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Fishmongery I love it!!!!!!!! I've found my GI defensive at times, well until he bent things to say IBS, well the drugs ain't working so guess I will get Mr Defensive again.

Things not great with me. Regualr GP off this week so I held off getting an appointment today (they've been closed 2 days over Easter and I didn't want someone who is ill and been holding on for today missing out when my case is not urgent) so will get one tomorrow or Thursday (closed again Friday and Monday, Royal Wedding and May Bank Holiday) with someone else for the meds top-up. Worst comes to worst I will try next Tues or Weds since I have enough fluxoetine until Monday, doesn't really matter running out of the stomach acid meds lol, missing one flux won't hurt but no more as know musn't just stop those.

Had a very persistent pain in my lower/mid left since Sunday pm, very unusual since they don't usually last more than a few hours and typically I can sleep them off. Been coming and going but it's pretty much there all the time. Did consider A&E at one point as it was so bad but it would have been pointless. Shoulder joint pain really playing up too, one of the bad phases, which means yeuch have to eat more than a few mouthfuls to take painkillers for that!

Temp chart gets completed today so will email that to Rheumy tomorrow along with a reminder i'm still waiting on the new scan.

I'm sorry you didn't get anywhere Cat-a-Tonic :( Sometimes I think if a GI could experience out problems instead of reading about them in books we'd all be helped and diagnosed pretty darn quick!
 
Star, sorry to hear you're in pain. I hope you get some relief soon! At least you have pain meds. My doctors just keep telling me, take Tylenol, take Tylenol. (I believe it's called paracetamol in the UK.) Well, Tylenol does nothing for me! You said it, sometimes I wish doctors could experience the pain and unpleasantness that we go through, maybe then they'd be more proactive about getting us relief and treatment.

As for me, I'm still pretty depressed today. The weather is gray and rainy which totally matches my mood. My stomach is still kind of a painful mess from the gastritis and anything I eat is still going right through me, even when I take Lomotil. I was grumbling around in the kitchen this morning looking for something, anything to pack in my lunch, but absolutely no food in the house looked or sounded appetizing. Hubby saw me and took all the money out of his wallet and gave it to me so that I could buy lunch. But I gave his money back, because I know that no matter what I eat it won't sit well and it will hurt and I'll be running to the bathroom a little while after eating, so he may as well save his money since whatever I eat will be a waste.

I get really emotional in a flare, and the past few days I've been crying frequently. I feel like that's a bad sign. Not sure if it's just the gastritis getting to me, or if it's because I'm off of Entocort and I'm in a bit of steroid withdrawal, or if I am headed into a flare again. At any rate, I just don't feel like myself. I'm a big ball of sadness. :(
 
Oh yeah, almost forgot to add - remember my earlier post about how I was so happy that I had finally regained the weight I had lost? Well, I've already lost 5 pounds in the past week, probably due to the gastritis, but possibly also due to being off of Entocort. For the first year of my illness, I could not gain weight no matter what - on good days, I'd eat and eat and I'd just end up maintaining whatever weight I was at, it seemed I could not gain. And of course during bad periods I'd lose weight. The only time I was able to gain weight was when I was on Entocort. Now that I'm off, I've already lost 5 pounds which is incredibly frustrating. I'm naturally thin to begin with and can't afford to lose too much. My "healthy" weight before I became ill was 136 (I'm 5 foot 8). I got up to about 138 on Entocort and I'm at about 133 right now. I don't want to lose any more weight! :(
 
Just checking in to see how you are all getting on over here, and I am just gobsmacked and sad at the lack of progress diagnosis wise :( A Dr. House is definitely in order for you folks. I hope you all find that someone soon.
Helen xxx
 
Saw my GI today, she ordered a CT for tomorrow and a sample to rule out cdiff. Gave me zofran, nulev and flaygl to start after my sample just in case. She said it's likely this is just a flare of my inflammation but wants to be sure. Talked a little more with her about humira. I think for our trip to Israel in june I'm going to have them just bump my pred up so I'll be ok there and then deal with new meds when we get back. I just want to be able to enjoy the trip. She is still Stumped on exactly what this is but everyone is agreed it's inflammatory and it's in my bowels among other places. Sigh
 
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Forgot the best part! My choices for barium were plain and coffee. I loathe coffee. That was like asking me if I'd prefer vomit or poop flavor.
 
I think we are all in the dumps today. :( I'm so sorry you are feeling so bad Cat! It might be a steroidal withdraw, so you might feel better in a few days, I'm sure. I get really emotional too when I flare, and I also get really bad panic attacks (which I NEVER had before all of this). I feel for ya!

TheMrs, that stinks with the choices! I love coffee, but when I was prepping for my first colonoscopy they told me all I could drink was tea...I HATE tea! I ended up throwing it all back up after trying to chug it! :( You'll get through it though, and then it will just be a bad memory!

My GI appt is tomorrow. I had a bad day today....since I hadn't taken tramadol in so long, it made me so constipated! I had taken it over the weekend, and today I tried everything to try and make myself go. Its never been like this before. I drank hot coffee this morning (which is a trigger for me, I usually go RIGHT afterwards), and then I drank 2 liters of gatoraid...nothing! When I tried to go I got the WORST cramping pain in the spot where I am always hurting. I couldn't stand up straight it hurt so bad! I'm afraid I have a partial blockage, but then I was able to go a little bit twice late this afternoon. Both had nasty dark yellow mucous as well...I'm afraid my GI is going to just right it all off as IBS since it wasn't D, but those meds really messed me up this weekend.

Just need to get the pill cam! I'm praying it will show the inflammation they felt in the hospital but couldn't find in any of their tests!
 
I'm so sorry Allie. I hope they get you in for it soon.


Oh btw, doc told me today to never take immodium as it can cause toxic megacolon in people with colitis! Wha?? Would have been nice to know sooner!
 
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I'm finally feeling a bit better today, so hopefully that means that I'm finally getting over my gastritis and/or steroid withdrawal. I'm so full of gas though, I keep feeling like I'm going to have d so I run to the bathroom, but I just end up farting out about a cubic foot of gas (that's what it feels like anyway!). I was really bloated with the gastritis so I guess this is my body getting rid of the extra air that it had during the bloat.

