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Ballerina, it sounds like that was a very good appointment, and I'm glad IBS has been shelved for now and that you're having some tests done. Are there plans for other tests if the bloods and CT aren't enlightening?

That's actually my tentative pseudo-diagnosis as well, presumed IBD and presumed inflamamtory arthritis (also in my hips!). I saw a worthless rheumatologist last year who at first said it must be inflammatory arthritis, but after an MRI of my hips he said the MRI was clear and that he has no idea what to do with me, so I dumped him as a doctor. But later, my GP said that the rheumy had put in his notes that I likely have inflammatory arthritis in the sacro-iliac joints (there's an ileum in the guts and an ileum in the hip joint it seems, and I've apparently got issues with both!). So that's what I'm going with - my GP says it has to be some sort of arthritis, but he's not a specialist and can't say for sure what type, except that it's definitely not RA. It's likely connected to my bowels as well - I'm 34 so not quite a spring chicken but not old by any stretch either, and my GP says I'm too young for "wear and tear" type arthritis. It doesn't seem to be genetic as the only other person in my family with any type of arthritis is my 82 year old grandpa (his is also in his hips, oddly enough, and he seems to have some mild digestive issues too, although those things may just be due to his old age).
 
Im in work and feel awful, leaving earlier than normal to go home. I went for a rest in the first aid room and fell asleep (drooled on pillow lol) when I got up I was so dizzy. Took a cyclizine anti sickness tablet as the nausea is overwhelming. I have no idea what's causing it again. Bus home is 50 mins so here's hoping there's no actual vomit or fainting... :( :( :(

I do hope everyone is having a good week...I'm going to look through forum at trigger foods etc but I am keeping a record of what I eat (or lack of!)
 
I haven't been around much lately. Finally got a call from the GI nurse and they said that the agile capsule has been approved, so I'll be swallowing that on Thursday and being x-rayed on Friday (this week). If it's successful, I suspect I'll have the pill cam within the next couple of weeks. I hope the agile capsule passes - the thought of a 9 foot long tube going via either end sounds risky - even if it is done often.
 
Good luck Eternal!
Hope you're feeling better by now Suzie. Do you think it's a stomach bug?
Cat, it was a great appointment! I seriously went in expecting her to not be able to do much about it besides refer me to a GI, but apparently that's not the case at all, at least not in this stage yet! Makes sense when I think about it, seeing as how she works at what functions as an urgent care center. Yes, she did say that depending on the results she'll either run more tests, refer me to a GI, or start me on treatment - and she's usually good about agreeing to run a test per my request, if need be.
How is everyone today?
I was supposed to have my ct scan this morning but we ended up not being able to do it and rescheduling for tomorrow instead. The order I had gotten was for a scan without contrast, which I was wondering about but decided not to question; but when the radiology tech read what I was coming in for/my symptoms, she said it should be done with contrast as otherwise it really won't show much of anything. She called the radiologist to check what they recommend and they did say they would want me to do it with contrast. She called my doctor and indeed she said it should have been with contrast. I was very glad they caught that and questioned it and corrected the mistake! Since a doctor needs to be there if they administer contrast, I could do it today because their doctor isn't there on Wednesdays. So instead I'll be going in tomorrow morning to do it! The good news is I don't have to drink an insane amount if barium! They're using a different contrast that I have to take an amount the size of a cough syrup shot of plus water/lemonade (which I guess better helps wash out the taste than water). I assume it's gastrografin but she didn't say so I could be wrong. I'm not sure why they're using this instead of barium but I'm quite alright with that ;) I'll also have IV contrast. I'm getting a bit nervous - same thing as before, "what if they don't find anything?" But worrying won't get me anywhere good sooner, so all I can do is hope for SOME outcome!!
 
Well had a really bad 2 days, in so much pain and d like mad! 30+ times both days! Can't win! But been put on Pred for a trial! Hoping this will help now! Long overdue a normal day!!
 
Thanks happy ballerina I'm not sure what caused it but it wasn't pleasant. Been up since 1am on loo back and forth and again no idea why! The stomach cramps were insane...and I've had 2 kids so know what contractions feel like! 9 sleeps until hospital appointment for colonoscopy, dreading the prep after that last night lol.

Roseanna I hope you keep ok today and your days start to become more normal x
 
Rosanna, that's such great news! Finally having someone take you seriously.

A small update (rant) on myself. No letter yet from the hospital. The NHS waiting lists for bowel related problems must be huge! I'm tempted to just go into A&E and speak to a doctor there. At least then I might get sent for a CT or something. One of my main issues right now are mouth/throat sores, so painful and constantly catching on my braces...ugh.
 
I'm so relieved Lewis! Started Pred this morning so hopefully will make a difference! Fingers are VERY tightly crossed!

They are so damn backed up unfortunately Lewis, i had a year of waiting between tests and seeing someone. A rudy year!!!! They havent got the GI's to cope with the demand! Its a pain in the ass! I couldn't stand the thought of the weight at a&e, especially as their toilets are always full and when i have to go, i cant wait, i nearly passed out the last time i went to hospital after 10 mins of waiting for the toilet. I just couldnt do it! So unless i have to, i dont go!
 
I learned to chase tests and appointments, also request cancellations, either with the Dr who requested it or directly with the department performing the test.

Sometimes you can get results with that.

If I never chased anything I would be in a sorry state now I always urge people to do it because sad as it is you have to look out for yourself since no-one else is!
 
Had the agile capsule and just got the x-ray. It's in my colon, meaning it has passed my small bowel (which has thickening), so that means I will be able to take the pill cam. Hoping I can get it done on Monday as the bowel prep and having wear a monitor will mean I would have to take a day off work and I would rather do it while on 'vacation'. LOL. Hoping for a phone call today.
 
StarGirrrrl said:
Hi Jboy, we get more undiagnosed than diagnosed people reading this thread, so you might get more responses if you post in the General IBD discussion board :)

I do hope that your scopes lead to a diagnosis, however it's not certain they will, but the good news is there are other tests that can look for example at the whole small bowel, becuase it's super super long and each scope only peeks into either end.

:ghug:
Click to expand...

Sorry about that StarGirrrl! I'll post something on the general board, one more week till I find out for sure hopefully with the scopes. I hope I get a diagnosis next Friday, one more week. Got blood tests for inflammation (C-reactive) and they came back negative about three weeks ago, so we'll see if it's Crohn's or not.
 
I jumped the gun on the test results. I just got a call saying that the capsule was still in my bowel and I am not a viable candidate for the Pill Cam. Great - tubes. Next follow up is on July 15th.
 
Oh No - Eternal_Howl

Not good news:(

At least your next appointment is soon?

Good luck :ghug:

Sending good thoughts from NZ
 
Still no appointment about the anaemia follow up, which is a pain since it is due next week.

But I have a test there Thursday (heart ultrasound ordered pre-anaemia) so I am going to have that done since I think it is important given recent events and do my final set of blood tests at the same time.

I was asked to do them in 4 weeks/ a week before clinic appointment and it will be 27 days Thursday so I will get them done and hurry them up about my outpatients appointment. If both sets of bloods are done I figure I can offer to come in at short notice.

I started to feel really bad again Wednesday but the same day I was back on iron tablets (my new Rheumy asked GP, I wasn't given sufficient instructions or tablets on discharge to sort out myself which was probably a mistake I admit) and been feeling a bit better each day so that's good. Looking better too according to my mum! It was a mistake not to sort out myself but I will have one set of bloods no tablets and one set 1 week of tablets which might be useful.
 
Hi everybody, hope all is well :)
Star, glad to hear you're looking and feeling better with the iron tablets! Do you know the cause of the anemia yet?
Leanne, all I can do is sympathize with you! Haha :p <3

I went in for my CT scan on Thursday and they had a VERY hard time getting an IV started in me. Small veins, and inserting an IV is harder than drawing blood, which always proves difficult enough as it is. Thankfully they finally succeeded (on what they said would be the last attempt!) and we were able to get it done! Since then, I've been looking at the images (I got a CD of them) bordering-on-obsessively, hahaha :D It is SO interesting. I don't know if I said it here before, but I want to study medicine and am a pre-med student right now. So, naturally, I'm intrigued. But, I'm also utterly clueless about radiology, which is a highly specialized and difficult field in itself! I think I've finally identified most of my organs and I'm basically trying to stay patient now until the weekend is over to hear back about my results. I'm honestly not too hopeful just because of past experience and having this kind of prepared mindset already engrained in me that nothing will show up, you know...
But anyway, we'll see. With my awesome and utterly unprofessional CT interpretation skills (read: I have some idea, but still close enough to no idea what I'm looking at), I see several instances of what I think to be small bowel thickening and I even think I see a fat halo sign in my sigmoid colon, as well as what I think may be a comb sign but may actually be something entirely different or nothing at all! I really have no idea and so I am not taking myself or anything I see very seriously because I might be right but I might also be waaaaaaay off :lol:

I wish I had a radiologist friend I could just call to come over and tell me what I'm seeing! That would be nice. Instead I'll just wait, ha.

Oh, omg. I have two little abscesses in my left groin. I'm fairly certain - like 98% - that they are ingrown hairs, but the other day I realized it might be related to my bowels. It's probably not. I'm almost sure that they are ingrown hairs. One of them has been going on for months - I keep draining it but it keeps abscessing back up again. I think it's not going away because I might not draining be it all the way and then not disinfecting it enough after. The other one appeared a day or two ago and it is incredibly sore!!! I also can't drain it at all, because it hurts very very very much to press on it, and it almost feels like a small marble inside of me. It actually hurts the way it does when I press/squeeze my inguinal lymph nodes when they're swollen, and I mean EXACTLY the same kind of sensation only more painful, which makes me wonder if it IS actually a lymph node that's inflamed, swollen, or even has an abscess on top of it. I have no idea but I'm just going to keep an eye on it now and put antibiotics. I'm still pretty sure it's nothing more than an ingrown hair, both of them.

I'm also still waiting on my blood lab results. But I know my doctor wanted to wait until all the tests came back so I assume once the CT scan results are in I'll be notified as the bloods should be finished by now. I think they already have the CT scan results actually, but my doctor isn't in the office today. I actually don't know what days she'll be in this week but obviously I'm hoping for Monday :)
 
Yesterday I was having a conversation with my sister about her bowel problems and apparently she has had two inconclusive colonoscopies. What confused me is that she didn't need to prep in the way I've read many do on this forum, she just had to give herself an enema 2 hours before which actually gave her really bad diarrhea just before the procedure was done...which doesn't sound pleasant for her or the person performing it. Not to mention she had 7 med students in the room. Surely the bowel wouldn't have been clean enough to perform a proper scope?

Just hoping someone could shed light on this. I've never heard of this before...I'm just hoping she didn't put the prep up her bottom instead of drinking it! :ylol2:
 
Hi Everyone

Thought I would give a bit of an update.
I am in the process of packing up myself and little one to travel for colonoscopy and gastroscopy on the 8th. We will stay with my Mum and Dad, so it will be good to see them too, and my Sister will visit too:) I have been feeling really yuck, and have not been able to do any study which is concerning. I had some blood tests done, and they don't show much, ferritin is dropping and potassium too. Though they did not do Vit D and magnesium as I asked.

