to work. Like I said, it can take a few weeks sometimes, so don't get discouraged if you don't feel it kicking in right away. And I think it would probably be fine to take all 3 pills at once - check with your doc to be sure, but I always took mine all 3 pills together first thing in the morning.

For what it's worth, I don't know where my inflammation is primarily located, but I would guess it's in the TI (I get pain in the lower-right which is where the TI is located - near where the appendix is). Budesonide worked great for me. It took some time to get me into remission, but it did the job. I hope it works for you too. Good luck and keep me posted on how it's going!

Carrie, how are you today? Any better? Did you have to resort to miralax? I'm trying to remember, you see your GI on Monday, right? And I think you said he's going to discuss possibly doing a double-balloon endoscopy on you? If so, good luck! I haven't had a DBE myself (I don't think they're done very often) but I know it's a good diagnostic tool. When my hubby had kidney stone laser surgery, they let me go see him in the recovery area after he was done. Apparently they put the kidney stone people in the same recovery area as the colonoscopy people and also the DBE people. I could hear, in the bed next to hubby, a lady had just had a DBE and her doctor told her she had Crohn's and that the biopsies would confirm. I remember being so jealous of her - why did she get to have a DBE but I didn't, and gosh it seemed so easy and straightforward for her to get a diagnosis! (I have no idea of her history of course, she could have had a long hard road before the DBE.) I just remember listening more to this lady than to my hubby. Anyway, that's my one experience with DBE, I heard somebody else get diagnosed because of it.
 
no miralax, stuff has started moving this morning. I'm ridiculously nauseous though surprisingly I haven't vomited. I had a few more rock hard stool last night, but stuff today has been a little softer. I feel like I'll probably get back to normal before the end of the day. I just had two movements, and I can feel a third on its way.

The doctor finally shared the report from my ct enterography. I have a focal sclerosis on my iliac crest and degenerative disk disease in one of my vertebrae. just falling apart over here!

eta: I still have to finish my stool tests. I don't think I should give him the hard stuff, plus the hard stuff caused bleeding that the regular doesn't. so hopefully I'll finish that one today! oy
 
Hello! I’ve been reading some of the posts on here over the last few days and impressed with the people on here. This seems to be a great group with a lot of good people.

This is the first time I’ve ever posted in a forum but I’m itching to ask your opinions. For the past couple of years I’ve had some rashes that have come and gone that I’ve never really paid much attention to. About 4 months ago a bad rash broke out on my face and my joints (knuckles, wrists, elbows, shoulders, hips, knees) have really started bothering me. I’ve also noticed that my stomach is distended, I’ve gained weight and I’m having trouble going to the bathroom. I’ve never had trouble going to the bathroom in my life since I have IBS and usually all I need to do is eat a little ice cream and I’m all cleaned out. (Sorry if I’m being gross) Then about 2 months ago I started having a lot of abdominal pain and I’ve noticed now that it’s usually when I eat solid food or drink caffeine. If I have something that doesn’t agree with me my insides feel like they’ve caught fire. My stomach and my back burn and I’ll have a few points in my stomach where it’s a sharp pain. A couple of weeks ago I woke up in the middle of the night with intense pain in my stomach and back and then I had “D” from 2am until noon the next day; probably 10x and I felt much better afterwards. I’ve had a colonoscopy that’s come back normal and am getting ready to have the pill cam test next week. I also noticed after I did the prep for the Colonoscopy that I felt much better for a few days before the abdominal pain stared coming back even though I was having regular bowel movements for a while. I’ve also started experiencing a lot of lightheadedness, fatigue and trouble concentrating. The doctor seems to be leaning towards Crohn’s but I’ve never heard of anyone describe their pain this way. Does this sound familiar to anyone? (I’ve also tested negative for Lupus, thyroid issues and Celiac)
 
I've still got the rash but they gave me a steroid cream to use whenever it breaks out which helps a lot but I don't know what's making it break out. I've gone to my general doctor, a dermatologist, a GI specialist and I also have an appointment with a rheumatologist in October that was scheduled before the abdominal pain started.
 
I'm guessing they've done different blood tests on you? have they biopsied the rashes at all? have they checked your allergic response? do you have other changes that have happened to your skin? in that vein .. any changes to your allergies or how severely you react to them? have they tested your hormone levels? adrenals? have they looked into carcinoid or anything like that?
 
