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Biopsies came back negative. Doc is still waiting on the lab results. If they come back negative she is going to order the pill cam and also refer me to a G.I. for a second opinion. Until then she is putting me back on Predisone to hopefully alleviate some of the inflammation and pain. She knows something is seriously wrong and is determined to figure it out.
 
Reflection, I'd be a little careful of that. Pred can work fast and blitz inflammation, so if you're on pred and then have the pill cam, it may heal things to the point that the pill cam looks normal. I'd hate for you to do prep and go through a test only to have the results skewed by pred! My GI always had me do either steroids or tests, but never both within the same timeframe. He made me stop taking pred weeks before he had me undergo testing for Addison's disease, and he made me stay off pred and have the pill cam instead. I know you need some relief, but unfortunately with stuff like this you sometimes have to choose between relief and getting reliable test results. Just my two cents!

Moogle, have you had anything like CT-E (CT enterography, basically a CT specifically of the bowels) or MRE (MRI-enterography)? MRIs are usually more expensive than CT scans, but the trade-off is that you don't get any radiation with MRI and you do get a significant amount of radiation with CT, so you've got to weigh the cost with the risks. (For what it's worth, I just had an MRI of my hips, and before insurance, it looks like it would have been about $4000, so that's quite expensive! I don't know offhand what a CT would cost.) Remind me, what bloodwork have you had done, and have you had stool tests? Pill cam is a good test but my understanding is that's pretty expensive too. Ultrasound is used sometimes but I don't think that's a very good test to have - I had an ultrasound done once on my stomach - I had a raging case of gastritis at the time but it didn't even pick up the inflammation in my stomach. So if they offer you ultrasound, I'd say skip that one. Dannid mentioned barium x-ray - I haven't had that one done myself so I don't know what it costs, but I thought I had heard that MRE is largely replacing barium x-ray now as the MRI gets a better picture. (In both tests, you'd drink barium contrast, then you'd either sit in the MRI machine as they scan you while the contrast moves through you - it'd highlight any areas of narrowing or thickness - and with the x-rays, they take an x-ray of you every half hour or so to see the barium move through you, and likewise could see areas of narrowing etc.) I hope that helps a bit - sorry there are no easy answers and not really many cheap tests either! :(

Lizbeth, yep, I get knee and lower back pain too! My left knee hurts particularly when I ride my bike. My hips are the worst though and they're the only joints with maybe-confirmed arthritis (GP says arthritis, physical therapist said arthritis, rheumy has no idea, orthopedic surgeon not quite sure). And yep, my hip MRI was normal too according to the rheumy! But my GP says the x-rays show arthritis in both sacro-iliac joints (he even made a joke that I've got issues in my gut-ileum and my hip joint-ileum). So who knows, they can't seem to figure out any part of me except for my GERD. At least that showed up on a test, ha!
 
Yeah Cat. She is aware of that, me too. She is only putting me on 10 days at 20mg to help reduce the inflammation. It will take a considerable time to get the referral process done, everything approved through insurance etc. She is just trying to get me some relief so I can continue to work. Cause right now it is very difficult. If we get it scheduled she will have me stop asap. The last round only reduced the inflammation slightly. I still had tons and was on the steroids during my scope.
 
Hey Cat,

I had an ultrasound and cat scan done. It was about two years ago. Just about all the tests I have had done were normal results. The exception was gastric emptying. That was really slow, so I was diagnosed with gastroparesis (and ibs).

I had giardia and h. pylori tests, which were normal. Thyroid and vitamin levels were normal. I had stool tests for fat malabsorption and for occult blood. They were normal. Celiac tests were normal... I'm kind of unsure at this point if I should keep looking for answers. I just want to make sure nothing has developed since the last colonoscopy (which was about 3 years ago).
 
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Having a bad day here so far :-( woken up at 5am with terrible gassy cramps and am now feeling like I am just waiting for the D and vomiting to start. Am currently trying to keep my two kids amused while I make a desperate attempt to get dressed and get everyone to work/school and hoping it passes. I really can't afford to take any more time off as have been off two days in the past two weeks and I only work 3days. How do you all cope with day to day life when you are having a flare? I'm finding it such hard work at the moment.
 