The Mrs, I've heard something similar about Imodium (I heard that it's bad to use that kind of stuff during a flare, but outside of a flare it's okay to use in moderation). My GI told me I can take Lomotil (similar to Imodium) as needed, and he didn't specify anything about toxic megacolon, but I wonder if that's just because I'm undiagnosed? I only take it when I really need to and I try to avoid taking it during a flare, but I have taken it in a flare without any problems, so I don't know. I also heard that if you take that type of stuff too often, it can make your bowels "lazy" where they don't work as well. That kind of thing scares me so I do try to only take Lomotil when it's absolutely necessary.
 
I am the same with Lopermide, if i'm at home and have problems I rarely if ever take it, but if i'm out or heading out I tend too. Not that that happens often these days!

Had a call today out of the blue from GI to see how I am, he is going to give me an appointment to see him soon and to carry on with meds until then which I knew. I feel we are done with tests and he's going to hand me over to Rheumy in the main, which is fine with me, Rheumy is great and very, very good. Maybe he'll try me on other tablets in the meantime, something that works would be good.

His advice was to try and relax and not worry about the pain, which is hard you know, when you feel so awful you can't think about much else, and that IBS can be hard to treat. Told it was not CD (we shall see on that point) and certainly not cancer which I knew.

No problem with the meds top-up at GP and stopping the spasmonal soon as I finish the box, then domperidone if the nausea doesn't go away.

Temp chart went into Rheumy today with a little reminder that i'm still waiting for news on the scan. He had said in the letter they are restricted and may need to make a special application for it which would delay things.

So roll on Friday for the Royal Wedding, I can't wait, never seen a proper one before and I really like both William and Kate! I will be celebrating by having a small normal meal for dinner, can't take my bland diet much longer, i'm about due for a small breakout (which always upsets me but i'll go mad if I stay on bread and crisps soon!).
 
I'm glad you are feeling better Cat!! :)

I have never heard about the toxic megacolon before, I'm glad you guys mentioned it. I have never taken immodium or anything like it, but I know taking too many laxatives can cause a lazy bowel too. When this started when I was 16 my problem was more constipation than D, and sometimes I needed to take miralax or something similar to help my body out. Of course, it usually just made me the opposite with lots of D, but I felt that was better than being clogged up.

My GI appt today went really well. I can happily say that the 3.5 hour drive one-way was worth it. We went over everything that happened in the hospital, all my current symptoms, and my quality of life in general. I am now scheduled for a small bowel follow through May 16, another appt with my GI a week later, and then a pill cam will be scheduled then. He is doing the small bowel follow through to make sure I am not too inflammed for the pill to get stuck, but if it comes back normal he is still doing the pill cam. I am now back in between crohns and severe IBS....I really hope he doesn't put me back in that IBS column. I am actually quite nervous about these series of tests...I have never been doubtful of a test before (I was shocked when my colonoscopy came back normal), and I don't quite know what I will do if the pill cam shows nothing. I will probably give up for a while and try and treat it as IBS I guess, even though I'm 99% sure thats NOT what it is. I guess I just have to wait and see.
 
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Ok, CT showed fatty infiltration of my liver ( yay, even my liver is fat!) and an ovarian cyst but nothing else of interest so I'm hoping that means this is infection but I'll have to wait for the sample results. Need some bloodwork now to see if my liver is inflammed and to see if my I uranium is at therapeutic levels. Blah.

So in other words " we still dont know exactly what's wrong"
 
Thanks Star! I am very relieved at the moment. :)

One thing I forgot to mention was how he (the GI) treated me. It was wonderful. I expected "this is just IBS, stop complaining", etc, but he told me he admired my patience and resiliency to waiting so long to get answers. He actually called me "kick-a**", LOL. Even though I know he still thinks it might be IBS since he has seen severe IBS cases that are similar to my symptoms, I'm glad is not putting me down or being mean like the GI's I have had in the past. I think I have found a keeper...too bad his tour in Germany (he is a navy doctor) ends this fall! :(

TheMrs, is the cyst still intact? I had one burst before and I got stomach pain due to the fluid running into my abdomen (yuck). I thought I had food poisoning! I hope they figure out from the what they saw what is wrong!
 
Allie, having a good, kind doc makes such a difference! I'm not sure about the cyst, I only spoke to the GI briefly. I'm going to request a copy of the report when I swing by tomorrow to get the lab order. If my d wasn't steroid responsive I'd really be questioning my sanity right now. I had two previous gi's who said it was IBS and then the second one said "well maybe it's vasculitis in your GI tract, I dunno" after my first bout of cutaneous vasculitis and then was a paternalistic jerk to me til I fired him.


I'm more determined than ever now to get off the stupid prednisone.
 
Allie, this is such good news, I'm so glad your GI is listening to you and is scheduling tests! :D I hope that the SBFT either finds something or at least shows that you're able to have the pill cam. I haven't had the SBFT yet myself (one of the few I'm hoping to have done at some point in the near future although my GI has decided not to schedule any tests just yet) but I've had the pill cam, so let me know if you've got any questions about it. As is the case with most of these bowel tests, the prep was the worst part (I had to drink 1/2 prep - I've heard others say that they either had to drink a full prep or just fast beforehand, so it could go either way). Oh, and I know what you mean by being shocked that the colonoscopy didn't find anything, I felt the same exact way. I just couldn't believe that I had been feeling so ill and yet what the scope saw supposedly looked totally normal.

The Mrs, I hope your liver is okay! I've got "focal nodular hyperplasia" on my liver, four of them to be exact - I was told that they're basically benign tumors and they would only be a problem/require surgery if they grow to 8 cm or more (if they're benign, why would they be growing???). I guess my largest one is less than 3 cm and I hope it doesn't grow. I didn't even know I had liver issues until I had an abdominal CT scan last year to look at my guts & stomach, and it caught the liver tumors as an incidental finding.
 