Carrie630 have you considered medical school? I'm getting the impression you've gone through so many tests you could easily become a doctor yourself. :)

They've done a lot of different blood tests (not sure what they all were) and they've all come back normal. The biopsy on my face came back as possible contact dermatitis but not sure what the cause is it's been so long and I've switched laundry detergent, soaps, etc. The first time I noticed the rash on my face was a year and a half ago when I had what I thought was an allergic reaction to something or food poisoning. I had "D" and vomiting all night and that's the first time the rash showed up on my face. I've had it off and on ever since without any other issues to accompany it until now. I'm not sure if they checked hormone levels, adrenals or anything else. I did have a CT scan which found a mass on/near my right ovary then had a follow up ultrasound that didn't find anything. :/
 
Gabi said:
Hey everyone you will never believe it! And you will never believe that I am happy!! My doctor started me on steroids! Finally after 16 months of being sick she started me on them. Azothyaprine to follow from my GI she said.
Although I am a little scared can anyone give me some advice or warnings.
It's called budesonide 3mg 3 times a day xx
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Brilliant news!!

What's prompted this decision?

Steroids work so fast. I was on prednisolone and I felt 'normal' within a few days. Side effects suck but hopefully since you're on budesonide you'll escape most of them :)
 
Ugh! Cat is angry now! My GI emailed me 2 days ago and said he could send over the Prepopik prescription. Well, I just went to my pharmacy to pick it up, but they haven't gotten it yet. Nothing! I have to do prep in 5 days and my pharmacy hasn't even gotten my prep prescription yet - ahhh! I was going to call my GI from right there in the pharmacy, but my cellphone was dead (I swear I just charged the stupid thing too) so that made me even angrier. Got to another phone, called his office and left a message and also sent him an urgent email - hopefully he responds to one of those and soon! I *so* do not want to do the Miralax prep again, but I'm going to have to if he doesn't get the Prepopik prescription to my pharmacy in time. Pretty upset about the thought that I might have to do Miralax again instead! Not a happy camper right now. I know he's busy, but come on! You don't tell someone they can have a prescription for something, and then not actually write the prescription. It takes like 2 seconds to do it in the computer, so it's not like he didn't have time - he just forgot. That's just great.
 
Cat - I wish that I could be there to give you a hug in person for all that you are going through. Being low on money sucks so much whne you have important things that you need to buy! Especially when so much is going on with your health. The physical and mental stress you are going through right now is an awful lot to deal with. I almost can't believe you aren't having any bleeding. hang in there and stay strong kid, we're thinking of you and pulling for you. <3
 
It's frustrating waiting on doctors isn't it? I had to wait a week for my fat malabsorption test results. I finally got it today and it was normal. That's good news, but I know fat will give me issues if it's too much. Still gonna be careful with that. I'm not about to go scarf down a pizza! haha.
 
I wanted to be a surgeon when I was growing up. I gave up on medical school sometime in high school because of malpractice stuff. I was still looking into becoming a geneticist (this was in 1992) and probably would have stuck with that if the chair of the biology department at my university wasn't such a jerk. He had it out for me, just like his wife did when I was in grade school. It was very very bizarre. ok maybe he had it out for me because his wife was fired, but his wife wouldn't have been fired if she'd done her job. that's a long story, she hid my work, told me I was too stupid to amount to anything, that I'd never get into the college prep high school I got into, etc. I tried taking one of his classes, but I had to drop it. He was doing everything he could to fail me. I graduated with a degree in computer science. I went back to school in 2001 briefly for chemistry, but had to go back to work. I couldn't afford to be in school. I know this is going to sound really strange, but I was reading abnormal psychology textbooks and science textbooks when I was a little kid. I always read the weird stuff... like the dictionary. mom couldn't ground me because I already spent most of my free time reading in my bedroom.

Anna, you should try to find out what tests you've been given. When you say you've tested negative for lupus, what does that mean? Not everyone with the SLE form of lupus will have positive ANA titers. There's also a cutaneous form of lupus that is diagnosed by biopsy. The real reason why I asked more about the rash was because there is a umbrella disorder called mastocytosis. mast cells are part of what amps up when you are experiencing allergies. If you have a problem where your mast cells activate randomly it can seem like you're having allergic reactions when you aren't. There's systemic masto, but it can also be localized. It's just one of the many rare diseases.. they all kind of blur together after a while with their similar symptoms. And if you're anything like me you never tell the nurse or doctor all your "symptoms". there are just too many, what's important and what isn't, right?

*hugs* Cat I hope he straightens out your prep quickly!
 