Having a strange time atm, wondering if it's the new meds? Being on mst reduced my bms to once a day now it's rising in numbers(and column) again and abdo pain increasing too, feeling a little sorry for myself today :(. My daughter admitted to having a few tears last night about moving away and now I can't stop crying lol....Oh dear I'm such a fool :).

Dannid...to answer your question how do we manage day to day, I think in a weird way I'm lucky cos I don't work. I lost my job last year due to other health issues, but in a way it sort of took the pressure off cos I can stay at home. Also my family are grown up and that helps a lot.
 
I need to rant. Sorry everyone.

But seriously. Something is very wrong, and I don't feel like I'm getting the answers or symptom relief I deserve.

It's not that I don't sympathize with doctors' inclination to dismiss my complaints. I know my background makes me look a little sketchy. When a new patient comes to you with an stomach issues and a history of anxiety, bipolar disorder, alcoholism and bulimia, you're going to start on the assumption that it's IBS. Brain/gut connection, blah, blah. I clearly have a messy brain. A messy stomach would make sense.

Except it *doesn't* make sense. This isn't all in my head. It's been well over a year since I stopped drinking and even more time since I finally overcame bulimia -- yet back then, all my bloodwork looked normal. I went to detox, where my doctors marveled at how healthy I was, given the circumstances.

Most people see health improve when they get sober. Not me. That alone should be a sign something's up. And I'm not just feeling a little off. Weird friggin' things are happening:

-- Three months after detox, at age 24, I got shingles -- a recurrence caused by the chickenpox virus seldom seen in people under age 65 who don't also have major problems occurring with their immune systems.

-- A few months later, I start pooing BLOOD.

-- Periodic migraines -- never a problem before, not even with hangovers -- start to pop up about once a month.

-- A few months after that, I start seeing bloodwork that, when you research it, is often seen in people with ACTIVE alcoholism and eating disorders.

-- I get random joint pain and fevers. My lymph nodes hurt sometimes -- for no apparent reason.

-- I've started losing weight and don't have much of an appetite at all. (For those unfamiliar with the psychology underlying eating disorders, let me help mitigate possible suspicion that I've simply swapped bulimia for anorexia. While these two disorders have a lot in common, bulimics generally have problems with impulse control that make anorexic-type restriction impossible. Plus, hello! I'm eating...I just don't feel the urge to. And I'm losing weight anyway.)

-- Sometimes, I realize I haven't exhaled in a while ... and I only realize this because I'm a about to black out.

-- I had a polyp and I'm half the age most people are when doctors recommend your first colonoscopy.

Sorry, but WHAT THE HECK. This is NOT IBS. No, not even "a particularly mean case." Maybe it isn't a GI thing -- maybe it's even completely mental and I have one doozy of a somatiform disorder -- but I deserve to be taken seriously. At the very least, refer me to a loony doc who can help me work through my issues.


Yikes. Overrreaction, I know, but I feel like I'm at my wit's end. Another new thing has me wondering if and when things will ever get better and if my doctor will ever find out why I feel lousy.

Last night I got really, really sick to my stomach about three or four hours after eating. Awful stomach cramps, intense nausea dizziness and general malaise ... had to lie down for a while. I'm used to this feeling, but it used to only last a brief few minutes before I'd realize a bout of D was on its way. This time, no lower GI trouble at all. Nothing. I had to make myself throw up because I felt so awful -- my boyfriend actually had to convince me it was okay to vomit because I felt so sick. I didn't want to -- after all, I haven't done that to myself in a long time and God knows the last thing I need is an ED relapse right now.

Who knows. All I know is I'm getting REALLY tired of not feeling well and not knowing why.

Thanks for letting me vent.
 
Bureaucratic, I have a lot of the same symptoms and I can relate to your frustration. I've had 3 polyps and I'm only 33, I started pooing blood about 4 months ago, and my migraines sound very similar to yours. They only started when I first got sick back in 2009 - I *never* had migraines until my stomach & guts went crazy, and like you, I started getting about 1 migraine a month. Out of curiosity, do you get auras before yours? I do, mine are downright freaky (they're different every time and sometimes they make me think I must be having a stroke or something like that). The auras are almost the worst part. I will say, though, I take 25 mg of Amitriptyline (a low dose of an old-school antidepressant) and it works wonders for preventing the migraines. I now get maybe 1 or 2 per year, instead of 1 per month. You may want to ask your GP about something like Amitriptyline, it helps me sleep too and it can supposedly help with chronic pain and can "calm" the guts (I haven't experienced much as far as the pain/calming part goes).