Have had a chat with my husband tonight and he thought I had gone off the doxycycline (which was stopping upsest tummies) and that was why I was unwell at the moment. Um, no- Still on it - gluten is not helping the situation, but strangely he can't tell the difference between where I was at, and now?
Was - 15-20 bm and 1-6 vomiting per day (some bm per night) + really bad nausea.
vs 0-5 bm/day (some during night) while on doxycycline

Men!

Sorry guys:tongue:

So anyway, a very busy week organising everything, listing what we need to buy when we are over there, sorting the house to be left for awhile, stocking up on food for my husband, and catfood, and catching up on the washing etc.

And all while I am really fatigued:(

Although last night I got all my medical records, test results, referral letters etc, and put them in a binder all organised, and then put the blood test results in a big spreadsheet. Felt good to be organised with something!

I hope everyone has a good week coming - me included!
 
Lewis it may have not been a colonoscopy but a flexible sigmoidoscopy... I had one of those and while I had oral laxatives the night before on the day of the procedure at home I had to do a rectal enema much like your sister described.

I don't think it's possible to put it up your bum by mistake, laxatives tend to come in sachets of powder which you drink or plastic pipettes/tubes which go you know where :D

I have read of doing a colonoscopy in a Hospital setting with an enema just before while you're there but that's all I can come up with.

happyballerina no no cause on the anaemia yet, waiting for an outpatients appointment where they are going to assess my last two sets of blood work and see what (if anything) happens next. On admission to the Hospital the working theory was it had been caused by medication but the results of the upper endoscopy and blood work (iron was not the only thing to be low) suggested otherwise and when I was discharged they were much less sure of this theory than at the beginning.

I didn't have IBD said to me but I can read between the lines. They did consider discharging me with an emergency colonoscopy appointment but decided on a wait and see instead, they ran cealiac bloods at least 6 times and took biopsies during the upper endoscopy (which were negative), I ended up on a medical ward specifically for aneamia/GI problems under the care of a GI consultant lol and that is also who I am supposed to be seeing at Outpatients....
 
@StarrGirrrrl - Thanks! Didn't know there were other types of scopes for that...region.

Quick update. Pain, and lots of it. Trying to make a doctors appointment, but it's near impossible. I've been told to call in at 8AM tomorrow, but it's still not guaranteed that I'll get one because I might get 'beaten to them'. My doctor specifically told me that if symptoms worsen that I should get in touch and make an appointment. I just want it all to go away...

Last night I had the strangest BM. I apologise now for what I'm about to explain (SORRY!). So, urgently as ever I sat down and peas started coming out undigested and looked almost unchewed. Pretty sure I chewed them. When I wiped it was just a huge blood clot looking thing on the tissue with lots darkish blood. This isn't new for me, but it hasn't happened for many months. God knows what's happening inside me! :(
 
Hi lewis, I really hope you get an appointment for tomorrow. If people 'beat u to it' then ask for an emergency appointment or ask for a doctor to call u back. You need medical advice x
 
Lewis, yes, as Star said, it's probably a flexible sigmoidoscopy (flexi-sig for short). It's not as comprehensive as colonoscopy - it only sees the rectum and part of the sigmoid colon I think? The benefit of it is that it can be done in the office, no prep and no sedation needed so you can drive yourself home. I haven't had one myself (my GI offered one to me last year but I opted for a full colonoscopy as I had some bleeding issues and wanted to find the source). Obviously colonoscopy sees the entire colon and the very end of the small intestine so it's a superior test, but the downside is you need to take a full day off for sedation and you have to do prep, etc. I presume your sister is having some digestive issues as well if she's had 2 flexi-sigs? How is she doing now, is she still having symptoms and/or pursuing further testing?

Ballerina, I didn't know you were pre-med! That's great, we'll all be coming to you in a few years so that you can diagnose us. ;) Kidding of course, but I am curious - are you going to specialize in gastroenterology? I've heard that there's sort of a stigma with doctors who specialize in what they suffer with, that that kind of thing is apparently frowned upon? At any rate, that's really cool that you were able to put your knowledge of radiology to use - I'm sure it is a tough field to learn (I know a couple radiology techs, no actual radiologists though, and the techs I know both had to do a lot of schooling just to know how to run the machines, let alone how to read the scans!). Good luck, I hope you can get ahold of your doctor today for interpretation of the results!

Howl, that's disappointing, but on the plus side, surely there must be something there that they can visualize another way - the capsule doesn't just get stuck randomly, there's got to be narrowing or inflammation going on that's preventing it from moving. So hopefully this ends up being a good thing and another step towards diagnosis. Did they say where it's stuck? If it's in the small intestine, you could ask for an MRE (MRI-enterography, or specifically an MRI of the intestines) to have a better look. Good luck on the 15th!

Star, that's great that you're looking & feeling better! Are you still going to have a colonoscopy soon? Because like you said, it sounds like they're taking your gastro symptoms more seriously now and acting as though it's IBD. I know for the longest time all your doctors would say is that it's something unknown and inflammatory, so this seems like a step in the right direction?

How's everybody else today? I'm kind of bleh. Stressed because of work stuff today, but feeling better than I did last week. My car is finally fixed and I'm not in a mini-flare anymore so I can't complain too much I guess.
 
Haha, ok! And no, I have NO IDEA what field of medicine or specialty interests me. I'm still completing my undergrad degree now...I've been doing college part time and on and off for the last 4 years in order to accommodate my ballet schedule but now that I'm not doing ballet anymore I can do college full time and actually pursue the career in medicine that I want! So my major is Biology/Pre-med with a concentration in physiology. Hopefully I can transfer to Emory in the spring (crossing fingers that I not only get in, but that I can find a way to afford it...uuuuh), and there I'll probably switch my major to something more specific but still pre-med. I was joking abut my radiology experience by the way - I have none! Haha. All I know is what I've learned in the last several days! However I can say that what I earlier thought was the comb sign is most likely actually not. Still looks to me like I have inflammation/thickening of bowel walls but again, I don't trust myself to really know what I'm looking at and odds are the CT will show nothing. Just my luck, right! I haven't heard back yet, though, so we'll see. I don't know when my doctor is working this week but I might call to find out just because I'm feeling so impatient. Even though I'm sure they won't find anything. I just have that feeling.

In the last few weeks I have had a decreased appetite but it hasn't kept me from eating a lot, thanks to my per-existing eating/food issues which overpowered any appetite loss. That is, until very recently! I actually have such little appetite now that even my food issues are taking a back seat (for the most part) and I'm eating significantly less than I was. I think I'm still eating enough, and I could use the weight loss so it's not like I'm concerned or inclined to force feed myself. Especially since I'm so habitual about my eating that I end up eating by the end of the day just because it feels incredibly strange to me to not eat! I don't think it's a bad thing because the less I eat, the less pain I am in and the less time I spend in the bathroom. The funny thing is that I think part of the reason I make myself eat by the end of the day even if I have no appetite, aside from it just feeling weird not to, is because I keep wanting to sort of "test" my body to see if it's still messed up when I eat. Like I'm checking if it still hurts when I eat. Is that weird of me? :)
 
I'll find out about the colonoscopy when I go back for my follow-up. They originally were going to discharge me with an emergency colonoscopy appointment but decided on a wait and see approach instead.

I am assuming if my blood work is still not great they will then do that.

I kept telling the Drs there over and over had this test and that test all normal in the past. But I think the anaemia made them take me seriously as that has never happened before.

It certainly seems like a step in the right direction but so much still is unclear right now. It could be IBD showing itself or I suppose could have been the medication after all!

I will know more after my follow-up appointment having had two sets of bloods done in the meantime. Still haven't got it though and it is supposed to happen this week/next week.
 
I've been taking Bentyl for the last few days to see if it helps me but it doesn't seem to be doing much for me at all. It is possibly reducing pain, but I'm finding it really difficult to tell if it's really the action of the medicine or just because I didn't happen to have as much pain, since my pain comes and goes rather than being constant; some days are awful and some days I have no pain at all and then some days I'm anywhere in between. All I know is that if the Bentyl is helping me in done way, then it's not helping enough for me to notice it for it to make a difference. It's 3:00 AM here and I just want to sleep but I'm on the toilet for the third or fourth time this hour. I have a feeling I'll be able to get some sleep now until morning but still it is frustrating to be up of late going to the bathroom. In a related note, my mom just booked tickets for a trip to costs rica on winter break for all four of us and I am sooooo excited! We're leaving on my birthday December 20 which makes it even more fun :) I told my mom though that I will need to make sure I have a plan set in place for how to deal with this in case Ihappen to be flaring then because I just cannot be sick during this trip. She agreed but said she wants me to be better way sooner than that, and I agree with her lol!! But yeah...it's obviously too early to tell how I'll be (and honestly you just can't really ever know because it can come on so suddenly), but it's definitely something I'll have to plan for and speak with my dr about. With any luck, I'll have a Dx, get treated, and be in remission way ahead of time (yesterday would be nice...haha), and I can enjoy the trip completely.

Still haven't heard back about my tests results but I don't know if my doctor was working today (she wanted to call me herself so it just depends on what days she's in the office this week). If I don't here back by evening. I think I'll give them a call just to make sure they got the results, and possibly to ask if there is any use giving the bentyl a few more days time to see if it works or if I can just stop it since it's not helping (I don't want to take any extra medicine if it isn't really needed or helping).

Does anyone here have experience with Bentyl and, if so, how was it?

Also, as a side note, my hips and back have been very, very painful and bad for the last several days. I haven't even been dancing at all for three weeks and I would have thought it would help but that dies not seem to be the case! If anything, they're worse now then when I was still active and dancing three weeks ago. Well...whatever. Hoping for some answers this week or at least (please please please) a step in the right direction.
 
Back to the doctor today! My pains have increased in intensity, I have a mouth full of ulcers and passed blood yesterday. Not sure what he personally will be able to do, not being a specialist, but surely he can speed up my referral... :/
 
Melibean, we missed you too! Cindy is doing well according to her facebook posts - I'm not sure how up-to-date you are on her situation, but she and her husband both lost their jobs in the same week, so they moved back to Wisconsin where they're from (a few hours north of where I live). They were living with her in-laws for awhile, but they've finally just moved into a place of their own (literally yesterday I think?). I'm not sure how things are going job-wise with them but it sounds like she's doing well overall. She also said that on her recent scan, there was no evidence of the tumor, so that's also good news. :) The tumor will grow back eventually (she said it's not a matter of if, but when), but for now it's not making an appearance so that's as good as can be expected.