Im a little freaked out. I ate and almost immediately had cramping, went to the bathroom but all that passed was blood. I'm still running the low grade fever. My GI is out the rest of the week but i am supposed to check in with my rheum tomorrow so I'll tell her. I've had plenty of bleeding before, and i'm not in terrible pain, and I know the CT didn't see anything, but i do not feel RIGHT.

Can barium make you bleed?
 
I'm so sorry about the bleeding. :( That doesn't sound good at all. If I was in your shoes and the bleeding got worse I would go to the ER...somethings not right! I don't think barium makes you bleed either.
 
I ended up going to bed, leaked a little blood on my clean white sheets overnight. Have a call in to the rheum now. I hate all this so much.
 
Just talked to her, she is hunting down one of the other GI docs to consult. I need to pick up a lab slip but we have all kinds of storm/tornado warning and watches going on right now.
 
The Mrs, I hope you're able to get the blood figured out! I agree with Allie, I don't think barium can cause bleeding. (I've only had barium once, for my CT scan, and the only effect it had on me was that it caused tons of explosive watery d.) I hope you're able to get in to the doctor's and avoid the storms. Keep us posted!

Oh, and white sheets? That's brave! The sheets on my bed right now are dark red/brown plaid!
 
GI just called me ( on her day off!). I'm going in at 2:15 for a sigmoid scope with her partner.

Eta: of course I'm not bleeding since this morning, but they'd have to see what's causing it wouldn't they?
 
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Good luck with the scope, The Mrs, I hope they find the source of the bleeding and can get you on the mend! Let us know how it goes.
 
Guess what? They saw absolutely nothing. I'm so frustrated. I know I'm not crazy, I know there was blood pouring out of my ass last night. He said it could have been a fissure but nothing obvious. I still had a temp, they did more labs and I caught my rheum in her office between patients and she said " no one thinks you are crazy, I KNOW you're not crazy" so that made me feel better I guess. THIS GI said to start taking immodium but after what my reg GI said I don't feel good about that. What if there is something inflamed higher up? What TRUELY felt like the last straw was with all the going and nausea I didn't lose a pound!!! Criminy.
 
That sucks, the Mrs. I'm not sure how far the sigmoid scopes go but I know it's not as far as a colonoscopy. The bleeding must be higher up where the sig couldn't see. Oh, and just my experience and opinion, but I'd say there's no way it could be a fissure - I've had tons of fissures and I've never had more than a bit of blood on the TP from them, even when they hurt like crazy. They never bled like what you described, there was never blood pouring out or anything like that.

If the bleeding happens again, did the GI/rheumy say what you should do? Go to the ER, or call the GI?

Oh, and I have the opposite problem - I have weight loss all the time, and it's really hard to put the weight back on. I'm thin to begin with but weight just falls off of me when I flare. I lost 5+ pounds from my recent bout with gastritis. And I remember clearly that I lost 11 pounds during my first flare. It's frighteningly easy for me to become too skinny and look emaciated, which I don't like. It's no fun scaring yourself when you look in the mirror and see a walking skeleton!
 
This GI said if I have more bleeding don't worry about it but the last time I lost a pretty good amount of blood and was anemic so we will see I guess. The weight thing, I know it's not good at either extreme. I just hate that I look like this now.
 
Are you on steroids like prednisone or Entocort? The one time when I gained weight was when I was on Entocort. I was on that for about 7 months and I gained back the 20ish pounds that I had lost while ill, plus I gained a few more too. But I've already lost 5 or so which is not good considering I've only been off of Entocort for about a week! :(

Your GI said not to worry about bleeding?? Yikes! I haven't had bleeding except for the little bit when I have a fissure, but if I were you I'd at least call the GI if it happens again. Bleeding is just not right, seems obvious to me that it's a sign of something being wrong! I've heard others on the forum say they've done this and it's gotten results - if it happens again, take a photo of the blood-filled toilet on your cell phone and show it to the GI. Maybe they are just not understanding the amount of blood or something like that, but a photo would surely clear that up!
 
I'm so sorry they didn't find anything! I agree with Cat, a sig scope doesn't go very far...they shouldn't say "oh its nothing" when they couldn't see all of your colon. I have had anal fissures, and I barely bled...more bleeding than my hemmeroid, but not gushing blood.

I'm with Cat, if it gets worse the ER might be the place to go.

I lose weight when I'm in a flare too...it just comes right off! This flare I have lost about 5 pounds, so I'm at about 115. The lowest I have weighed due to all of this is 109, which was just downright scary. I had gone from 124 to 109 in a week, which is why I was so confused that no test will show the issue. No one should lose that much weight in a week! IBS...no!

TheMrs, I truly hope you feel better soon. I know how embarrassing normal tests can be (we all do in this thread actually, lol).
 
Cat- yes, I have been on pred for about two years. I was already thinking about the cell phone thing for next time.

Allie, I know it sucks no matter what.

I will be interested to hear what the stool sample shows and the labs. They did a Prometheus to see if the imuran is even working at all.
 
A sigmoidoscopy really only looks at the rectum, sigmoid colon and part of the descending colon. Ir rarely goes beyound the splenic flexure ( the bit of the colon as before it goes across, located under left ribcage area/spleen). They tend to do this first in a flare as prep no always needed and for bright red blood it tends to be in the region where the sigmoidoscope reaches. Beyond this part of the colon the blood becomes 'altered'..goes darker brown/black or tarry (also known as melaena).
The Mrs - are they planning on doing a colonoscopy ?
I know what you mean about the weight loss being the scary bit.. in fact in my undiagnosed period it was the bit that frightened by GI most other than the bleeding that came on after 1 year of symptoms. My weight went from a nice normal 10 and 1/4 stone /143 pounds at 168 cm(5ft 7) to 6.7 stone/93 pounds at my lightest. I am now at 104pounds which is a bit better!

I hope you are all feeling ok, and Cat that you are managing ok off the entocort and feeling a bit less down.
 
The Mrs, how are you doing today? Any more bleeding? And I'm wondering the same thing as Little Miss H, are they going to do a colonoscopy to try to find the source of the bleeding?
 
