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I just have to share with you guys...
I had my first rotation today as an urgent care intern (physician shadowing) and WOW was it awesome! I learned so much just in my first day of clinical experience - how to throw sutures, how to tie them (one way, anyway), I did initial evaluations/examinations, presented cases, got my first set of scrubs, and practiced/learned/was quizzed over a BUNCH of other stuff. IT WAS AMAZING.
Also, since I happen to be shadowing my PCP, whom I love (and love even more now after working with her and getting to know her better!), she turned to me at one point during the day and said, "I looked over your medical records and I think you have mesenteric adenitis (ie. inflamed abdominal/mesenteric lymph nodes) due to your EBV and CMV antibodies." Mesenteric lymphadenitis requires a trigger, like an past infection with EBV or CMV, which is why she thought of that; it's treated with anti-inflammatories - NSAIDs. Obviously with the bowel problems and the possible Crohn's Dx (which she, however, doesn't think it is), there is reason to avoid NSAIDs. However, if it is mes. adenitis, it's a simple fix and one I should try. There is a new (I believe) drug which is essentially an enteric-coated naproxen sodium so she told me about that and said she'd give me some samples to try. Coincidentally enough, the drug rep for that drug happened to stop by today and drop off more coupons/samples. In the end we were so caught up with doing other stuff that I forgot to take some with me, but I'll bring it up tomorrow when I go if I can find a good time in which to do so.

I was so preoccupied with what I was doing which, combined with having taken a stimulant in the morning (prescribed, obviously), resulted in me not eating ALL DAY. I actually felt great! Lol. No stomach pain, was hardly hungry enough to bother. Plus, I wanted to avoid having to run to the bathroom or be stuck in there with painful cramps and blood in between patients/sutures/learning opportunities. So, I had "breakfast" (lol) when I got home at 10! And now, two hours later, I'm on my second painful and bloody bathroom trip within the last half hour. Eating hurts! But I gotta do it sometime :p
 
gotumtum said:
Eternal Howl - I get this occasionally around the start of a period. It is a wonderful gift, and the only time my house gets cleaned properly! - Although I pay for it the following few days.
Hopefully it will stay for you:)

Do you have any more info on the b12 throat spray? Or have I just missed that post?!
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Sorry, I missed this one.

I will preface that any information on natural therapies that I use or try in the future are not me touting any particular brand as superior over another. Because I simply do not know this and don't have a wallet big enough to be experimenting.

The B12 throat spray I'm using is Methylcobalamin (the type that doesn't require conversion in your body - there's another one they told me about and it's the methyl one you want). The one I'm using appears to be branded Pure Vegan. I'm not vegan, although semi-vege. After my menses and my energy took a shot to the floor (during those few days), my energy levels are still improved and I'm not feeling as wiped out. I honestly have to start looking at crediting the B12 throat spray with boosting my energy.

The dose of B12 I'm taking is anywhere between 1-3000 mg a day. So it's about 2 to six squirts to the throat and usually some in the morning and some at night. It doesn't taste nasty like I thought it would.

I'm using a throat spray for better absorption -straight into the blood stream - versus capsule, which has to be digested, and obviously that's a problem for some of us. I would have gone and got shots from the nurse, but can't afford to mess up work schedules as with all the appointments I have, I don't want them thinking I'm unreliable. I will probably get another B12 test in a few weeks to see if my levels have risen. It's nice feeling a little more human again.
 
happyballerina said:
I just have to share with you guys...
I had my first rotation today as an urgent care intern (physician shadowing) and WOW was it awesome! I learned so much just in my first day of clinical experience - how to throw sutures, how to tie them (one way, anyway), I did initial evaluations/examinations, presented cases, got my first set of scrubs, and practiced/learned/was quizzed over a BUNCH of other stuff. IT WAS AMAZING.
Also, since I happen to be shadowing my PCP, whom I love (and love even more now after working with her and getting to know her better!), she turned to me at one point during the day and said, "I looked over your medical records and I think you have mesenteric adenitis (ie. inflamed abdominal/mesenteric lymph nodes) due to your EBV and CMV antibodies." Mesenteric lymphadenitis requires a trigger, like an past infection with EBV or CMV, which is why she thought of that; it's treated with anti-inflammatories - NSAIDs. Obviously with the bowel problems and the possible Crohn's Dx (which she, however, doesn't think it is), there is reason to avoid NSAIDs. However, if it is mes. adenitis, it's a simple fix and one I should try. There is a new (I believe) drug which is essentially an enteric-coated naproxen sodium so she told me about that and said she'd give me some samples to try. Coincidentally enough, the drug rep for that drug happened to stop by today and drop off more coupons/samples. In the end we were so caught up with doing other stuff that I forgot to take some with me, but I'll bring it up tomorrow when I go if I can find a good time in which to do so.

I was so preoccupied with what I was doing which, combined with having taken a stimulant in the morning (prescribed, obviously), resulted in me not eating ALL DAY. I actually felt great! Lol. No stomach pain, was hardly hungry enough to bother. Plus, I wanted to avoid having to run to the bathroom or be stuck in there with painful cramps and blood in between patients/sutures/learning opportunities. So, I had "breakfast" (lol) when I got home at 10! And now, two hours later, I'm on my second painful and bloody bathroom trip within the last half hour. Eating hurts! But I gotta do it sometime :p
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That would be fantastic if that's what the issue is and it's a relatively easy fix. It sounds like your internship has started out well. I'm glad you had a great day. Sometimes I found fasting during the day while working was better and then eating at night. Perhaps you can find a good meal replacement that will give you energy during the day and all your nutrients that will be more of a liquid and won't interfere with your bowel? That's pretty much what I used to do a few years ago. I'd have a couple of very small snacks to stave off hunger (I worked in an office, but I walked to work and back each day, so I needed some energy).
 
LodgeLady said:
.

So is the Pill cam hard to get insurance to approve? I just can't figure out why he's dragging his feet on this?
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I'm with United Healthcare and getting insurance coverage for the pill cam wasn't the issue. Instead I had to wait because I had to get approved to take the agile capsule (which is a dummy pill to see if someone is able to swallow the pill cam).
 
happyballerina said:
I just have to share with you guys...

I had my first rotation today as an urgent care intern (physician shadowing) and WOW was it awesome! I learned so much just in my first day of clinical experience - how to throw sutures, how to tie them (one way, anyway), I did initial evaluations/examinations, presented cases, got my first set of scrubs, and practiced/learned/was quizzed over a BUNCH of other stuff. IT WAS AMAZING.

Also, since I happen to be shadowing my PCP, whom I love (and love even more now after working with her and getting to know her better!), she turned to me at one point during the day and said, "I looked over your medical records and I think you have mesenteric adenitis (ie. inflamed abdominal/mesenteric lymph nodes) due to your EBV and CMV antibodies." Mesenteric lymphadenitis requires a trigger, like an past infection with EBV or CMV, which is why she thought of that; it's treated with anti-inflammatories - NSAIDs. Obviously with the bowel problems and the possible Crohn's Dx (which she, however, doesn't think it is), there is reason to avoid NSAIDs. However, if it is mes. adenitis, it's a simple fix and one I should try. There is a new (I believe) drug which is essentially an enteric-coated naproxen sodium so she told me about that and said she'd give me some samples to try. Coincidentally enough, the drug rep for that drug happened to stop by today and drop off more coupons/samples. In the end we were so caught up with doing other stuff that I forgot to take some with me, but I'll bring it up tomorrow when I go if I can find a good time in which to do so.