Ballerina, I've taken Bentyl sporadically in the past with minimal results. It's an anti-spasmodic, so at best it alleviates cramps but that's about it. At worst it doesn't work or even gives you weird side effects, and I think that's what it did to me the last time I took it. A few months ago I had really wicked menstrual cramps that were in turn making my gut cramp up, so I took a Bentyl out of desperation. But I think it gave me slight hallucinations? Or maybe it was more along the lines of a migraine aura, I'm not really sure. All I know was, shortly after I took it, I suddenly smelled something horrible! It smelled like disgusting body odor. I couldn't place the source of the smell and it came on out of nowhere - it seemed to be coming from me but also from everything else (my purse, my desk, etc - everything I smelled just smelled like hideous B.O.). It was really odd! After maybe an hour of that, the smell (which was likely just in my head) went away and everything smelled normal again. I hadn't taken anything else new or different that day so I'm pretty sure it was the Bentyl. And I haven't taken Bentyl since because that was just so weird and disconcerting! Sorry that's not particularly helpful, but in a nutshell - it doesn't do much for my cramps, it does nothing for any of my other symptoms, and it apparently messes with my head/ability to smell! My aunt did some googling and she found something that said that in the middle east, some people will take large amounts of Bentyl to get high, so maybe it is a hallucinogenic in higher doses (I only took one though!). It was just super weird and I probably won't ever take Bentyl again.

Lewis, good luck! Let us know how it goes at the doctor, I hope he can do something to help.
 
Oh, and Ballerina - I have arthritis in both hips, and I find that exercise helps quite a bit. High-impact stuff like jogging makes my hips hurt much worse, but low-impact cardio, strength training and stretching seems to help. So maybe try out some gentle yoga, or a short bike ride (if you have a stationary bike, you can stay near your bathroom). Or do some ballet if you feel up to it! Don't push too hard, and nothing too high-impact (even walking can make my hips worse some days).
 
Pffff I found out that I did have inflammation marks in my stool. But not extremely high, but the GI never told me...
My new GI told me.. But he isn't a good GI. He din't ask me what kind of pains I have, which color my stool is etc..
 
Thanks Cat!

He didn't give me anything for the cramps, his reponse was 'we need to know what is causing the pain first!' which is true and I'm happy that he has that attitude. Rather than pain meds, he's booked me in for another blood test tomorrow to see if anything has changed or increased/decreased and he's trying to speed up my referral.

Hopefully I'll get to the top of this waiting list soon! Feel like I'm going round in circles having blood tests, being told I have high inflammation markers and anemia and getting nowhere. I got prescribed more iron and b12 - a little confused on how it all works, do I always have anemia now or what? :shifty:

:quack:
 
I'm no expert, being somewhat new to the world of anaemia, but it has a cause, so if they find the cause and stop it, the anaemia should stop.

For example there might be a bleed somewhere in your intestines, if you get proper treatment that should heal then no more bleed no more anaemia.

Of course, it can re-occur.... :( I believe it's Crohns (maybe Ulcerative Colitis) too where anaemia and low b12 can be common. I have a distant cousin with it and she has regular B12 injections, her family can tell when she is getting near her next because she starts to fade almost.

I'm glad though your GP sounds like he's been helpful, more blood tests can only mean you're being looked after well and being taken seriously (speaking as someone whose Drs didn't bother to the point I ended up so anaemic my life was in danger) and hopefully he can speed up the referral. Sounds like he is being pro-active and trying to help which is great.

:ghug:
 
Didn't get official results back from my doctor yet but I called and the nurse said the ct was normal but that there was something about thickening but then later she said there was no thickening so that left me confused and thinking she doesn't know what she's talking about :p Just going to wait until all the rests come in and my dr calls me to see what the next step is. I was looking through some old medical records and I found the labs with the positive PANCA from 2009. Ratio of 1:160 compared to the reference range of <1:20. Just want to figure this out already. I wish the ct would have shown something instead of leaving me hanging.
 
I had a poo this morning and there was blood on it, and now I am only pooping blood and mucus, the blood is dark red/brownish.
I am so fed up, that they can't find anything, but there is really something wrong.
 
I get that too sometimes Leanne. I don't know what it is. Was the mucus in clumps in the toilet bowl or was it just sticky/wet when you wiped? Sorry for the gross question, I'm just curious to know what others experience as I get both; sometimes clumps and sometimes just "wet" that I can see on the TP. I also get a variety of colors...lol...sometimes it's clear to yellowish-white, usually when it's clumps it's pale pale brown, and still others when I wipe it's bright yellow like pus or mucus. I was actually wondering about this the other day, as surely the different colors indicate a different pathology/process - or at least I would imagine them to. Again, sorry if TMI.
 
Also both, yesterday I had to bring my poo to hospital and I had a massive clump of mucus in it.
I also have different colors sometimes green/yellow and other times white or clear or red or brown etc.
 
I get mucus as well, usually when I'm having other symptoms. It seems to be a sign of inflammation although I've read that some doctors think mucus can occur with IBS as well, so not totally sure. For me though it's just another symptom when I'm having a bad day. It can come in multiple colors for me as well (usually it's white/clearish but it can be yellow, brown, etc) and ocassionally it can be mixed with blood. I haven't had any bleeding since I went back on Entocort about 6 months ago (will be stopping Entocort soon so it'll be interesting to see what happens then!). I did have mucus the other day though so who knows! My GI says the source of my bleeding is internal hemorrhoids so maybe the bleeding isn't related to the mucus in my case?

Apparently some mucus is normal for everyone though - mucus lines the intestines and helps the poo slide through. Most people don't produce so much mucus that they ever see it in their stool, though - that's what sets us apart I guess.

It's weird how similar the guts and the sinuses are in this regard. Besides the whole mucus thing, the guts have the 2nd largest amount of histamine receptors in the body. So if you're passing a lot of mucus, this is weird, but try taking an allergy medication such as claritin. That can actually help some IBD patients. Unfortunately it's never helped me, but it's worth a try! There was at least one person on the forum who treated his IBD with allergy medications only, and I recall that worked for him for something like 7 years (after that time, it got worse and he had to go on IBD meds as well).
 
Mine is sometimes yellow or clear and sometimes mixed with blood too. I wouldn't say mine was a clump, it's more of a gel-like substance. About a year ago I went to the toilet and literally all that came out was thick clear mucus and I think that's when my symptoms first ever started, so I definitely think it's a biggie when it comes to symptoms.
 
I get mucus a lot, various colours, various consistencies, when I mentioned it to the GI he wasn't bothered. He is sending me for a liver and gall bladder ultrasound scan, but im not sure why, as my liver function blood works were fine, and my pain is nowhere near my liver or gall bladder. ah well.

At the moment I take cetirizine (antihistamine), loperamide (anti diarrhoea), codeine (pain killer but used in my case to try and stop the diarrhoea), femodene (pill) and amitriptyline (anti-depressant, which is being used as a small dose as a pain killer/anti diarrhoea, its stopped my hip hurting but isn't doing a whole lot else)

Still got all the usual symptoms of blood and mucus, pain, mid-night trips, urgency, diarrhoea (this has improved with all the anti-poop pills, but i'm still going several times a day)
 
So saw my GP who is a PA today and this is what happened. . He prescribed me Topamax which is for seizures and migranes but has a side effect of weight loss which why he wanted me to take it. I'm suppose to go see a cardiologist but all my blood work is fine. I stopped taking the Topamax because the side effects were too bad. I'm still having stomach problems and am waiting for referral to a GI. Today I went in pain and my BP was high at 160/90 which is usually 120/80. He came in and said that he doesn't know how to treat me, I'm too sensitive to medications and that he doesn't want to talk about my stomach anymore. That no one knows how to treat IBS*What previous GI diagnosed me with* and he doesn't want to see me anymore and maybe better luck with another doctor. He asked what I had eaten and didn't believe me when I said nothing for breakfast and lunch yesterday. He said I'm overweight and at risk for stroke heart attack and diabetes and ended my visit to come back in six months. I feel like crying .
 
Melibean said:
So saw my GP who is a PA today and this is what happened. . He prescribed me Topamax which is for seizures and migranes but has a side effect of weight loss which why he wanted me to take it. I'm suppose to go see a cardiologist but all my blood work is fine. I stopped taking the Topamax because the side effects were too bad. I'm still having stomach problems and am waiting for referral to a GI. Today I went in pain and my BP was high at 160/90 which is usually 120/80. He came in and said that he doesn't know how to treat me, I'm too sensitive to medications and that he doesn't want to talk about my stomach anymore. That no one knows how to treat IBS*What previous GI diagnosed me with* and he doesn't want to see me anymore and maybe better luck with another doctor. He asked what I had eaten and didn't believe me when I said nothing for breakfast and lunch yesterday. He said I'm overweight and at risk for stroke heart attack and diabetes and ended my visit to come back in six months. I feel like crying .
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Definitely see another doctor. He obviously doesn't want to help you get to the bottom of your problem. We all know being overweight increases your chances of diabetes, stoke and cardiovascular disease - what a cop out he was. Not every overweight person is overweight simply because they eat too much. There's genetic factors, medication, edema and thyroid problems to consider.

Don't let these doctors that just spout medical terminology and basically use what they learnt at university as a script let you down. There's some out there that do care and genuinely want to help.

:ghug:
 
Melibean, big hugs to you! I concur with what Lewis said - time to find a new doctor, one who actually cares about helping you. I really hate when doctors pick a thing and blame all the patient's symptoms on it even if it's blatantly untrue - whether it's weight, or "women's troubles" or depression or "it's all in your head" (I've pretty much heard them all except for the weight one, but I'm sure if I was heavier then I'd hear that one too!). I talked about this awhile back although I don't recall which thread it was in - when I was in college, my roommate was overweight, and she had asthma (no idea if the two were related - she had always been overweight and had only recently developed asthma, so I suspect they were not related). She also had a bad habit of forgetting to bring her inhaler with her. So several times, I had to take her to the ER when we were out and about and she had an asthma attack (the next town over had a better mall, so we'd go out of town and she'd forget her inhaler and then get into trouble, and home was too far away so we had to go to the ER). And just about every time that happened, the ER doctor (different doctors each time, too) would sit there and lecture her about her weight, as she's wheezing and trying to breathe. And I'm like, she's maybe dying, could you just help her?? Like, be a doctor and not a jerk for a minute? I feel like this is a similar situation - you may not be dying, but you obviously aren't well, and maybe if they actually get to the source of your illness and treat the illness itself then you can deal with the rest of your health picture once you're not dying or at least not feeling like death. Ugh.

On the plus side, stuff like this is why I'm so happy to know that there are people like Akiva and HappyBallerina - you guys know what it's like to be a patient and you're both going into the healthcare field. I know you'll be amazing at what you do and you won't blow off patients or blame it all on stuff like the patient's weight or them being stressed or whatever. You guys will have actual empathy for your patients, which sadly seems to be something they don't teach in medical/nursing school.
 
Hey guys thought I would check in!

Melibean, totally relate. I got taken seriously when I was skinny. Docs have made me overweight with steroids and now if I go in and say I'm prone to losing weight they give me the beady eye. The first time I saw my GI he said my bowels would get better if I lost weight and being overweight was causing the pain. They just speak without thinking. For me at the moment, being in pain means lack of exercise means no weight loss. They should really ask if there's any other factors there. Sorry I'm rambling.