Oh, and I've been through an eating disorder too, although I'm fortunate in a way, as I was never actually treated by a doctor for it, so it's not in my medical file and as far as my doctors are concerned, I have no history of eating disorder. I was anorexic from about ages 16 to 19, but I never told my parents about it and they shockingly never even noticed. As a 16 year old, my mom called me fat, and I freaked out and starved myself for 3 years, in a nutshell. (I was 122 lbs when my mom said that to me, I was *not* fat but I sure felt it when she said that, and I felt like if my mom was saying it then everyone else must be thinking it, so I ate either nothing or 1 small meal a day, and kept my weight between 105 and 108. Any lower than 105 and I looked horribly skeletal and was afraid people would notice, and any more than 108 and I felt like a heifer and punished myself.) At age 19 I had a wonderful friend who had a heart-to-heart with me about my anorexia, I credit him for getting me on the track to healing. His words stuck with me, and when he died a few months later, I decided to honor him by getting healthy. I did it all myself - so it's not in my medical file, which turns out to be a good thing, as I get taken more seriously I think and not just written off as "it's all in her head" because of my past eating disorder.

Anyway, my long rambly point is, I can relate to a lot of what you wrote and I really feel for you. I'm so sorry your doctors aren't taking you seriously. Can you get a referral to a new GI? Surely there must be a doctor out there somewhere who will take you seriously and won't write off your past issues as being directly related to your current symptoms. In any case, it's not an overreaction. It's justified frustration from a really crappy situation (no pun intended). Feel free to vent here anytime, we're here listening and we've been through a lot of the same stuff too. I hope you can get somewhere worthwhile with a doctor who will listen. Hang in there! I promise, it can and does get better. I had a lovely 2 year remission and I'm hoping to get back into remission soon - I'm lucky enough to have a good doctor who is willing to try the milder IBD drugs on me, and I'm also fortunate enough that those drugs worked well overall. If you can't get anywhere with tests, it might be time to ask about a medication trial. (The worst they can say is no.) A short trial of prednisone could get you some relief - and as all my doctors have said, IBS does *not* respond to pred - but IBD does. Pred worked great for me which essentially took IBS off the table. Anyway, I'm rambling again, but just a thought for you. I hope today is a better day than yesterday. Sending you a big virtual hug!
 
Minor vent from me - so I had emailed my GI on Friday, asking if I could try Pentasa like we talked about. He wrote me back on Monday and said yes, and that he would send the prescription over to my pharmacy. Well, he forgot! This is the 2nd time in as many months that he's said he would write me a prescription and then he forgot and didn't do it. (Last month, he forgot to write the script for my colonoscopy prep and I almost didn't get it in time!) I'm getting really sick of this. It's great that he wrote me back so quickly, since he usually takes a week or sometimes even longer to get back to me, but what's the point if he's just going to neglect to do what he said he'd do? Ugh! I just sent him a snippy email asking him to please send the prescription over to my pharmacy ASAP since they haven't gotten it yet. I'm hoping these 2 incidents are just flukes, since he's never done this in the past and I've been his patient for over 3 years now. But man, this is annoying! Do not say you'll write a prescription and then not do it for days on end. I know it only takes like 10 seconds to do in the computer so I'm sure he just forgot! Ugh, just mad right now. I was hoping to start Pentasa tomorrow but it's looking like I'll have to wait until at least next week. :(
 
My biopsies mostly came back normal, except for the duodenum ones which said mild duodenitis. Yesterday my really bad D came back with a vengeance. It may or may not have had blood clots in it. it had something black and blobby going on. Now today I had more D with some (dark red) bloody mucus. I don't know if I should call the doctor or not. I hate overreacting. I've been having some weird sharp pains off and on too, but I doubt they're from the procedure. I'm supposed to take a quick trip to indianapolis this weekend, and right now I'm worried that I shouldn't go. I really want to go. meh.
 
Hi,
I'm new here and guess I'm looking for a little comfort, reassurance and understanding after coming up to 4 years of utter misery.