Thanks Cindy. :) Yeah, this time of year we're always more broke than usual because a lot of bills seem to come due in August - both of our car registration/license plate renewals come due in August, and hubby's car insurance also comes due in August. I have more doctor bills than usual right now because I just had that MRI last month (even after insurance I still have to pay about $500 out of pocket), oh and we've both had car repairs recently too. So we're dead broke! :( We usually like to go down to the Renaissance Faire on Labor day, but we just can't afford to go this year. That sucks, I always look foward to it, but with gas and admission and food and everything, it's way too expensive for us to go this year. Hopefully next year!

Hah. Kind of ironic, or maybe just sad - we've repaired our cars, paid insurance on our cars, renewed license plates for our cars, so we're totally road-worthy, but now can't afford to actually go anywhere! :p Gotta find the humor in the siuation, right? ;)
 
Steroid update-
I don't feel so good is it ment to make you this nauseated?! I always feel ill but omg! Ease tell me this gets better guys I feel like stopping them. Is this normal/natural. Such a sore head too and very dizzy. Definitely no euphoria why do I always get the annoying side effects lol!!
I don't know where my inflammation is to be honest but I think it's in TI as that's where I get the pain too. If it isn't will these steroids not work Cat?
 
Gabi, yes, they can cause nausea and dizziness. The side effects should pass fairly soon - I had some mild dizziness from Budesonide that lasted maybe a few weeks. Call your doctor and ask for something for the nausea - Zofran (Ondansetron) is my go-to nausea med, it works great and fast. I personally didn't experience nausea as a side effect of Budesonide, but I did get dizziness and also wicked headaches. My GI put me on medication for the headaches and then I felt much better. Hopefully this is just your body adjusting and you'll feel better soon - but call your doctor about the nausea and ask if they can prescribe something for it.

I didn't get euphoria from Budesonide either, sadly. I only got that side effect from pred. Budesonide made me feel human again, whereas pred made me feel super-human. Pred is stronger, but like lsgs said, pred carries even more risk of side effects with it - it sounds like you're having bad enough side effects with the Budesonide! Feel better soon and let us know what your doctor says about the nausea.

Back on the subject of my finances - hubby got a paycheck in the mail today for a freelance project he did weeks ago! We had almost forgotten about it. It's such a relief! I'm like, let's go shopping for groceries! :p We're still going to skip the Renaissance Faire to save some cash, but it's exciting to be able to buy necessities. My car is getting low on gas and we're running low on toilet paper and I was starting to wonder how I was going to afford even that stuff - as we all know, running out of TP just cannot happen! Now I can stock up and buy the big 24-pack. :D
 
Thank you
I'm on ondasatron and domperadone for the sickness and still there. I'm afraid if I say I'm struggling she will take me off them. She wants me back in 7 days to monitor me anyway but these side effects are bearable if I can get less D and less pain.

It's amazing when you can go get the groceries such a luxury some people don't know how lucky they are. In terms of loo roll I would need to by shares in a company or something I use that much!!! My mum always stocks up if I'm coming to stay!!! Embarrassing!!
 
I know, I think we should all start a toilet paper company. :p It'd be super soft and not irritating at all, and it'd have little puzzles or jokes written on it too so that you'd have something to do in the bathroom. Ha ha! Yeah, I really need to stock up on TP. I only have like 10 rolls left, that's not enough to get me through prep! Eek!

Speaking of prep, I still haven't heard back from my GI yet. I'm getting really anxious now, I have to do prep in 4 days - if he doesn't write the prescription for the Prepopik like he said he would, then I'm going to be stuck doing Miralax again. Yuck! I'll probably call his office again soon if I don't hear anything. I wonder what the odds are that he checks his messages over the weekends? Because if I don't get ahold of him today, I probably won't get ahold of him over the weekend either, and then I'm going to be scrambling on Monday to figure something out for my prep day on Tuesday! Ahh, freaking out just a little bit!
 
Oh my, ha ha. My GI's office just called me - when I saw their # pop up on my phone, I was so excited! I thought they were going to say he sent the prep prescription over to the pharmacy!

But nope. It was some brand new girl from his office, calling to confirm my colonoscopy appointment, and she was kind of unintentionally hilarious. She asked if I understood how to do prep - I was like, yeah, I've done it twice before. She said, "Awesome. But okay, so you understand about no food and clear liquids and stuff?" Um, I just said I did. :p She used the word "Awesome" like 8 more times after that too. Since I had her on the phone, I asked her to contact my GI again about writing my Prepopik prescription already. I had to spell Prepopik for her about 4 times before she got it. Then, she had to go over the list of meds I'm on. The poor silly thing couldn't even pronounce "mesalamine". She was like, "Mes... lime...?" I was like, yeah, I take meslime. :p She was absolutely clueless, so let's see how badly she screws up the message to my GI about Prepopik. I'm sure she'll be like, "Uh, Dr, can you write a prescription for Pre... popsicles? Awesome." Ha ha. I already called & emailed him about it yesterday so I'm not too worried about this message getting screwed up. But yeah, it was sadly hilarious... or maybe I should say awesome. ;)
 
Gabi said:
Thank you
I'm on ondasatron and domperadone for the sickness and still there. I'm afraid if I say I'm struggling she will take me off them. She wants me back in 7 days to monitor me anyway but these side effects are bearable if I can get less D and less pain.

