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Crohn's Disease Forum

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Carrie, do your doctors have any plan for getting you well enough to get back to work? More tests, different meds, anything? Did they ever find out what's going on with the narrowed area where the patency capsule got stuck? Are they going to do a DBE from the other end?

I know what you mean about video games. :) I used to play the Sims all the time, it was my go-to sick day game - then my laptop got all wonky and decided that it's not going to let me play the Sims anymore. Last time I tried, it took like 30 mins just for the game to load, then it ran soooooo sloooooow and kept freezing and was basically unplayable. I told my hubby I need a new computer so that I can play the Sims. Oh, and to make matters worse, one day I was playing it on hubby's laptop, but then he took the disc out and put it... somewhere. I searched all over without any luck and he can't remember where he put it. So now I can't play at all on any computer because I don't know where my disc is. Grr! I'm in Sims withdrawal! I need a new computer AND a new game disc now! :(
 
I'm feeling better today too. I wonder if a bug has been going around because my mother had something this weekend too. I tried Questran yesterday for the first time for D. It worked, but I think it's going to be like Imodium with me. I may be backed up for another day or two...didn't even take it today at all.

Speaking of video games, I'm just finishing Final Fantasy XII for the second time, kupo! I have the guide book and I've done almost all the hunts and collected all but one Esper. Way too much free time on my hands lately. :p
 
Moogle, I have heard there's at least one nasty virus going around, so maybe you did have a bug. A friend of mine said on facebook that he wasn't able to keep anything in himself for a few days on end, and he made it sound like he thought it was a virus as opposed to food poisoning. So apparently there is something yucky going around.

Oh, I had been replaying FF12, logged over 100 hours of play time, but then got kind of stuck (needed to level grind more in order to beat "the man on the bridge" hunt) and just got a little bored with it and haven't played in a couple weeks. This is silly, but since I stopped playing FF12, I've started playing Animal Crossing (Wii) again. :p I know it's barely even a game, but like the Sims, it's oddly addictive. It shouldn't be fun but it is. I find myself saying, I should turn this stupid game off... right after I catch this fish and talk to this bear and mail these letters and so on. Cut to an hour later and I'm still playing. I'm determined to catch all the bugs and fish for the museum! And I just got my lighthouse which is the last town upgrade! It's silly and dumb but it's also weirdly fun. :)
 
Cindy - isnt lactulose a mild laxative?? That is what I had after being on a lot of codeine following my surgery (because that caused constipation) but on the tattoo front.. that is nice that the lnes you have mean so much :)

Carrie - I hope your GI contacts you soon to have a plan of action. I do love tattoos.. once you are feeling better and back in work, the money you earn can treat you to completing the tattoo :)

Moogle - what is questran? I hate being backed up... some times its a lot worse than big d :(

Cat - OMG I LOVE LOVE LOVE THE SIMS!! I cant wait for sims 4 coming out next year.. but my laptop freezes all the time with it too. I also love theme hospital :p but I havent played it in a long time... im glad you are doing ok.. and I hope the pentasa works!

Meanwhile.. im feeling fantastic! Just to have no headaches at all.. no fatigue.. no blurred vision or pins and needles is making me feel like a new person! Yeah my joints still ache at times and have the odd rush to the loo. But the sulfasalazine seems to be helping lots :)
Very stressed about money though. As I have only just found out I am only going to be earning £100 a week. Approx £2.30 p/hr . (I was told I was going to get £6.31 p/hr during interview) so I dont know how ill cope over the next year.. what with a mortgage and child care to pay for too. Boo!!
 
Bozzy, I saw that the Sims 4 is coming out soon! I need to get a new computer so that I can play it. :p I really liked the Sims 3 back when I was still able to run it on my computer. My game had a really interesting glitch, the grim reaper sim (the grim sim?) became just a regular person in my town, either that or a townsperson glitched to look just like the grim sim? At any rate, he said his name was "Scot" but he looked just like the grim reaper and he was someone my sim could interact with and she married him, and their sim kids all had jet black skin, hair, everything, like they were silhouettes. It was freaky but cool! Then my computer got a virus and I lost everything and had to re-install all my programs (so I lost my grim sim family), and that's when I started having issues with running the sims and it eventually just became unplayable. :( I can't run games at all on my computer anymore, anything I put into my CD drive just freezes and won't load. I can't even play the first or 2nd Sims games even though they're older and should run fine (my laptop has Windows 7 and it's only like 4 years old). I don't know what that virus did to my computer but I can't seem to fix it so I need a new computer I guess. 4 years old is fairly old for a computer anyway so it's probably time anyway. Now I just need to come up with some money for a new computer, hah.

Wow, you're having a good day too? It sounds like we're all synchronized, we're all having a good day today! What's up with that? I'm sorry to hear about the money issues though, I can definitely relate. My hubby works about 1 day per week in the costume shop, and he makes minimum wage, so he ends up bringing home only about $50 to $60 per week from that job. He also sells stuff on etsy so he makes maybe $100 a month doing that. His freelance jobs have been few and far between lately, he'll maybe get a $500 check every 3 or 4 months from freelance work. So yeah, all in all, he's hardly making any money either and we're pretty poor most of the time. I work full time but it's hard when you have a mortgage and only one person in the house is bringing in any significant money (and I don't have the energy to get a 2nd job with my bad health, I just don't think I could do it). We don't have child care bills obviously, but I do have doctor bills and expensive prescriptions (Pentasa is $75 a month and Delzicol was the same) so once the bills are paid for, we've got basically no money left over. And I know I've talked about this before, but on those odd times when we do have a bit of extra money, I go crazy with grocery shopping. Like I'm a squirrel stocking up my nuts for winter, because I don't know if we'll have grocery money later on. Anyway, my long rambly point is, yes, it's hard to live on such little money, but you can do it. We got rid of cable TV and we no longer have a home phone, just cell phones, to save some money on bills. I buy most of my clothes at thrift shops (you can find some seriously cute stuff at thrift shops for really cheap) and we belong to the most inexpensive gym in town (only $10 per month!). We cook at home a lot instead of going out to eat. There's a lot of stuff like that you can do to save money and still live an okay life without feeling too deprived. You can do it!
 
Aww he grim sim family sound cool! Gutted you lost that. I actually think the newer sims are REALLY glitchy. Sims3 was fine.. but then I added sims3 ambitions, and it totally ruined my game. I also have the sims 3 pets and the latest one - island paradise. I wanted the one with vampires and witches.. but I read they have zombies that randomly appear.. and zombies freak me out big time :(

Haha we must be synchronized like ladies and their periods :p
 
I had only ever intalled the base game of Sims 3, glad I never got the expansions because the base game was glitchy enough for me as it was! (I had other glitches besides the grim sim - my sim would get stuck "inside" a piece of furniture, or she'd get stuck at work and would never leave, or she'd just disappear like she was invisible but her thought bubbles would still be there but I couldn't give her any commands - annoying stuff like that.) Yeah, I was really sad when I realized I lost the grim sim family. I got my photos and my itunes back, so I did get to keep the truly important stuff when my computer crashed... but of the silly/less important stuff, that grim Sim family is probably the thing I miss the most! :p I had googled at one point to see if anyone else had a glitch like that in the Sims 3, but I couldn't find anything when I googled, so I'm guessing I won't get a cool grim sim glitch like that again if I install Sims 3 on a new computer. :( Oh well. Hopefully Sims 4 won't be so glitchy!
 
Bozzy,

Questran is actually a cholesterol medication but is used to help people with bile acid diarrhea. I don't know that I have bile diarrhea, but it's sometimes prescribed for IBS patients too. It worked, I'm just thinking it may be working too well! My doc said it shouldn't be as harsh as imodium. I'm sort of going through this phase of experimenting with meds to manage my symptoms.

Cat, I used to play Animal Crossing when I had my GameCube. I was addicted to it too. My friend thought I was insane when I wanted to play it on New Years Eve because there was an outdoor party in the town! I remember getting gifts on Christmas and playing old NES games like Donkey Kong. Cool Game.
 
Moogle33-- Questran (cholestyramine) works very well for me for diarrhea (though not my other symptoms). I find that the key to avoiding constipation is adjusting the dose. I've been prescribed up to 1 scoop, three times per day, but right now, I can avoid diarrhea with just 1/2 scoop, once a day. If symptoms come back, I just up the dose.
 
It's been 3 weeks, and I still haven't gotten the results from the colon biopsies to see if I have mastocytic enterocolitis. I've also been waiting 3 weeks for test results from my endocrinologist (and have contacted them three times already). This is so frustrating to me.
 
Hi all glad to hear some of you are having good days for a change :). I've been having a strange time with symptoms? Lots of cramps, really poor or should I say weird appetite cos I'm struggling to eat proper food but can manage to rest sweet food or rubbish!! For once in bothered by D and its now about 4am and I've just say on the loo for 30 mins :(. Think it might be the change of pain meds, that's the only thing can think of? On a good note, I had a lovely day with my daughter, we went shopping and out to lunch :), not long now until she goes to uni and I'm cherishing every minute. We had a good chat about how she's feeling and what her plans are for the first few days so I feel a bit more content about leaving her........well nearly :lol:

Boozy.....I can't believe they can get away with paying you that, how come they aren't at least paying national minimum, I thought that was the legal minimum? Poor you that's so miserable, I feel for you ,:(. You should maybe try and get in touch with the child tax credit people cos you might be entitled to something that way, the number is 0345 300 3900, my sister made a call and got some working families tax credit too. I do hope you get some help too.

Cat...I take 1g tablet of pentasa and they are huge, I found the best why to take them is with milk or fruit juice, it seems to`hold` the tablet and take it down the throat easier whereas I had the same trouble as you when I took them with water. Hope this helps?
 
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Lizbeth, I think I have a different kind of Pentasa than you have? Mine are 500 mg capsules, not tablets. I take 2 capsules twice a day. They are huge capsules but I'm doing better at getting them down with water. (I can't have milk due to lactose intolerance unfortunately.) I can't seem to digest tablets very well - I had been on Asacol and then Delzicol, both of which are tablets (technically Delzicol is a capsule, but it has a tablet inside the capsule which makes no sense to me!). I would often pass those tablets in my stool, completely undigested, so I asked my GI if I could switch to something that's truly a capsule and not a tablet. He put me on Pentasa which is a capsule, at least here in the US it is (is the UK version of Pentasa different from the US version?). I think I'm digesting the capsules well so far, I haven't seen any undigested Pentasa in my stool as of yet.

Chickadee, you're in the US, right? It shouldn't take that long for test results, that's ridiculous. Keep calling them every day, if the receptionist blows you off then ask to speak to the nurse. Good luck, I hope you get those results soon - and I hope they're worth the wait and can give you something useful to go on.