Cat, I have to say that even as a dentist I seem to clean up a lot of doctors messes. They come in to me telling me about their physical ailments. There was a case recently where the doctor kept telling the patient the problem was caused by her teeth and she had a precancerous condition. If I hadn't pushed for her to get tests she would have died. Shocking, really.

Anyway, I'm glad my rheumatologist ordered a repeat ultrasound because it's revealed I'm not going crazy. I have a small stone in my gallbladder, actually saw it with my own eyes, that the previous tech missed. She did say it was difficult to get a picture of. So she thinks the stone is floating about and occasionally blocking off the duct because of it's small size.

This has taught me an important lesson - a negative result is not always a negative result ;)

Depressing thing is I had the scan on the NHS within a month and I'm not seeing a consultant on the NHS until November! That's a crazy wait. So my private health insurance is covering it, which is pretty unbelievable. Seeing consultant this afternoon to find out if I need surgery or what. I guess he'll want his own scans too.

My GP took me off LDN so I could get stronger painkillers into my system. Naturally this has resulted in a bowel flare up, particularly since I was taking lots of diclofenac. Bleeding, mucus, urgency, and PAAAAIN. I've been on LDN a week and the d has stopped and I'm starting to feel better though.

I have to say as well I forgot how DISGUSTING night sweats are. Eugh.

Hope all is well :)
 
Feel awful today :(

Constant pain and feel like I'm chained to the loo! Had my repeat bloods taken, not sure what more my doctor will achieve with those, I think it's mainly to keep an eye on my anemia.

What worries me most is how concerned he looks/speaks when he sees me, tells me how pale and unwell I look every visit! Then why am I waiting so long to see a specialist?!

I'm going to end up in A&E if this continues and I really don't want that. I just don't understand why I can't be made an appointment to have an MRI or scope because I know I'll go see this specialist and the first appointment with him will just be 'what's your symptoms?' and some physical examinations. -_-

Feel like I'm dying and to be honest, how I feel right now, I'd welcome it.
 
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Hey guys, I went in to see my doctor a couple hours ago to talk about my test results. Everything came back clear! She said she was absolutely sure that something would come back (arthritis, any sort of inflammation, etc.), but nope - everything came back normal. The one thing that came back abnormal was my thyroid panel which is preeeeetty bad :p TSH is extremely low and yet so is T3 (I'm on Cytomel (T3) only therapy at the moment). She went over my results with another doctor and they both agreed that there is no inflammatory market that would account for any of this, but that my thyroid levels are really concerning. In light of this, she thinks my thyroid is responsible for all my issues including the bowel problems, and she might be on to something. She recommended ablation but we decided to add a very small dose of T4 to try that first in case it helps so that we can avoid ablation. If it doesn't help, I'll probably go see an endo again for a second opinion. More so for my mom than for me, honestly, but it wouldn't hurt. So, currently, I don't have any obvious cause for my bowel problems or my back and hip problems except for, tentatively, the thyroid idea. It so happens that for the past few days, my bowels have been doing better out of nowhere. It would be an exaggeration to say that it's totally back to normal, but still it is significantly better than how I've been doing for the last 3-4 months. I'm not particularly surprised that it seems to be going away randomly because (1) it went away on its own randomly the last time this happened too and (2) if it can come on randomly then there's no reason to think it can't stop randomly. Hopefully it does keep getting better because I'm very tired of this flare and would love to have my life back! We'll see what happens with my thyroid meanwhile. The next time I have a flare-up, if I do end up having another one, or if my GI issues continue to get worse despite regulating my thyroid, I'll go ahead and see a GI specialist directly for their opinion.

On a more exciting note, I've also just been accepted by my doctor (the same one I saw today) to shadow her starting in August! Yay!! I'm so happy :)
 
Lewis I can understand why your GP wants you to see a specialist but a GP can also order scopes... if you're really not coping well then go back and tell them and ask if they can order tests if the consult can not be hurried up. You may be able to get the tests on an emergency basis once you see Consultant but that doesn't help you in the meantime and who knows how long the wait would be even for an emergency.
 
Feeling much better now, thanks :)

At the start of the day it was so difficult to pick myself up. I had no sleep because all my stomach did was growl and was making these weird dribbling sounds, like a tap that's been left on a little. Then there was the pain. I managed to get myself in a nice warm bath, have some peppermint tea and had a long nap! Still feel a tad crappy, hopefully I'll be back to normal (as can be).

I'm going to wait until Tuesday (when I get my blood results) and see what he says. I have a feeling based off those he will take some further action to hurry things up. I also think I need another form of anemia treatment, perhaps an infusion, because I just feel out of it all the time.
 
Lewis, sorry you are having such a problem - I know it doesnt make you feel better, but my 'emergency appointment' took 4 months (from my GP eventually agreeing that maybe its not 'just IBS'), and they did nothing and no-one took me seriously until I was acutely unwell in hospital (1 month later...) I hope you get sorted sooner - dont be afraid to stamp your foot - i know its easier said than done. also, dont be afraid to go to a/e if you need to - I know its not ideal, but if you get so unwell that you have no other choice, then use it :)
Igs - pretty please can you be my dentist? I havent had a good experience with a dentist ever, and all I ever get is 'you have bad teeth and it is because you only eat sugary foods and fizzy drinks'...lets just say my response to the last one was less than cheery - but if I was skinny this wouldnt be the case.
There is nothing more frustrating that having a medical professional who fixates on one thing, whether reasonable (or in the case of relating everything to weight or because you might enjoy an occasional drink etc...) or not, is very very frustrating! I am battling at the moment - I am really suffering from disabling fatigue and dizziness and my GPs answer is 'speak to your GI team' - well apart from the fact that I have tried to and have got no where, I'm not having other symptoms of a flare (I have no diahorrea, the abdo pain is thankfully not as relentless as it in a flare, and although my appetite is limited and nausea is bad, I am managing not to throw everything up - which happens in a flare up) so rather than fob me off, please take me seriously!!! (sorry rant over).
Happyballerina - glad you might have some answers and hope that you manage to get everything under control and your life back on track :)
Hope everyone else is well :)
 
I'm new to the group moving from diagnosed Crohn's to now Undiagnosed. I have a question for the group. What scope and lab results do point to Crohn's are not that bad, thus the "Undiagnosed" reversal. Does anyone here take any Crohn's meds even though they have not officially been diagnosed Crohn's ?
 
Lodgelady - welcome to the group. I am currently undiagnosed, but being treated for IBD nature unknown - basically, my OGD, colonoscopy x2, MRI, CT and ultrasound have all come back as normal or nearly normal - had bloods with some inflammation but 'not as much as we would expect', but had classic symptoms of IBD, which responded well to steroids. I am currently taking a mix of IBD and general gastro drugs including mecaptopurine (was azathioprine but had adverse reaction), sulfasalazine (was pentasa (mesalazine) but changed to manage joint inflammation), amitriptyline (for pain relief), buscopan, esomeprazole, metoclopramide, and ondansetron. Whilst I am currently having crippling fatigue, my GI symptoms (uncontrolled frequent diahorrea, severe pain, severe nausea and vomiting, weight loss, and joint pain) are under control - not perfect, but definitely much better. I'm sorry to hear that you have gone from diagnosed to not, and I hope you get some answers soon! In the mean time, we are here to support you :)
 
LodgeLady, welcome to our club - sorry you had to join us though! Yes, I'm not officially diagnosed and I take IBD meds. I've taken pred in the past, I just came off of Entocort, I've been on Asacol, and I currently take Pentasa. So just the corticosteroids and mesalamine drugs, nothing else (my GI won't put me on anything stronger until/unless I get officially diagnosed). There are several others in the Undiagnosed Club as well who have taken/are taking IBD meds - I recall BozzyLozzy was taking sulfasalazine, and as lsgs mentioned, she's been on LDN and steroids. So yes, it's definitely possible to be undiagnosed but to still take IBD meds. In my case, we ruled out most everything else that it could be, and I respond well to the IBD meds I've tried, but my test results were all inconclusive/normal. My GI decided, rather than keep putting me through endless tests, that he'd go with the assumption that it is IBD and that he'd give me some of the milder treatments for it in an effort to get me into remission. That worked great, I spent 2 years in remission (I fell out of remission last year which is why I was on Entocort recently, I'm currently trying to get back into remission).

Madmouse - you mentioned dizziness. What are your electrolyte levels like, have you had bloodwork done lately? When my sodium level drops too low, I get terrible dizziness and light-headedness. This is gross, but to get my sodium levels up, I drink a teaspoon or two of soy sauce. It's not super pleasant to drink that by itself, but it's full of sodium and it makes me feel better pretty much immediately. So that's worth a try.

Ballerina, I don't know much about thyroid stuff, but when I first got sick, they ran a ton of bloodwork on me including thyroid tests. (My thyroid is apparently totally normal.) My very basic understanding is that thyroid issues can cause IBD-like symptoms sometimes, but I don't really know much more than that. It would be awesome though if your thyroid was the issue the whole time - if they can get that under control, presumably you could go back to living a relatively normal life? I'm not sure if thyroid can affect the joints, my limited understanding is that it can affect the bowels. At any rate, good luck with the treatment and keep us posted on how it's going!

Lewis, good luck with your bloodwork results and your GP. As Star said, GPs can order scopes as well as other tests, so definitely get in touch with your GP rather than wait all that time for the specialist. Maybe your GP could run a bunch of tests while you're waiting for the specialist, and then you'd go to that specialist appointment armed with a bunch of results. I'm glad to hear you're feeling a bit better now. I can completely relate to feeling like death and sort of wishing for death - I think we've all had days like that, and they're incredibly miserable. I hope good days are coming soon. Sending you a big hug!

lsgs, I can't believe they took you off of LDN after all the fighting you did to be on it! Glad to hear you're back on it now and starting to do better again. And yes, you're another one of the awesome health professionals on here!

How's everybody else doing? I'm okay but slightly injured! We went kayaking yesterday, and after paddling we put the kayak on top of the car - the kayak fell off the top of the car before we could strap it on, and it landed right on my arms, so I'm all bruised and a bit painful today. Guts are okay - I just tapered off of Entocort (literally today is my first day off of it, so it's too early to tell how I'll do off of it just yet). I'm really hoping this puts me back into remission. And now that I'm fully off of Entocort, I should get fewer migraines - Entocort, particularly when I was on 6 mg, gave me massive migraines that lasted about 5 days each on average, so that was really awful. So I'm glad that is over with now! I see my GI next month, and I'm really hoping that I'm in remission at that time and can discuss how to keep me in remission long-term. (I had only fallen out of remission last year because they stopped making Asacol, and I couldn't immediately find a new maintenance med that worked for me - I'm on Pentasa now for maintenance, so as long as they keep making Pentasa then I should hopefully be okay).
 
Thank you Cat & Star! Just hearing kind words makes me feel a whole lot better. I spend most days feeling crappy alone because my parents are working. So I don't really get to complain to anybody other than you guys, so I appreciate the support!