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Hey, no more bleeding and it feels like the D may be slowing down to mY normal (5 or so times a day as opposed to 15+). Maybe this is something bacterial and the flagyl is working? Still really queasy. Havent checked my temp but I think I'm still a bit warm.

Forgot to add, I just had a colonoscopy a few months ago so at this point there is no plan to do another I guess.
 
The Mrs, I'm glad to hear you're starting to feel better. As for the nausea, I haven't been on flagyl myself, but I've heard a few others on the forum say that flagyl caused them a lot of nausea, so maybe that's why you're still queasy? I hope the nausea goes away soon, nausea is my #2 most hated symptom (vomiting being #1!). Do you take any anti-nausea meds such as Zofran?
 
Maybe. I had one several years ago that was clear but I asked my gi about it Tuesday and she said if I wanted she would order one but that she personally has never had anyone with a clear colonoscopy have anything show up.
 
I hope that isn't the case. :( I believe people with crohns only in their small bowel get their dx from a pill cam or a test like that. I actually have a medical journal where they did a study where they did the pill cam on patients that had a clean endoscopy/colonoscopy, and 12 of the 17 people were dx with crohns because the pill cam is so in depth. It might be worth it! I'm sure hoping my pill cam is what gets me the proper meds for my symptoms.
 
I wish that were the case for me. When I had the pill cam last fall, I had really high hopes for it (this was before I was on Entocort so I wasn't on steroids or anything else that would have masked the illness). Unfortunately, my pill cam still saw nothing out of the ordinary. :( The only tests I haven't had yet are SBFT and MRI-enterography.

Hey, on another note, did anybody see Catarific's other thread? He/she (I'm guessing she but not sure?) just got diagnosed with bile salts leaking into the intestines, or something like that. Apparently, according to what they said, it can cause weight loss, diarrhea, etc. I'd never heard of that before. I don't think I have that though, seeing as how I respond to pred and Entocort. Catarific made it sound like their condition only responds to a couple of meds and neither were steroids as far as I know.
 
I'll have to find that thread! Its sounds interesting.

Yeah, I've super nervous about my SBFT and pill cam. I'm not limiting my diet at the moment, and I'm trying to just act normal to see if I can get this to show up on anything (I know that sounds crazy, but I'm afraid I will get better and then the test be normal because of it!). I wish there was a way to almost make crohn's worse, just so that it would show up on tests so that I could get pred or entocort to feel better (my doc said there was no way he will do any drugs until he sees real proof). I'm truly hoping these next tests are my answer!
 
Allie, if you didn't already find it, here's the link to Catarific's thread:

http://www.crohnsforum.com/showthread.php?t=17708

And I know just what you mean about hoping to get worse in anticipation of your tests. Before my colonoscopy, my hubby said that my last meal should be something like a cheeseburger (that would KILL me - red meat absolutely kills me, I'm lactose intolerant so the cheese would hurt, and the sesame seeds on hamburger buns do awful things to my insides too!). That way, my guts would be good and angry. I didn't think it'd make that big of a difference, since I already felt like crap every day, so I didn't try to make myself worse - sometimes I wonder if I should have had that cheeseburger after all, if it would have actually made any difference at all diagnostically or not. Although after going through the hell that is prep, I figured my insides were plenty angry and that alone should have shown up on a test! :(
 
Yeah, I had a ceaser salad tonight at dinner...my husband was so mad at me for it. He was actually trying to eat most of it to keep me from eating it. I just kept looking at him and saying "but IBS people are suppose to eat healthy!". I think the worst part about the salad is that it had all kinds of seeds in it, including sunflower and poppy, which will probably upset my intestines the worse (I didn't expect the salad to have this). It was sooo yummy though...all I ate before this started was fresh fruits and veggies, so it felt like a breath of fresh air eating it. I have also eaten celery and grapes for the past two weeks. I just don't see the point in trying to follow a diet anymore...everything I eat hurts, and I might as well try and get this inflammation to be significant enough to show up. I guess I just don't know what else to do anymore!

oh, and I found the thread, thanks for the link though. :)
 
Allie, I totally get that!! I think it Only sounds crazy to people who either aren't sick or who have an easy diagnosis.
 
Little Miss H, does that mean they found signs of illness in your small intestine then? I would bet the farm that I've got illness in my terminal ileum or right near there, as my pain is almost always in the LRQ, but supposedly my colonoscopy scope got that far and didn't see anything (the biopsies didn't find anything either) and the pill cam made it past that point as well and also didn't see anything. I don't know how I can pinpoint the area where my pain is (from the outside anyway) but they can't find anything there!

This reminds me, it's been a full year now since I've had a colonoscopy. How often do you other undiagnosed folks get scopes? Do you guys think I should request another one be done this year so that they can have another look, or should I wait until things start to get worse again?
 
I would wait until it got worse. My GP said that if you get shallow ulcers scar tissue is hard to see, so I'm betting if you feel worse the colonoscopy has a greater chance of showing something!
 
Allie, that makes sense. I have no idea if I get ulcers, none were ever seen in my tests, and I haven't had bleeding except from the ocassional fissure (I've had hemorrhoids but those never bled). I just hate playing the waiting game, as I'm sure you can relate to. On one hand I never want to flare up again, but on the other hand I want to flare very soon so I can get diagnosed and treated!
 
They found multiple nodules and narrowing in my proximal small bowel but the cam was delayed there so it didn't get through the whole small bowel. It didn't see the the area where I was bleeding from so they assume there is another affected area further along. They did want to do a double balloon enteroscopy (an endoscopy of the while small bowel that takes 2-3 hours )to find the bleeding point ( my hb dropped from 160 to 71 over 2-3 weeks due to the bleeding)but I wasn't keen. At that point my gi started me on Pred , then aza as I bled/ got worse whenever Pred dose went below 20mg.
 
I've heard of double balloon endoscopy but I didn't know it takes 2-3 hours. I would imagine that pain management/sedation levels would be tough to get right during a procedure as long as that. Still, it's something for me to keep in mind. Do you know if they can take biopsies during a DBE? My GI is very big on taking biopsies - he took so many during my c-scope that I was in a lot of pain the next day! If biopsies are possible, it might be something I can convince my GI to do.
 