Moogle, have you tried psyllium husks? I think I've mentioned this before - I take psyllium, it's a soluble fiber that works as a bulking agent. It works quite well for me, it cuts down significantly on the frequency of my bathroom trips and helps somewhat with stool consistency too. Were you the one who mentioned that a Whole Foods just opened up nearby? I get my psyllium at Whole Foods, I buy the organic version of their store brand. It's something like $11 for a big container. It doesn't constipate me and it doesn't cause diarrhea - it helps me have somewhat normal stools. It's been great for me. If questran doesn't work out, I'd highly recommend you try psyllium - and feel free to ask if you have any questions about it.

Oh, and yeah, there are special parties and stuff on certain days in Animal Crossing! My townspeople just informed me that there will be a bug-catching contest this coming Saturday, so I will definitely be playing it on that day. :p Ha ha!
 
Lizbeth, I felt that way last weekend. Cramps and blah for three days and nothing stayed in my stomach. It went away Monday thankfully. Hope you get to feeling better soon. Are there foods you feel safe to eat when you are not able to eat proper?

Cat, I haven't tried psyllium husks. I'll give it a shot. I think I need to cut out some trigger foods in my diet. My big trigger has been coffee. I only have one cup in the morning, but it bothers me. I tried to quit a few times and switched to tea. A cup of tea also makes me go. It's a hard habit to quit, but I guess I need to.

When I'm not on meds (imodium or questran), I don't have full blown D every day. Things will be loose and it's like all the food I ate for the past two days. I'll be crampy and fatiqued for a day or two afterwards. Sorry if that's TMI!

Btw Cat, is that your cat in the picture? It's adorable! Very photogenic. :ycool: Good luck on your bug catching contest this weekend. I need a new game to get into myself.
 
Moogle, I've heard some people on the forum say that any warm beverage like coffee/tea will make everything move through them quicker, so maybe that's the case with you too. If you need a beverage in the mornings, maybe try something like juicing or tummy-friendly smoothies. I make smoothies most days. I use a big cup of ice, some almond milk, some soy-based chocolate protein powder (carrageenan-free), a banana, and sometimes I'll add some cocoa powder or vanilla extract for flavor. I have issues with eating bananas, maybe they have too much fiber or something, but I can stomach them fine when they're blended into a smoothie. Anyway, just an idea for you. Oh, and nothing is ever TMI on the forum so don't worry about it! We all get symptoms that may be embarrassing or horrifying to talk about in public, but it's all okay to talk about on here.

And yes, that's my cat in my photo - she's my Lydia Kittya. :) It's an old photo - she was only a year or two old when I took the photo, and she's over 10 years old now. I was making a dress, that's what the red fabric in the photo is, and she decided to play in it (there may have been some catnip involved, which is why she looks a little crazy in the photo, ha ha). She's a special cat, she usually follows me to the bathroom. She's apparently very attuned to my health. If I'm not feeling well, she'll sit near me the entire time and will keep an eye on me to make sure I'm okay. She'll come when I call her (and she'll meow back at me as if to say, "I'm coming!"), and she seems to know my work schedule. My hubby is home a lot more than I am, and he has said that most days, he won't see the cat all day, she's hidden herself away, probably sleeping - but then when it's time for me to come home from work, she'll suddenly appear to greet me. :) She's also usually waiting at my bedroom door at 6 AM each morning to greet me and to follow me to the bathroom. My friend found her as a stray kitten, somebody dumped a litter of kittens near where my friend worked. I can't believe anyone would dump kittens at all, but especially not a cat like mine. The vet once told me, most black cats have kind of coarse, wiry fur. My cat's fur is so soft, the vet said she must be part persian or something like that to be so soft. The vet made it sound like just because of her oddly soft fur, she's a special cat. And of course I know she's special because she's MY cat and I'm her person. So yeah, that's my Lydia! :D She's the best friend a sick girl could have.
 
bozzy, you are right about lactulose. the GI and I went round and round with the insurance company to get them to pay for Linzess which is for IBS but they insist I must try lactulose first even though it's not for IBS. I don't get diarrhea often, I am almost always constipated.

Cat, I was also thinking about Gabi and wondering if she is okay. hopefully things are going well for her. I wonder if she had to have surgery and that's why she hasn't been on?
 
Cat, that's so cute! You're so lucky to have a cat like that. I don't have any pets now, but I am a cat person er, moogle. haha A cat-moogle :)

I like the smoothie idea. It sounds good right now! yum.
 
Moogle, pets are great - I've got a cat, a dog, and a hedgehog. :) I had 2 gerbils but they died of old age earlier this year. I enjoy having pets, although I'm totally a cat person too. My hubby is a dog person, and our dog is pretty awesome - she's a corgi, so she's naturally ridiculous and hilarious. :p The hedgehog is grumpy & nocturnal and we mostly leave him alone, but he's cool too - he's an albino, and he's fun when he's in a mood to be sociable. We don't have any kids, so my pets are like an extension of my family.
 
My cat is called ralf and he was dumped as a kitten outside the vets I used to work at. There was him, a female kitten and another kitten who unfortunately was dead. We took ralf and the female who we called squirrel. She was hit by a car not long after we got her. Lwaving ralf alone. Hes my baby, hes 13 this year, scary. I volunteer fir my local shelter and its overwhelming how many black or black and white cats thry have in. The major ity were dumped. Its so sad
 
Hello everyone. I'm new to this support group, but I've posted twice on the main Undiagnosed message board. I have only been going through all of this stuff for about 7 months, but really I know the symptoms have been around for much longer.
My current situation, is I'm with a really good Gastro consultant who is willing to do all and any tests to get me a diagnosis. I've had a colonoscopy, several x-rays, a small bowel MRI and many blood tests. Sadly, all of these have come back 'normal'. But stilli have constant rlq pain, fatigue, diarrhea, urgency for the loo, blood in my stool, and mouth ulcers.
I am waiting on the results of a 2nd stool test, the first was ages ago and showed a CRP level of 249. If this one is as high my Dr is going to order a wireless capsule endoscopy. Has anyone had this? What's it like and did it give you definitive results/answers?
The not knowing is really doing my head in, and I'm worried that if my tests keep coming back normal, that my Dr will stop treating me or investigating. I'm terrified of someone saying that I'm making it up, as there have been no test results to back up what I'm saying.
I was on Entocort but I've stopped now and all my worst symptoms are returning - with avengence! I had 6 ulcers (within 5 days of coming off the entocort) and I'm back to going to the loo 5/6 times a day and I think the diarrhea is worse than before.
Please can anyone offer and help, I'm finding it harder and harder to stay strong about all this.
 
Hi Weeze2,

If you are telling your doc that you have blood in your stool and you have frequent diarrhea, your doctors should take it seriously and do everything possible to determine the cause.

If for any reason you feel that your doctor gives up on you, get a second opinion. It's your health and you need to be aggressive about it if need be. I had a friend tell me the same thing this week, because my doctor did all the standard tests and they were all normal. So I plan to get a second opinion in the future myself.

Did they check for celiac disease or thyroid problems? Just wondering.

You're in the right place for support. Hopefully you'll get some answers soon.
 
Thank you for your reply. I have been tested for both of those and they both came back normal. When this all started I hoped it was celiacs, as it would have been a better alternative to what I'm facing now. I'm not very good at sticking up for myself in hospital, and I get nervous about challenging Drs.
Because my symptoms have got worse now I'm off the entocort then does this at least mean there must be some form of inflammation it was working on?
 
Hi Weeze, I would imagine you most likely have an IBD, as Entocort doesn't work on things like IBS. You are correct - it is a corticosteroid, meaning it works on inflammation. Also, it has a special coating, so it primarily works on the terminal ileum (last part of the small intestine) and the colon. The fact that it worked, and the fact that you're feeling worse now that you're off it, sure sounds like IBD to me. Entocort worked for me as well, and my GI feels that I likely have either Crohn's or microscopic colitis. Since Entocort has that special coating, it wouldn't work on other inflammatory illnesses - it pretty much only works on IBD (Crohn's/colitis).

When you had the tests with "normal" results, were you on Entocort at the time? If so, you may want to re-do some tests now that you're off of it. Corticosteroids can heal inflammation quickly, which can make everything appear "normal" on tests even if it's really not normal.

Keep pushing your doctor for more tests, it sounds to me like you're close to a diagnosis. A high CRP plus a good response to corticosteroids means there's inflammation, they just need to pinpoint where it is and what specifically it is. Hang in there, and good luck!

Moogle, yikes about the mind control stuff! Hopefully I don't have that parasite - I don't ever scoop my cat's litter so I'm not really exposed to cat poo. We have one of those automatic self-scooping cat boxes, so all we have to do is empty the poo bin every so often. (If you or anyone else is considering getting one of those automatic cat boxes - read the reviews carefully beforehand! There are a ton of junky ones on the market that break very easily and are poor quality.)

Akiva, I've heard that about black animals in general, that they're not adopted as frequently as other colored dogs/cats for whatever reason. That's so sad! My dog is a black tri-color corgi, meaning she's primarily black but has some white and a bit of orangey-tan too. She's a gorgeous dog, but she was a rescue and I do recall that her previous owner had a hard time re-homing her. I got my dog from a woman at work who couldn't keep her anymore due to her living arrangement. This woman apparently reached out to all her family, nobody wanted the dog. Then she reached out to all her friends, again no takers. So in desperation she put the word out at work, I heard through the grapevine, I had been looking for a smallish dog as we have a small house right near a dog park, and when I heard it was a corgi, I was sold. She was 2 years old at the time, well-trained and good with cats - just a perfect dog all around, I couldn't believe nobody had snapped her up already. I didn't care about the color - but I do wonder if that's part of the reason why my dog didn't get re-homed sooner, because other people didn't want a black dog. Hmm, sad! But their loss is my gain, my dog is awesome. :) My cat is awesome too, black cats are great! It's so sad and weird that there's some sort of bias against black pets.

So how's everyone doing today? I'm pretty good, except I'm kind of tired. We had thunderstorms rolling through pretty much the entire night, and I kept getting woken up by thunder. Other than that, though, I'm feeling pretty well. I've had good days so far since starting Pentasa, I hope it's not a fluke. This is only my 3rd day on it so probably still to early to tell if it's helping or not.
 
Cat, I am doing ok today. It's kinda weird, still sort of backed up from the Questran I took Monday. I went a tiny little bit though. I'm not in pain, which is good. I don't plan on taking the questran again again because C isn't good. I want to find a balance and not worry so much. When I am back to normal (whatever that means), I will try some of your suggestions like smoothies in the morning and possibly some soluble fiber supplement if needed. Can't wait to get a new blender and do up some smoothie goodness!