It's amazing when you can go get the groceries such a luxury some people don't know how lucky they are. In terms of loo roll I would need to by shares in a company or something I use that much!!! My mum always stocks up if I'm coming to stay!!! Embarrassing!!
Click to expand...

I totally agree. When I went on steroids I couldn't actually believe what normal life was like, just to do things and not even think about it or plan your meals around what you're doing. I experienced nausea on steroids, nothing terrible but I had anti-nausea meds on hand anyway. It used to be every day at 3 o'clock the nausea would come on. It will get better as you taper down. I never had headaches but did have dizziness and horrible heart palpitations.

I am relapsing hard off steroids :( I've spent all day in the bathroom, bleeding, passing recognisable pieces of food, all while out with my mother and father in law trying to appear normal. We went for a meal and I was constantly in the bathroom, it was so embarrassing. Then the pain hit! Don't even know what to do as I have lost all faith in doctors.
 
Haha cat! Love it.. you know when I had my chiari surgery.. I had just been taken into HDU and there was nurse in her late 50's who was at the computer at the end of my bed, updating my info and medications on the new system.


She was getting frustrated because the system wouldnt accept "ibuprofen".. many yorkshire folks call it "ibrufen" and not ibuprofen.. and she was spelling it the way she said it. You would think as a nurse.. you would know the correct spelling, especially as it is a very basic over the counter medication haha.

Not to mention I said I needed a wee.. she gave me a bed pan and left the curtains shut (and I told her "I cant physically wee") next thing I can hear her saying to the other staff "bye" and she was finishing her shift and went!!!
The next nurse found me and did a bladder scan.. completely full and in pain. But because of the anaesthesia. . I couldnt wee! I cant believe how thick she was.. and that she left me there unable to move 2hrs after surgery.

Where do they find these people!?!?
 
Oh Bozzy, what an awful nurse! She really left you hanging, and I agree that sounds like gross incompetence if a nurse can't even spell "ibuprofen." The girl I talked to was not a nurse, but I'm unsure if she was a PA or if she was a receptionist. If she was a PA, she needs to go back to school! :p I could excuse a receptionist for not being able to pronounce mesalamine, but a PA in a GI clinic? They should really know how to say something like that which they probably have to say 100 times a day. She did tell me she was new, so I'm thinking maybe it was her first day on the job! :p I'm thinking she is a PA, because they don't usually let the receptionists go over a patient's medications. And that's kind of scary!

It's noon here and I still have heard nothing from my GI about the Prepopik. The stress is not doing good things to my gut, but I'm trying to look on the bright side - if this prep situation stresses me out enough, I'll have enough d that I'll just empty on my own and won't even need to drink a laxative and the situation will resolve itself! :p Ha ha.
 
Yeah like you say.. stress will take place over the prep anyway. Are you getting nervous about the scope? I really really hope it gives some answers. Ill have my fingers crossed for you!

I was really annoyed at the time that nurse was around.. but now I just laugh when I think about it. I am so surprised I didnt have a catheter inserted after surgery.. because after the dilemma of not being able to wee.. I then had to have one inserted. But nevermind.. recovery has gone well anyway :) im coming off the propranolol now to see if the surgery helped with migraines.

I became an auntie on tuesday!! And she is so adorable.. I want to steal her! Lol.. we have just been round there this evening, she has made me all broody again. :)
 
Thanks guys you are so positive and lovely. Omg we could all have a new company called IBD roll slogan for when the big D hits lol!
Cat when is your colonoscopy? Do you know how regular they usually are when you have crohns?

The mood is pretty bad today but I don't know if its the steriods of just the ridiculous pain. Trying not to punch things-so not like me!!!
Thanks Isgs for advice.
Nurses can be awful they really really need to rethink their career path. Really it isn't a career it's an occupation and don't get me wrong some nurses can be amazing but when they act like you are an idiot when really they are the ignorant ones you just want to scream.
One nurse said to me do you want to be sick....I nearly vomited (get sick anyway as always) but OMG what ignorance. Because I'm not 90 years old and not in a wheel chair I think they think I need some sort of medical help like mentally!!
Whe. I become a doctor (in pre-med school) I wi meet tret anyone like this ever. Mayr we be sick for a reson? Some days I don't see it like this at all!!! I would lie to specialise in GI but I think I would just feel too bad for my patients and probably cry every time they came in!!
 