Feeling much better today. Although, I've been looking back at photos where I'm happy, look healthy and have my entire life ahead of me. Today is the first day I've really hoped I don't have IBD. Obviously nobody would wish it upon themselves, but I always saw that diagnosis as an answer/closure, but it's not, it's lifelong. But what else could I have? With bleeding, anemia, pain...it seems conclusive. I'm not really religious but I keep asking someone or something in my head to make it something that can be cured...rather than something chronic.

Apologies if there are any spelling mistakes. Auto-correct hates me!
 
Lewis - I am glad you are feeling better, and that you could find some support on here - we have all been there! I completely understand your battle, the desire for answers but also the fear of a chronic condition. I hope you get your answers soon, get medication that works for you and get yourself back on track.

Cat - my GP has done FBC, LFTs, CRP and ESR - all normal (which is good because they have been naughty previously). Spoke to them again today and they are adding ferritin, B12 and TFT - I'm not holding my breath as all previously been normal. I am trying to get them to do cortisol, electrolytes and a general hormone panel, but not getting very far. Hoping that my GI will agree to review be before the end of Aug... It is just frustrating because I keep being told 'you will regain your full health' - which is great, but not helping at the moment! Just wish someone would actually look beyond the obvious (i.e. inflammation, anaemia and thyroid). Sorry to rant, but I am missing work, social life, and well, just life in general as we all do at various points and its nice to be able to let off steam to people who understand. :) oh, and I love soy sauce!!!
 
Lewis, for what it's worth - I've been where you are, I spent the first year of my illness being so, so ill and also just frustrated and exhausted and depressed and at times felt like I might be dying. That was the worst year of my life by far. And I can tell you, even when you're going through all that, there is a light at the end of the tunnel. remission is totally possible, and it's wonderful. I spent 2 years in remission, followed by another year of being in a mild flare (much more tolerable than my first year of being really ill!) and now I'm hopefully on my way back into remission. I look back on old photos too, not just photos of pre-IBD me but also of IBD-hell me. I was so pale and painfully thin a few years ago during the worst of my illness and it shows in the photos. But I'm okay now and I look human again in photos - how long that will last, I don't know. But I've gained my weight back and even put on muscle (I'm well enough to be able to exercise most days), I'm not paper-white pale anymore, I look and feel about as healthy as a person with a chronic illness can get. So I promise, really and truly, even though things seem awful right now - they can get better. For me, the turning point was when my GI put me on Entocort (the first time). That got me into remission, which was incredible - it felt like getting a 2nd chance at life. Hopefully between your GP and your specialist, you can get things figured out and get on some medication that helps and get into remission too. But at any rate, my long rambling point is, you DO still have your whole life ahead of you! It may not be quite the life you envisioned, but I doubt that most people get the life that they envision. It may not be ideal, but it can still be a good, worthwhile life. :)
 
Thanks, I hope so too. I REALLY don't want to go on steroids though. Do you have an option on that front? Could I choose a liquid diet as an alternative treatment? That's if it is IBD.
 
Lewis, I have read on the forum that liquid diets seem to have similar success rates as corticosteroids do as far as achieving remission goes. I've heard of a liquid diet called Modulen and I'm sure there are probably other liquid diets that are nutritionally complete - I'm pretty sure Modulen is by prescription only, so that'd be something to ask your doctor about. Personally, and this is just my opinion, I'd way rather take steroids than go on a liquid diet. For the liquid diet to have a good chance of working, you need to not eat ANY solid foods at all while you're on the liquid diet - and I think Modulen diets tend to last something like 8 weeks? I pretty much go slightly crazy when I'm doing the prep liquid diet thing, I swear every commerical on TV is for delicious food! :p So there is no way I would be able to do a liquid diet. But if it's something you think you could do/should try, have a search of the forum for EN and Modulen, that should give you more info than I can give you.

Personally, my experience with steroids hasn't been too bad. I was only ever on pred for a couple short bursts of it. I actually love pred! The first time I took it, I went from feeling absolutely hideous to feeling fantastic! And it literally kicked in within an hour of taking the first tablet - I had more energy, felt happier, felt less symptoms, suddenly felt like singing along to my car radio at the top of my lungs! And within 24 hours, my symptoms were all gone and I felt amazing. Apparently "euphoria" is a listed side effect of pred, and I got that one (that's apparently why I suddenly felt like bursting into song, ha ha). It also gave me manic energy and I pretty much cleaned my entire house in a day. I wasn't on pred long enough to experience any of the bad side effects. The only one I really experienced was a bit of insomnia, but I felt so good that I didn't particularly care that I was lying awake in bed. :p

Entocort got me into remission once and hopefully it did the trick this time around too (I was on it from Oct 2010 - April 2011, and again from Feb this year until just yesterday). It gives me migraines, although apparently that's a fairly uncommon side effect. Entocort was what helped me regain my weight and feel truly like a human again. Aside from the migraines, I really didn't have any side effects from it. This round of Entocort, I was afraid I'd gain more weight (I was at a healthy weight before starting it), but I only gained like 2 lbs so no big deal at all.

Anyway, that's my experience with steroids. I have no experience at all with liquid diets except during prep day, and like I said I totally hate that one day! :p But I'm sure if you started a new thread or had a search through threads, there would be others who can give you more info on that subject.
 
LewisS said:
Thanks, I hope so too. I REALLY don't want to go on steroids though. Do you have an option on that front? Could I choose a liquid diet as an alternative treatment? That's if it is IBD.
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Steroids are not as bad as you might fear, and they are certainly worthwhile - I have had short and long term experience of them, and whilst they arent perfect, once you have got symptoms under control, and got a steroid sparing drug in your system (if required) then you can come off them and enjoy a lovely remission. I know taking medication isnt ideal, but it certainly beats the chaos and utter hideousness of a flare up. :)
I havent done one of the liquid diets per se, but was on liquid supplements for a while whilst I couldnt tolerate solid food. It was better than no nutritional intake, but wasnt great. However, you have to find the right balance for you. I really hope you get sorted soon :)

Speaking of which, has anyone heard from Roseanna and how she is getting on with pred?
 
Madmouse, I have not heard from Rose, no. She's not on my facebook either so I have no idea. Rose, if you see this - please give us an update as to how you're doing! We're thinking of you and hoping you're doing better!
 
Hi everyone

Colonoscopy and gastroscopy went OK today. The prep was... ick. And I did vomit twice, but felt much better afterwards.

The Gastro specialist doing the procdures seemed really nice- he will be my GI from now on. When I say that he seemed nice - as well as I could judge considering that I was pretty stressed and unwell before the procedure, and on drugs afterwards - so prob not the best judge of character! Though he didn't rush me and did the IV line himself (and was really good at it!)

Soooo...he said afterwards that everything looked fine, but that we will have to wait for the biopsy results to really get more info, and will go from there. He gave me some photos and everything looks nice and pink - so I suppose we have hopefully ruled out some of the possible nasties:)?

Anyway, have mixed feelings at the moment. Really wanted to know right away what was wrong. Happy that there is nothing major structurally / polyps / bogey men etc that he could see. Hopeful that there could be an answer in the biopsies (hopefully the take 2 pills and walk away type of thing) Really wishing that its not celiac. And just plain tired too.
Prep last night was from 7pm to 1.30 am! plus then up at 6.45 am for the second one today.

Also nervous - have to stop taking the doxycycline.
not sure how I am going to cope if the D and V come back with a vengance again. I have a little girl to look after, and an assignment to do:(

Hopefully will know more in a weeks time.
 
gotumtum, it's nice to hear from someone that has had such positive results back. Though it must be frustrating not to know what is causing your symptoms. I hope my bowel is monster free!

When you say you hope it's not celiac, why is that? Over having IBD I mean. My doctor said this too after my blood tests 'you're not celiac, which is good news!'. But I mean...wouldn't it be easier to manage than IBD? Like, just not eating wheat/gluten? Idk haha!

I just hope and pray that I have something that I don't have to be medicated for, or at least not forever. My friends are all living their 20s and then there's me. A wild night for me is sitting on the toilet playing clash of clans on my iPhone. There's been two people recently on here who have had IBD ruled out and I hope I'm next! I probably do though...
 
Sorry to double post, but I need a quick rant. Have a doctors appt at 3:00 and I am in absolute agony. Crippled over and salivating due to nausea. I truly think I'm compacted because I'm only passing very tiny bits at a time OR there's a blockage due to a narrowing of some kind.

I can't go on like this anymore. It's horrid and I do not know how anybody with very severe IBD copes with their pains. They can't even give me pain relief because they don't know what kind of pain they are treating. But I need relief from this...
 
Oh dear, this is my third post in a row. If this is against the rules, please do tell me off!

But here's an update on my doctors appointment. He asked why I hadn't seen a GI yet and he got pretty angry that the referral hadn't been acknowledged as he put it down as urgent. Then we went through my blood test results. CRP is 127 (he said normal is between 0-8!) and I'm still mildly anemic. I asked what he thinks it is and he said he's pretty sure it's IBD. He said he would prescribe me pred (or a bunch of other steroids he listed), but doesn't want to mask the symptoms before I see a GI.

Again, sorry about the triple posting, won't happen again!

Lewis :)
 
Lewis, multiple posts in a row are not against the rules, no worries. :)

I'm glad that it sounds like you'll be prescribed steroids soon! Those blockage-like symptoms you described are very worrying though. Are they any better now? Was your GP concerned about those symptoms? If it gets worse or doesn't get any better, or if you develop fever or projectile vomiting or anything like that, then get to A&E as quick as you can. If you are blocked, it can become life-threatening quickly (the bowel can potentially perforate, you could become septic, etc).

Do you recall the other steroids your GP mentioned? Pred and Entocort are the 2 that are typically used for IBD. The benefits of pred are that it works fast, and it's systemic - meaning that anywhere in the body where there's inflammation, pred will go there and blitz it. Entocort is not systemic, it's got a special coating so it relases only in the terminal ileum and colon. Meaning, if your inflammation is elsewhere such as higher up in the small intestine, Entocort won't do much of anything for you. The upside of Entocort is, since it's not systemic, you tend to get far fewer and milder side effects from it and it's safer to be on longer-term. Pred of course works fast and is strong but can cause more side effects. So pros and cons of each, and I encourage you to read up on both so that you can make an informed decision of which one sounds best for you if you do go the steroid route.
 
Cat-a-Tonic said:
Lewis, multiple posts in a row are not against the rules, no worries. :)

I'm glad that it sounds like you'll be prescribed steroids soon! Those blockage-like symptoms you described are very worrying though. Are they any better now? Was your GP concerned about those symptoms? If it gets worse or doesn't get any better, or if you develop fever or projectile vomiting or anything like that, then get to A&E as quick as you can. If you are blocked, it can become life-threatening quickly (the bowel can potentially perforate, you could become septic, etc).