I was so preoccupied with what I was doing which, combined with having taken a stimulant in the morning (prescribed, obviously), resulted in me not eating ALL DAY. I actually felt great! Lol. No stomach pain, was hardly hungry enough to bother. Plus, I wanted to avoid having to run to the bathroom or be stuck in there with painful cramps and blood in between patients/sutures/learning opportunities. So, I had "breakfast" (lol) when I got home at 10! And now, two hours later, I'm on my second painful and bloody bathroom trip within the last half hour. Eating hurts! But I gotta do it sometime :p
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Wonderful news!! Just getting some management path is fantastic!
 
I have my follow up appointment tomorrow (6 weeks overdue) following my emergency hospital stay and blood transfusions.

I don't know whether I want the last two sets of bloods to be good or bad.

And I don't know how much good they will be since I took them in accordance with an expectation I would be followed up in 4 weeks, and not 10. So instead of being 7 days or less old, they are 6 weeks old!

So pretty much going to insist on another set being done tomorrow and another follow up appointment, booked before I leave either way.

I usually am ok with going to medical appointments alone but terrified about being alone tomorrow, not told anyone I am going because I can't handle my own stress about it let alone family on top. If my mother was not on her long working week I would have asked her to go with me (she works M-F 9-5:30 plus every third Saturday 9-12. On top of her weekly hours she gets no time off for working the Sat). Oh and if I get blood done again totally paranoid about the phone ringing after I am home to summon me back! Because that's what started this whole thing off lol.

:ybatty:
 
Good luck tomorrow StarrGirl! Don't think too much about what will and won't happen because whatever will happen will happen and you have no control over it - don't worry :) I hope you do end up having a good appointment!

I've been pretty bad off yesterday and today with my abdominal pain and diarrhea/bleeding. Yesterday I was on rounds again and the entire day my abd. was hurting, with some periods better and some periods much worse. At some point through the day the other intern asked if I was ok and my dr was right there (well, I'm right next to her almost all the time) so she turned to look at me and had me sit down for a bit as she didn't want me passing out. I wasn't going to pass out, but maybe I was pale and that's why she thought. Anyway I was more than happy to sit down because the pain was nearing unbearable at that point which I assume is why it was noticeable in the first place :p I explained to my dr that I wasn't going to faint, just that it was my stomach but that I'm fine, and then I went on with my day. A couple more times during the day I had some extra bad pain and right toward the end of the day it happened again; that time it was while I was talking with my dr about a patient and it was building up and then it just hit me so obviously she could read my face and as it was kind of quiet (we only had a patient laying in a bay getting an IV but no patients to see at that time) we sat there talking about it. She was just saying how she still thinks it's mesenteric adenitis and that she hopes it's not Crohn's, and then I told her about the mouth ulcers and about having found out that my grandfather had IBD (I hadn't mentioned those previously because I forgot and didn't know, respectively). When I said that, her eyes widened and she said, "Oh...it's Crohn's. It's Crohn's," while nodding her head. Great! Pfft. :lol: I told her what my GI's plan is (to do the scope and the pill cam and if he doesn't find anything then to treat for IBS and if that doesn't work to treat as IBD and if I respond to the meds then the Dx will be Crohn's) and she agreed 100% with it, especially since at that point she seemed to think it was so obviously Crohn's she could have just Dx'd me right there on the spot.

That said, we decided to try the naproxen/omeprazole combo to treat as mesenteric adenitis because it won't harm me but if it works then we can conclude that it is mesenteric adenitis after all. She said I would notice within two days, so by tomorrow I'll be able to see if it helped or not and to let her know. If it doesn't help - it's almost certainly Crohn's (her line of thought as well as mine). So far I haven't felt better from it and just within the last hour I had another period of debilitating pain, 3-4 BMs, and bleeding. We'll see tomorrow, but so far there is no change.

I must say that I chose the right profession...lmao. Oh, the benefits of shadowing your own physician for 12 hours a day.

Tomorrow I'm on rotation again and I'm excited to go back to the clinic already (today I was off). I hope the pain will be manageable tomorrow but, in all honesty, I'll be in the best company I could ask for should I actually get really bad.

Hope the rest of you all are feeling alright. Anybody have any scope/Dx updates? I have my colonoscopy next Friday.
 
Oh, the benefits of shadowing your own physician for 12 hours a day.
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Sorry you've had a rough day, but yeah - you summed it up well.

I see the GI specialist on Tuesday and no doubt I get told what I already know and nothing special about what I don't. No high hopes. I could be wrong, but expecting a waste of time and a call for more barium x-rays, which I will decline in favor of an MRE or something.
 
Eternal, I think an MRE is a good next step. Have you had one before (or a CTE)? Was that you who couldn't do the pill cam because the agile got stuck? I don't understand what your GI attributed it getting stuck to if not stricturing, and if he she's attributing it to stricturing then why it's not enough for him to give a Dx (at least tentatively). Good luck though - fingers crossed it won't be the waste of time you expect it to be!
 
I have no clue what a CTE is (without consulting the web lol). The agile got stuck as I have thickening in my intestines (visible on a CT with contrast), so I wasn't viable for the pill cam. The GI has suggested possible stricture, but nothing has been confirmed. They were giving me sulfasalazine for colitis after I couldn't afford the Pentasa and Prednisone, but I've stopped them both and gone the natural route for now. I just don't see the point in taking drugs that have their own host of side-effects when whatever I'm dealing with is pretty serious. I understand the sentiment behind the Prednisoe, but I think the Turmeric is probably a lot less harmful. The tentative diagnosis is Crohn's, but it hasn't been confirmed. The only positive is they probably ruled Celiac (which my aunt and cousin has).
 
:Hello group,
I haven't posted in a while because I am so our with disbelief that we live in a "electronic" age with remarkable medical advances yet we are without a diagnosis! Not to mention our pain but the money we spend just to be told what we don't have!
I have been down a lot with the bm's and vomiting, because I am analyzing every morsel which enters my mouth! It's crazy! I use to question how people can have eating disorders but now I have the utmost respect for them! Not that I judged them because I am not that person!
Anyway, went to see the endocrinologist on the 1st who immediately admitted me because my pressure, pulse and heart rate was through the roof. I stayed 3 days and again was told what I don't have! No food allergies or celiac disease but no clue what is wrong! My thyroid test were a little abnormal but nothing to be alarmed about, this was $200 more out of pocket and 4 days off my paycheck! Ugh! But 2 days before I was so dizzy all I could do was lay down. This new symptom won't go away! I also chose no pain meds but I am thinking that was a big mistake. For the last 3_4 days the pain has taken my breath away or woke me up at night!
So off to spend $270 more dollars on Thursday, for a pill patience test, hopefully followed by the pillcam test!

Sorry to vent but I am getting really tired and I was at the hospital where they are treating the Ebola patients! I was thinking this is one of the best hospitals in the USA but you can't treat me!

Thanks for listening! I do believe we will one day become the undiagnosed/finally diagnosed group!:lol:
 
Hey you're at Emory? Haha I'm right near by. You should come to our clinic, my physician is great and she'll take you without an appointment. She's not a GI specialist but if you end up being left without a diagnosis and you need a second opinion/consult I would definitely recommend her.
 
Geez, what a connected world we live in.
Tamera, you're right about the technology. So much information and so much advances, yet we're still waiting for answers.
 
Starting my low-residue diet today before my prep on Sunday...I did eat a custard slice earlier, it was just there and I had to. The moviprep box does say it isn't necessary to change diet until prep day, but I will stick to it from now on! XD

Any tips on getting things moving? I have pretty much nothing going on lately and when I do go, I'm not emptying. I drink a ton of water so it's not that I lack fluids...hmm!
 