Bozzy, I am getting nervous for the scope. I'm one of those people who like to be 100% prepared for big events (such as prep) so I've been distracting myself by getting all ready. This weekend I'm going to clean my bathroom, pick out which scented candles I'd like to light, get out my creams and wipes, load up my kindle with games and books, etc. But it's driving me absolutely nuts that I still don't know which prep I'm going to do! I know I won't be left without prep, I can get Miralax over the counter if need be, but I hate doing things last minute and not being prepared. I'm sure I'm just OCD, but not having a firm plan is just wigging me out!

And of course I'm nervous that the scope won't find anything and will be totally normal. I'm trying to make myself bleed so that'll show on the scope - riding my bike in the past has made me bleed pretty much every time. But this week I've been on 2 long bike rides and I'm having perfect, formed stools with no blood whatsoever! :p So that's driving me nuts too! I do have some abdominal pain/soreness, but I think it's muscle soreness rather than my guts being upset. Not totally sure though. Going to try to do 2 more bike rides before the scope so hopefully some blood will come out of me already! It's ridiculous that when I want to, I can't make myself bleed. I'm going to get abs of steel before blood comes out of me at this rate!

Aw, a new niece for you, how sweet. :) I'm getting a new niece or nephew in October myself - I already have 2 nieces and 2 nephews so this will be #5. My sis-in-law wants this one to be a girl so I'm hoping for a girl for her (and honestly I like my nieces better than my nephews, I just don't understand boys!). Sis-in-law's oldest turns 10 in September, so she'll have 5 kids ranging from ages 0 to 10! And she has a small little house with only 3 bedrooms, ha ha. I don't know where she's going to put this kid, they're already crammed in there like sardines!

Gabi, my colonoscopy is on Wednesday, so only 5 days away. My last colonoscopy was in April 2010, so about 3.5 years ago. I think it depends on how active your IBD is, that determines how often you have a colonoscopy. If it's active I think they recommend once every year? And if it's in remission then it's once every few years, I can't remember for sure but I want to say once every 3 years? Check with your doctor to be sure because I don't know if I'm remembering accurately or not.

And I didn't know you're pre-med, that's great. :) I like hearing when people who are ill become doctors or join the medical field in some way, because for one thing it shows that those of us with illnesses can do anything we want in spite of our health limitations, and also because I think us sick folks are much more empathetic and understanding. I know you won't ever send a patient away telling them it's IBS and that they should deal with stress better or that it's all in their head!

It's close to 3:30 and I still haven't heard from my GI. But I remembered that once he called me at like 9 PM, so he does check his messages sometimes even late into the evening. So, he may get back to me tonight or this weekend. I'm not holding out much hope, but there is a chance. If I don't hear from him by Monday evening then I'm going to go buy some stupid icky Miralax. Yuck, I so do not want to resort to that though! I just know I'll get dehydrated again, and that's absolutely miserable. I refuse to do Golytely or Moviprep though, so it's looking more and more like dehydration city for me. :(
 
cat - I'm hoping that at this point, you did hear from the doc last night! I can understand your frustration. wth?
Gabi, as someone who works in the medical field I find it frustrating when others aren't competent or don't do their job well. the patient should always come first, no matter what. I always tell students, if you are going into the medical field for the money, you might as well quit right now. The only reason to do it is if you want to help people. I loved doing patient work and the feeling I got when I knew that I made a difference in someone's life. Now, as a supervisor, I feel it's very important to be sure that all of my staff sees the patient as the main focus of the job.
 
Cindy, I do think some medical professionals lose sight of why they became doctors in the first place. Just like with teachers or other people in positions of authority, we try to be on our best behavior when we see our doctors. Sometimes they need to be shocked out of complacency with a patient losing their shit, but no one wants to be that patient, you know?
then you get people like my prior GI who say, eh, too hard, it must be in your head. I have to wonder why he got into the medical field. Maybe to help the easy cases? :p
 
Cindy, nope, not a word from my GI yet. :( I sent another email but no word back yet. Trying not to stress - just got back from a long bike ride so too tired right now to stress! :p Have a long list of things to do this weekend to, want to get my house clean & comfortable for my prep, also have to do some yard work, etc. And, um, I really have to beat this boss level in Final Fantasy 12. :D I forgot how long this game is!