The weather is gorgeous down here in Savannah. It's low 70's in the morning and clear weather. I love this time of year!
 
Moogle, you probably already know this, but make sure you're drinking a lot of water - it'll help with the constipation. If you get too backed up, you can try stool softeners too. I get the generic colace stuff over-the-counter - I usually take it whenever I need to take Zofran, as that stuff tends to back me up a bit. The stool softeners can cause some cramping, so take them sparingly until you know how they affect you. They're not harsh and explosive d-causing like a laxative would be though, they're much gentler than that.

Oh, Savannah is supposed to be a gorgeous town, I'm jealous! I'm up here in Wisconsin and the weather today is oddly very warm for this time of year. The high today is 90 and it's very humid with sporadic thunderstorms. The weather report said a cold front is coming though, so it's only supposed to be in the 60s tomorrow and all weekend. I like the cooler weather - too much heat & humidity cramps up my guts. Plus, I am big on hoodies and jackets, so fall weather is perfect for that. :) I am not a fan of the frigid cold winters, my arthritis aches whenever it snows, but I like the nice normal weather in between the extreme hot and extreme cold.
 
Cat, yup I am drinking me plenty o' water. I hate resorting to stool softeners but I may. Eating some veggies should help.

My mother has the same problem with her meds, and I told her to eat some raw carrots and worked for her like a magic bullet! I may have to munch on some later!

I hate the extreme winter too. Last winter I developed nasty eczema on my right leg. It cleared up, but the spots are still there like waiting to return for an encore performance. Blue jeans are my friend. :tongue:
 
Thank you for your comments Cat, I'm glad I'm on the right track with assuming there must be inflammation if the steroids worked! I'm going through a real bad patch of pretty explosive diarrhea at the moment, which is getting a bit embarrassing and difficult at work. I'm the manager of a shop so sometimes I have run out the back to make it the loo in time...not great when you're trying to serve a customer! Today I had a very quick and very painful reaction to half a glass of orange juice....that's never happened before but my stomach cramped within minutes and 20 minutes later I had to make a very quick dash for a very painful bm.
When I had the first CRP test I wasn't on anything, but by the time I had the colonoscopy I had been on entocort at least a month. I just want to get a diagnosis so then I can start thinking about the future and making plans. At the moment I just feel in limbo, which I'm sure is the case for a lot of people on here!
Thank you for being understanding.
 
Weeze, yes, in this club we're all pretty much in limbo! In my case, my symptoms "fit" IBD, we've ruled a lot of other stuff out, and I respond well to IBD meds such as Entocort. So based on that, my GI feels I must have either Crohn's or microscopic colitis (I'm not usually a bleeder, and he said people with UC are almost always big bleeders, so he's essentially ruled out UC). But all my tests have come back normal too, so I'm not 100% sure that I have IBD or which type or where in my digestive tract it is or why it's able to hide so well! Sorry, that turnd into a bit of a rant there. But yes, it is incredibly frustrating and exhausting and can seem endless at times. You will get answers, I promise - we all will. It just takes time sometimes. We'll get there, and we all have each other here to lean on in the meantime. :)

I'm sorry to hear that your symptoms are affecting your job. A couple thoughts for you - have you tried anything like Imodium or Lomotil to at least get the d under control on the days that you work? It's not good to take something like Imodium regularly/long-term, but it's okay to take it as needed every so often. Another thing, if there's a risk you may not make it to the toilet in time, you may want to consider some sort of pantyliner or even a thin adult diaper, just as a precaution. I've only had one accident myself where I didn't make it to the bathroom in time, but fortunately I was home at the time (even so, it was horribly humiliating, I just went into the shower and cried). Personally, I would do everything possible to avoid having a public accident, and now on really bad days I will wear a pantyliner "just in case." Better safe than sorry!

Moogle - are you sure it's eczema? I know that certain rashes are common with things like Crohn's - look up erythema nodosum on google images and see if that looks like what you have going on. (I'm hoping you don't have EN, as I've heard it's very painful, but you didn't mention anything about pain so hopefully that's not it.) Even so, I believe eczema is an autoimmune disorder? And when you have one AI illness, you're more likely to develop another - so if it is eczema, it still may be connected with whatever's going on in your digestive tract. I know, what fun, right? You get one AI illness and it invites all its friends! :p
 
I saw a dermatologist because the spots were pretty bad. I did have a really painful spot on my back too. It burned like hell too. The dermatologist treated it well and it went away. Oh, I checked out that condition on google. The pics look like my spots on my leg. However, I can't recall if they were that purple. They did get crusty and itched really bad.

For a while I had a slightly low white blood cell count on my cbc. It came back to normal, but the hemotologist said his best guess would be an autoimmune disorder. Talk about vague right?

If my "eczema" flares up, I'll take a photo. It looked like pepperoni slices. I should work in the pizza biz! YES!
 
Hello everyone. Well it's the big day, starting our trip to uni in about an hour. My daughter was all packed last night and left to spend her last night with her bf, I made the mistake of going into her room later and it was sooooo empty, I couldn't help myself, I sobbed for ages :(. Also to put the icing on the cake I found out earlier that day that at 44 I'm officially having the menopause!!!! Oh what a day lol.

Moogle...My safe food used to be fish but these days when it comes to proper food my stomach turns at most things, l am ok with and enjoy banana on toast for breakfast, which I've just had :). What a out you, what would be your safe foods?

Cat....I had a wee look at pentasa online and it seems to be the same. When I started on it I had granules which were miserable, each sachet was 500mg and I had to take 4 twice a day tuck! Then I swapped to tablets but I still to take 4 twice, then my chemist got the one gram tablets in for me. I'm not sure how much good they have done but slowly my symptoms have improved.

Well Hubbie has just appeared and told me it's time to get going so I better go and get dressed, hope you all have a good weekend and it won't be as tearful as mine lol (4packs of tissues in my bag!).......wish me luck
 
Lizbeth, my safe foods when I'm sick are plain rice, a little banana, and sometimes plain toast.

I finally got things moving this morning! I got a big cup of Starbucks and it did the trick. No more Questran poo. Yay! :)

Today I will put in some job applications. I need to find a jobby job. I am also taking my mother out for lunch. She gets lonely cooped up at the house everyday, so gotta cheer her up. The weather is still nice down here. I hope I don't get D like last weekend so I can enjoy it more.

How's everyone this morning? Cat, you sleeping any better? Chickadee, get your results yet?
 
Hmm. I'm having some pain today. It's in my upper abdomen, an inch or so above the belly button. I've had gastritis pain in the past that manifested in that area, but this doesn't feel like gastritis - it doesn't feel like it's in my stomach at all. It feels kind of behind/slightly lower than the stomach if that makes sense, like deeper into my abdomen. I googled, and it looks like the pancreas is in that area - great. I know that meds like Pentasa can cause pancreatitis in rare cases, so I'm really hoping this isn't the start of pancreatitis! The pain is tolerable, though, it's not awful like I've heard pancreatitis usually is. So hopefully it's just a fluke, but I'm slightly worried. Just going to keep an eye on my symptoms for now and will go get checked out if it gets worse.

I'm a little nauseous too and I feel like my guts are really gurgly and rumbly. This is definitely the worst I've felt since starting Pentasa. Hopefully it's just a bad day though and nothing more sinister.

Lizbeth, I didn't have the option of sachets nor tablets, I think it's only capsules here in the US. The Pentasa I take looks like this:
Pentasa%20500%20mg.jpg

Is that anything close to what you take?

Moogle, good luck with the job hunt. My hubby has been looking for a full-time job for quite awhile now with zero luck, but apparently there are lots of part-time jobs out there right now. And with the holidays coming, I bet a lot of retail places are hiring seasonal employees, too. So hopefully you can find something! Good luck!
 
Cat, I looked up the side effects of Pentesa. Hopefully it's just temporary side effects. Hope you feel better.

Some good news, on my way out this morning I got a phone call from a staffing agency offering me a temp. job with k-Mart for a month. Totally out of the blue, funny how things work out. :)
 
That's great that you already got a job, Moogle! Congrats! Send some of that employment mojo up this way, my hubby needs it. :p Ha ha. Seriously though, congrats. When do you start? I hope the job isn't too rough on your body and isn't too stressful. Is it a temp to hire type job?
 
Moogle33 said:
I'm pretty frustrated this morning. Having ups and downs... I'm trying Cholestyramine for the first time to see if it helps stop my diarrhea. It seemed to stop it after breakfast.

But my stomach is gurgling like a monster again. It sounds like my insides are all liquid. This has been going on for weeks lately with the gurgling. I just need to be patient with this new drug and see if it helps.

Hope everyone else is doing OK today.
Click to expand...

My Dr. gave it to me and it does work!
 
Moogle33 said:
For a while I had a slightly low white blood cell count on my cbc. It came back to normal, but the hemotologist said his best guess would be an autoimmune disorder. Talk about vague right?
Click to expand...

low WBC does indicate autoimmune disease... It's because the white cells are busy elsewhere attacking your body and less of them float around in the peripheral blood.

I have low WBC (goes high on steroids!) and an autoimmune disease. Make sure you get properly checked out, rheumatoid factor, autoimmune blood panels and even ask to see a rheumatologist (a haematologist wouldn't diagnose anything like that, probably why he was so vague!) Might just be the key to your probs, or at least a start!
 
Cat and Moogle33-- Thanks for asking about my test results. Yes, I am in the good 'ol US of A. Unfortunately, no, I haven't gotten the results back yet. I did, however, actually get to speak to a person at the GI's office who seemed interested in finding out why I haven't gotten my test results. Apparently, the results are not in the computer, so she's not sure if the pathologist hasn't report them yet or if the results were faxed to my doctor and in a pile on his desk. She's going to try to find out for me. My endocrinologist doesn't have a nurse, and his receptionist is rather flighty so I've tried sending letters too. So far, no response. :( I don't want to call so much as to irritate them because then I have to deal with a doctor who is less likely to want to help me in the future. I will call again next week though.

I saw a Chinese Herbalist yesterday and am going to give some Chinese herbs a try (in addition to my Western meds). We'll see how it goes...

Moogle-- You might not want to rule out cholestyramine quite yet. I'd just try a much lower dosage and give your body time to adjust. Like Cat wrote, drinking tons of water is very important while on cholestyramine.
 
Cat, As far as I know it's just a temp job for a month. The lady with the agency said it's pretty easy work. It may be doing some kind of basic assembly for merchandising products for k-mart? I'll have an orientation on Monday. If it sounds too physically demanding, I'll decline it. I tried kitchen work in a fast food restaurant a few years ago and I almost hurt my back. I'm still going to be job searching for something permanent. Preferably administrative/marketing in social services, healthcare, or something care related as such. But still happy to have some work!