Ill try and give the watered down version. So 4 years ago I started with severe nausea and loss of appetite I had a scope down the throat that threw out gastritis and was put on omeprezole for acid suppression. Symptoms continued with debilitating nausea which worsened after food and constant belching and indigestion no matter what I ate and how bland. I also had intermittent heartburn and pressure and pain in the epigastric region. I continued on omeprezole whilst undergoing random tests as omeprezole was just not helping me. During this time then the joint pain started, really stiff and painful joint seizing up all the time. I went through a few spells having to come down the stairs shuffling on my bottom as my kness just went. I then began being really tired all the time, with pins and needles and breathlessness. It was then diagnosed I had b12 deficiency and iron deficiency. I'm currently on 3 monthly b12 injections and iron infusions.
The tests I've had have just thrown up sibo which is now treated and eliminated, gastritis, h pylori and rapid transit of my upper stomach. My symptoms have progressively worsened over the years making going to work and living any kind of life extremely hard which in turn gets me really down as before all this I was a happy, healthy busy person.
I live with daily pain, discomfort, awful nausea, indigestion which rules out ever being able to make a plan as I never know what's coming next. The plot thickened when a year ago I developed a bulge/lump in my lower right side my gastro was convinced it was a hernia and just went straight in to operate without a scan. I had the Op a few months ago now and no hernia was found just adhesions in the illecal valve/caecum area which were cut or whatever they do with them. The bulge/lump still remains. My gastro has batted crohns about a few times to me and said it can be a very fiddly/difficult thing to detect and in average can take 7 years to diagnose. I saw him this week and he would like to do a colonoscopy as he said the lump and gurgling is coming from my caecum and he is now questioning why I had adhesions in the first place. On top of daily nausea, indigestion, upper gastric /chest pain I now present with awful bowel cramps every time I eat no matter how small the portion or bland. The lump/bulge gurgles and it just feels like contents aren't getting passed that area freely if that makes any sense.
I was under a terrible gastro for years who did some tests but just didn't seem bothered about how this is effecting the quality of my life, he just sent me away with new medication and left me on it which is why I believe I needed up with all the bacterial due to long term acid suppression. He left me so low in b12 after saying my bloods were fine I collapsed at home and had to go to hospital where they were stunned at my low b12 reading I remember at the time telling him I had numbness in my legs but he looked at me like I was insane. I have also had the IBS and dyspepsia cards thrown at me at times during the last few years which angers me so much. I do have IBS and I know what it feels like. That is something I can live with as it just comes in bouts that are short lived the symptoms above are 24/7.
I have lost weight and feel quite fragile being so thin but no matter what I eat I am just unable to put a pound on. I'm also low in vit D.
This is the very watered down version of the last few years but I'm guessing you guys must feel frustrated, angry and alone sometimes like me. It's completely controlling and dictating my life. I could make a plan to do something and have to cancel 5 minutes before because I'm so sick. I massively fear for my future and just want a diagnosis now so I can at least try some relevant treatment.
I didn't really think Crohn's disease but my gastro has mentioned it a few times with the weight loss, mouth sores, b12, iron and vit D deficiency, nausea, indigestion and now this cecal mass he appears to be going down the route.

I would really appreciate if anyone has had similar experience to share with me and get in touch as I feel at the end of my tether now.

Thank you so much in advance. This is my story.
Ali xx
 
Cat, thanks for the support :) :). Re: the migraines ... I always wake up with them, so if I do get an aura, I'm not conscious when it happens. I'm not even sure they're migraines; I've done some research, and they're absolutely not tension or sinus headaches .... but I'm afraid to keep googling anything that brings up results mentioning brain tumors...lol.


I think I might be able to get a new GI, but I don't know if I'll bother until I get my biopsy results back and meet again with my current doc. He's actually relatively new; I transferred to him after I was really, really underwhelmed with my first doctor ... and he's been a lot better. I want to make sure I'm not just harboring some residual frustration over the first doc and channeling it toward the new one.

The first one was ridiculous! I came in complaining of rectal bleeding and lower GI pain, and his first line of attack was an *upper* endoscopy. After that, he ordered a CT scan, which came back with normal but limited results. According to the report, several sections of bowel in my lower abdomen and pelvis didn't opacify ... which my doctor either ignored, didn't notice, or thought wasn't a problem. I got a second opinion about the CT and was told that if part of the intestine didn't opacify, it made the scan less sensitive -- which was a big problem since the whole point of the scan was to look at that area. Things were probably fine but the bleeding needed further investigation. Plus, the old he was generally slow about answering calls and such. Soooo, I think I'm mostly just mad at him. After all, if I'd have stayed under his care, I'd still have a polyp ...