Yes they can do biopsies. There are very few centres that do this, in the uk only 2. The place I was having it done they did under GA (though the information leaflet said it was light sedation which is why I didn't want it doing...the thought of an endoscope down my throat for 2-3 hours terrified me).
 
That test sounds like something that could help you Cat....the one part about the pill cam that I don't like is that they don't take biopsies, because of course it could be microscopic. ~.~ I bet you they do a heavier sedation for that test, like what they put you on for surgery. Of course your recovery time would be longer...I was SO sore the day after my hernia surgery I couldn't move!

My husband ordered a ton of vitamins from Walmart.com, and they shipped here in less than a week. He got me liquid vitamin B supplement, where one dropper full of this nasty tasting stuff is 20,000 times the about of B12 you need in a day. I've been drinking red bull since it has 250% of your vitamin B12, and it has helped with the chronic fatigue, but now I can skip the caffeine since I am allergic to it and I can pass out pretty easily (yet I love coffee and coke and chocolate...oops). I tried a little bit ago, only have a dropper, and I'm hoping it helps me feel better for a fancy awards banquet I'm going to tonight! I'm hoping the blood tests from my appt showed a b12 deficiency (since I have other symptoms of this other than the fatigue) so that I can get a rx for b12 shots since I am not absorbing nutrients very well.
 
What a complicated road we are all on, I was and am still gutted that my Pill Cam booking was withdrawn.

Pain so bad at the moment it's keeping me up until 3 or 4 am and the pain is not like a pulled muscle or anything, I know it's bad but would be a waste of breath telling GI.

Feeling iller and iller every day and able to do less and less. Appetite is very poor and starting to feel bloated and uncomfortable sometimes after eating. Yesterday I had a small cheese scone, pack of crisps and half a roll and I didn't want anything for hours and hours after.

:(
 
Sigh...what a world we live in. Before I came to this site I was under the impression that poor medical treatment was more prevalent here in the U.S. due to our atrocious, greedy, capitalist healthcare system. But apparently it doesn't matter where you are; if you're in our position, you're basically screwed.

I have less than two weeks until my pill cam follow-up, and that seems like an eternity right now. I'm starting to feel worse and worse every day. I keep losing weight due to the fact that I'm practically terrified to eat. Any time I do eat something, my pain spikes and I feel even more sick. At this point my GI refuses to give me anything for my pain. All I can take is Tylenol, and that only does so much. I almost feel guilty because my family is so worried about me. They're just as fed up as I am. Right now I'd welcome a kidney stone with open arms. The only time I ever get any relief is when I'm passing a stone; due to the fact that they're willing to give me lortab for the renal colic. Not only does it reduce my pain to a manageable level, but also slows down my bowels to where I may only have to sit on the toilet 5-10 times a day instead of 15-20.

The last few days have been strangely troublesome for me. On Thursday I woke up feeling even worse than I normally do...but in a different way than usual. I still had my typical pain and diarrhea(with a bit of thick, dark blood. not a lot...but still), but my general malaise and lethargy was a lot more severe. I felt horrible and strange(I don't really know how else to explain it). I took my blood pressure and it was extremely low, and my pulse was high. As the day progressed it didn't get any better. It got to the point where my mom felt the need to call her PCP for advice, who told her I need to contact my GI. My GI, of course, was not in that day so I talked to the doctor filling in for him. He proceeded to tell me I was simply dehydrated because of my diarrhea. I've been dehydrated before. I know what that's like. This wasn't dehydration. I tried to tell him I drink a ton of water every day, and was quite sure dehydration was not the cause of my malaise and low bp. To which he replied, "Well go get some Gatorade. Water isn't good enough. You need electrolytes". Water isn't good enough? What kind of crap is that?! I know Gatorade is good for hydration, and that the body needs electrolytes. But were people dropping dead left and right from dehydration before it was invented in 1965? No! If you drink enough water, and aren't extremely active, Gatorade isn't really necessary. My mom did go out and get me some Gatorade anyway because it was worth a shot. I drank a full 64 ounce bottle in just a few hours, and it didn't help one bit. I even ate a couple pinches of salt. The fill-in doctor also told me that my GI would be in Friday, and since he knew my situation better, that I should talk to him. He said he would leave a message for him to call me Friday morning. Did I get a call on Friday? No, I didn't. I even tried to contact him myself since there was no change in my condition, but no one answered and the messages I left were apparently ignored. It makes me so mad! I'm not feeling as strange today but my bp is still very low, and I woke up at 4:00am this morning drenched in sweat. My sheets and pillowcase were soaked through. Oh, and I should probably mention: my blood pressure is always optimal; even when I'm in extreme pain or taking medications that typically lower your blood pressure as a side effect. Having been suffering for nearly 30 years I've learned to control my blood pressure. It's one of the few things regarding my health that I pride myself on. So for it to drop like this is very strange. I don't know what to do. I refuse to go to the ER since I know they won't do anything. The hospital I would have to go to is 45 minutes away, and gas is just too expensive right now. Needless to say, this only increased my existing frustrations. Anyway, this is turning into a rant, so I'll stop. :p Just had to get that off my chest...

Star - Why in the world was your pill cam booking withdrawn? You seem like you're in the same boat as me, and my GI was adamant about getting it done ASAP. Did it have something to do with how the healthcare system is set up in the UK? If so, that's ridiculous. These doctors should be doing everything in their power to find out what's wrong with us. But, alas, most of them don't seem to care one iota. :mad2:
 
Right well my GI decided to order it but because it is so expensive it has to go through a certain Nurse's office for approval. So I get a call and am booked in but then get a letter saying I can't have it since it's most useful in aneamic patients with a suspected small bowel bleed (which arrived on my birthday).

Then I see my GI again who tells me he met with 2 staff from Radiology and the Gastro team who decided that if I had it and it found one ulcer, it would not help with a diagnosis and as it's expensive.... it's also this meeting that declared my WBC scan negative after a year of being accepted as positive, only after a normal colonoscopy and barium meal. And then what do you know we're handily for them back to the IBS diagnosis i had from the same deaprtment in 2007. GI then decides "well, we'll ignore that" in terms of my 5 years consistently raised CRP (22-36), because it doesn't fit with the IBS theory.