Hi RosaLeeMae! Are the stomach aches in your abdomen area or upper chest? Is it accompanied by gas or bloating or just pain? What foods do you normally eat?

lsgs, Thanks so much for the advice. I don't have insurance and I can't afford visits or new docs. A friend mentioned about some clinics for uninsured in town. When I get my finances and insurance back in order, I will continue my adventure in IBS-land. :panda:<- do the happy panda dance.
 
hello again everyone. so I got my lactulose and I'm kind of concerned about using it! It says that it shouldn't be used if you have gastrointestinal disorders.... so I'm wondering what that means? It also says the potential side effects are bloating, gas, and diarrhea..... I think I'm going to see how it goes for a day or two, if it's bad
or causes me pain I'm going to just wait the two weeks, report it didn't work and then start the appeal to get Linzess covered by the insurance company.
 
mccindy, I've heard of lactulose because clinics use it for SIBO breath tests.

Taken from siboinfo.com: "Lactulose Breath Test (LBT)
Humans can't digest or absorb lactulose. Only bacteria have the proper enzymes to do this. After they consume lactulose, they make gas. If there is an overgrowth, this will be reflected in the levels of H and/or M (hydrogen and/or methane)."

If you have any concerns about small intestinal bacterial overgrowth, I would be careful.
 
Well, I got a call back from the GI nurse, and my biopsies can back negative for excessive mast cells. I'm kind of bummed by another negative test (because mastocytic enterocolitis seemed like it could fit so well and actually has treatments), but oh, well. At least I got the results. The doctor had mentioned trying Gastrocrom anyways because I might have an increase in mast cells somewhere that wasn't biopsied, but the nurse didn't have that info. She's going to talk to him when he's in the office again on Tues. so we'll see....

mccindy-- I think those side effects are pretty much par for the course for any medication that's prescribed as a laxative. I've never had lactulose except for the SIBO test (which was positive but I didn't have any bad effects from the small amount of lactulose given for the test), but my suggestion would be to start small. You can increase your dose if you need it, but you don't want to take a large amount and then discover that it causes you a lot of cramping and diarrhea. My understanding (which may not be accurate) is that it's kind of like Miralax.
 
Cindy, I agree with Chickadee that those side effects are listed on pretty much EVERY drug! But the fact that it says not to be used if you have gastrointestinal disorders, that is troubling. But it's supposedly an IBS drug, right? Do they not consider IBS to be a gastrointestinal disorder?? Cat is confused now. :p It's a Friday afternoon so I don't have a lot of capacity for coherent thought right now. Cindy, maybe you could take like a half dose of it and see what that does? Just take a little if possible and bump up the dose gradually?

Moogle, yeah, physically demanding work can be challenging even for healthy people. My hubby is healthy as a horse, but he always comes home dead tired after a shift at the shop he works at. I don't know if I could do a job where I have to stand/move around all day - the tummy would probably be okay with it, but I don't think the joints would be pleased one bit. Hopefully you'll be able to sit at this temp job and that it won't be too demanding or stressful. Good luck!

Chickadee, I'm so sorry to hear you've had another "normal" test result. :( That's so frustrating! I hope your GI allows you to try that medication anyway. (Is that a med specifically for ME? I haven't heard of it before.)

RosaleeMae, hi and welcome. :) Can you tell us more details about your symptoms? When you say you get a stomachache, what do you mean specifically - pain, nausea? If pain, is it always in a specific spot? What tests have you had done?

As for me, my pain seems to have stopped for now, yay. :) I hit the gym a little while ago, and that always makes me feel better. The nausea's gone too. I'm tired, it's been a long week, but I know I can rest all weekend and I'm looking forward to it. Hubby works all weekend so it'll be nice and quiet and relaxing in my house. I'm thinking of lying around in my pajamas and playing video games for the majority of the weekend. Maybe a hot bath or two, some crocheting, possibly some sewing if I'm feeling ambitious. I'll probably go to the gym again but I will definitely be mostly lazy. :D I hope everyone else has a relaxing weekend too!
 
Hi everyone :) tucked up in bed right now, been on the road since 4 am and is now nearly 11pm.....daughter tucked up in her halls for the night...I think lol.

Cat...My pentasa don't look like that, they are a big white tablet, sort of oval in shape. Try not to worry about the side effects too much, I'm really not aware of having any at all, the position of the pain you describe is something I've had long before starting pentasa so for me I don't think it's related? Though if you're worried at all maybe give your GI a call?.

McCindy...it might be a little bit naughty but could you say that you've tried it but pour it down the loo instead? I mean isn't that where is going to go anyway? Well in a round about way, maybe my way would be a bit easier on your tum?. Forgive me if I suggested something really bad.

Moogle....congrats on the job :) really hope it goes well for you, will keep my fingers crossed that your induction day goes the way you hope :) I'm so pleased that you landed a job.

Hi RosaLeeMae and Isgs welcome the crowd :)

Chickadee...I haven't tried Chinese been meds for ibd but we did try it for my eldest who has chronic eczema and it was amazing, positive results in a couple of days, good luck.

Sorry that I've left anyone out, Hubble has got grumpy so I need to switch off....hmmm maybe he fancies a little bit of a romantic interlude? Well I know what my answer will be :) lol......not tonight Josephine lol. Good night everyone, thinking about you all, take care.:ghug:
 
For me my stomach just hurts really bad and nauseus too. I do get cramps like when you have intestinal flu alot and I sweat at night alot and during day too. I get the runs but questran helps with that. I did get a colonoscopy 2 times and once did show inflamtion in ileum and area around, one aptheus ulcer. But not last time. I get jointpain and tiredness and weird rash on upper body. Red pimples with a head and then they urst and go away. I get them on my neck and face too and I have sinus or allergies now. Just so many weird things. I have a gall stone too and heartburn which is under control right now thank goodness. Thankyou for your help. Oh he did test for B12 and it was low and he gave me shots to take at home too.I take D3 and fishoil and other things too.
 
RosaleeMae - Did they do a test for celiac disease? Celiac can cause a lot of the same symptoms you mentioned. There are some common foods that can be problematic whether you have ibs, ibd, or other digestive disorders. Foods high in insoluble fiber like raw veggies, beans, nuts, and whole grains can irritate the stomach and cause gas. You may want to search the forum for "low residue diet" for info.

Cat - Are you enjoying the weekend? That sounds nice, just relax and take it easy! I'm on the same page! Are you catching lots of bugs in Animal Crossing?

Chickadee - Well it sounds like good news and bad news about your results. It's frustrating when you can't get answers. For me, I don't want IBD...but telling people you have IBS, people don't understand. I hate explaining what happens to me. At least with Crohn's, I think there's maybe a better understanding of the condition. Neither condition is desirable and none of us deserve the pain. Sorry about my rant. I hope you find your answers!

I have some good news I think. I took Chickadee's advice about trying 1/2 the pack of Questran this morning. I ate my normal breakfast (a plain bagel with peanut butter and a cup of instant coffee). I had my normal urge to go and it a was normal poo! Maybe the 1/2 dose worked! Yay! :mario2:

Yesterday I had the dumping problem and felt gassy all day. So I'm going to stick with the 1/2 questran for a while and see if it's consistent.

Later today I go to a support group meeting. Other than that, going to relax and watch TV. I'm an Atlanta Braves fan. If they win today, they go to the playoffs! Go Braves!
 
Yes and I was not sensitive to celiac. Thank God or what else could I eat?
It is the bland that is usually the best for me.:tongue:I like things to have alot of flavor.
 
Thanks again Cat for your help and advice, it really is good to know that I'm not alone as sometimes I really feel like I am. My friends and family are being very supportive but I worry about how long they will keep being ok about all this.
Work has now got even more complicated as I've been offered a chance for promotion but they are worried about my health. I have tried to reassure my bosses that I will do my best and not let this *whatever it is* stop me from progressing my career, but even I don't know how bad this could get. 2 years ago I got admitted to hospital for what they thought was appendicitis and I ended up having it removed. I was off work for 3 weeks and took me longer to recover. The Drs have now said I never even had appendicitis (there was no inflammation in the appendix when it was looked at later) and that it might have been my first major Crohn's flare. I was so ill then, I have never felt worse, and I'm really worried that it could get that bad again and I could be off work even longer.
Sorry this has turned into an essay but I just don't have anybody else to talk about this, as no one understands as well as you all do.
Thank you, and I send everyone on here best wishes.
 
Weeze2,
I'm so sorry you in this dilemna, I mean you have to go about your life though. You have to take chances and cross that bridge when you come to it. You may not have to. You can't stop your life for this disease unless of course it stops you. But until then, I think you should go for it and be postive.:)
 
Hi guys I'm so sorry I haven't been on much here things aren't good with me at all. Out of hospital but contemplating going back in as the pain is at an all time high. So sorry I hasn't responded to any posts I feel awful but just knowing you all are here means a lot. I'm in a bad place right now. I hope you all understand xxx
 
Gabi it's good to hear from you though I'm really sorry things aren't good. Don't put up with the pain at home, do go back to hospital, even if they do nothing else but give you something substantial for the pain, my heart goes out to you, take care :ghug:

Weeze2 please feel free to get things off your chest cos we want to help and understand where you're coming from, and if you can't vent to us then where can you can't? Congrats on being offered a promotion, that's great news :) definitely give it a go and see how you feel and try not to worry what might happen in the future, just enjoy the opportunity cos obviously your bosses think you're right for the position, good luck. :)

How is everyone else? :ghug::ghug: to all.
 
Morning people! I've vented pretty well in the caregivers support forum. A lot of my issues are coming from that part of my life.

I tried 1/2 pack of Questran yesterday for loose bms. It did help, but it's not the perfect solution. Gas and bloating were bad all day yesterday. That tends to happen to me anyways. That being said, I didn't take it today and I feel OK. Hopefully today will be better on the stomach.

Gabi, I haven't had a chance to get to talk to you here since I'm fairly new. Please take care of yourself well and feel better soon! :hang:

Cat, you doing alright? I went and got some sample packs of whey protein isolate for smoothies. I will try that today and see how it goes. I like the smoothie idea to change up my diet.

lizbeth, How are things in things over there in your part of the UK? I've always wanted to travel over there. Are you in a small town or a big city?
 
woke up with cramps again and wondering if it is crohn's or cramps from uterus. How can you tell? I have a cyst in my uterus that is being removed soon.
 