Oh, I miss custard slices. I miss the old foods. I call them old, because I moved from NZ to the US and the foods in NZ are probably closer to English. The US...I can't find custard anywhere. I'll have to learn to make it myself!

As for getting things moving, what can you eat? If you have a slow colon (mine, I discovered through the scope is redundant - longer than normal) then if you can eat fruit, get some dried apricots - they generally work on the most stubborn of colons - so does licorice. If you can't eat anything of substance, then I'd suggest contacting the nurse (if you're concerned you won't empty out enough on prep day). They may suggest you start early to make sure you're cleaned out.
 
They're SO good. I'm sure you could make far better homemade ones. I got mine from a supermarket and it was a little battered, didn't affect the taste though.

Yeah anything fibrous is banned. Some people take natural senna a few days before, might give that a try. I am kinda loving this diet though because it's all pretty unhealthy, like packed lunch food I used to take to primary school.

Edit: Actually just realised that I could probably have a cup of black tea and get the same results. I cut tea out of my diet because it causes what I can only describe as a laxative effect due to the caffeine.
 
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Hi everyone, sorry I've not been around, still trying to adjust to the los of my father and father-in-law.

Was recently back in casualty cos I couldn't get my pain under control, the outcome of this is that I'm too be admitted for observation to try and finally find out what's wrong with me. Trying not to put too much hope into this but would love to finally get a diagnosis.
 
It sounds like you've suffered overwhelming loss, Lizbeth. Sorry to read you lost your father and your father-in-law.

I hope you find out what is causing your issues soon, as it will be one ray of sunshine to at least know.
 
Last night I had terrible pain that kept me from going to sleep. I was actually considering having my mom take me to the ER, but I decided to let it pass and eventually I guess it must have because I did manage to fall asleep. I told my doctor today and told her that I woke up with another mouth sore and that I feel one developing on my tongue and she said I need some mesalsmine because it's definitely crohns. I asked her what if the colonoscopy comes back clear but she said she still thinks he will Rx it for me. Whatever ends up happening, it's so great to have her tell me that she has no doubt what it is and that, if the GI doesn't want to start me on meds right away, she can speak with him and come up with a plan we all like (she's the one who referred to me to him in the first place). And besides, I have GOT to get on something to make me feel better ASAP because I'm starting back at school in a little over a week. I didn't even think about how I would deal with it until my dr asked me the other day how I manage to go to school like this. Ummm...!
 
Well, I had no idea yesterday how things would go and i'm kind of numb today.

Saw GI's registrar who was really nice. As soon as I walked in he made a joke about just missing me on the ward which put me at my ease.

The upshot is I am still significantly anaemic (although not dangerous so any more) with a haemoglobin of 9.2 up from 6. Ideal range is 12-15.

So things will be looked into further.

I will have an ultrasound at some point and a colonoscopy appointment within 6 weeks. Annoyingly it couldn't be booked there and then- I should get a call to do so Monday.

He was fine with me opting out of Klean Prep and ticked Picolax on the sheet. Asked for TI biopsies.

Will follow up in 6 months which is slightly annoying, But things are happening again albiet slowly, which is better than nothing happening, I see Rheumy in November so could ask for results then and I assume if anything nasty is found I will be contacted.

Basically looking for IBD again. This has happened before but never with so much evidence. I'm really pleased to be getting a new GI look at my case away from my local Hospital, with whom I have an awful history with GI's.

I'm stopping the iron tablets now and can go back when I have finished the colonoscopy. I was slightly concerned about being without extra iron but GI said the transfusion will act as a top up for another month or so and I can resume right away after test. But to keep an eye on how I feel. After such a bad case of anaemia I sure know the warning signs!

Forgot to ask what next if all normal, and about B12 shots, and about other blood tests results but right now I couldn't care less.

I thought I would feel happier, i've never been closer I feel to a diagnosis which I desperately want and need. Really numb and I did cry on the train home I will admit.

Haven't shared it with anyone family wise yet just need to sort how I feel first.

Am I mad if I say there is something of a familiar comfort in being undiagnosed? That as much as you hate it it becomes your normal and as soon as things get serious it's scary as hell? And you suddenly don't know what you want the outcome to be??

For those that don't know i've been riding the undiagnosed roller coaster for 8 years now. 5/6 of those significantly unwell.
 
Sometimes ignorance is bliss and sometimes it gives us some authority over things. It's good your HBG is up.

It's a shame about the wait times. I'm familiar with waiting lists (from back in New Zealand), but I suspect they're longer in the UK, as you have way more people.

It wouldn't hurt to ask about your B12. If you've been tested, just ask if the levels are normal or abnormal. I sourced some B12 throat spray because I couldn't get to the appointments for the injections and I think it's starting to help me. But if you do require B12 supplements, I've learned that you want the methylcobalamin, not the cyanocobalamin. One is more expensive, but one is significantly better as it doesn't require conversion in your system the way the other does.
 
Um so you know how people say "oh yeah, my uncles sisters best friends cousin has crohns."

Well today I heard (when I told our closest friends that I was still sick and that the Drs were checking for crohns)

'Oh yeah, our dog has crohns...well colitis' We just fed it chicken and rice for a month, and now we feed it special sensitive stomach dog food. She is fine now, we just can't feed her chicken skin."

Um, yeah. I have nothing against dogs. But yeah, thanks.

So what I am really saying is thank goodness for this forum.

And we need better publicity.

And maybe we should investigate this sensitive stomach dogfood?
 
I know my B12 levels were low while I was in Hospital, and following discharge injections were recommended by my Rheumy (whose tests picked up the anaemia), but I decided to do further bloods without them and talk to the GI about how it was on those and if I needed injections.... but I forgot both d'oh!

I'm glad too my haemoglobin is up, but I started at 6 then had two blood transfusions which I was told would bring it up a point each. I had also been on iron tablets for 8 days at last blood draw. So not sure how good/bad that is.

When I was discharged they weren't happy that my B12 and Ferretin were low after my transfusions, hence the follow up. Because the initial theory was a medication reaction but everything since has pointed in another direction. Can't blame then, had symptoms so long with normal test results my first thought wasn't the undiagnosed problem finally showing up either :rof:

GI was going to see me again 4 months then decided on 6 for some reason... but trust me a colonoscopy within 6 weeks is quite amazing for the NHS! I think my priority is somewhere between emergency and normal. In fact it might even be 6 weeks for emergency i'm not sure.

I think i'll feel better when it's booked, should happen Monday, if not I will ring the unit direct Tues am. Then I can start telling people.
 
Um, so I have an awkward question...Do not read if eating!

I always though when people mentioned mucus, they meant snot kind of white stuff, I thought well, thank goodness. Something I don't have to deal with. But then I read another thread on here, and they mentioned yellow liquid kind of stuff - like when you graze your knee and it weeps. - Sometimes it is a leakage issue. - Um is this mucus too? Or just nasty leakage. And do you thnik it would indicate crohns, or could it be part of IBS?

Sorry for the graphic grossness - rather embarrassed, so posted on this thread, with people I feel I know a bit better.
 
gotumtum said:
Um, so I have an awkward question...Do not read if eating!

I always though when people mentioned mucus, they meant snot kind of white stuff, I thought well, thank goodness. Something I don't have to deal with. But then I read another thread on here, and they mentioned yellow liquid kind of stuff - like when you graze your knee and it weeps. - Sometimes it is a leakage issue. - Um is this mucus too? Or just nasty leakage. And do you thnik it would indicate crohns, or could it be part of IBS?