Carrie ... girl, you got my sympathy. I'm supposed to go to Vegas next week but just saw (surprise!!!) dark blood on the toilet paper and hope there's no more, 'cuz it'll make me really re-think my travel plans. (Been feeling lots of stabby pains lately.)
 
Bureaucratic, if you don't get the auras, then you're lucky at least in that regard! Like I said, mine are different every time. My first migraine, I think that was the "classic" aura where I saw a swirly spot in my periphery and it grew until I was basically blind in the right eye (I only ever get the auras on the right side, and I only get migraines on the right as well - no idea why!). My later auras have been much, much stranger. I had one where suddenly there was like a "click" on the right side of my head, and everything was much brighter on the right, as though someone had turned on a lamp that was just out of view to my right. Very weird! With the click in particular, that was the one that really made me worry I was having a stroke. I've also had a similar one to that, where suddenly everything got sharper and in more contrast - like someone was changing the settings on a TV, but of course again only on the right side of my vision. And the most recent one, I was chatting with a co-worker, and he was standing in front of a window. I kept thinking the sun was right behind him because it was so glaringly bright, I couldn't even see his face. Then I looked away and still saw the incredible brightness, so I knew it was an aura. Not fun! And at those times, when I'm at work or whatever and have an aura, it's not like I can hop in my car and go home. The auras sometimes partially blind me temporarily so driving is not safe. But what I'd love to do during an aura is speed home, because I know the migraine itself is only 15ish minutes away... except when it's not! I had an aura at work once at about 10 AM. And then, nothing, no migraine. I thought I was in the clear and forgot about it for a bit. Then at about 3 PM the actual migraine hit! I don't know why there was a 5ish hour delay when it's been 10-15 mins every other time. I never really know what to expect!

Oh, and so at one point I told my GP about my migraines, and he prescribed sumatriptan for me (generic Imitrex). He said I should give it a try the next time I had a migraine. So, one evening at home I was watching a movie and I felt an aura come on, so I popped a Sumatriptan. It seemed to work, the migraine never really fully happened (I did feel a little funky and still had some sensitivity to light, but I didn't have to go lie down or anything). That entire evening, I felt okay. But the next morning, I woke up with a raging migraine - on the left side!! That's the only time I've ever had a left-sided migraine. I presume it was a rebound migraine as a result of the sumatriptan, but it freaked me out that it was on the wrong side.

Anyway, that was long and rambly, but I'm glad to hear you don't get auras because they're not pleasant. And if your doctor gives you the option of low-dose Amitriptyline or Sumatriptan for your migraines, I'd recommend the Amitriptyline. It's been a great preventative for my migraines. :)

And yeah, googling symptoms like that can just lead you to a lot of worst-case scenarios. I saw a comic strip online recently, it was pretty funny. It was this guy going about his life, but "web MD" was following him everywhere. So the guy would do something like eat ice cream and get an ice cream headache, and web MD would say, "It's cancer!" Then the guy would stub his toe and web MD would say, "Cancer! It's cancer!" And so on. Yeah, that's pretty much what you get when you type symptoms into web MD. :p

I hope everyone here has a good weekend and that your tummies all behave. Anybody have fun plans? I have to go to a party at my in-laws' house, but I get to see my sis-in-law and my nieces & nephews. Sis-in-law is now 8+ months pregnant, she's due in about 3 weeks, and I just found out she's having a girl, so I'll have a new little niece soon. :D Yay! At the risk of sounding like an awful person, I like my nieces better than my nephews (I just don't "get" boys!). My oldest niece just turned 10 and she's turning into a cool person who I can have an actual conversation with. Maybe that's why I don't like the boys as much, they don't want to talk, they just want to run around and play in mud and crash into each other and stuff. :p Plus, the girls seem to appreciate me more - 2 years ago at xmas, I made pretty crocheted scarves for my nieces, and they loved them. Last year at xmas, I made scarves for my nephews, and they were like, ugh, clothes, boring, we want trucks and manly stuff. :p My best friend from childhood called me a few weeks ago and she has 2 sons, and she was saying she just doesn't "get" girls - I was like, are you kidding! I so do not "get" boys! Anyway, rambling again, but I get to see 4 of the kids this weekend and I'll be welcoming niece #3 soon. :)
 
I get auras too cat.. generally its in one eye.. but sometimes it is both eyes and I get awful tunnel vision.
But I only ever had this when taking the contraceptive pill and when I was pregnant. So it was definitely a hormone issue for me. I also came off the propranolol (for "chronic migraine") 2 weeks ago.. and low and behold.. no more headaches!! My chiari surgery has worked so much better than I'd anticipated!