Moogle, thanks for asking about me. I'm okay, not feeling great today. I usually go to the gym in the afternoons or evenings. Today I tried going in the morning, and my body did not like that so I got hit with even more reflux than I usually experience, so that was not pleasant (I have severe GERD and exercise is one of my biggest reflux triggers - I have to take 300 mg of Zantac and about 10 Tums just before hitting the gym to keep things reasonably quiet, but even that didn't help much today). So I got through a rough workout and now I'm back on the couch, relaxing. Got my mug of hot tea, got some crocheting on my lap, and the Packers game on TV. I'm feeling somewhat better now, and I know not to go to the gym in the morning after this experience! I can work out, as long as I stick within my limitations. I guess this is just another limitation to add to the list.

Gabi, glad to hear from you but that sucks that you're still doing so poorly. Did they do anything worthwhile for you when you were in the hospital? I remember it sounded like they couldn't decide whether to do surgery or IV steroids - did they eventually do either? I agree with the others, if it stays bad or gets worse, please consider going back. If there's a different/better hospital near you, you might want to try that too - get a fresh set of eyes on your case. Good luck and hang in there hun!

Weeze, if the promotion doesn't work out with your health and everything, could you go back to your current position? Can you try it out on a short-term basis and see if it goes okay? And do you have an idea of how stressful the new position would be? Would you have to work more/longer hours or anything like that? It just sounds to me like you need to weigh the pros vs. the cons. Your health should come first and foremost. For what it's worth, I've read anecdotally on the forum that the first flare tends to be the worst flare more often than not. That seems to be the case for me too - my first flare was absolutely miserable, and yes I've had some wicked flares since, but nothing that was quite as bad as the first flare. (It's possible it's just a perception and knowledge thing - I had no idea what was going on with my first flare, no idea how to treat it or what to attempt to eat, and I went into it being a healthy person who was not used to being ridiculously ill for weeks at a time, so it's possible it just seemed more horrible than other flares because I didn't know what to do and had never experienced something like that before.) At any rate, it's possible you won't ever have a flare that's as bad as your first one, so don't let that in particular hold you back from accepting the promotion.

How's everyone else? Hopefully we're all having a relatively relaxing Sunday?
 
Hey Cat! That sucks about the reflux. I can't walk or ride my bike in the morning after breakfast or it'll give me the "trots", haha. But seriously, it's good that you take care of yourself. I need some of your motivation.

I need an opinion (or two or three). I've got a lot of gurgling/swishing going on in my stomach. Feels like jello in there. It doesn't hurt, but it is happening a lot lately. Could this be caused by inflammation and not absorbing fluids well? Could it be related to gas?
 
Moogle, as far as motivation, I'd be happy to share what keeps me going to the gym. My #1 goal is to make my body as fit and healthy as possible, so that I can better fight the battles going on with my illnesses. I know there will always be work to do there, I will always have room for improvement and every day will be a battle for my health, and I feel like every day that I make a sincere effort in the gym is a day that I've won the battle, so that right there is enough for me.

As for what got me going to the gym in the first place? I had been really ill for a full year with no treatment (Oct 2009 - Oct 2010), and I lost a lot of weight and probably some of that was muscle & bone mass. Then, my GI put me on Entocort in Oct 2010, and I was on it for about 7 months. Thanks to Entocort, I gained my weight back and then some, but it all seemed to come back as ugly fat that settled around my belly area. So I didn't gain back the muscle/bone mass I had lost, and also corticosteroids such as Entocort can rob muscle/bone mass too - so I was further behind the 8-ball in that regard. I started having arthritis pains in my right hip around that time, so I went to physical therapy. My physical therapist assessed my whole body, not just the bad hip, and she did not have good news for me. My good hip was almost equally as weak as my bad hip, my knees were weak, I was just a weak mess. That scared me and lit a fire under me to do something about it, so I started weight training.

That went great, and I've been doing weight training ever since (along with other stuff like walking my dog, riding my bike, yoga, etc). I've gained my muscle mass and presumably my bone mass back - I have actual visible muscles (my hubby is jealous of my arms, ha ha!). Exercise seems to almost always make me feel better, not worse. It's hard, especially on days when I'm not feeling well, but as long as I just make myself do it I know I'll probably feel better afterwards. Yes, I have limitations - sometimes I have to skip the abdominals machine, and like I said I have to take a whole bunch of antacids before hitting the gym (I also can't have any food for at least 2 hours before working out, I can't even have something like gatorade - only water and antacids for 2 hours before working out). I think that just makes me want to work out even more, though, you know? Like my body's saying you can't do this, you can't do that - I respond by doing it anyway and working around the roadblocks that are thrown at me. :)

That was way too long, but that's it in a nutshell. If you want to read something way longer, here's the thread for my exercise diary:
http://www.crohnsforum.com/showthread.php?t=47421
 
Thanks Cat. I really want to gain some weight back. I hate seeing my blue veins bulging in my arms. I may go to my local YMCA and apply for their low income membership. They helped me out with that in the past.

I used to go to the gym, did weights and jogged when I was healthier. The one thing I regret was not learning about how to eat right when exercising. My trainers or gym people didn't tell me about recovering after exercise. I think I wore myself down without eating enough protein.
 
Moogle, I don't really eat well either. I'm lucky if I remember to eat at all after a workout. :p I struggle with low appetite, particularly in this mild flare that has been going on since about May of this year. I do try to eat protein after a workout when I think of it though. Something like a tuna sandwich or scrambled eggs is easy enough for me to throw together without too much effort (I'm usually pretty tired after a workout so doing a lot of cooking is just not happening! Not that I'm big on cooking anyway even in the best of circumstances). Fortunately, a fair amount of high-protein foods are safe foods for me. Things like baked chicken & fish, eggs, nut butters, goat cheese, etc. Back before I started having issues with bananas, I'd take a banana and spread some almond butter on it and that'd be a great snack. But yeah, I admittedly fall short on diet. I will honestly say, I had a candy bar after getting home from the gym today. :p Not good, but it was the closest food item to me when I sat down on the couch.

Oh, this reminds me - you mentioned something about getting some whey protein in a previous post. Can you handle lactose okay? I'm lactose intolerant and I had trouble with whey protein, it did not sit well with me at all, and someone on the forum mentioned that it's because it's a milk derivative or something like that. So I switched to soy protein powder, and that sits with me just fine. It took me awhile to find something that was both carrageenan-free and dairy-free, but I found one and have been adding it to my smoothies every morning. So if the whey doesn't work out, I've had good experiences with soy.
 
Hello again everyone, hope you have all been ok this weekend.
I just have a quick question... Has anyone experienced hair loss during a flare? I am currently taking amitriptyline (10mg per day) for some servere back and right hip pain I was having a couple of weeks ago, but I am on nothing else other than paracetamol.
I have always had incredibly thick hair, so to be losing it is really worrying me! Could it be that I'm not absorbing any nutrients?
It's being going on for about 2 weeks (same amount of time since my other symptoms came back too) and I'm getting quite worried! Any help appreciated!
 
Cat - I got some Whey Protein Isolate which is 99% lactose free. I don't like Whey Protein Concentrate, as it has a little more lactose. I'm not totally sure how I'll do with the Whey Isolate, so I got sample packs at my local health food store. It's nice so you don't have to spend $20-$30 on a can. Here's a good read about it. I'm not doing the paleo diet btw, but his site is informative.
http://www.marksdailyapple.com/whey-isolate-concentrate-hydrolysate/#axzz2ffLOEbCP

I tried some soy protein isolate powder and it made me feel terrible. I've had bad reactions to tofu and tempeh also. I turn into a gas bomb lol. Whey concentrate made me feel bad too. It's just going to be an experiment I suppose. Gonna start off using 1/2 a pack of the whey isolate.

Weeze2, I haven't lost hair so I can't comment personally. Definitely bring it up to your doc asap. Here's a link from Mayo that may be helpful. http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes
 
Thank you so much for your support guys you are all amazing. Update on things-I'm on entocort 9mg and pentasa and have been now for 16 days - nothing has changed so far. I'm trying to be hopeful but no different yet. I've also been put in regular codine to slow down the bowel-which I personally think is going to leave me in more pain!? So I try not to take it however when I do it tends to help a bit. The pain is still so bad and I'm back to no sleep and very difficulty in eatting. All this fears me so much because I haven't got a follow up appointment confirmed with my GI yet. I've been out if hospital for a while now and still no letter.
A question I wanted to ask is how do you know when the meds are going to work! Like do you start to feel better? Does the pain go away? Nausea? D? I'm prepared never to feel 100% well but should I not feel any better by now!?

Sad and confused
 
Thank you Cat, I've posted on that thread for some advice on the hair loss. I'm having such a bad flare at the moment I'm feeling so low. I think the added stress of this promotion at work and losing my hair and the ferocious mouth ulcers I have at the moment, I'm really not coping very well. :,( my partner is being really kind and caring but he just gets upset when I'm angry or sad as he thinks its his fault. But trying to reassure him and comfort him is exhausting on top of everything else. I know you all understand and it is great to know there are people who do.
 
Weeze...I've had the same problem with my hair, like you I have thick hair. every time I washed it it clogged the plug hole and I was scared to brush it. I had an alopecia profile done but it was negative, also found out I was anemic which can cause the hair to fall out plus I'm on pentasa and omeprazole, both have hair loss listed as rare side effects. It does seem to have slowed down greatly, though it is very distressing.

Gabi...I was started on the same meds as you and found it took a while before I noticed I felt better and it wasn't like I woke up one day and felt better, it was more gradual were I realised that I wasn't going to the loo so much or that I could eat a bit more than I had been managing. It just takes a bit of time. Heat was the one thing that got me through that stage, putting something warm on my tum or a warm bath.

Moogle...I live in a wee town where bushmills whiskey is made, depending on which way the wind is blowing it's possible to smell the whiskey in the air. I didn't know that when I first moved here and thought someone had been drinking on my doorstep!! Lol. Now I know better :). I'm about 2 miles away from the giants causeway and about 10 from Carrick-a-reed rope bridge, if you Google you can see them. I moved here when I got married 24 years ago after holidaying near here for a number of years with my parents. I love this time of the year when most visitors have gone home and its much quieter, the sun is out and is beautiful.
 
Hey lizbeth! Northern Ireland looks so gorgeous. I want to visit one day! I've heard of Carrick-a-rede rope bridge. We have a very big St. Patrick's day celebration in my town every year. We have a lot of Irish festivals and concerts. An Irish folk singer named Cathie Ryan performed a few years ago. She has a song about Carrick-a-Rede and talked about it.