Sorry for the graphic grossness - rather embarrassed, so posted on this thread, with people I feel I know a bit better.
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Mine is yellow with that 'snotty' texture, haha ew. I'd say your leakage is just very watery D perhaps, if it doesn't have any texture. I...leak too and it's as you describe yours. Sometimes when I'm struggling to go, I get the liquid what is maybe leaking over the constipated BM - some people call that constipated diarrhea.

Mucus is very gooey and often comes with blood.

--------------

It's bowel prep day for me today! Yay? I've tried to get things moving with senna so the MoviPrep doesn't have to do much work and I followed a low-residue diet for 3 days as recommended. I start the prep at 7PM, so it's going to be a lovely night in for me.

Even though I was able to eat earlier, I still feel really weak and hungry, it's almost placebo hunger. Like now I know I can't eat, it's all I want to do lol. Strangely there's something quite motivating about following a strict diet and preparing for something - it's the most organised I've been in a while.
 
Gotumtum and Lewis: I know what you're talking about, but never stopped to look what color it was. I just wipe and hope it stops. Mine is typically occurring in a similar fashion to Lewis' as it's usually from constipation. But, and I can't verify this 'but'. - don't think there's blood. I never look. It just feels nasty. Yeah it's mucus. Sometimes I get that thick white mucus after a movement. I always figure it's just the body working a little harder to keep things moving.

Lewis, I know what you mean about the no food thing. When you can't, you want to eat. It's partly psychological and because you're feeling weak, it's now physical. You'll be looking forward to the procedure being done with so you can eat. Let's hope you get some answers from this procedure. I really hope you do. The waiting and not knowing sucks.
 
Hey guys,

Word of caution from me. Trust your body.

I had raised amylase etc and chose to use my private health insurance to see a new gastro who was recommended to me.

I told my NHS consultant the exact same thing I told this new guy. The NHS consultant sent a letter to my GP saying I was a doctor shopping hypochondriac. Never ran a blood test or anything.

Long story short - MRCP, CT, bloods, ultrasound of neck, chest x-ray later and I now know I have a 4cm (yes, cm!) lymph node in my liver at my 'porta hepatis' which is where all the blood vessels etc enter your liver.

I go for a PET scan in the next few weeks to check if it's malignant/cancerous or not. The blood test for lymphoma was raised.

If it's not malignant I have to be scanned regularly to check for growth. If it is malignant I'll be referred onto a surgeon to have it biopsied/removed but the surgery is quite risky where it is.

So there you go.

Hope you're all good. Trust your instincts people.
 
lsgs said:
Hey guys,

Word of caution from me. Trust your body.

I had raised amylase etc and chose to use my private health insurance to see a new gastro who was recommended to me.

I told my NHS consultant the exact same thing I told this new guy. The NHS consultant sent a letter to my GP saying I was a doctor shopping hypochondriac. Never ran a blood test or anything.

Long story short - MRCP, CT, bloods, ultrasound of neck, chest x-ray later and I now know I have a 4cm (yes, cm!) lymph node in my liver at my 'porta hepatis' which is where all the blood vessels etc enter your liver.

I go for a PET scan in the next few weeks to check if it's malignant/cancerous or not. The blood test for lymphoma was raised.

If it's not malignant I have to be scanned regularly to check for growth. If it is malignant I'll be referred onto a surgeon to have it biopsied/removed but the surgery is quite risky where it is.

So there you go.

Hope you're all good. Trust your instincts people.
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I agree with your sentiments about trusting your instincts. I had ovarian cancer at 27 and feel like I got off scot-free (no chemo or radiation), but because of that diagnosis, anything I am concerned about gets taken seriously, no matter how benign it may seem. Having a diagnosis of that before makes one a bit more careful, as the scenario: "it will never happen to me", already has and has served as a warning to me. I just don't talk about it much because with or without a diagnosis of Crohn's, Colitis, or other IBD, most people here should already be aware of a slightly increased risk of the horrible "C". But the reality I also know is that anyone can develop it, so one should be no more alarmed than the average person. Just be mindful of it and as someone else on the forums said "Be your own advocate". If something feels wrong, or is wrong, you know you better than anyone else.
 
I agree Isgs. Insisting on seeing another Dr and refusing to be fobbed off with no help saved my life two months ago. That incident is leading to further tests which may mean my undiagnosed condition is finally showing itself. Not only could I have died without seeing another Dr there is no telling how long that problem has been there to be found. My previous Drs had given up and like you wouldn't even do bloods. When one does boom! emergency situation!

:ybatty:
 
:( Hungry, so hungry. Can't stop thinking about the huge pizza I'm going to order tomorrow. Really just want to go to bed, but not sure when this prep...stops working?

I hold my hands up and say this is as dreadful as you all say. It makes me want to cry thinking that there's another jug of the stuff coming my way tomorrow morning...
 
I'm so sorry Lewis it's awful isn't it, got to do it again myself in a few weeks!

Once the time between toilet trips starts to get longer, get your pj's on and lie in bed. Even if you need to get up a couple times more and can't sleep yet, at least try and relax/ rest for now.

I think you'd be fine to have pizza tomorrow, just don't make it the first thing you eat. Have something light to line your stomach before hand.
 
Yuck. I'm having a scope on Friday so I have a prep day coming my way Thursday. The one thing keeping me optimistic is that I'm getting general anesthesia - propofol, which is excellent as I'm going straight to the clinic for rounds after the procedure! What type of anesthesia will you be getting Lewis?
 
I picked up a book last night in Hastings (US new and used book/music store) and it's titled "The Angry Gut". So far, it's interesting and is about Crohn's and Ulcerative Colitis. It has large chapters on both as well as a section in the front for anatomy of the gut. It's quite interesting. It's been out a few years now, but if you want to understand your condition (even if you're not sure what your condition is), this might be worth a look, if you can locate a copy. I know there is a forum specifically for media, but I think this is worth noting in this forum because some of us are in unknown territory. There's a preview of about 70 odd pages here: http://books.google.com/books?id=3jM5cmVp0JUC&printsec=frontcover#v=onepage&q&f=false if anyone is interested.
 
happyballerina said:
Yuck. I'm having a scope on Friday so I have a prep day coming my way Thursday. The one thing keeping me optimistic is that I'm getting general anesthesia - propofol, which is excellent as I'm going straight to the clinic for rounds after the procedure! What type of anesthesia will you be getting Lewis?
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You have to work right after your scope? Is there no mercy?
 
Yeah, I won't have the pizza right after! I'll probably go to the hospital cantine for a light lunch.

Struggled so much to get the second litre down today, because I knew how bad it tasted. Even the thought of it now makes me shudder. Took the first dose at 7 PM last night and these second at 6 AM this morning.

Scope is at 3:15, still having what I can only describe as cloudy green BMs - not sure if that's the Gatorade I chased the first dose with. Scared to death about the procedure, my hemmorhoids are flaring up and I have skin tags which I find embarassing...I know he's probably seen worse. :(

No anesthesia for me, just light sedation so I will be aware of everything. Wish I was getting general anesthesia...
 
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It may still make you sleepy, and it will certainly relax you and take away alot of the anxiety. You'll also have pain relief.

I had a horrific upper scope with just throat numbing spray, then one with light sedation. The latter was so much better and i'm not that scared of any scope now I know how good the sedation makes you feel! Before the second I was terrified of having another upper and now it doesn't bother me so much.

Instead of panicking and wishing to tear the scope out/ hit the staff as I did the first time I just laid there the second time and thought occasionally "this is horrible".

Really hope the procedure is not too rough (certainly the prep is usually the hardest part) and more importantly it gets you some answers.
 
Don't worry. Honestly the sedation really helps. I noticed it was much better for my last scope. Usually they gives a small dose and then give you more if it is really sore. If you can,try and relax during the procedure. I try taking deep breaths when it is going around a corner. But it is easier said than done.
 