Cant believe your SIL is due so soon! I remember the rough patch her and her hubby had.. and then you adding she was having another bambino!

Carrie and cindy - I love your tattoos!! I love the colours... I must admit, im a massive tattoo fan. Although I only have a tiny one myself.. located very low to the right side of my abdomen/in front of my hip. This has been ruined in pregnancy. And I intend to have it touched up.
Do either of you have any plans for more??

Gabi - how are you getting on? Xx
 
Yeah Bozzy, apparently my s-i-l and her husband worked things out a little too well! :p Ha ha. She did tell me once that they only use condoms, no other form of birth control. At least 3 of their soon to be 5 kids were "oopsies", so I don't think the condom thing is working out so great for them! The last time I talked to my sis-in-law, it sounded like she was going to get on some better birth control once this baby is born, so hopefully she won't be having any kid #6. I don't even know where they're going to put this kid when it's born - they have a tiny house and they're already packed in there like sardines! So yeah, hopefully now she's really done having kids once this one is born. And I totally don't need to have kids, I get to see a new baby every 2 years on average thanks to my sis-in-law! :p I only need to see a baby for a few minutes to remind myself that I do not like babies. So much drool, snot, poo, puke, and who knows what else comes out of babies very spontaneously... ick! The cuteness does not override the gross bodily fluids. Ha ha.
 
I saw my gi doc's PA today. Found out I don't need another scope unless the D gets worse or I start losing more weight. I'm going to try Questran if my D keeps happening. Need to just stick to low residue diet. I may try a gluten free diet also. A Whole Foods just opened up in my town. So I went and bought some fresh veg and fruit juices to have with my meals. So far having a pretty good day. Hopefully a good weekend too. Going to a piano lesson on Sunday. Other than that, just going to relax.
 
I'd been afraid to take my temperature since starting to feel kinda lousy again. It's up to 99.7.

I've wondered for a while if my thermometer's just *off* -- it probably runs high. Still, it never has me about 98.9 or so when I'm feeling good, and it only ever the mid-90s or higher when I can tell my skin's hot and I've been having chills.

It's been several weeks since I've had a temperature -- or at least since I've bothered to check it. But before that, I had a temp around 99.5 or higher every day for three weeks straight before it finally subsided.

The worst part is not knowing if I have a fever because I just, you know, get a lot of fevers, or if maybe I'm actually sick. I want to go see my baby niece tomorrow, but I'll probably stay home because there's always a chance I'm actually running hot for an ordinary reason. Gee, that'd be a nice change, hahahaha.
 
Hi guys! My names Elisabeth and I'm new here.
I've been ill since May 2012, when I got an xray that showed I had chronic c. Since then I have had a ct scan, colonoscopy, and an upper GI with biopsies. All test have been clean so far for Crohn's although my colonoscopy and upper GI showed mild inflammation of my terminal ileum and scattered diverticulosis.

So we figured that was the cause of my c. and they started me on Linzess 290 and probiotic which worked for a little while but like everything it stopped working so then we added Xifaxin and Florastor which never really did anything. Miralax works ok but only slightly.

My next visit is on wed and we'll probably order a capsule test since she said that'd be the next step. Thinking it might be Crohn's deeper in my small intestine. Its so crazy when you tap on my stomach the right side is hallow and the left is just a thud.

If my pill cam test shows ulcers it's Crohns :/
 
Hi everyone!

I have been reading everything, just haven't had much time to comment.

So I don't know if this makes me not a member now, but I did get my dx and it is STILL Crohn's. The Dr.'s nurse had told me she felt because my biopsy had returned acute and not chronic re my ileum inflammation, that I did not have it. However when I went for my follow up the Dr. said that while it is rare that it did come back this way, that when she actually looked at my ileum it presented as having peripheral inflammation that had to be there for quite some time. Admittedly I allowed myself to get very hopeful I just had some infection or something, all the while knowing full well from living inside my body that this would not be the case.