Here is her song. http://www.youtube.com/watch?v=N70lL35Ewsw

Gabi, Weeze2, My heart goes out to you guys in pain today. I hope the meds help. :ghug:

I need advice myself. Do you guys have any gurgling or liquid feeling in your tummys? I am noticing it often. At first I thought it was due to my morning cup o coffee. But I am feeling it all day long. I ate a piece of toast with peanut butter and a small cup of lactaid milk before bed and it was bad. I woke up and had fluid gurgling in my tummy before I even had my coffee... Any ideas?? Thanks.

edit: I looked it up on the wiki. "Rumbling feeling/sounds (Borborygmus / Borborygmi)"

I'm having that major time and it's freaking me out!!!
 
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I have had that a lot too, usually means I'm going to have a bad time, or that something hasn't agreed with me. It can go on for hours and make me feel quite sick....no idea what it is though - sorry!
 
Gabi, I hope you find some relief soon, it must be horrible atm

Cat - I like your ideas for motivation, but I still have none to exercise lol. That said I am walking to uni and back, which is 30minutes each way, uphill on the way there and down on the way back.

Weeze - I am so glad you mentioned the hair loss thing, I didn't know that was a symptom, but Im 'shedding' (as my partner calls it) I lose loads. Will bare that in mind for when I see my consultant

RosaleeMae - its tough to tell the difference in abdo pain sometimes cos it ends up all hurting, but ive never had a cyst, so I don't know how painful that is. (I dread to think)

Lizbeth - the big question is...do you like whisky? (and hows the smell make you feel? I like whiskys smell, but don't drink it lol)

Moogle - I get the gurgly thing a lot, I agree with Weeze, it usually means that something hasn't agreed with me and im in for it.

Ive just been put on the dreaded prednisolone, been putting it off but gp thinks I need to go on it, on a low dose though I think, on 30mg.
 
I get that too (and have just gurgled to confirm lol), I don't know for sure but I think it's just bowel sounds but because ours don't work right then sounds don't sound right? Maybe that's a daft theory but it works for me :). It happens once I've had breakfast and will go on all day, sometimes worse than others.

I tried to listen to the song but it wouldn't play on my kindle, but I will check it out.

Cat you made me laugh about having candy after the gym, it reminded me of a time when a friend and decided to get rid of our baby fat and started going to the gym. We were sooooo good badminton was followed by swimming or maybe aerobics and a walk..........and then we quite often finished in a Chinese :) lol. Oh the good old days. Seriously though, about 6 months before I got sick I decided to get my health back on track, I wanted to control my diabetes and lose weight. I started to exercise and follow a low GI diet and it worked, I lost 16 pounds, but then got sick. It's been hard accepting crohns because the management of it was going to screw up my diabetes control, it's been hard having the 2 conditions.
 
Hello,
Back again looking for some reassurence. My colonoscopy has come through for next Wednesday and I'm nervous I am in need of answers but scared also. I am sick as a dog from almost everything I am eating now it's not liveable and awful pain, gurgling and a bulge in the cecum/terminal ileum area. I have lost more weight despite eating and my joints are absolute agony today I'm having to slide down the stairs on my bottom.
Does anyone have any colonoscopy tips? I have no idea how I will get the sheer volume of that prep down me :-(
 
Ali t said:
Hello,
Back again looking for some reassurence. My colonoscopy has come through for next Wednesday and I'm nervous I am in need of answers but scared also. I am sick as a dog from almost everything I am eating now it's not liveable and awful pain, gurgling and a bulge in the cecum/terminal ileum area. I have lost more weight despite eating and my joints are absolute agony today I'm having to slide down the stairs on my bottom.
Does anyone have any colonoscopy tips? I have no idea how I will get the sheer volume of that prep down me :-(
Click to expand...

First take 4 duloclax stool softeners,We now have a bottle of miralax(Medium size, don't know measurement but pharmacy could tell you), also two 2 quart sized bottles of lemonade flavor Gatorade is what they give here now and it was so much better than the "GO Lightly" I had to use last time. It worked great too. Ask your Dr. about that.:)
 
akiva said:
Gabi, I hope you find some relief soon, it must be horrible atm

Cat - I like your ideas for motivation, but I still have none to exercise lol. That said I am walking to uni and back, which is 30minutes each way, uphill on the way there and down on the way back.

Weeze - I am so glad you mentioned the hair loss thing, I didn't know that was a symptom, but Im 'shedding' (as my partner calls it) I lose loads. Will bare that in mind for when I see my consultant

RosaleeMae - its tough to tell the difference in abdo pain sometimes cos it ends up all hurting, but ive never had a cyst, so I don't know how painful that is. (I dread to think)

Lizbeth - the big question is...do you like whisky? (and hows the smell make you feel? I like whiskys smell, but don't drink it lol)

Thankyou akiva for responding!:ghug:

Weeze, I was losing hair too and started taking Biotin pills and a multivitamin called ALIVE and my hair is actually getting thicker again. I use a detangler comb too and be really careful when I wash it. Don't be hard on your hair or it will fall out more. The more stress you put on it ,the more it breaks. Always use a shampoo and cond. with biotin. It does seem to help. Moogle - I get the gurgly thing a lot, I agree with Weeze, it usually means that something hasn't agreed with me and im in for it.

Ive just been put on the dreaded prednisolone, been putting it off but gp thinks I need to go on it, on a low dose though I think, on 30mg.
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Moogle, Every evening I am siiting there watching TV and my stomach sounds like world war 3 going on and passsing gas sounds like bombs dropping! LOL:ylol2:Cat, I too wish I had your motivation. I am so sick in the tummy alot, i'm lucky to get my laundry done let alone exercise. I hope to feel better and be able to do more in the future.
 
RosaleeMae, we could team up and start an army with our tummy bombs. Just give me some beans and tempeh and I could blow up a third of the planet. :tank:
 
hey guys!

Cat - lactulose, it turns out is not for IBS. So I don't understand why the insurance company is insisting I try it first!

Lizbeth - You have guessed my strategy! I did try one dose of it and my right side was in agony for the whole weekend. My appetite went away and I was so bloated and uncomfortable. so I am not going to take it, then call after two weeks and tell them about the pain and bloating. They will appeal via my insurance company again and then hopefully they will approve the Linzess.

Gabi! I'm so glad to hear from you again. I'm sorry that you are still going through so much of the same stuff you were before with no answers. Hang in there girl!
 
Ali t, what prep are you going to be doing for your colonoscopy? If you are able to request a prep, you might want to ask for Picolax. I did that prep myself (it's called Prepopik in the US but it's the same exact thing), you only have to drink 2 cups of prep itself and then you just drink a bunch of clear liquids of your choice to stay hydrated - water, tea/coffee without milk, clear broth, sports drinks as long as they're not red/blue/purple, etc. It's not a hard prep to get down, just 2 cups and it didn't taste bad. It's not as harsh as other preps too - the downside is that there's a possibility you won't be fully cleaned out, but if you tend towards diarrhea anyway then you'll probably be just fine.

Akiva, good luck with the pred - for what it's worth, I *loved* being on pred! It made me feel so great ("euphoria" is a listed potential side effect and I definitely got that one!). I felt like a million bucks, like super woman, so much energy and my symptoms disappeared. That's just my experience of course, yours may vary, but hopefully it kicks in quickly and gets you a lot of relief.

Lizbeth, yes, I'm guilty of going out for meals after the gym too! :p Hubby and I used to sometimes go to this cute little cafe after our workouts together, and he even was ordering salads to try to be healthy (the meal I typically ordered was not so healthy, ha ha!). But last time we were there, we both got a little bit sick afterwards. Not like full-blown food poisoning, but something was a little "off" and we both took turns running to the bathroom with massive gas and diarrhea for the rest of the day, and I didn't feel great for about 4 or 5 days afterwards. So now we usually just go home after a workout because we won't go to that cafe again!

Gabi, both Entocort and Pentasa are fairly mild drugs, and honestly your case sounds to me like you need something stronger. So hopefully they'll kick in soon, but if your inflammation is too bad then those meds might not have much impact on things. I'm on Pentasa which seems to be working for me, but I'm only in a very mild flare. If things don't improve soon, think about calling your doctor and asking for something stronger. Speaking as someone who was in remission for 2 years, no, I don't think you ever will feel 100% better - but in my experience it IS possible to feel 99% better. In remission, I still had to watch what I ate and avoid too much stress and get enough sleep and all that, but as long as I did, I felt pretty normal. I know I'll never be quite the same as I was before I became sick, and I think a lot of that is mental (never knowing when the next bad flare will hit, needing to know where the bathrooms are when I go somewhere new, etc). But I did feel 99% well most days during my remission, and I think you can achieve that too. Keep fighting your doctors, if these meds don't work then ask for new ones, and go back to the hospital if you need to.

Moogle, did you start the new job yet? If so, how's it going?

How's everyone else? I'm okay today, a bit tired because I kept waking up last night, just couldn't stay asleep. Throat is a little sore because I had a bad GERD episode yesterday in which a lot of acid came up my throat and apparently burned it a little bit. The throat is better today than it was yesterday, so hopefully it'll be all healed up soon. Other than that, I'm feeling mostly okay. I think the Pentasa is working - I'm not getting any worse, like I did when I was on Asacol HD, so Pentasa must be doing something. (I couldn't break down the Asacol HD tablets and they were passing right through me undigested, so I felt noticeably worse within a week or so - I haven't passed any Pentasa and I'm feeling okay, therefore it must be working!)
 
Cindy, I think I missed your post when I was writing mine. How awful that it made you feel that way, and I agree, don't take any more and just wait out the 2 weeks to satisfy the insurance company. And what an odd thing, if it's not even for IBS then why on earth are they making you try it? What IS it for if not IBS? How strange. My GI once asked me to try an IBS med, never again! It was called Levsin I think although I was given the generic (hyoscyamine). It gave me terrible, awful, horrible nausea after I ate anything. I stopped taking it immediately, but the nausea lasted for a few weeks after that - I guess it all had to get out of my system or something. I lost weight, I couldn't exercise, it was just a hideous time. Zofran wouldn't touch the nausea either, so I got zero relief. I remember during that time I ate a little bit of pasta and then was just standing in my kitchen, trying not to barf. This was during the time that my brother was living with us, so he came home right then and he had a bag of food with him. The smell of food was enough, and I puked in my kitchen sink. As much as I dislike my brother, I have to give him some credit - he actually held my hair back while I barfed. Sorry that was gross, but that's my one standout memory of the awful nausea from that stupid IBS med. So I can totally relate to having to take a med you don't want and know won't work, and it just makes you worse. It sucks when you have to go through something like that! Hopefully the pain and bloat go away soon if they haven't already.
 