Man - I was completely out for my scopes ( though they said light sedation) though I do think I am very sensitive to medication - or maybe I was reeeaaaaalllly tired?!
 
LewisS said:
Yeah, I won't have the pizza right after! I'll probably go to the hospital cantine for a light lunch.

Struggled so much to get the second litre down today, because I knew how bad it tasted. Even the thought of it now makes me shudder. Took the first dose at 7 PM last night and these second at 6 AM this morning.

Scope is at 3:15, still having what I can only describe as cloudy green BMs - not sure if that's the Gatorade I chased the first dose with. Scared to death about the procedure, my hemmorhoids are flaring up and I have skin tags which I find embarassing...I know he's probably seen worse. :(

No anesthesia for me, just light sedation so I will be aware of everything. Wish I was getting general anesthesia...
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The green is probably because stuff is racing through your system and not having a chance to 'ferment' if it were.
 
Thank you for all the support, it's really helping with the nerves. I'm worrying about everything. Mainly if I'm cleaned out enough, especially since I'm now dressed and have stopped having BMs. Did yours just suddenly stop and then that was it? I suppose once the MoviPrep has gone, what else is there to empty?

I'm glad to hear the sedation helps with the anxiety...shame I can't have a dose of it now! The waiting around kills me. I'll make sure to be back with any information I get today.

Imagine there was nothing...IBD free and still had these horrible symptoms. I'd be a bit pissed.
 
Hey Lewis - Just brace yourself for the chance that they won't find something - I was in that boat, but am waiting for a pill cam - I suppose it kind of depends on what kind of personality you are as to how you cope - but I am so over basing all my hopes on something and try and reserve a bit for the longhaul part of the journey.

Best wishes for your procedure - I don't really want to say I hope they find something if you know what I mean - Maybe I should say I hope you find some answers!:)
 
Eternal - no, I WANTED to work after! I didn't want to miss a day at the clinic! Lol. I asked the physician to make sure it was ok and when she heard I was getting propofol she was totally ok with it as it has such a short half life. I just told her I might be a bit late but she was ok with that. I've already had the procedure done once without any bad reactions, and assuming they don't find anything horrible that they need to admit me for right after, there really is no recovery time. I like being at the clinic, definitely more than not! Plus, I know that if I do end up feeling terrible I can always go home or just rest there for a little while (it is a clinic, after all) :p

Lewis, I agree with what everyone else has been saying. The first time, three years ago, I also had twilight anesthesia instead of general (twilight seems to be the more common route for colonoscopies). I don't remember anything and as far as I'm aware, I was asleep the whole time (and if not, then it sure seemed like it). I also second gotumtum's advice - there is a chance they won't find anything. They didn't find anything my first scope. Even though my symptoms are 1000x worse this time round, I'm still convinced they won't find anything. It doesn't mean it isn't anywhere to be found and certainly doesn't mean they should stop looking (in your small intestine, for example).

Good luck! No need to be nervous :hug:
 
Make sure they agree to do biopsies even tho everything may look ok! I had to do a whole other colonoscopy with biopsies because of it and the pathology confirmed severely active chronic enteritis even tho everything looked ok during the procedure! Good luck!
 
Good luck Lewis!! And good luck Ballerina on your upcoming scope! Good luck Star as well in a few weeks!

It sounds like we get better sedation here in the US than you guys do in the UK. I had the "twilight sedation" for all 4 of my scopes (2 upper and 2 lower), and I felt knocked out each time. I did briefly have a vague moment of wakefulness at my last scope, but I only woke up just enough that I felt a bit uncomfortable and then I immediately zonked back out again. I didn't even open my eyes, just became briefly aware that something was in my butt. :p Other than that, I have no recollection of any of my scopes. The sedation they give here (versed and fentanyl, and sometimes they give benadryl with it) is fantastic!

And yes, I completely agree with what chuckmya said - everyone who is having scopes, make sure they take LOTS of biopsies! As you may already know, sometimes things can look fine visually but the biopsies reveal a very differerent picture. Things like microscopic colitis can ONLY be found on biopsy. And both microscopic colitis and Crohn's have skip patterns, meaning the inflammation is patchy. So the more biopsies they take, the better the odds of finding something!
 
We have a diagnosis *drum roll* ......it's crohns. I've been admitted for 5 days to get intravenous steroids and hopefully that will make me feel a bit better. The worst news is that I have to have a colonoscopy soon after to see if the inflammation goes down.

As for the colonoscopy, it wasn't bad at all! Got to see my lovely ulcerated bowel in all it's glory and see bits getting snipped off for biopsy. The prep really is the worst part!

Thank you to everyone in the undiagnosed support group, you've been a huge support to me when I've had my bad days and answered all of my many questions. Even though I have a diagnosis, I'll probably still come to you guys with my rants. I hope you all get a diagnosis as soon as I did.

Lewis :)
 
Hi Lewis

I know this is both good and bad news. But at least you can get on the road to recovery now. You are right the prep is the worst part but the sedation the best :lol:

I have the damned thing for 30 years but pop into this thread to try and support where I can. I was one of the lucky ones, I was diagnosed within six months.

Enjoy the steroids! I hope they work really quickly. :ghug:
 
Lewis, i'm so sorry you got diagnosed with Crohn's, but at least you know now what it is. And can hopefully get successful treatment and some of your life back. It's a shame you're stuck with Hospital food after doing a prep but when I was in recently it wasn't too bad. I'm sure when you get out that Pizza will be wonderful! A second colonoscopy sucks, it must have been bad inflammation for them to want to go in again rather than rely on blood tests/how you feel. You poor thing!

I didn't get a call today to book mine I am pissed. Should have been able to do it there and then Friday but still nothing. Will ring the unit direct tomorrow morning, if no joy I have a number for the Gastro department. Should be able to connect to a secretary.

As the complaints service has totally uninspired me around the appointment delay issue so far don't know if i'll bother complaining about this.
 
Thank you! Yeah it sucks that I have it, but it's better for knowing. Had my first lot of steroids and then get some more tonight.

They want a stool sample in some huge cardboard bucket, but I haven't eaten until now so they might have to wait a while. Ugh my stools are ugly as hell, poor nurse that needs to pick it up!

Oh and I had McDonald's after, but after the colonoscopy I wasn't even that hungry! So I probably wouldn't have had that pizza either way. :p
 
Once I was asked to do a stool sample and I did it and left it in the bedroom. 5 days later there was a strange smell and there was my sample festering away!
 
Congrats and condolences on the diagnosis, Lewis. As the others have said, at least now you can move forward with treatment and feel better, and hopefully get into remission too! Are the IV steroids working yet, do you feel any better/different? I remember when I first tried pred, I noticed a difference within an hour and felt tons better after the first 24 hours. Hopefully your IV steroids kick in quickly too! Keep us posted on how things go, what long-term treatments you end up trying, what the 2nd colonoscopy shows, etc. I started the Undiagnosed Club as you know, and I'll never kick anyone out even if they get diagnosed, so definitely don't be a stranger in here! You're one of us even if you've technically "graduated" from our club.

On a slightly lighter note, you are seriously making me hungry for pizza. *Drool!* I think I know what I'm having for dinner tonight. I shouldn't have pizza (I'm lactose intolerant, plus the tomato sauce usually triggers my acid reflux) but it sounds seriously delicious after all this talk of pizza.

Daisy, eek! I've never forgotten a stool sample, thank goodness - that sounds horifying! I'm glad it didn't tip over or spill! :p

I guess I should give a little update about me. I see my GI in one week. I'm afraid that he'll want to take me off of Entocort - and specifically, I'm afraid that I'll flare up again if he does. I'm bracing myself for a rough appointment. So not enthusiastic about it.
 