Moogle, you said you're replaying FF 12 as well, right? How far are you? I'm like 110 hours into the game, my characters are all on level 58, and I'm attempting to beat "the mystery man on the bridge". He's still too difficult for me though I think so back to level grinding! :p

I'm sure there are some doctors who get into it just for the money - I've seen a few of them myself I think! There was one time I had to go to urgent care for IV fluids, and it was like 8:30 at night - the urgent care clinic closes at 9 PM. I got yelled at by a doctor and a nurse for coming in so late and basically being annoying to them because they couldn't go home right at closing time, they had the inconvenience of caring for me. They didn't care one shred that I was feeling miserable and needed help, they just wanted to go home. They made it clear that I, as a patient, was not their priority. I really dislike doctors like that. Not sure if they were in it for the money, but they didn't seem to be in it for helping people. And I'm sure they had a long day, but I was crying because I felt so sick - they were still really cold and mean to me.
 
I have had the pleasure of having words with other staff who treated patients that way. iget a good feeling when I know I've helped someone, even just by giving comfort or listening . It is nonsensical to me whe na doctor gets into it for the money, they have to put in so much of their time for it.

Funny you guys are into FF, the hubs and I are playing gears of War on INsane. it's crazy hard!
 
Hey guys
Isgs to answer your post the fecal calprotetin came back elevated twice so they think its a good enough reason and the incontanance seemed to be what spared my doctor on. Still need to see my GI he's going to put me on azo so I'm kind of hoping this will help although so far not so good. Got a sinus infection annoying and my hair is falling out in larger clumps than normal :/
Does anyone have any hints on how to stop the food cravings? They are crazy I find myself waking up at night needing food! I could be doing with putting on about 14lbs but don't wana ballon all of a sudden!
Cat- you already for your colonoscopy? I personally find them horrible but my current GI was kind enough to knock me out the last time. I have had three colonoscopies in the past 6 months not good fun. Someone told methat if you eat very light the day before the prep is a lot easier the next day-although you do get so hungry :(
Trying to sleep without a sleeping tablet. So far it's not working 1am here and I've been in bed since 11.30pm. The pain is too bad to sleep with and if I take a sleeping tablet I'm always afraid of having an accident. So I can't really win!
 
Wish me luck on Monday! I have an appointment with my GI and am going to ask him to request the pathologist do special staining on the biopsies from my colonoscopy to check for Mastocytic Enterocolitis.
 
I saw some discussion about double balloon endoscopy (DBE). I had DBE about 4 years ago. As far as I know, there are NO DBE scopes that can examine the whole small intestine. You can either have a DBE that enters through your mouth and looks at the first several feet of your small intestine, or you can have a DBE that enters through your rectum and exams the final several feet of your small intestine. I had the one that entered through my mouth. It was a lot harder than I expected it to be. Although I was "out" for the procedure, I was intubated, which I didn't know was going to happen until about 5 mins before the procedure. Either the intubation or the DBE itself (or both) led to really bad throat pain for a number of days. I couldn't talk. Also, I had significantly increased abdominal pain for weeks. The doctor said that's not uncommon. And after all of that, I still didn't get a diagnosis. :(
 
Gabi-- Have you considered wearing an adult diaper just so you can sleep without worry? I'm small so I actually can wear Pull-Ups made for kids who wet the bed (the product is called GoodNights in the US), and I've worn those when I've had concerns, such as when traveling while very sick, heading to the hospital for the colonoscopy, etc.

ETA: You can buy this stuff online so you don't have to be embarrassed buying it at a store (not that anyone needs to know who you're buying the product for anyways).
 
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I had a feeling DBE required intubation. The ct scan said the capsule was in distal ileum so maybe they'll go in from behind! I guess I'll find out Monday.
 
My GI finally responded!! :D He emailed and said he's sending the Prepopik prescription over. I'm going to go to the pharmacy in a bit to pick it up. Woot woot, no Miralax for this girl!
 