Talk about protecting your own. I thought about offering to meet half the cost but realised it's very unrealisitic I had anywhere near enough money!

If it was routinely available I think I would have gotten it since GI was keen before the little meeting he had, which had I had the test may not have happened.
 
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well i lost my health insurance back in october and was doing fine for a while now i get to go to the VA hospital for my health care all free including meds but the gi doc there thinks i just got ibs since they cant find the chrons ucluers in my scopes or on the slides. i just recently had my third egd/colonoscopy on firday and they found gastritis and found nodules in my colon and that i have some small hemmies. pretty much everything i knew already. i still having raised white blood count, slight temp, pain in joints, rash on back, d, and nausea everyday and my crp count is up and my ana panel came back positive.
 
Afman, have you ever had a pill cam to check the small intestine where the scopes can't reach? It sounds like the next step if not.

How were you dxed with crohn's a year ago? Thats crazy that your new doc wants to take away a previous dx....I hope they find more evidence soon!
 
yes i had the pill cam twice and it just set in my stomach for 7 hours. so i am supposed to have another small bowl follow through to check for narrowing before they endoscopy set the pill cam into my small bowel.
 
Gotcha...my next test in two weeks is a SBFT, to find inflammation. Then I'm getting a pill cam shortly after that. The reason I asked is because your situation sounded a lot like mine! But if they had already diagnosed you, why would they not take that and help you, not put you through test after test? That just seems wild to me!
 
since she dx on her experince and my symptoms and response to the chrons meds. and not on physical eveidence on slides.
 
Well everyone, after 2 years I can finally say I have a diagnosis. Crohn's. (Small bowel specifically).

The pill cam officially caught it this past Friday. I also have some Ulcers in my intestines/small bowel as well. I feel a little weird about this diagnosis. It's been 2 years now that I have been tirelessly searching for an answer. Now that I have one, I don't know what to think? Maybe I'm crazy! But I just wanted to update you guys and thank you for all of the wonderful support!
 
YAY!!!! I am so happy for you Kait!!! It must be so surreal that you don't have to fight for your diagnosis anymore. Congrats!!! :D

I hope I will be able to say the same thing after my pill cam!!
 
Kait, it somehow doesn't seem right to congratulate you having a diagnosis of crohn's but i am glad you have a diagnosis and can be treated appropriatly now. Did they start the pentasa before or after the results? and are they going to treat you with anything else?

Are they going to treat you on the basis of the images seen on the pillcam or will they attempt to get a biopsy for a tissue diagnosis. Just interested as i was diagnosed by pillcam and my gi didn't want to put me through tbe ordeal of chasing a biopsy . The only reason he considered the ballon small bowel endoscopy was because there was a query of small bowel lymphoma and i was bleeding ++ .
 
I really am happy for you!! Not that you have CD but that you have an answer and can start to sort things out.

Although I will be honest and say everytime I see a pill cam diagnosis (several lately), I am so angry and upset, because I had one booked and then withdrawn :(

As for advice, perhaps your vacation would be an ideal time to think things through and absorb everything, ready for you appointment, plenty of time to find out what you'd like to know from GI.
 
Star, you should press to get that pill cam. I was told they wouldn't spend the money on mine, but then I was hospitalized. My doctor's view on my case changed dramatically because a German GI told me I needed the pill cam, and he is now determined to getting me a crohn's diagnosis. I feel so bad for you and I really hope you can press for this. You even have more proof than me with the CRP levels!

I have a medical journal saved on my computer showing the statistics of how the pill cam is successful in finding crohn's in patients that had a clear colonoscopy and upper endoscopy. I printed it out and was prepared to make my case with it if my GI wasn't going to do the pill cam. If you want me to send it to you I would be happy to, just PM me your email. I know how hard this is and how you can't just sit around and suffer! This disease is too hard on your body to do that.

As for me, this week has started out pretty bad. I ate a salad last Friday and I have felt bad ever since...severe abdominal pain, extreme D even though I'm on tramadol, two huge painful mouth ulcers, and just general weakness. My in-laws are coming from the US this weekend so I get to spend my week getting the house ready, as well as doing lots to help our on-base theater get ready for a play coming up. I wish I had more time to rest, but I guess life doesn't work that way. ;) I get to prepare for that SBFT while my in-laws are here, and I am not looking forward to being in pain and having D while they are here, but I know I can't heal before that test...oh well. It will be an interesting visit indeed!

Oh, and I was told today the SBFT can be 5 hours long...maybe I should bring a book? lol

Oh, and star, I understand being disappointed when you see other diagnosis's when you feel like yours will never come. I am so happy others are figuring out what is wrong and getting treatment, but every time someone does I nervously ask myself if I am going to be one of them soon or if I am going to be like Cat and the pill cam see nothing. I am a ball of nerves right now with these upcoming tests, and I am so tired of normal test results. My body would not put me in this constant pain for nothing. IBS would not cause this kind of pain. THIS IS NOT IBS, and neither is yours. We just have to keep fighting until we win, because if we give up the disease wins...and we can never let that happen.
 
Thanks allie.

The view of my GI and his colleagues is such that I have IBS and a Pill Cam would not be useful in terms of a diagnosis. When they are willing to change clinical findings (the WBC scan) to suit their views there is pretty much no point in asking about the Pill Cam again. They are entrenched in their view, do not listen, and won't change their minds anytime soon.

All my hopes now are with Rheumy and getting a FDG-PET scan. Or A&E if this pain gets much worse but they weren't exactly a whole lot of help last time. Best to hope for a collapse or faint or something that gets me some proper attention.

Keepsmiling21, I meant to reply to your other topic lol but ended up posting here somehow!
 
I guess you will just have to wait and when your symptoms change you can get their attention again? My GI was firm with IBS until my stomach swelled in a 1 inch place and was very hot to the touch...that got his attention. Too bad they didn't find anything while that was happening, and they treated it with rest, fluids, and meds via IV.