Do you recall the other steroids your GP mentioned? Pred and Entocort are the 2 that are typically used for IBD. The benefits of pred are that it works fast, and it's systemic - meaning that anywhere in the body where there's inflammation, pred will go there and blitz it. Entocort is not systemic, it's got a special coating so it relases only in the terminal ileum and colon. Meaning, if your inflammation is elsewhere such as higher up in the small intestine, Entocort won't do much of anything for you. The upside of Entocort is, since it's not systemic, you tend to get far fewer and milder side effects from it and it's safer to be on longer-term. Pred of course works fast and is strong but can cause more side effects. So pros and cons of each, and I encourage you to read up on both so that you can make an informed decision of which one sounds best for you if you do go the steroid route.
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I know me too, I'm happy, but really scared to face the reality of it all too! He pretty much told me everything you said - that if I start vomiting, develop a fever etc. that I should get myself to A&E or call 111 (think it's a non-emergency, but they can get you admitted without having to sit around for hours).

He did mention Entocort and pred, but he also mentioned a couple beginning with with A...I think. Definitely going to start doing my research on what options I have. Is the elemental diet or liquid diet as effective in the long-term? I really don't want to put on the weight with pred, even if it is temporary - but then on the flip-side, it will make me feel better.
 
I know of a few IBD medications (not steroids) that start with A - were they Apriso, Asacol, Azathioprine? The first two are mesalamine formulations - mesalamine is the mildest of the IBD meds, and it's typically used more for maintaining remission than achieving remission/getting a flare under control. I take Pentasa which is another formulation of mesalamine, and I used to take Asacol. Very mild meds so very low risk of side effects, but they might not do much for you either. Azathioprine is an immune suppressant (it's also known as Imuran) and I haven't been on that one so I don't know much about it, but it would be one to look into if you're offered it. Again, you'll have to weigh the pros & cons, so have a read up on that medication.

The pred weight gain is usually temporary - once you taper off of it and it gets out of your system, your body should settle at a healthy weight. For me, before I got sick I weighed 136 lbs and I consider that to be my healthy weight. When I got sick, I lost about 20 lbs and dropped down to about 115 and was underweight and borderline scary. Then I went on Entocort and gained about 25ish lbs back, so about 5 lbs more than my healthy weight. Then I had some issues with hemorrhoids and was put on steroid suppositories and gained a few more lbs, so at my very heaviest I was 146 lbs. Once I was off the steroids and the suppositories, my weight settled back at 136. I won't lie, I had lost muscle mass when I was ill and all my weight gain was pretty much ugly fat that settled around my midsection, so I had to work out quite a bit to rebuild my muscle mass and convert some of the fat into muscle. That was the worst part of it for me was the fat gain/muscle loss, but honestly even that wasn't too bad and it was really nice to be healthy enough for exercise! And I still wasn't overweight even at my heaviest. And as I said, I was just on my 2nd round of Entocort for the past 6 months or so - when I weighed myself last week, I was at 137 - so I gained I guess 1 lb from this round of Entocort. :p Not too bad! So really, the weight gain is only a minor inconvenience that should settle once you're off of steroids - feeling better was far worth the fat gain for me. I'd rather be a bit fat and have my life back, than be skinny but horribly ill.
 
Yes with pred the weight does tend to be very temporary, and most of it is usually caused by water retention which will go quite quickly once you stop (I did a 39 day trial which, very unusually, didn't do anything but give me side effects, lol my inflammation was higher after the Pred than before!).

While it's really natural to feel scared and not want to face reality (many of us go through this quite frequently, including me) also wishing you don't have something lifelong, a diagnosis would end the uncertainty and lead hopefully to correct treatment. A better quality of life.

I know myself having a dx isn't a magic fix but I figure there is no worse place than being undiagnosed and unhelped in terms of suffering.

So I would be devastated to be diagnosed with CD which is a horrible nasty disease which can never be cured , can come back at any time and can be degenerative, but surely even that would be better than now. That's what I tell myself anyway!
 
I have an awful time coming off prednisone. On Entocort I am good until I get to 3 mg (1pill). I get severe abdominal pain and D. Is this just a symptom of withdrawal or is the underlying problem the problem? If one gets in remission while on Entocort shouldn't one be able to wean fairly painlessly from it?
 
I look at it this way - my illness is like a monster. The monster is going to be there and attacking me regardless of what name I call it or if it even has a name. Yes, with a name, I would know what weapons would be most effective against the monster. But that doesn't change the nature of what the monster is, you know? Call it IBS, call it IBD, it doesn't really change things much. All I know is that it'll still be there, attacking me, not going away. If it's IBD, so be it, then at least I can fight it more effectively. If you call it IBS, well basically that'll be like throwing pebbles at a dragon when what I really need is a sword (in other words, IBS meds do diddly squat for me!). But really, of course nobody wants IBD, but the reality is that you have something. You have a monster and you have to face it and fight it. If your doctors help you in the fight, if they equip you with good weapons, all the better. But it's going to be there regardless of how you react so you kind of just have to accept that there's a monster and that you need to do whatever you can to fight back.
 
hi all!

not too familiar with this forum, but mind if I pop in? :)

I am 24, female. I've been to what seems like a million, but really about 15 different doctors and GIs with no idea what's wrong with me! I don't have what is common on this site (I think), but almost constant, recurring anal fissures - always in different areas. I've been on Miralax daily for the last 4 years, and still get fissures even though my poops are textbook perfect! I had a flex sig two years ago, which came out clean. New GI (whose office has AWFUL nurses btw, makes me want to cry...) wants to do a colonoscopy, something all the other GIs had wanted to do as well but I've just been too scared.

Well, its finally coming up on this Friday and I am TERRIFIED of the prep! I did a fleet enema for the sig, and was horrible. Cramps made me immobile and sobbing on the floor for about three hours. I had propofol, which I will be having again - and loved that, so no worries about the procedure, just the prep.

But... I'd really like to see (or rule out) why I have anal fissures, they are incredibly painful. I'm also a SEVERE emetophobe, extremely scared of nausea, vomiting, and especially gagging. I have no other Crohns or UC symptoms, but they want to rule it out as a cause for my rectal (fissure) bleeding.

Hello!
 
@Cat - Yeah I definitely think he mentioned Asacol and Azathioprine. He's italian so sometimes I just nod even though I'm not entirely sure what he's talking about...

After some thought I've realised I just have to get better and forget everything else. Once I get the current inflammation down, I'm just going to make a huge lifestyle change and try and keep things that way. I do need to put a little weight on anyways, just hopefully with some muscle!

Again, thanks for the support. Need to educate myself now because I don't have a clue about any of these medications.
 
Hi Bellasaurus, welcome to the club. I believe I saw in a different post of yours that you were given some Zofran/ondansetron for anti-nausea to take during your prep? And I believe you said you were doing Prepopik for prep? That is one of the easiest preps to do - just make sure you drink plenty of clear fluids with it to stay hydrated. I did Prepopik for my last prep - I will be honest, it did make me a bit nauseous (apparently that's a fairly uncommon side effect of Prepopik). But, I took Zofran with it and I did not vomit, Zofran saved the day. I would say, take a Zofran maybe a half hour before you drink the prep, as it usually takes 20-30 mins for Zofran to kick in (at least for me it does). Zofran is good stuff and should prevent you from vomiting, so I know this is easier said than done, but try not to worry too much. My last prep, I tried to just relax as much as possible and that really helped me. I set up a nice relaxing playlist on my ipod and had it playing in my bathroom on a dock. Nice scented candles, my fuzziest socks and my comfiest sweatpants, bubble bath, my favorite cozy blanket, etc. Try to be nice to yourself during prep as that really does make a rough day more tolerable.

I can relate to your emetophobia. I don't quite have a phobia of vomiting, but I basically just totally hate it, loathe it, despise it. :p I am super stubborn about it. Most people, if they feel a certain level of nausea, they'd rather just puke and get it over with and feel better. Not me, no way. I will stubbornly not vomit unless I'm given no other alternative. I've been ill for nearly 5 years now and I can tell you that I've vomited 3 times total in those 5 years - once due to a flare, once due to prep (not Prepopik), and once due to a side effect of medication (hyoscyamine).

Lewis, I think that's the right attitude - get yourself better, heal the inflammation, and then you can focus more on your overall health picture, diet and fitness and all that good stuff. Good luck with your research! I was on Asacol for a few years so I can hopefully answer any questions you have about that one. But like I said, it's one of the mildest IBD drugs and may not get you into remission (it's for maintenance of remission mostly). But if/when you get into remission then it would be a good one to consider for maintenance, as the side effects risk is very low (I had zero side effects from it, I only stopped taking it because production of Asacol was discontinued here in the US).

Lodgelady, yes, if you get into remission then you should be able to taper off of pred/Entocort without symptoms. Getting symptoms on low doses of those meds usually means that you're not in remission and that your body might need to go back on a higher dose for awhile to get into remission. That happened to me the first time I was on Entocort, I had a really rough time tapering from 9 mg to 6 mg so my GI put me back on 9 mg for awhile longer. That did the trick, my body just needed more time for the medicine to take care of the inflammation I guess. I would say call your doctor and let them know what's going on and see if they'd be okay with you going back up to a higher dose for awhile longer.
 
Yeah and healthy is something I'm not right now, so I need to stop seeing this weight loss as a positive. Once I get in remission (if should I say) I really can't wait to start a fitness and clean eating regime and live a more positive lifestyle. I hope I can help people here too because up to now I've just been the nag of this support forum wanting all the answers. But with your answers which I'm really grateful for, I can pass on a lot of information to people joining this forum just like me. So thank you to everyone that has helped!

I'll report back once I know my treatment plan or likely before then when I need somewhere to rant about being in pain!

Lewis :)
 
Cat, thank you for your kind words. I am planning on taking a zofran about 30 minutes, as you said, before I do my prep. I am worried that BEING so worried will make me nauseous regardless! I've been fretting for quite some time. I don't drink much water at all - if I don't try, I hardly even drink a water bottle's worth a day. But starting a month ago, I've been practicing drinking lots more as I know I will have to do with the prep. I know prepopik is a lot less than most preps, but even the 8oz/hr is still a lot for me! I also spent today on a clear liquid diet, although my dr did not tell me to. She did say tomorrow, prep day, was all liquid... but I'm doing an extra day just in case. I am hungry though!

Lewis, sorry to hear you've been in so much pain lately :( I hope you're having a good day today...
 
@Catotonic...I did call my GI today. He thinks it's just withdrawal symptoms as he clearly is leaning towards IBS after treating me for Crohns for a whole year:( but we won't go there right now. Anyway a much better day on 3 mg although it's only been day two. I am so fed up with docs right now I just want to get off all these meds and move to Colorado where I can get some real relief :)
 
Hi Lewis - and everyone else

I am sorry for the delay in replying - I was typing up a nice long reply last night when the power went out! FYI laptop screens do put out enough power to find the torch at the other end of the house!

I can see what you mean Lewis. I am greatful that there is nothing hideous going on that they could see. However that means that treating this could be much trickier.