Anyway I am still in the process of finding out the rest. Currently need to be tested to see if I can take 6mp, to x-ray my sacroilliac (sp?) joint, and if I have the gene for ankylosing spondilitis because my symptoms are a lot of joint/back/muscle pain etc.

Hugs to all of you struggling and I have been reading and thinking of you...

Christina
 
Uninstall -- Ill since May 2012? Wow, that's really a bummer. I've been feeling off since May of THIS year and feel like I'm already going crazy.

I know what you mean with the stomach weirdness though! I used to only have problems with D, but since I've been in pain and having other weird problems, I've actually had more trouble with C. If it's been a day or more since I've had a "movement", I can usually press on my belly a little above the belly button to my left and there's a lump there. It could be a totally normal thing (I mean, not many people go around squishing their abdomens for kicks), but man it's bizarre!
 
BureaucraticNightmare said:
Uninstall -- Ill since May 2012? Wow, that's really a bummer. I've been feeling off since May of THIS year and feel like I'm already going crazy.

I know what you mean with the stomach weirdness though! I used to only have problems with D, but since I've been in pain and having other weird problems, I've actually had more trouble with C. If it's been a day or more since I've had a "movement", I can usually press on my belly a little above the belly button to my left and there's a lump there. It could be a totally normal thing (I mean, not many people go around squishing their abdomens for kicks), but man it's bizarre!
Click to expand...

Oh my goodness! I've never had such a visible sign of my c, although it can be more than a week before I have a proper movement. I just bloat which has been weird since all my problems seem to be in my left side. I keep waiting to see like a bulge on that side but I just look preggo.

Have you had weight loss with your c? I went from around 125 to 109. I've gotten to 115 but have stayed there and since I'm tall, I'm underwight
 
Uninstall: Sorry to hear about your weight struggles. Hopefully when you get your results from the test they can get you better treatment and help you to get your weight up.

BureaucraticNightmare: I have had the same types of back and forth. I went through 2-3 years of gastroparesis. I think constipation was causing alot of bloat and gas. Now I'm having IBS-D. Sometimes I'm not sure which is worse!

As if regular D problems aren't bad enough, I think I caught a stomach bug or ate something bad because it's non-stop this weekend. Worse than usual. Been wanting to stop taking imodium, but I'm really tempted.
 
Hello everyone, how did the weekend go for you all? Hope you got to visit with your nieces and nephews :). We had another whole family tea on Sat, I enjoyed it it but it made me a bit sad cos this time next week my daughter will be away and there won't be 6 of us again until Christmas. Only 4 days until we leave her :( :pale: it make me want to puke thinking about it.

Can I have a mini-vent about Drs receptionists? So I ordered a new prescription on Thurs for targinact and oxycodone so that I could collect on Fri which is my drs policy, low and behold no script to collect! Tried again Sat but still no script, I ran out on Sun night. Called this morning and its still not done cos the receptionist didn't think I was actually ordering it!!! It drives me mad how much the receptionists cock it up and make me feel like a junkie into the bargain :(, now have to make yet another trip to the chemist later on. Mini-vent over, thank you :).

I had really awful D over the weekend which is unusual for me, everytime I ate it happened and still have LRQ pain hat wont go away. I'm waiting for an appointment with my GI but still haven't heard anything. I'm so tired and my appetite is rubbish but at least I've lost 7lbs or my pred-weight :).

Wishing you all a good start to the week.......Gabi how are doing?
 
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.
 
I'm currently on that it helped a little my main problems are LRQ pain and bulge and immense nausea and I digestion And cramps. Not sure how much longer can hold on like this I'm exhausted /-(
 
Hi everyone, and welcome to the new members. Just a quick post from me today. I'm feeling really icky (awful headache, guts are angry, and I'm exhausted). I get to start Pentasa finally though, my GI finally sent the prescription to the pharmacy and I picked it up this morning. Going to start it tomorrow. I hope it works, because I'm having more bad days and I really need something to turn this around and get me to having more good days again. The Pentasa capsules are huge and are bright blue - on the upside, I'll definitely see them in my stool if I can't digest them! :p Wish me luck.
 