Oh god, I am on so many meds I am not making sense. I was in hospital and left,it in the bathroom on a small ward. I blame the nurse lol.

I cannot understand Cat why if the medication is helping they want to take you off it. If you had a proper diagnosis then they could put you on more specific drugs. I do know people that spent over twenty years trying to get a diagnosis. I don't understand it. I am lucky that I never went through what those of you on this forum
 
@Cat - can't say I feel better as of yet, but hope I do soon! My gut is feeling a little tender from the prodding and biopsies that were taken. Had two doses today, tomorrow I'll get four. I'll definitely keep you all updated, this group is the only section of the forum that I ever visit and post in!

I managed to give in the stool sample because the nurse wouldn't stop asking for it. It was purely blood and mucous and she looked at it as if it was some kind of alien substance. Not liking my night shift nurse! Diabolical bedside manner. I don't think she understands that I've barely eaten for the past 24+ hours and I've just had a pretty invasive procedure - my bowel isn't exactly in the best shape to be creating designer turds at the moment!
 
Lewis,

I'm rapt you've got an answer. Not rapt what the answer is, but it's a step in the direction of management. I hope you get some respite soon and hit remission. Just remember, even if the nurse is a grumpy twit, we're all fighting our own battles, including her. As for the designer turds LOL.
 
I like that - Designer Turds! I suppose that is what we are all aiming for!!! Haha

I am happy that you have some answers Lewis - Sad about the whole chronic illness part, but am glad that you have some closure. And a bit jealous too!

Hope that you start to feel better soon - hope you get some decent sleep in hospital too - they can be tricky places to sleep!

Would you be able to get a pizza delivered to hospital when you feel better as a celebration?
 
I'm with Daisy on this one. Cat, if the meds are helping and you're happy enough to keep on them, ask for good reasons why they would take you off that and put you on something else you don't know will work. They might have really good reasons for considering a change. But ultimately, it's your body and you do NOT have to take something, just because it was prescribed. Speaking of which, I'm probably going to get chewed tomorrow when I see the GI for a follow-up. I barely took my Sulfasalazine or the Prednisone. I went for herbal /natural stuff instead as I was feeling so rotten and wasn't sure if it was post-scope, or the meds. The Prednisone was upsetting my sleep. I'm epileptic. Part of my medication isn't just meds to keep it in check. It's also a decent sleep. My job and my family relies on me remaining seizure-free, as I have been as long as I stay on my drug. (See, I'm not against drugs, I'm just one of those people that tends to go "all or nothing" -it works or it doesn't.)
 
Gotumtum,

I miss Hell Pizza. Specifically, the cranberry chicken one. I have to make it myself at home. Pizzas here are all the same old, same old. I don't eat real chicken though - we get a chicken substitute since our daughter is vegetarian until she can make up her mind. Hell are in Canada, but don't think they'll be making the move to zip code 666 any time soon. I'm in the Bible Belt and I recall what it was like when they moved out of Welly into the rest of NZ, which is fairly secular by comparison to here. But it's just a gimmick.
 
Eternal-Howl - I wold send you a pizza if I could! - We have it occasionally when we are at Mums, but they always seem to muck up my order:(

Ha ha - No- I don't think it will be moving near you. Maybe they could do a Heaven version?
 
Hahaha I must have been in such a bad mood when I wrote my last post. She isn't very talkative at all and I'm a shy person, so sometimes I need that friendly greeting to make me feel like I can speak to somebody.

Any idea what the injection in my belly could have been yesterday? I had it once with my first dose of steroids, then didn't get it again.

Oh and I slept pretty badly haha, it's only expected I suppose. Lovely headache!
 
I think they try and limit the sleep you get so you are keen to go home!

Would injection have been pain relief? or Antihistamine? Is your chart floating about to check- or is it all on computer now?
 
It's on the outside of the door, I'll have a peak later! They don't put them at the end of your bed anymore. :/

They're already waiting to come in and wake me up after coming in at 2:30 last night to check my BP...is it really necessary for them to do observations during the night. I was asleep until that haha.
 
LewisS said:
It's on the outside of the door, I'll have a peak later! They don't put them at the end of your bed anymore. :/

They're already waiting to come in and wake me up after coming in at 2:30 last night to check my BP...is it really necessary for them to do observations during the night. I was asleep until that haha.
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Hi Lewis, the injection in the stomach is for blood clots, as you are in bed a lot and many people are not mobile they give them to everyone (although you are within your rights to decline, not that they make it seem that way. But if you do decline they will either note it in your chart or make you sign a form). Also, I found out in my last hospital stay you can get them in the back of your arm instead of the stomach, which is what I do now as I HATE getting it in my stomach.

I was in the same place as you in mid-May this year. I was in a lot of pain (different to the normal constant pain) so I was sent by my GP to A&E. I was diagnosed with Crohn's in A&E from my colonoscopy results, biopsy results and my MRI which I'd had previously but was still waiting to get a letter from my consultant! I was admitted because of how much weight I'd lost and how long I'd been suffering symptoms for. They put me on the IV steroids and started me on Mesalamine (Pentasa) before I left hospital (which is pretty pointless for most Crohn's patients, so not sure why they decided on that) and shortly after leaving hospital I was started on Azathioprine (off-brand Imuran).

I was just back in again at the end of July/early August because I got an intestinal blockage in my small intestines where my inflammation had come back again. I am now back on steroids (I had just finished tapering 2 weeks prior to my blockage) and have also decided to try EEN (exclusive enteral nutrition). If my Azathioprine doesn't kick in when I'm off of the steroids, we are looking at possibly moving on to infliximab (Remicade).
 
Ah, thanks gemling, I was wondering! :)

SO they're sending me home today after an MRI with pred and eternal nuitrition drinks. The consultant said there's no point staying in because I can do exactly the same thing at home, which is true, I'm not crippled in pain by no means, just a bit uneasy. Not gonna lie, looking forward to my own bed. Last night was awful! The night staff were also a bit grumpy.

At least now I have a diagnosis and I will leave with treatment. He said pred won't effect the outcome of the disease, but will make me feel better in myself. I think he'll also be prescribing another form of medication that will actively treat the crohns too. They seem to be turfing everyone out today and all of us in similar conditions.

Will update on the Meds! :)
 
Glad you get to go home Lewis! And I loved the designer turds :rof: Funniest thing I have read in ages. :tongue:

I managed to book my colonoscopy today for the 30th August, they work 7 days a week! Not overly keen on a morning appointment but at least I won't have to sit around all day. Also ultrasound appointment is booked for a month's time.

I think the GI is definitely thinking Crohns. He said when I saw him he didn't want to start medication at this point. And hinted at CD but didn't commit himself. But on my blood tests to do before next appointment is a TPMT which as I understand it is an indicator test for/ pre-cursor to some immuno-suppressants. So perhaps he is expecting to find CD.

Not sure if I want to get my hopes up after all this time but I certainly feel test results wise never been so close to a diagnosis. and never had such strong indicators from Drs either. :confused2:
 
I aim to please! I was in such a mood at the time haha.

I'd have preferred a morning appointment for the reason you said. Not just that, but you get to do the prep all at once. Facing that poison in a morning is horrid! Hope you get a diagnosis!

Edit:Oh oh, he's also put me on vitamin D and calcium - is this to do with the sides of pred? So it's iron, vit D, b12, pred and eternal nutrition - becoming a right pill head! I may ask about iron taken as a liquid rather than pills. My dad takes feraglobin which has iron and B12 in one.
 