Gabi said:
Hey guys
Isgs to answer your post the fecal calprotetin came back elevated twice so they think its a good enough reason and the incontanance seemed to be what spared my doctor on. Still need to see my GI he's going to put me on azo so I'm kind of hoping this will help although so far not so good. Got a sinus infection annoying and my hair is falling out in larger clumps than normal :/
Does anyone have any hints on how to stop the food cravings? They are crazy I find myself waking up at night needing food! I could be doing with putting on about 14lbs but don't wana ballon all of a sudden!
Cat- you already for your colonoscopy? I personally find them horrible but my current GI was kind enough to knock me out the last time. I have had three colonoscopies in the past 6 months not good fun. Someone told methat if you eat very light the day before the prep is a lot easier the next day-although you do get so hungry :(
Trying to sleep without a sleeping tablet. So far it's not working 1am here and I've been in bed since 11.30pm. The pain is too bad to sleep with and if I take a sleeping tablet I'm always afraid of having an accident. So I can't really win!
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Thanks for the reply Gabi. So frustrating, mine has been up 3 times this year alone not counting the 2 high ones in 2008 and no one will comment on what it means. One doc has said it means I have IBD but he can't say where. One doc said false positives (!) and one said he didn't know why they were high. So I'm switching to the doc who says it's IBD but no appointment until late November and I am getting sick as hell again :(

The food cravings on steroids are insane. I am three stone heavier and have only managed to lose 4lb since coming off. I don't even know what advice to give. To me it didn't matter if I exercised, if I restricted my food intake or whatever, the weight was going on. My weight was stable until 6m in to my course of pred then I just ballooned. My mum said I looked like I had been blown up with a bike pump! That was pred though, the steroid you're on is supposed to be kinder. I guess just make sure you have loads of fruit and healthy stuff in your house to fill up on. Although I know that steroids are sneaky and have sometimes had me out of the supermarket with a full box of donuts in hand with no idea why I bought them!!!

Are you having trouble sleeping because of the steroids or because of pain/trips to the toilet?

Cat-a-Tonic said:
My GI finally responded!! :D He emailed and said he's sending the Prepopik prescription over. I'm going to go to the pharmacy in a bit to pick it up. Woot woot, no Miralax for this girl!
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I am seriously glad you managed to get your prescription. Picolax for me was a completely painless prep, and very easy to get over. It's a very low volume you have to drink. If I ever have to prep again (after my experience with fleet) I will be demanding picolax!!
 
I was on Entocort (Budesonide) for about 7 months, and I had some pretty strong food cravings too. I had lost about 20 lbs from being so ill, and I gained back about 25 lbs on the Entocort over the course of 7 months. So not too bad, I gained back a little more than I should have, but I didn't balloon or anything. Although I will say, being so sick and losing the weight, I'm sure I was losing muscle & bone mass. Gaining weight on steroids, I seemed to gain it all back as abdominal fat! I had a gross flabby belly which I somewhat lost with exercise but is still there a little bit. I lost the extra 5ish lbs and I'm back to my "healthy" weight again, and exercise has also helped me gain back my muscle mass, so Gabi, hopefully you have a similar experience and can just regain your lost weight and get back to a healthy weight. If you can, I strongly recommend exercise (steroids themselves can rob you of muscle & bone mass too). Feed your body well when the cravings hit, don't just automatically reach for junk food if you can avoid it. I scarfed down a lot of chocolate-flavored rice cakes while on steroids, as they are sweet but low-calorie and relatively healthy.

lsgs, that's good to know about this prep - that seems to be the general consensus of what I've read about it, that it's easy to drink and isn't crazy harsh on the system. Gatorade & Miralax was easy for me to get down in the sense that it didn't taste bad, but I did have to drink a lot (64 oz Gatorade mixed with a full bottle of Miralax), and it was really rough on me and dehydrated me badly. I'm hoping that this Prepopik stuff is easier in that regard, I just don't want to end up on IV fluids again! I'll keep you guys posted - prep day is Tuesday and my scope is first thing Wed morning, so I'll be around on Tues having a prep pity party for myself, and I'll hopefully be coherent enough by Wed afternoon to let you all know how the scope was.
 
I can't wait to here how this prep goes for you. I'm sure I'll have to do another prep soon, and I really don't want the last one o_O
 
Oh dear god I am having absolutely blinding agony right now. I am freaking out. The pain feels like it's in my chest, back, abdomen, everywhere. For the past few days I've been running to and from the bathroom more than usual and sometimes only passing bloody mucus. I knew I was getting worse so had made appt at GP but can't get seen until a week tomorrow. My issue is right now. My husband is away and I'm terrified to go to hospital on my own if necessary. I've necked some painkillers but so far no relief at all. My insides feel like absolute hell. Don't know what to do :(
 
Isgs-- I'm sorry you're feeling so bad! I know that it's no fun going to the hospital alone, but it sounds like you really need to go.

Cat-- I've never heard of Prepopik so please do let us know how you fare with that prep. I hope it goes well!
 
lsgs, I agree with the others, get yourself to the hospital. If you have to go alone and nobody can go with you, and you feel in too much pain to drive, either call an ambulance or take a taxi. That amount of pain sounds really serious! Worried about you. Please update us when you are able to, but in the meantime please go to A&E!