Hi,
Can anyone help, the lower right bulge is really painful I seem to be that nausea I can't move this PM and anti sickness tablets aren't touching it. I'm wondering if I have a narrowing and that what this lump is and why the nausea has been unbearable of late. I'm not due my colonoscopy until 2nd October. I'm that cold and tired and nauseas I'm stuck in bed. What would you do? My GP isn't sure, worried but not sure !!!
 
Ali,

I'm not a doctor, so I can't give medical advice. I can say from my experience that when I have abdominal pain I use an antispasmodic called Bentyl. It is just a temporary pain reliever.

I hope you get some relief from your pain somehow!
 
Ali t said:
Hi,
Can anyone help, the lower right bulge is really painful I seem to be that nausea I can't move this PM and anti sickness tablets aren't touching it. I'm wondering if I have a narrowing and that what this lump is and why the nausea has been unbearable of late. I'm not due my colonoscopy until 2nd October. I'm that cold and tired and nauseas I'm stuck in bed. What would you do? My GP isn't sure, worried but not sure !!!
Click to expand...

Ali do you have an IBD nurse that you could call? Or call your consultants receptionist and tell them your in trouble, failing that take a trip to casualty. I know it sounds a bit extreme but I've done it and discovered it was constipation but high up that I couldn't pass it without a little medical intervention (movicall). Try putting something warm on that area like a hot water bottle or a towel just out of the dryer, I couldn't do without my microwavable bags, or try a warm bath. For some reason the warmth helps me when medicine doesn't seem to. Try having a light diet to rest your bowel, maybe some clear soup or something like that and plenty of fluids. Sometimes even just resting the bowels like that can ease things. I apologize if I'm saying stuff that's,really obvious, just trying to think what helps me. I'm so sorry you're feeling so rough. Take care.
 
Bozzy - this is my second tattoo, but will probably be my last. i wanted this one to be quite significant for that reason. My husband isn't too crazy about tattoos, so out of respect for him, I won't get another one. They have to really mean something important to me. The first on is a heart with his name in the banner.

All - heard from my doc's office - since the stupid insurance company is denying my prescription for Linzess (which is for IBS) they want me to try Lactulose (which is not for IBS) first. This is the only way the insurance compnay will pay for Linzess, if I try the Lactulose first and then fail on it. SO more of a waiting game. I had actalluy managed to gain about four pounds but I've lost 2 1/2 of that again. Fristrated!
 
For once I'm having a really good day! I don't know how or why but I'm feeling good. I felt so crappy yesterday, had a horrible headache & guts were a mess and I was nauseous. But I went to the gym anyway and felt significantly better afterwards. Had a healthy dinner last night (baked salmon and sweet potatoes, yum) and slept wonderfully for once. Woke up feeling refreshed instead of exhausted, guts are quiet and headache is 95% gone. I started Pentasa today so hopefully that'll keep the good days coming! :)

On that note, has anyone else here taken Pentasa before? Holy cow, the capsules are huge! I could barely swallow them this morning. They're gigantic and they float to the roof of my mouth and they hit my gag reflex, not good. I've never been great at swallowing pills and this is going to be a challenge to do every day. I have to take 2 pills, twice a day (so 4 pills total daily). So I get to try to swallow these giant things twice a day, great. Hopefully they'll work so well that I won't care about how hard it is to get them down!

How's everyone else? Has anyone heard from Gabi lately? I hope she's okay, I worry about you guys when I don't hear from you, and I'm really worried about her especially with her being in the hospital and everything! Hope she's getting some proper care and relief. How's everyone else? Anybody have upcoming tests or anybody get test results back lately?
 
Hi everyone.

I've been depressed and cranky. I can't believe I'm still out of work. It's so ridiculous. I haven't had D since the bloody mucus episode, it went to hard and mucus-y which freakin' hurts. It's not coming out less frequently either. my poor bum feels ripped up right now. I have to call the GI doctor to find out what we're going to do next. I saw my GP today and stopped another medication. I just feel helpless. grr.

bozzy - I'm not done with my tattoos. I ran out of money :) My tree needs scenery and stuff. Who knows when it'll ever happen.

I dislike Tuesday. World of Warcraft does server maintenance on Tuesday. Totally screws up my morning :p
 
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
 

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