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LewisS said:
I aim to please! I was in such a mood at the time haha.

I'd have preferred a morning appointment for the reason you said. Not just that, but you get to do the prep all at once. Facing that poison in a morning is horrid! Hope you get a diagnosis!

Edit:Oh oh, he's also put me on vitamin D and calcium - is this to do with the sides of pred? So it's iron, vit D, b12, pred and eternal nutrition - becoming a right pill head! I may ask about iron taken as a liquid rather than pills. My dad takes feraglobin which has iron and B12 in one.
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Yes, you will get used to taking a lot of pills, unfortunately. Prednisilone can rob you of calcium, so they have you take a calcium supplement to stop that from happening. Also my dietician told me that Crohn's sufferers need to have more calcium in their diet than someone without it because we have problems absorbing things. I am taking AdCal D3, a chewable calcium tablet right now as I'm back on the Pred. I'm also taking a multivitamin with minerals and iron twice a day as well as what are supposed to be my maintenance medications. I suspect they will start you on Azathioprine, Lewis.

Before I was back on Pred again I started trying to have Ovaltine once a day and Ready Brek for breakfast in the morning as these both contain a lot of calcium.
 
Hope it doesn't affect my teeth, just got those fixed lol.

I have to take 8 pred a day and 4 of the drinks. He said to his students that in my case he is using a top down approach by using the strongest of medications first to immediately attack the disease. The approach he is using on me is to get rid of the inflammation, the bottom up is to maintain the level of inflammation? I can't exactly remember.

Low residue diet for me too, which I don't mind since it's all nice and unhealthy!
 
There seems to be a lot going on Lewis - You seem to be taking it well:)

I could not remember all that - I would have to write it all down!!!

The things we do in persuit of designer turds...Hehe
 
Just taken my 8 pred and elemental 028. The nurse joked about me soon being fat again - not impressed. If I get anywhere near how much I used to weigh, I'd stop treatment immediately! A stone or 2, fine.

Yeah, I'm just going with the flow and hoping I feel well soon. I can't wait to taper off the pred and find a maintenance treatment that works for me. I will treasure my first designer turd and show it to the wor...no maybe not.
 
:) Maybe you could start the next trend - selfies are out and 'turdies'? are in... maybe not.....
We could host the annual 'turdie' awards over a dinner...again, maybe not...

Man, whatever this is it is causing a sick sense of humor!
 
Hahaha! Well back when I was at primary school pupils in my class found a website that they thought was hilarious called 'Rate My Poo' - it still exists and it is basically a site for turdies. We could go to town on those normal bowled bleeps!

Oh lord, steroids are sending me crazy already. Or this is me starting to feel like myself...I actually feel good in a strange way.

Just met my IBD nurse which is lovely! Gave me a huge folder full of information. She was impressed with all the knowledge I've learned from you guys! I think she thought I was clueless. :p
 
Lewis, glad to hear you get to go home! What dose of pred are they starting you out at? As for the weight gain thing, for me when I'm on steroids I tend not to gain more than I need to. The first time I was on Entocort, I did gain about 25 lbs, but I was quite underweight and needed to gain about that much to get back to a healthy weight. This round of Entocort, I have gained like 1 lb because I was already at a healthy weight to begin with. So if you're not severely underweight then you shouldn't gain too much. Your body should just sort of stabilize itself at a healthy weight.

Speaking of Entocort, for those who were questioning why my GI would take me off of it - Entocort is a steroid like pred, so you can't be on it long-term. I know I will need to come off of it soon, I just don't want to come off of it too soon and flare up again (I already tried coming off of it a little while ago and flared up, which is why I'm a bit terrified to try coming off of it again). I guess I'm just hoping my GI gives me a bit more time with it! He did say that for some patients, he uses 3 mg (the lowest dose) Entocort as a maintenance med. I might ask him about that. I don't really want to stay on it indefinitely, but I absolutely don't want to flare either. I guess I have a week to figure out exactly what I do want!
 
40mg of pred. Actually feeling that heaps of energy that people describe. I need to stop being paranoid about the weight gain and think about the benefits such as getting better. I look like a skeleton, but physiologically when you lose weight, you like it at first. But I've realised that it's too much now.
 
Oh yeah, I love that pred energy. :) I cleaned my entire house in a day and took like 8 boxes of junk to be donated when I was on pred. I also got the "euphoria" side effect the first time around so I felt absolutely amazing, like I wanted to burst into song & dance. :p Just make sure you take your pred first thing in the morning, so that some of the energy will have worn off by nighttime. You may still have a hard time falling asleep, but as you taper down in dose it'll get easier. And yes, weight gain isn't necessarily a bad thing! You aren't going to get fat, you're going to get up to a healthy weight.
 
Yup that's how I feel! With added crazy. The weight loss with definitely be welcomed, I guess I mean if I end up looking like whale, which I'm sure I won't.

:( just had a cringe moment with a trainee doctor. She was american and at medical school here and I got so nervous I was unable to speak so I had to fake a cramp! Then she asked my weight and I STUPIDLY asked her if she knew stones. Which most Americans don't, BUT she studies, lives and works here! God I'm an idiot.

And I've been saying eternal instead of elemental...Ha.
 
Lewis, signatures only show on your first post on a page. :) They programmed it that way so that people with big/distracting signatures wouldn't have that show up in every single post, just one per page. So when we flip over to a new page, do a test post and see if it shows up then - it should.

Oh, and I'm American, and I know that a stone is 14 lbs! I know that from watching British TV shows. :p I think I learned that from watching Little Britain, specifically the "fat fighters" sketches.
 
OH! That's alright then nvm. Yeah that would be annoying.

And yeah it was a little cringe. I have uber anixety and I was unable to breathe nearly! They were two really stunning American student doctors (female, and I'm not even straight) and their aura just made me nervous.

I literally just roared out loud in anger about something so silly, could that be the steroids?! hahaha

Oh and instead of pizza, I've demanded some Ben and Jerry's Phish Food. xD

I know I'm going to have to mod my diet a bit...but not today...
 
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StarGirrrrl said:
I think the GI is definitely thinking Crohns. He said when I saw him he didn't want to start medication at this point. And hinted at CD but didn't commit himself. But on my blood tests to do before next appointment is a TPMT which as I understand it is an indicator test for/ pre-cursor to some immuno-suppressants. So perhaps he is expecting to find CD.
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The TPMT is to check for the likelihood of you being able to tolerate either azathioprine/mercaptopurine as people with no TPMT or low levels should avoid them as there is a link with serious side effects and the presence of that enzyme. Although, its not a definite - my TPMT is normal and I had a reaction to azathioprine, but am taking mercaptopurine with no probs. :)
 
Lewis - I am happy for you to finally have some answers and are on a road to treatment - I know such a diagnosis isnt what you would have wished for, but at least you know you have answers and can move forward :)
I really hope the pred works, that they find you a maintenance therapy you can get on with and everything improves :)
 
Lewis, I would wager that roaring in anger is definitely related to the steroids, yes! :p I would also suspect that the steroids might be making your anxiety worse? Things should get better though as your body gets more used to them and especially once you start to taper. So seriously, don't worry too much about being awkward to the American doctors. I bet they'd be flattered to know that they got you so flustered in spite of you not being straight! And oh yum, phish food. It was someone's birthday at work today so they brought in ice cream cake - it was like ice cream, chocolate, and brownie chunks. YUM! I could not resist, and it was so good. So whereas your posts from yesterday made me crave pizza, your post today about phish food isn't making me crave ice cream because I already had some. :p Ha ha.
 