Hello Alli_t, I just wanted to say that a colonoscopy is no where near as bad as you think it will be! They sedate you really well, and it felt like it takes about 2 minutes (but I was in there for 40 minutes!) Make sure on the day you have to start taking the prep, have a day at home as leaving the house after taking the prep might get tricky! :) And just stay relaxed as the drink/tablets take effect as getting worked up will of help. Maybe have a good book or knitting or something in the loo with you too, as you will be in there for a while! Try and dilute the prep with some clear squash or lucazade (something clear that you like) which will help the taste and help you drink it. It does seem a lot but you will manage it, and I just kept thinking that if I didn't do it properly I might have to do it again!!
I promise it is no where near as bad as you think it will be and the answers you will hopefully get will make it worth it.
Take care and please ask any more questions if you have any.
:)
 
Hi,
The prep is called Klean prep it's 4 litres over the course of the day. I'm just concerned as I get deep gnawing pain and really bad pain and sickness if I don't eat every 40 mins or so then I get sick when I do eat but the thought of drinking all that in an empty stomach worries me. However I need answers I'm in agony today, sickness and cramps, this lower right sided bulge appears to be bigger and making noises it almost feels like stuff can't move through properly. B12 and iron low again and my joints are like old ladies I'm having to come down the stairs on my bottom it's really depressing me. Thank you so much for your advice it's really kind of you. Would I be able to mix ribena in with it?
 
Yes, Ribena would definitely work. And if you are worried about not eating, maybe give the department a ring? I got some information leaflets in the post with my prep sachets and it said if I had any concerns to give them a ring. Also, if I remember the instructions correctly
I could eat clear jelly and a small amount of vanilla ice cream for a certain amount of time. I read and then re-read the instructions so that I knew exactly what I could and couldn't do. And once you get to the last few hours before you have to go to the hospital you really won't want to eat as you won't feel much like food!
It sounds like you really need this test and I'm sure it will be worth it when you get your results. Best wishes and take care, and ask any more questions if you need to!
 
Hey Cat, I had my job orientation today at the temp agency. The job starts Thursday and lasts for about 1 week. It's an 8-5 job in a warehouse.

It's easy work. I'm just putting stickers on gift bags for k-mart. I can stand on a place mat and wear comfortable sneakers. I can also take breaks and have snacks if I want. They have a fridge so I can bring lunch. I may be able to bring my ipod also. :) I still need permanent work. But I'm grateful for this job.

I took questran this morning because the gurgling in my stomach felt blah. I'm still unsure about this med for me. My bowels don't feel loose now, but I feel bloated and have a raging headache. :ybatty:

Cat, what are you taking for your gerd? Have you tried Prelief? It's from the people who did beano. I've heard good reviews about it. I think it's a type of calcium pill that you take before trigger foods, that neutralizes acid.

McCindy, good for you to not take more of that stuff. Hope you get the meds you want. If you can, give natural calm a shot. I think you can even get sample packets. I got them at my local health food store.
 
Moogle, my hubby had a temp job like that once (his was something to do with sorting stickers from a huge bin). He said it was easy but tedious. So it shouldn't be too stressful for you but it might make for a long day. Hopefully they'll let you listen to your ipod. Good luck Thursday!

I think I forgot to address this in my earlier post from today - a few people in here have been talking about gurgling. I get that too, and sometimes it seems to be because I ate something I shouldn't, but other times it seems to happen at random. I've read on the forum that bowel noises/gurgling can sometimes be due to narrowing - if you've got a stricture or something like that, it can make all sorts of weird noises as the food has to move through it a little differently than it would through normal bowel. As far as I know, I do not have a stricture, so I have no idea in my case why I gurgle. Maybe it's just an IBD thing! In any case, I wouldn't worry too much about it,

As for my GERD, I'm taking 40 mg Nexium first thing in the morning, 300 mg Zantac and about 10 Tums just before doing a workout (and I still take the 300 mg Zantac mid-day if I'm not working out that day, plus Tums as needed), and then another 300 mg Zantac just before bed. And of course I try to avoid my GERD trigger foods (spicy foods, acidic foods like tomato sauce & orange juice, and anything deep-fried) and I try to drink a lot of water too. All of that usually keeps my symptoms in check enough so that I can function, but it still gets bad at times, particularly when I work out. I basically reflux all the time regardless, but I can't take more reflux meds than what I take now - previously my GI had tried doubling my Nexium dose, but that diluted the acid in my system so much that I wasn't able to break down my other meds. Not good! So it's a balancing act. I'll look into that Prelief stuff you mentioned. I know Tums is calcium carbonate so I'm guessing it's similar to Tums?

Ali t, 4 liters sounds like a lot of liquid, but you probably won't have to drink it all. I've always been told that I can stop drinking prep when I'm going "clear" (no solids, yellowish liquid and tiny flecks are okay but absolutely no solids). The first 2 times I did prep, I started going clear about halfway through. So just keep an eye on what's coming out of you. I'm similar in that I feel really sick if I don't eat regularly, but I did okay with prep when I had a colonoscopy about a month ago. I did get nauseous for about 20 minutes as a side effect of the prep, but other than that I felt okay and I didn't vomit. I've done prep 3 times now and I've only vomited once which was during the first time, and I think that was only because I got really dehydrated which always makes me feel sick. So you should be okay, really! Prep isn't fun, but you'll make it through okay. And like Weeze said, the scope should be a piece of cake compared to the prep, so try not to worry too much. Have a read through that link that Akiva posted for you about colonoscopy prep tips - it's got a lot of good info in there.

Has anyone heard from Bluebird lately? I sent her a message awhile back on her cake-making page on facebook and she said she'd friend me, but then she didn't and I haven't heard from her since and she hasn't been on the forum either. I hope she's okay and just busy or whatever. Bluebird, if you see this, we miss you! Come back and give us an update!

I miss Bozzy too but we've chatted a bit in PMs and I know she wants to be on here more but she's so busy with school right now.

And Carrie? Has anyone heard from Carrie lately? I need to keep better tabs on the people I worry about! Carrie, worried about you - if you read this, are you still off work? Did the biopsies show anything, are you going to have another DBE from the other end? Have you gotten anywhere as far as answers or relief?
 
Cat - the insurance company is insisting on the lactulose because it is a medication used to treat constipation. I told them that I have IBS or some form of IBD and that lactulose is not for those. Apparently their routine is to have an "independent" GI review the file and make a decision, and this "GI" doc said the Linzess should be denied unless I try the Lactulose first. so apparently he knows NOTHING about GI issues and meds! so I just have to not take it for two weeks, report to my doctor, and wait for the appeal. Then I can try the Linzess. I might give the Natural Calm that Moogle told me about in the meantime and see how that goes.
Gurgling - I get that too, especially if I eat something that gives me pain or bloating. I was gurgling all weekend after taking that one dose of lactulose on Friday.
Moogle, for a one-week job, yours sounds kind of nice I must say! Enjoy it and I hope you have good luck finding something more permanent.

I can relate to what Cat was saying about not going back to a place to eat after getting sick, my husband and I ate at a Subway once and both got sick. We got different sandwiches, the only thing they had in common was mayo and he had extra mayo on his, and got MUCH sicker than I did. That was years and years ago and when we drive past that place we still remember that's a place NOT to go for sure!
 
McCindy, one tip with the Natural Calm, start off slowly with it. Maybe 1/2 teaspoon and work your way up slowly until you notice results. It can help TOO much if you know what I mean, haha. Good luck!

The weird thing about my gurgling is I had it first thing after a few sips of water this morning. That's what is freaking me out. Oh well. Maybe my stomach wants to talk to me and say hello. :tongue:
 
Cat-a-Tonic said:
Moogle, my hubby had a temp job like that once (his was something to do with sorting stickers from a huge bin). He said it was easy but tedious. So it shouldn't be too stressful for you but it might make for a long day. Hopefully they'll let you listen to your ipod. Good luck Thursday!

I think I forgot to address this in my earlier post from today - a few people in here have been talking about gurgling. I get that too, and sometimes it seems to be because I ate something I shouldn't, but other times it seems to happen at random. I've read on the forum that bowel noises/gurgling can sometimes be due to narrowing - if you've got a stricture or something like that, it can make all sorts of weird noises as the food has to move through it a little differently than it would through normal bowel. As far as I know, I do not have a stricture, so I have no idea in my case why I gurgle. Maybe it's just an IBD thing! In any case, I wouldn't worry too much about it,

As for my GERD, I'm taking 40 mg Nexium first thing in the morning, 300 mg Zantac and about 10 Tums just before doing a workout (and I still take the 300 mg Zantac mid-day if I'm not working out that day, plus Tums as needed), and then another 300 mg Zantac just before bed. And of course I try to avoid my GERD trigger foods (spicy foods, acidic foods like tomato sauce & orange juice, and anything deep-fried) and I try to drink a lot of water too. All of that usually keeps my symptoms in check enough so that I can function, but it still gets bad at times, particularly when I work out. I basically reflux all the time regardless, but I can't take more reflux meds than what I take now - previously my GI had tried doubling my Nexium dose, but that diluted the acid in my system so much that I wasn't able to break down my other meds. Not good! So it's a balancing act. I'll look into that Prelief stuff you mentioned. I know Tums is calcium carbonate so I'm guessing it's similar to Tums?

Ali t, 4 liters sounds like a lot of liquid, but you probably won't have to drink it all. I've always been told that I can stop drinking prep when I'm going "clear" (no solids, yellowish liquid and tiny flecks are okay but absolutely no solids). The first 2 times I did prep, I started going clear about halfway through. So just keep an eye on what's coming out of you. I'm similar in that I feel really sick if I don't eat regularly, but I did okay with prep when I had a colonoscopy about a month ago. I did get nauseous for about 20 minutes as a side effect of the prep, but other than that I felt okay and I didn't vomit. I've done prep 3 times now and I've only vomited once which was during the first time, and I think that was only because I got really dehydrated which always makes me feel sick. So you should be okay, really! Prep isn't fun, but you'll make it through okay. And like Weeze said, the scope should be a piece of cake compared to the prep, so try not to worry too much. Have a read through that link that Akiva posted for you about colonoscopy prep tips - it's got a lot of good info in there.

Has anyone heard from Bluebird lately? I sent her a message awhile back on her cake-making page on facebook and she said she'd friend me, but then she didn't and I haven't heard from her since and she hasn't been on the forum either. I hope she's okay and just busy or whatever. Bluebird, if you see this, we miss you! Come back and give us an update!

I miss Bozzy too but we've chatted a bit in PMs and I know she wants to be on here more but she's so busy with school right now.