How are the meds working that they have given you? I'm sorry if you have said this in another place. I know you said they started to decline, and I hoped that changed. Have you ever been on any kind of antispasmodic before? If it didn't work, do your GI's know that? IBS is your intestines spasming, so if that doesn't work that should show it isn't IBS. Sorry if thats a ton of questions!
 
Star, I think at one point you mentioned a specialty gastro clinic or hospital that you were trying to go to. Did that ever pan out? If your current GI doesn't think a pill cam is necessary, maybe you could convince the specialty gastro place to do it?

Allie, I haven't had SBFT done myself, but don't they give you the same barium stuff that they make you drink before a CT scan? If it's the same stuff, personally I wouldn't bother bringing a book because that stuff went right through me. The instant I got home from my CT scan I had to run for the bathroom - it was close, I nearly didn't make it! I've heard others say that the barium stuff just constipated them, so maybe it's different for everyone. Probably you should bring a book or something just in case. Only a couple more weeks to go now, right? Either way it should be productive for you - if they find inflammation, that should definitely help you get a diagnosis, and if it doesn't find anything, then you're cleared to have the pill cam. And if it does find inflammation but they want to do the pill cam anyway, my understanding is that they can do a dummy capsule first. If it passes, you're clear to do the real thing, and if it gets stuck, it just dissolves without causing a blockage or anything. I had inquired about doing the dummy capsule, but my GI didn't think I was at any risk of stuff getting stuck - plus, I was told that it actually costs MORE to do the dummy capsule than it does to do the real pill cam! That's crazy! So I did the pill cam without knowing for sure whether or not it'd get stuck - scary, I know. Fortunately it apparently passed just fine (I never saw it in my stool, but on subsequent tests like MRI & xray they see no signs of it and I never had a blockage).

Edited to add: You don't have to return the pill camera capsule once you expel it. Just in case anybody was wondering. ;)
 
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Yeah, with the SBFT I think they have you drink the same stuff, but they take the x-ray right then, several times, to watch the barium travel through. Thats why it can take longer, since people can have intestines that move slower. I've had 2 CAT scans and I had to pee like a racehorse after drinking that stuff, and it also constipated me. They told me I have to drink tons of liquid afterwards for a few days to get it all out of my system. And yes, its in exactly two weeks!

My GI isn't going to do the dummy pill, and he has explained that it might get stuck, but I told him I'm not too worried about it since if it does I would obviously have my diagnosis, which we are both aiming for atm. I know emergency surgery would not be fun, but my opinion on it at the moment is if it gets me access to the proper treatment, I'll do anything right now!
 
Thanks so much guys. No no improvement with meds, I think D is worse these days and pain certainly is. I had Buscopan which worked a few times and then stopped, and I am now coming to the end of a 100 count box of Spasmonal (3 a day) which hasn't worked either.

GI did phone last week and I said no change with meds and his response was they can take awhile to kick in (despite it being double the time the SSRI is supposed to work in). See nothing will change his mind! Haven't even had my CRP done lately, and since he's decided to ignore it won't be done until July when I see Rheumy as I will insist it's done.

Still want the second opinion at the sepcialist center, but at the moment I am holding off since a new scan seems a real possibility. Hoping that will clear things up or lead to more tests/being taken more seriously.

As it involves a bit of travel and some expense it's not ideal but something I am keen on.
 
I think a second opinion is a great idea. Your GI not listening to you, your symptoms, and your CRP levels isn't right. That sucks that its farther away, and the costs, but I guess you just have to figure out if its worth it. I drive 3.5 hours to see my doc and I feel like its worth every second, esp right now.
 
Star, so it won't be until July that you see your Rheumy? Does that mean the scan will be after that? Sounds like a long time to wait, and it sounds like you are gradually getting worse. Is there anything you can do in the meantime besides going to the emergency room (A&E I think it's called there)? I get so frustrated reading about all the roadblocks you've hit lately. Now you can't even get your CRP measured until July?? Would they measure that if you went to the A&E?

Allie, that sucks that emergency surgery is something you need to possibly prepare for. I hope the SBFT can at least show if the inflammation is bad enough that the pill cam would get stuck or not. Good luck in 2 weeks! What's the prep like for SBFT? Do you just have to fast or do you actually have to drink some nasty prep stuff?
 
Yeah, its weird to think about emergency surgery, but my doc is paranoid with that kind of stuff, so I don't think the chances are that high, especially with the SBFT before hand. Prep for the SBFT is so easy, just fast starting at 9pm the day before (my appointment is at 8am). The 3.5 hour drive without food or water at 4am is going to suck though! I might just drive there the night before and spend the night in a hotel, but we haven't decided yet.

Star - I agree with Cat, I think they would measure your CRP in the A&E..they would measure that in the ER in the US if you explained why you were there. What tests have you not gotten other than the pill cam? Maybe the A&E could help you with that too?
 
I heard from Rheumy at the beginning of April that he would order the scan, but that they were restricted so he may have to make a special application...

So July is when I see him in person (I had a Feb appointment, before the SBFT, so I changed it, thinking I would have an answer shortly, soonest they could do was June, then that was cancelled and changed to mid July).

And as I said expecting a GI appointment through shortly at which am not expecting anything to happen (I think he wants to write it off as IBS and send me back to Rheumy).

I could go to my GP and get the CRP measured, I don't think she'd have a problem with that. I haven't seen her to update since my colonoscopy results so something I was thinking of. I know and understand she herself cannot help me now but maybe she can push someone somewhere. I was thinking of getting my B12 and FBC checked again too, as I switched the multi vitamin with iron to a plain multi vitamin to see if something would then show on my results, and get me some help.

The tests i've had are flexi-sig in 2007, WBC scan a year ago, Colonoscopy xmas last year, SBFT Feb and ultrasound of gallbladder/liver/kidneys.

I went to A&E last year after very very bad D for days, they took some blood, tried and failed to get me a Gastro appointment (this was when I had had WBC scan and Rheumy referred me to GI), and was sent home and told to drink more. So I am not keen on wasting time or money on getting there!
 