GI follow up:

I do not have an H. Pylori infection. Great news as I was trying to figure out how I was going to kill it without having to kill myself on antibiotics.
I do not have Celiac Disease. Also great news. (It's in my family.) I love bread.
I do not have colitis or microscopic colitis. Great news, but I had no symptoms so this was something I already knew.

They're now recommending me for a CTE and the specialist no longer thinks I have Crohn's as the steroid I took briefly, should have worked in a couple of days (I took it for about 4-5 days). Now, he suspects it's IBS - which is doctor speak for "We know there's a problem, but don't have an answer". The other option is a stricture or something. I have thickening in my intestine. I get sick from time to time. I have gastritis, but the cause is NOT H. Pylori. So, I'm literally back to square one.

He wasn't upset that I'd come off all meds like I thought he would be and admitted steroid is not good long term anyway and that what I am taking won't be hurting me, but didn't seem convinced it was helping. He was surprised I was on B12, but it was I that had asked for a B12 test at my GP or primary care.

He wants me to start some Levsin. I'm not sure I want to take it. I need more information.

I'm a bit deflated to be honest. I haven't learned anything in 8 years, except the American Health System is so very expensive and that I have to work on my self-management until my bowel becomes completely blocked and they have to do surgery. Until then, no answers, or so it seems. I expect nothing new on the CT E.
 
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Steroids don't work for everyone, so ruling out IBD on that basis seems a bit premature. I have strictures which cause pain and sickness but they are the result of inflammation. IBS wouldn't cause strictures. I have crohns but also IBS. I went on a high fibre diet for the IBS which triggered obstructions so back on low fibre. Haven't take Levsin but do take buscopan which helps with my bowel motility. Perhaps it is worth trying Levsin?
 
Well I just found out how much it was going to cost for the Levsin, so the pills are out. I spoke to my husband and said I'm not even sure if it's worth doing the CT E because it's going to be more cost and I'm really not sure how much more it's going to show than a regular CT with contrast. Maybe someone here knows if it's effective or not, or if it's just pouring money down a black hole.

As far as motility goes, I have a redundant colon and they said it was kind of loopy (even after an explanation, I never really knew what loopy meant - other than crazy lol). But the redundant colon explains years of constipation. I don't want to get bunged up and that's what the drugs apparently can do.
 
I take one of my comments back. I have learned something: start relying more on the natural and less on the mainstream because if it doesn't have the answers, the natural may be beneficial and less invasive on the pocket and on the body.
 
Okay, me again.

I was just reading something on the difference between IBS and IBD. Allegedly, IBS does not involve inflammation. According to CCFA "IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn't result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD." - Well, I have the destructive inflammation, or have had because my small bowel (Note, not large bowel) is restricted enough I cannot swallow a pill cam. Doc is wrong. It can't be IBS.
 
I think there's something in the marijuana thing...knowing me I'd end up getting arrested though.

Edit: I'm pretty sure I posted this in the wrong tab and in the wrong section of the forum. :ybatty:
 
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Yeah - I will be arguing if I am told I have IBS - for me the whole waking with D and V is the iffy bit - some sites specifically say this is not IBS. - Even the info from the specialist ( he gave me both IBS and IBD info) - and I don't think vomiting should be part of IBS either. - Pill cam is a month away and I want to try and get my massive assignment done first in case all hell breaks loose. I also plan to come off the doxycycline so that anything it is negating shows. I kind of wish I had for the colonoscopy too but oh well.

My assignment is a bit daunting - 20 drawings, 10 sample boards, pages of theory explanations and a presentation...may have left it a bit late...!

Oh and I got my magnesium level back 0.9 mmol/l (range 0.6-1.2) though on here somewhere it says anything less that 0.9 is deficient, and somewhere else it says that you can't trust the bloodtest as the body sacrifices the mg from everywhere else to keep the blood level OK. So I don't know.

I have had a migraine for a week, been as moody as hell and my periphal neuropathy has been doing the conga all over. I got desperate and bought some expensive magnesium chloride bath salts and had a bath today so hopefully will sleep OK tonight. Feeling a bit better, and thinking about getting some more. - Wish I could have the epsom salts ( Mg sulfide?) as I can't have the sulfur but would be much cheaper!

Does anyone else have magnesium problems? - Aparantly it is mostly absorbed in the terminal ileum, but mine was supposed to be fine at colonoscopy. We shall see what pill cam suggests.

I have had one of those days today - baby monitor not working, husbands phone not working. Managed to fix monitor and have sent phone away to be fixed, but no assignment today. Think I will have an early night and see what tomorrow brings.

How are you doing lewis?
 
Gotumtum, what symptoms do you get from magnesium deficiency? Just out of curiosity. Then I can say if I do. It sucks that for some it's so difficult to get diagnosed. I feel lucky in a way to have had obvious symptoms in the areas the colonoscopy can reach. They're still not sure how much of the bowel it's affecting though until I have an MRI on the small bowel. Hope your day improves too!

Feel pretty good, woke up this morning feeling really bright and full of energy - I think that's mainly because I didn't sleep too well in the hospital, so last night I was spark out. Read through my discharge notes and I remember someone here (possibly you or cat) saying that I'd probably be prescribed Imuran and it does say I have had blood tests to see if I'd be suitable for it. Scared about the potential side of hair loss...I already take meds to prevent male pattern baldness. Other than those worries though, I feel good, thanks for asking. :)

Also, I have a question, you know me! I overheard the consultant telling one of his students that I have 'colonic disease' and that I am more at risk of ______ due to my age and that combined. This is the problem, I didn't hear or understand what he said. Does he mean anal or rectal cancer maybe? :confused2:
 
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Hi Lewis, It was me that said they'd probably start you on Imuran (Azathioprine), that's what they started me on. Unfortunately after an appointment with my IBD Pharmacist, the Azathioprine has reached therapeutic levels in my blood, but doesn't seem to be able to do the job of stopping my inflammation coming back after I taper off steroids. So I have just had a blood test for TB and a few other things so that we can look at starting biologics. I have the choice of Infliximab (Remicade, an IV infusion every 6-8 weeks) or Adalimumab (Humira, weekly injections you can do yourself at home). Both work similarly to each other. Not looking forward to that as I will be staying on the Azathioprine as well and so be double-immunosuppressed. Yay.

I also wanted to say that I probably have some hair loss from the Aza, but not loads and I was loosing hair because I was so malnourished before that anyway. But I was told the hair loss stops after the first month or two.
 
Sorry! Yeah I remember now. There was so many people giving me a tons of information (which I appreciate sooo much!!) that I forgot who it was.

Mhm, the being immunosuppressed is what scares me more than anything; with the cancer risk etc. but I have to remember that's just a very small chance, not guaranteed. I just have to take the medication they give me and hope for the best.
 
Lewis. Besides two bouts of shingles, ouch, I haven't had any infections on aza. Yes to the thinning hair though sadly. They work really well with me and I would rather aza than steroids.
 
Thanks Daisy. That is kind of a huge thing for me because my hair already is thinning and I take medication to prevent it, but it seems with most IBD medications, it's unavoidable. If I had a thick head of hair, I probably wouldn't mind so much since it wouldn't be noticeable.

Life just gets better and better haha...:facepalm:
 
Lewis, I wish I could answer your question, but it could be a myriad of things.

Gotumtum, what are you studying? You sound flat-out busy. I'm not sure if I have magnesium problems. It's a possibility, since I have epilepsy. I used to get migraines bad, so feel for you. They've settled down as I got older and usually they're relatively pain free, but I end up in a brain fog for several days.
 
Remind me not to eat fries. I had some yesterday. I think I'm paying for it now. It's definitely times like this, it's frustrating not to have answers, but I'll get over it, just like I did last time.
 

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