And Carrie? Has anyone heard from Carrie lately? I need to keep better tabs on the people I worry about! Carrie, worried about you - if you read this, are you still off work? Did the biopsies show anything, are you going to have another DBE from the other end? Have you gotten anywhere as far as answers or relief?
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Thanks for your help on the gurgling and everything Cat! You seem to know alot.
 
I REALLY REALLY REALLY need help and some answers! I live in small town Wyoming. For most of my young adult life I have had periods of discomfort (stab you in the guts, double over, get diarrhea... come and go pain... here and there maybe 1 time a month, maybe every other, or maybe 10 times a month). I thought all of these symptoms I had as a young adult were normal (14-present 27 years). Poop wasn't something I went around asking people about. Then June of 2012 I had to have my appendix removed and 1 year TO THE DAY of my appendix surgery I was back in the ER this time with something "similar" but different. I had bad tummy pain for about a week (thinking it was the flu maybe) then my diarrhea turned to straight blood. I was going over and over and over. I went the ER in Wyoming where they pushed around on my tummy and told me
"I realize your appendix area hurts, it cant be your appendix though, its probably just gas... go home take Pepcid." Later that night it got WORSE, so I end up in the closest "city" in Montana ER (My husband got fed up with Wyoming docs). At the ER in Montana they found blood in my stool (no bacteria), and a CT scan found inflamed colon right where my appendix once "lived". Also noted in my CT scan was fluid on my heart and liver, along with inflamed lymph nodes. The ER doc told me he thought this was possibly crohns or ulcerative colitis (a cousin of mine has crohns... but I never talked to her about it... didn't have any idea what it was). He also said it could be just a bacterial infection. They gave me antibiotics and sent me home to follow up with GI. I followed up with GI mid August 1.5 months after my "flare" up. By then things were back to normal, and I wasn't having issues. The colonoscopy came up normal, but no biopsy was conducted. The doc then sent me home with the IBS diagnosis and some pills. Well... its now 1.5 months post colonoscopy and I am having mini "flare" ups almost daily!! It interrupts my every move!!! The IBS pills, don't work!!!! My question is... Could I have been misdiagnosed?! What should I do? Should I drive to a real city like Denver or SLC to see someone who might have a better grip, or should I go back to the other GI? Is it possible it could be gluten intolerance or something like that?! HELP!!!! It interrupts my work, my day to day life, it interrupts EVERYTHING!!!! :/ Feeling lost!!!
 
Cat-a-Tonic said:
My GI once asked me to try an IBS med, never again! It was called Levsin I think although I was given the generic (hyoscyamine). It gave me terrible, awful, horrible nausea after I ate anything.
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oh my GI gave that to me too, I thought I was just being nuts thinking it was causing nausea (Im almost always nauseas anyway) they gave it to me on a day when I called trying to get in pratcially in tears cuz Id had diherra for 3days and it was burning and hurting me so bad....yeah the stupid med did nothing!:ybatty:
 
So I'm five weeks post op for a surgery to remove major adhesions due to my significant Endometriosis. I have already had a small bowel obstruction a year and a half ago and this was prevention. I had another SBO last week so I got a referal to a new doctor, one who works with my Gynecologist/general surgeons. I'm hoping that I can get a diagnosis for all the bowel issues I continue to have, painful bowel movements, bloody erosions in the ascending colon, esophagus, stomach and upper small bowel.
 
Gabi said:
Thank you so much for your support guys you are all amazing. Update on things-I'm on entocort 9mg and pentasa and have been now for 16 days - nothing has changed so far. I'm trying to be hopeful but no different yet. I've also been put in regular codine to slow down the bowel-which I personally think is going to leave me in more pain!? So I try not to take it however when I do it tends to help a bit. The pain is still so bad and I'm back to no sleep and very difficulty in eatting. All this fears me so much because I haven't got a follow up appointment confirmed with my GI yet. I've been out if hospital for a while now and still no letter.
A question I wanted to ask is how do you know when the meds are going to work! Like do you start to feel better? Does the pain go away? Nausea? D? I'm prepared never to feel 100% well but should I not feel any better by now!?

Sad and confused
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Gabi I've just been put on regular dihydrocodeine (I used to take it for pain as needed but now I take it regularly) to stop diarrhoea and it's working really well, at least for during the day, not so much at night. Obviously it's only masking the problem but I definitely don't think it causes more pain, if anything it helps. I just hate codeines side effects and the spaced out feeling it gives you lol.

I haven't been on either of those drugs but I would have thought the steroids would have helped by now. Would they not consider prednisolone? It would make more sense considering (unless there's been a change that I've missed) they don't know exactly where the inflammation is.

My new GP is so amazing although not sure if he is permanent at the practice, I will be gutted if he is not. Saw him last night and he's writing to my gastro to tell him he needs to see me now. This doc has acknowledged my problems instead of trying to play them down because they don't know what to do. I am so grateful to him.
 
Hey guys. I'm doing OK this morning. I'm kinda tired, but can't complain much. The weather is nice this morning. I will probably take it easy today. Even though I have this temp job, I got to keep looking for work. My goal today is to put in a few applications for a p/t job.

Cat, you going OK today?

Omaklackey, sorry to hear about your pain you're going through. Hopefully you can get the diagnosis and find relief for your pain. Hang in there!

lsgs, that's cool you have a good doc. That's a common complaint about docs not listening and being stubborn. I prefer to see my gi doc's PA's because they actually listen to me and give me tests I ask for, haha.

aslpw, I can relate because I went through the same run around at first. Even for me, it's been four years since mine began, I'm still searching for answers.

IMO, they should have done biopsies when they performed the colonoscopy. If you have blood in your stool, your doctors should rule out IBD, or other conditions like Celiac, and colon cancer before saying it's IBS.

If I were you, I'd find another gi doctor for another opinion.

Do you have a primary doc you trust for recommendations on nearby hospitals or GI clinics?

I looked online and saw University of Colorado in Denver has a GI clinic. Check out this google map for more locations. Hope that helps!
http://goo.gl/maps/WJ0BF
 
aslpw, It's possible that because your flare has subsided the colonoscopy didn't reveal any inflammation. It's concerning to hear that no biopsies were taken since that is how crohn's can be diagnosed without inflammatory response. Check into some of the diets people on this forum use (I use the low-FOD diet myself, or there is also the SCD diet or the Paleo diet). If you can figure out what foods are causing your "mini-flares" that might help you get them under control. Also if your current doc isn't helping, keep trying to find one who will listen and help you with a correct diagnosis.
 
Hello, just wanted to leave a quick update...I rang the 'IBD helpline' number that I have been given by my Gastro Dr and they were as helpful as a chocolate teapot!! I'm waiting for Fecal Calprotectin test results and they're not back yet, my white blood cell count is low bite everything else normal. I explained that all my symptoms have got much much worse since coming off the entocort, that my bm are dreadful and painful and that I have so many ulcers I'm finding it hard to eat...and she just said call back next week :(
She said she didn't want to give me any more medication until my tests came back and the Dr had seen me. Meanwhile, I'm in a lot of pain, feel dreadful and have nothing (more than paracetamol ) to help! :(
Really feeling rubbish and down and the nurse just didn't seems to care or really listen to what I was saying. I'm just getting so frustrated! :(

Hope everyone is ok and that you days are better than mine!
 
aslpw-- Yes, I definitely think you could have been misdiagnosed. I would suggest seeing another GI.

I've been feeling really crappy these past couple of days-- lots of stomach cramps and bathroom trips and now a migraine. :( And I'm STILL waiting to hear back from the endocrinologist about my test results-- four weeks later and five contacts. I think I will be looking for a new endocrinologist. I need these results back though.
 
Aslpw, I agree with Chickadee, it sounds like you need to find a new GI who takes you more seriously. What pills did they give you? And when you say it affects your every move, what type of symptoms are you having? Have you had weight loss, blood in stool, getting up at night to run to the bathroom, fevers, anything like that? All of those things are NOT part of IBS, so if you've had any of those then definitely keep fighting for answers.

Weeze, there's a "talk to a nurse" helpline that I've called a few times too, and I agree, those things are completely worthless! They never seem to give any actual info and just tell you to see your doctor. Or they tell you really basic info that anybody could easily find with google anyway. I don't think they're even real nurses on that hotline, I think it's just regular people with google pulled up and instructions to tell everyone to see their doctor. :p For the pain, while you're waiting for the test results, have you tried a heating pad or hot water bottle? I don't think I could live without my heating pad!

Cindy, so if I'm understanding right, lactulose is just for constipation but not if it's constipation associated with any type of digestive disorder? In other words, it's just a laxative for healthy people? Ugh, that's so frustrating that they made you try it even once! How reckless and stupid of them. I guess in a way it's good that you had such a reaction, now you know not to take it ever again. I had my doctors put in my file that I'm allergic to hyoscyamine (not technically allergic, but after that awful nausea, I don't want anyone trying to give it to me again!). Maybe you could have your doc do something similar?

Chickadee, wow, yes it definitely sounds like time for a new doc. My GI is busy and he sometimes takes a week to get back to me, but he's never ignored me for weeks on end and he'll sometimes call me from home if I let him know I need to talk with him urgently. 4 weeks and 5 contacts is too many. Good luck finding a new endocrinologist, and I hope you feel better soon. Take it easy and rest up as much as you can.
 
I just got the pathology report in the mail from my GI, and I'm glad I requested it. According to the literature, mastocytic enterocolits is diagnosed if there are more than twenty mast cells per high powered field. My biopsies had "approximately 20" mast cells per high powered field. So...I am actually on the borderline of that diagnosis. When the nurse called me with the results, she just said it was negative, but I question that. It's so borderline. The first line of treatment would be Gastrocrom, and my doctor had mentioned having me try it even if the biopsies were negative for mastocytic enterocolitis. If the nurse doesn't call me back within a few days about the Gastrocrom, I'll call again.
 
Weeze2 said:
Hello, just wanted to leave a quick update...I rang the 'IBD helpline' number that I have been given by my Gastro Dr and they were as helpful as a chocolate teapot!! I'm waiting for Fecal Calprotectin test results and they're not back yet, my white blood cell count is low bite everything else normal. I explained that all my symptoms have got much much worse since coming off the entocort, that my bm are dreadful and painful and that I have so many ulcers I'm finding it hard to eat...and she just said call back next week :(
She said she didn't want to give me any more medication until my tests came back and the Dr had seen me. Meanwhile, I'm in a lot of pain, feel dreadful and have nothing (more than paracetamol ) to help! :(
Really feeling rubbish and down and the nurse just didn't seems to care or really listen to what I was saying. I'm just getting so frustrated! :(

Hope everyone is ok and that you days are better than mine!
Click to expand...

Sorry you are feeling so poorly hon! Sayin a lil prayer just for you!:ghug:
 

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