If it has a name, you can draw from all those 'who have gone before' and have a list of treatment options and an idea of what to expect. In NZ they are quite strict with medications too. If you have not been diagnosed in the correct way, or not at all, they won't fund the medications - or prescribe. And even if you did find someone to prescribe, our health insurance is not geared to cover medications.

I think I realise that deep down celiac would probably be easier on my body in the long run. But because I live in a small town (3000 people) and only 1 small supermarket. Celiac would affect my family more. - And taking medication is more lazy!!!

FYI you can still have celiac and have negative blood tests - it is the biopsy that is the 'gold standard'

I have given up on the hope of not being medicated! - and I am 29:) - I would have been dead a few times over by now - so am very happy we have them! If licking a cat once a day would fix this - I would!!!! Hahahaha

Although being diagnosed with Crohns / IBD would be yuck and life changing- I have been living with this whatever it is for more than a year now. So a name for me is only a tool to help guide the treatment. - and maybe faster access to a bathroom!

There is much more that I wanted to add in here but forgot it!

Hope everyone is having a good day - and have power!!!!
 
After being tested twice by my allergist and GI the specialist points out I'm IGA deficient. What does that mean? All of the Celiac testing I had done was based on normal IGA levels. So.... all testing was a false negative!! Even the biopsy I had done was well after a year of being gluten free. So wouldn't that affect the biopsy... um yeah! My question is didn't my GI READ the lab results I had sent over from my allergist ( who found the deficiency)? Um guess not. In defense of my allergist he tested me for Celiacs before testing for immunodificiencies. So.... the specialist feels it could be Celiac or IBS. Ok, did I say how I hate the medical profession :(
 
Hi Guys,

Been out of the loop a bit lately. Haven't been doing too bad. Appreciate all the support from everyone and hope you're all coping as best you can, diagnosed or undiagnosed. Good days and bad days, right?

So, I was thinking...I'm not viable for the pill cam. Not totally sure where the thickening in my intestine is, but assume it's in the middle where it's hard to get to (probably require double balloon endoscope?) and within the past week had a new symptom and not sure if related or unrelated. Haven't had excruciating abdominal pain since end of May, which is the longest this year I think I've been without an attack. (That attack was what prompted me to get the CT and find out there really is something wrong.)

Anyhow, in the past few weeks or the month, noticed vibrating in my feet. Started in the left heel (like a phone set to vibrate mode and happens every few seconds and only lasts a short time - doesn't hurt). And in the past week or two, noticed a new GI symptom: that sensation that food is still stuck in your throat. Actually, I think it's my esophagus and when it happens, it kinda scratches a bit - like you're getting a tickle in your throat before you get sick - but nothing bad comes of it - just discomfort. It feels like it's in that dip in your neck/throat (can't recall the correct term). No amount of drinking gets rid of it. I assume it disappears in time. But it's happened a few times now. I had my thyroid levels checked about 2 months ago because I thought my thyroid might be acting up, but the levels were normal. Never really did explain that notion that something was wrong in that general area. I know the tests aren't always definitive.

And just for giggles - I went to Google and looked up 'dysphagia' (which I assume this is) and vibrating foot and came across MS. I'm like really? Nah...it's probably just a pinched nerve and my new GI symptom is probably related to whatever is going on in the GI tract. Or is it? Not scared - just curious. Is MS fairly synonymous with CD? Not that I even have a diagnosis of anything right now. I have epilepsy, so I'm not worried about having a seizure - I'm already medicated for that. My blood sugar was draw a couple of months ago and it wasn't high, so not diabetic.

Remind me to stay away from pasta - I don't think that's a good thing to eat with thickening or scarring (assuming here) of intestines. I assume it takes longer to get through narrowing tubes because it's kind of dense to begin with.

After sticking my fingers down my throat tonight to try and clear a perceived blockage in my gut, hubby is wondering "will I only end up being able to eat 3 things and that's it?" Not sure if he meant a day or at a meal, and if he meant three spoons of food. I'd been doing okay. I have no issue with pizza, home made vege burritos, sandwiches and vegetable bakes that may be primarily spud and figured spud was kinda dense too, but mmmm I don't know. I did figure out rice isn't so good any more because it soaks up all the gunk in my system and stuffs me up further - used to be a safe food when I was getting over abdominal pain - perhaps it never really was.

Confused. Frustrated. Next GI appointment July 15th. I'm sure that's just to tell me the next step and I'm already wondering how many different types of scans or scopes it's going to take to figure out what's wrong. Should I be looking at seeing a neurologist instead, or as well? End of semi-rant.
 
gotumtum said:
Hi Lewis - and everyone else

I am sorry for the delay in replying - I was typing up a nice long reply last night when the power went out! FYI laptop screens do put out enough power to find the torch at the other end of the house!

I can see what you mean Lewis. I am greatful that there is nothing hideous going on that they could see. However that means that treating this could be much trickier.

If it has a name, you can draw from all those 'who have gone before' and have a list of treatment options and an idea of what to expect. In NZ they are quite strict with medications too. If you have not been diagnosed in the correct way, or not at all, they won't fund the medications - or prescribe. And even if you did find someone to prescribe, our health insurance is not geared to cover medications.

I think I realise that deep down celiac would probably be easier on my body in the long run. But because I live in a small town (3000 people) and only 1 small supermarket. Celiac would affect my family more. - And taking medication is more lazy!!!

FYI you can still have celiac and have negative blood tests - it is the biopsy that is the 'gold standard'

I have given up on the hope of not being medicated! - and I am 29:) - I would have been dead a few times over by now - so am very happy we have them! If licking a cat once a day would fix this - I would!!!! Hahahaha

Although being diagnosed with Crohns / IBD would be yuck and life changing- I have been living with this whatever it is for more than a year now. So a name for me is only a tool to help guide the treatment. - and maybe faster access to a bathroom!

There is much more that I wanted to add in here but forgot it!

Hope everyone is having a good day - and have power!!!!
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I really hope they find something that can be fixed. Wishing you well. I hear there's wild weather down your way at the moment. Is it just me, or is it getting wilder?

I had experience with dealing with the special authorizations for meds that normally don't get the 'funding' in NZ. It took about 2-3 weeks for the approval to come through. It went via my neurologist. I didn't stick with the meds long-term though, but the authorization saved a butt-load (I guess that was getting my tax-dollars back). This didn't require health insurance for the flat-rate prescription price. Neuro must have written a pretty compelling letter!
 
Eternal_howl.Thankfully it is up north rather than here - they still don't know why the power went out! But yes, it does seem to be getting wilder

It is good to know that it is not impossible to get the good stuff if needed:)

Hey - have you had your B12 and Magnesium checked? There are quite a few vitamins and minerals that affect nerve function. I know that my mg is getting low when I get pins and needles in my tongue and face among other things! - Oh and my feet.

Also - not sure what sort of 'diet' you are on - are you gluten free - may be another option to try. I find that when I eat the gluten I don't choke on food accidentally as often, and that there is not that 'stuck in the throat' feeling. Also when I have been GF for a while I can add some of the other foods back in.- The 'food roulette' seems to come out on my side more often anyway!- Might be worth a try anyway?

If you are in the mood for some googling - Peripherhal neuropathy might be another option - If you can see a neuro it would be good for your peace of mind:) - but I would get the Gi to run some vitamin blood tests:)

Good luck!

Lodge Lady- Sending Hugs your way - The whole one step forward, three steps back is soul destroying - just when you think you have crossed something off 'the list' its back on again! Are they going to re run the celiac blood tests? I understand that they can use a different 'Ig' ??? Maybe someone with a good science background can answer that? - Oh, but going back on the gluten is horrible:( - Do you have the genetic markers or family members with it?

My aunty has celiac, but is non-symptomatic and eats gluten! GRRRRRR
We went around to her house for dinner a month ago and I though, well at least we won't have to go through the dictating what I can't eat business, and she did a lovely fish pie, with full gluten pastry and a gluten crumb topping. A lovely salad with gluten crutons and a lovely loaf of fresh gluten bread. With a cheeseboard and crackers for afters!? I just sat there like a wally and had some salad with the crutons picked out:( I nearly cried when I saw the food.:cry:
 
@gotumtum, yes there is another test using IGG to test for Celiac. Also genetic testing to see if I carry the gene. However I mentioned the genetic marker test to my GI and he was less than impressed about running that test ad he said even if you carry the gene it does not mean one has Celiac . I'm going to mention to my allergist about running the IGG test, but I think you have to go back on a gluten diet so you build the antibodies back up. At this point I know I have felt 100% better being GF ( now almost 2 1/2 years GF) that I just don't think I can change my diet at this point.

I am currently weaning from Entocort. I have felt the best ever ( had the gall bladder out this past February) and on 6 mg Entocort. ( I had a full 7 weeks of 9 mg Entocort before starting the wean ). So I am now on day 3 of 3 mg. if my pain and cramping returns either while weaning or after I'm off I'm to get a pill cam. That will be test number 7 within a year and honestly I need a break from all of these tests and doctors.
 
I don't know why these specialists get grumpy about running blood tests - its not as if they are personally paying for them, and if they were requested more often, we would have more reliable data, and they would be cheaper!

I know what you mean about going back on the gluten. i have just been back on it for 4 weeks and erghhhh. I feel like Cr*P! I have been off it for 4 days and even my skin is starting to look better. I was off it for 6 months and would need a jolly good reason for going back!

I did the biopsies and if they come back negative - I will just say I am intolerant and be done with it! Nasty evil stuff that it is! (sorry rant over)
I had been under the impression for 6 years that I did not have the genetic markers for celiac - but I requested a copy of the results, and it turns out I do - Ugh! - One step forwards and two backwards!

At least once done the genetic test results won't change! ( unless they tell you the wrong results, or they figure out more markers!)

I can understand the need for a break from doctors. They are a very strange breed indeed!
 
The genetic marker test is not affected by changing your diet right? Since I have an appt. with my allergist I might ask him to go ahead and run that test. I've already well surpassed my yearly copays and deductibles between testing, hospitalization for pneumonia and gall bladder surgery :) What is one more blood test, right? :(
 
@Lodgelady - Yup - you should be fine with it - make sure they test both the "alpha and beta subunits" is what I found from my research - some labs cheap out and don't do it properly, and the results can be screwy, but your allergist should be up with the play. The other consideration is - do you have skin problems? Some people can have negative testing, and be gluten free but have dermatitis herpetiformis aparrantly ( even while not on gluten), which leads to a default celiac diagnosis?

When / if you get the results, and get the actual HLA DQ subtyping, you can figure out your probability of having celiac too - some celiac websites have them listed> If you are that way inclined:)

Yeah, blood tests I can cope with:) - If only it was that easy for everything! - Though it was a different story when I was a kid- My first blood test they had to try both arms, and I would not straighten them afterward. My Mum had trouble fitting me and my straight arms plus 2 siblings and Dad into the car. As we left, Dad was driving, and we ran over her handbag which she had put behind the car to help me get in. Ahhh Memories:)

Sadly that building has beed pulled down as was damaged in the Christchurch earthquake (among many others)

Hope you don't need lucky test number 7!
 
gotumtum said:
@Lodgelady - Yup - you should be fine with it - make sure they test both the "alpha and beta subunits" is what I found from my research - some labs cheap out and don't do it properly, and the results can be screwy, but your allergist should be up with the play. The other consideration is - do you have skin problems? Some people can have negative testing, and be gluten free but have dermatitis herpetiformis aparrantly ( even while not on gluten), which leads to a default celiac diagnosis?