As for my prep, well I've hit yet another snag. :p It's becoming almost funny now! I went to the pharmacy to pick it up. My GI had sent through the prescription... but it turns out Walgreens (or at least the one I go to, as well as all of the ones in my city) does not regularly stock Prepopik. Of course. They're getting it sent in from somewhere and I was told it should be available at my pharmacy by like 1 PM tomorrow. So I'll be getting my prep 24 hours before I need to start drinking it, sheesh! This is just getting way too down to the wire for me. I really, really hope they were telling the truth and that they'll really get it in tomorrow! This is driving me nuts not having it in hand and being able to relax about it!

Chickadee, if you google Pico Salax or Picolax, you should find lots of info. It's called Prepopik here, Pico Salax in Canada, and Picolax in the UK. Not sure why the different names, but it's the exact same product. I've read mostly good things about it in my googling. I'll let you know how it goes (assuming I can definitely get it, hah!). If you do decide to do that prep yourself at some point, make sure your pharmacy carries it and go pick it up early, well before your scope! Oh, and I've read it might be a little pricey, depending on your insurance. I think without insurance it's about $100, and it's supposedly more like $50 with insurance. I'll keep you posted on how much they charge me when I finally do pick it up.
 
Hey guys thanks for all the replies, I find it so reassuring to post here you are all so lovely.

Either pain relief has kicked in or it's improving, pain's still there but not as bad.

I'm such an idiot, I don't know what would happen to my dog if I go to hospital. That worries me! And I don't know if any of you guys are like this but I'm quite secretive about my illness, only my husband has seen me in pain and I don't like people seeing me like that. I could have called my sister to come get me and I know she would, but she has two toddlers and I would feel guilty I was making a fuss. It's so stupid. Do any of you feel like this too?

I am slightly concerned as I have been going about 10 times a day and suddenly this pain starts and I'm only passing mucus for 2 days... Slightly worrying...

Cat we get the prep sent out in the post like a week before, or I've picked it up at hospital before if private. I would hate to have to go pick up my own prep. I don't think I would go, I would wuss out! haha.
 
lsgs, is there a neighbor or someone who has a spare key to your house? If so, hopefully they could go over and feed & let out your dog. I don't like my brother very much, but he has a key to my house & he lives just a few miles away and he loves my dog, and I know he'd come and feed her and let her out to potty if it came down to that. Maybe you could give your sister a spare key just in case this happens again, or in case the pain gets worse again?

With not going for 2 days, and the awful pain, that makes me worried that you might have an obstruction. Have you had any vomiting? Can you straighten your legs? I haven't had an obstruction, but I know vomiting usually occurs with an obstruction (if it can't go out the usual way then it tends to come back up), and I've read that it's difficult or impossible to straighten your legs completely if you're fully obstructed. So keep an eye on it, and please do re-consider going to the hospital if it gets worse again or if you get obstruction-like symptoms.

Personally I am pretty open about my illness. If anything, my family knows the least about it, but that's only because they're pretty much the least supportive. This may sound pretty pathetic, and I guess it is - some of my co-workers in general know more about my illness than my family does. I don't have many friends "in real life" but my friends I do have are all fairly aware of what I have going on. Most of my friends seem to feel awkward when I talk about my illness, so like with my family, I don't tend to say much. My co-workers though, they see me every day and they can often tell when I'm not doing so well, and they will frequently ask how I'm doing, what tests do I have coming up, how are my meds working, etc, and I'm happy to share the less-gross details with them. ;) You guys here and my hubby are the only ones who really get the full gross details though.

We don't get prep sent to us here, most preps in the US are by prescription, so we have to go pick it up at the pharmacy. Prepopik is by prescription, so are things like Golytely and Moviprep. Miralax is not by prescription, you can buy that one OTC. I'm not embarrassed to buy prep at the pharmacy though, I just wish the process was going more smoothly! :p I don't care who knows that I'm going to be on the toilet all night, I just want to have the prep in hand already.

On that subject, I cleaned my whole house and bought more toilet paper today. I got out some nice scented candles and made a playlist of nice music for my ipod and got everything all set so that hopefully my prep will go as smoothly as possible. I even picked out what color nail polish I'm going to paint my nails. :p Did laundry & dishes as well so that I wouldn't have that stuff hanging over my head. Trying to start eating light today too in anticipation of prep - I had cereal for breakfast and ice cream for lunch. :)
 

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