When / if you get the results, and get the actual HLA DQ subtyping, you can figure out your probability of having celiac too - some celiac websites have them listed> If you are that way inclined:)

Yeah, blood tests I can cope with:) - If only it was that easy for everything! - Though it was a different story when I was a kid- My first blood test they had to try both arms, and I would not straighten them afterward. My Mum had trouble fitting me and my straight arms plus 2 siblings and Dad into the car. As we left, Dad was driving, and we ran over her handbag which she had put behind the car to help me get in. Ahhh Memories:)

Sadly that building has beed pulled down as was damaged in the Christchurch earthquake (among many others)

Hope you don't need lucky test number 7!
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Are you talking about the building down near Kilmore St? Medlab or whatever it's called?

With regards to previous comments about the Gluten and Celiac, I also have an aunt with Celiac, but she lives a gluten-free life. She makes her own bread. I've shown to have a mild gluten sensitivity, but silly me went out for dinner last night and had pasta. Not good for thickening of intestines - takes a long time to move on. No other real symptoms though. Tried the gluten-free diet for about six months and was strict with it. Symptoms returned so went back to normal diet. Celiac is supposedly more concentrated in NZ because of some of the people that migrated there. Not sure which lineage. I don't remember that much.
 
Yup Medlab - Just another flat gravel section now.

Yeah - I had been on and off the gluten for the last - maybe 5 years - but now off for good.

Its interesting as the South Island has very high numbers of both Celiac and Crohns - there have been some studies based here because there are so many possible applicants! - I had read somewhere that people think that there is a correlation with the lack of Vitamin D?

I think that there are higher levels of them in Scotland too - although Dunedin would have some of those genetic lines, Christchurch probably doesn't to the same extent. Though Scotland would that the Vit D problem too...

Hmmm, interesting

Good luck with the bloodtest:)
 
gotumtum said:
Yup Medlab - Just another flat gravel section now.

Yeah - I had been on and off the gluten for the last - maybe 5 years - but now off for good.

Its interesting as the South Island has very high numbers of both Celiac and Crohns - there have been some studies based here because there are so many possible applicants! - I had read somewhere that people think that there is a correlation with the lack of Vitamin D?

I think that there are higher levels of them in Scotland too - although Dunedin would have some of those genetic lines, Christchurch probably doesn't to the same extent. Though Scotland would that the Vit D problem too...

Hmmm, interesting

Good luck with the bloodtest:)
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Well that might explain it. My specialist says Celiac is also prevalent in Mediterranean heritages ( I am half full blood Italian, so there ya go.) also I have deficient Vitamin D, so who knew? Makes sense now.

But if it's like all my other testing, the results will come back in-conclusive....:(
 
I am *four* hours away and getting a little nervous! I'm having a staring contest with the prep box right now...

Hoping everyone is doing well :)
 
Hi everybody, I need to vent today. I'm flaring. Was really, really hoping that I was headed into remission. I tapered off of Entocort at my GI's advice - my last day of Entocort was Sunday. I was feeling well and was hopeful for remission. But on Tuesday, I noticed I had less energy but I thought it was just an "off" kind of day or maybe I didn't sleep well the night before or whatever. But then on Wednesday, I went downhill pretty fast. I ended up going home sick from work as the Zofran couldn't contain my nausea and the abdo pains and bathroom trips were starting, plus I was wickedly fatigued. Wednesday night, I had to get up in the night to go - the urgency and pain woke me up. So it's definitely a flare. Although hopefully it's not too bad just yet - I haven't had any night sweats nor chills yet. Haven't passed any blood either. Still, getting up in the night was disconcerting, it hasn't been this bad in quite awhile. I don't think it's withdrawals, either - it sure feels like a flare.

So I called in sick to work today too, and I put myself back on Entocort (I have a couple weeks' worth of pills left) and I emailed my GI let him know that I'm flaring and to ask for another refill. I see him in August, so now I'm hoping I can go back on Entocort through at least my appointment. Although I realized, my GI is on vacation the entire month of July. His nurse usually answers his emails when he's out, and in the past she's been able to send through refills for me (it was my GI's nurse who got me some Pentasa refills when I ran out a few weeks ago). So I'm really, really hoping she can refill my Entocort as well because I only barely have enough to get me through to when my GI returns, so if I have to wait for him to get back then it'll be iffy. (I just counted my remaining Entocort capsules, and I've got enough to get me to August 1st - I'm not sure when exactly he gets back, I was just told he's on vacation all of July.)

So this sucks and I've had a rough couple days! I can't tell if I'm feeling slightly better now because I took an Entocort this morning, or maybe it's just because I haven't even tried eating anything and spent the entire morning sleeping (I just got out of bed at 11:30 AM). I'm frustrated because now I have to take Entocort to get out of this flare and try to trudge my way back towards remission and who knows how long that will take, and maybe I'll even have to go back up to a higher dose which will give me the wicked migraines again, and just ugh. I'm just having a pity-party kind of a day. Thanks everyone for listening.
 
Cat, sorry to hear you're having a rough few days. It must be so daunting to be climbing an uphill battle, only to have a flare and feel like you have to start all over again. Is there anyone else that can prescribe Entocort for you, a primary physician perhaps?

I don't know too much about the medical side, but hopefully you're taking it easy now. Get some blankets, candles, and easily digestible meals and camp out in bed for a little bit to give yourself time to at least mentally recover from the ordeal.
 
Cat-a-Tonic said:
Hi everybody, I need to vent today. I'm flaring. Was really, really hoping that I was headed into remission. I tapered off of Entocort at my GI's advice - my last day of Entocort was Sunday. I was feeling well and was hopeful for remission. But on Tuesday, I noticed I had less energy but I thought it was just an "off" kind of day or maybe I didn't sleep well the night before or whatever. But then on Wednesday, I went downhill pretty fast. I ended up going home sick from work as the Zofran couldn't contain my nausea and the abdo pains and bathroom trips were starting, plus I was wickedly fatigued. Wednesday night, I had to get up in the night to go - the urgency and pain woke me up. So it's definitely a flare. Although hopefully it's not too bad just yet - I haven't had any night sweats nor chills yet. Haven't passed any blood either. Still, getting up in the night was disconcerting, it hasn't been this bad in quite awhile. I don't think it's withdrawals, either - it sure feels like a flare.

So I called in sick to work today too, and I put myself back on Entocort (I have a couple weeks' worth of pills left) and I emailed my GI let him know that I'm flaring and to ask for another refill. I see him in August, so now I'm hoping I can go back on Entocort through at least my appointment. Although I realized, my GI is on vacation the entire month of July. His nurse usually answers his emails when he's out, and in the past she's been able to send through refills for me (it was my GI's nurse who got me some Pentasa refills when I ran out a few weeks ago). So I'm really, really hoping she can refill my Entocort as well because I only barely have enough to get me through to when my GI returns, so if I have to wait for him to get back then it'll be iffy. (I just counted my remaining Entocort capsules, and I've got enough to get me to August 1st - I'm not sure when exactly he gets back, I was just told he's on vacation all of July.)

So this sucks and I've had a rough couple days! I can't tell if I'm feeling slightly better now because I took an Entocort this morning, or maybe it's just because I haven't even tried eating anything and spent the entire morning sleeping (I just got out of bed at 11:30 AM). I'm frustrated because now I have to take Entocort to get out of this flare and try to trudge my way back towards remission and who knows how long that will take, and maybe I'll even have to go back up to a higher dose which will give me the wicked migraines again, and just ugh. I'm just having a pity-party kind of a day. Thanks everyone for listening.
Click to expand...

I would like to know how you got your Doc to prescribe Pentasa without a Crohns diagnosis? I just asked for it while weaning from this Entocort and he said no cause it's only for Crohns and since I don't have a positive diagnosis I can't go back on it :(

I am hoping your situation does not happen to me I am weaning from the lowest dose. I am fearing this same exact scenario!! Hugs for you Cat !! I am so sorry your going through this !
 
I've not been feeling great either, fatigue is getting bad again and my stomach seems distended.... the top part so not anything lady related. I weighed myself and i've not gone up at all... which is weird i've stayed at the same weight since I got out of Hospital, would have expected it to be creeping up since I can't follow my weight loss regime having to take the iron pills 3 times a day (previously I was fasting 16 hours, eating for 8 and only having a snack in the evening twice a week).

Also I speculated that I was able to lose weight due to the Naproxen working well on my pain and lowering my high cortisol.... but i've been off that over a month now.

I certainly haven't been eating very healthily either!

My follow up appointment is now overdue so I am going to try and figure out who to call Monday. Not feeling good.
 
Lodgelady - I know what you mean about all tests coming back inconclusive - sometimes I wonder why I bother!

Bellasarus - Hugs - all over soon...

Cat-a-tonic - if your GP can't/wont prescribe any more meds for you - are there are other GI's in the same practice / rooms as your normal GI - He must have some sort or cover in place?

There is nothing worse that possibly running out of medication :( - It makes me really stressed! - At least you are onto it now, rather than waiting or not realising!!!

Stargirl - Hugs and hope that you feel better soon

Leanne1994 - What do you mean by gastric juice?

I am on day 5 of no antibiotics.. usually all he** breaks loose between days 7-10 though I have been on it a little longer this time, so maybe i will get 2 weeks.
Hoping that I can get biopsy results and start treatment for whatever this is before it all comes back. Heading back home on Sunday at this stage. Still getting pains and urgency at times - but no actual D so that is nice. My husband is really busy at work at the mo - working 18 hour days so I will have to take care of my little girl when I get home, no matter what. Not sure How I will cope while having horiffic D and stuck on toilet...
Oh and starting assignment too...

Hope someone else is having a good day - maybe LewisS is?
 
Checking in! I haven't tried any other preps as this is my first colonoscopy, but this prep has been a BREEZE! I still have a second dose to take at 2am, but I could've went about my day 100% normally. It didn't taste great, but I feel just fine, and no urgent needs to run to the bathroom. I had to use the bathroom a few times of course, but I had plenty of time to get there and they were no longer than a normal BM. In fact, I invited some friends over for dinner and games two hours after drinking the prep and they were none the wiser :)
 
Oops, spoke too soon. Second half of the dosage at 2am made me pretty sick, so I didn't have the entire (small) dosage, probably about only half of it. I think I'm okay though, I was going mostly clear with some flecks/sediment at the bottom of the toilet. This morning it was mostly yellow with small flecks. I'm off to the hospital now - wish me luck! Can't wait to be knocked out, as I feel absolutely lousy.
 

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