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Star, it sounds like there's a lot of tests you haven't had yet. Would your GP be able to order something like a CT scan for you? I think that one is pretty common, that was the second "major" test I had after my colonoscopy (I had plenty of blood & stool tests first though). You haven't had an upper endoscopy either? So they've pretty much just looked at your colon and they're saying it's IBS without giving a glance to your stomach, esophagus, and entire small intestine? At any rate, I'm glad your GP can at the very least test your CRP again. Mine was at 17 the last time I had it checked, and I intend to get it checked again soon too. Now that I'm off of Entocort I intend to be proactive about getting my bloods done fairly frequently, in the hopes that I can catch the next major flare before it gets too bad.

Allie, when I had my abdominal ultrasound the other week, they told me no food/water for 6 to 8 hours before the procedure. The ultrasound was scheduled for something like 2 PM, so I basically had to take a big drink of water when I got up at 6 and then stop. I got so parched, and I remembered that from other fasting preps that they always said I could take little sips of water here and there if I needed to. So I snuck sips of water every hour or two before my ultrasound, and it went fine. So, if you get too thirsty beforehand, it shouldn't be a big deal if you have a little sip of water or two.
 
Thanks for the advice Cat! I will definitely keep that in mind. :)

Yeah, and if you have only had a colonoscopy star, there are SO many other tests you could get done. They should not say IBS with only looking at your colon....
 
Back in 2007 that is exactly what happened, one flexi-sig and told it was IBS, said the raised CRP was probably cystitis!!

Have had SBFT (barium meal) but that didn't show up anything. Just the WBC scan which did find inflammation on the lower left side apparently, and the CRP. They discussed another WBC scan but was ruled out due to uneccessary radiation exposure (this was 2 weeks before they handily for them declared it negative after all, jeez, if it really was negative they wouldn't have had a notion of another one yet alone ruling it out for another reason)

All my hopes are on this new scan and I think I will see my GP soon.

On a side note I had one stool test done in 2006, and one about 2 years ago to check for norovirus following a bad bout of flu, so not even had that tested since I got worse/ came back to Gastro.

Good luck for your next tests allie, one thing I found with SBFT is that I had to be very active for several days not only drinking water but with the flushing and scrubbing of the toilet bowl, i'd stock up on half a dozen toilet brushes! Because it doesn't dissolve in water (which makes it a good testing material) you have to make sure it gets loosened and then flushed down.
 
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Star, that's interesting about the barium not breaking up in water. Did it constipate you as well then? It gave me very watery d when I had barium for my CT scan, it was the "peeing out my butt" kind of d that I get when I do prep. It surprised me to hear that the "usual" response is constipation because it definitely had the opposite effect on me!
 
Hi guys! If you've been reading my other threads, you'll know why I'm here...

Thanks Star and Cat for letting me know I was welcome to join the club!

I hope none of us have to be members for too long, or much longer if you've already been here for a while :lol:

I read just this last page. Allie, good luck with your tests, and Star, good luck with getting a new doctor/getting your current doctor to be more proactive in getting you an answer!
 
I wasn't constipated as such, because, being very unimpressed with the suggestion of a mild laxative if I did get that way, I drank a ton of water for days lol. Had the odd pain where I assume the waste gathers before coming out in colon but that was it.
 
Hi Ballerina and I'm sorry that you have to join our club. I hope you don't have to stay in diagnostic limbo for too long. When do you get the biopsy results from your colonoscopy? If I'm remembering right, I think mine took about a week. I hope yours give you some answers!

My latest update is that I have the most awesome GP. I just had to re-apply for Family Medical Leave (for those outside of the US or those who don't know what FMLA is, it's basically a job protection of sorts - if I get approved for it, then I can't be fired for taking too many sick days due to my illness). I had FMLA last year but my GI had put on the forms that my condition was maybe permanent and maybe not, and he listed "undiagnosed" as my illness. So this time around, I had my GP fill out the forms instead. He put down that my condition is permanent, and where it asks for the name or type of illness, he put "Inflammatory Bowel Disease / Colitis". Yay GP! I know it's not official of course, but it's so nice to know that my GP believes I do have Crohn's/Colitis. My GI does too, but he's so much more hesitant to put a label on what I've got. The most my GI will say is that I've got "chronic non-specific enteritis" which is basically a generic placeholder diagnosis until he can figure out what's actually making me ill. It just made me so happy to see my GP write down something more formal & concrete, you know? :)
 
Well, he told me to see him in two weeks so that we can go over the results, but when I called to schedule my appointment they said that his next available slot is May 31. Soooo, I have to wait a month now! :-(

My ballet teacher wasn't too happy with that news, and she wants me to call my GI and ask if he can give me something to take meanwhile or some suggestion as to what to do when I get the pain. Because she's seen first hand how bad it makes me feel and that it's affecting my dancing, and she really wants me to get better. I should take her advice, but I think I'm just going to wait it out and if I am faced with terrible pain again like last time, I will call him right away or just go straight to ER.

Lucky that you have such a nice GI, I don't know what to think of mine yet. I guess I just wish he would have been more helpful in suggesting what the problem could be since they didn't find anything just by looking at the colonoscopy, and that he would have been more responsive when I told him about what kind of pain I'm having, and that he would have told me what I could do in the meantime. But, he is supposed to be one of the best GIs in the area (I'm in Atlanta) and so I'm just going to remind myself that he knows what he's doing...at least for now.

Good luck getting the FMLA!
 
One of the "fun" things about being undiagnosed is that you do kind of live in a limbo of whats going on. It seems like GI's will keep you from meds until they know exactly whats wrong, and the tests can take a while to schedule, so you have to patiently wait for then to figure it out. It sucks!

I'm from Atlanta too happyballerina! I just moved from there about 6 months ago since my husband and I are stationed here with the Army. I've actually been to two ER's in the ATL area with this issue, Saint Joseph's and Northside, and I was discharged only a few hours after I got there saying I needed to see my GI. I was given pain meds, but not high level narcotics (just tramadol).
 
Hi Jack, welcome - I'm not really sure who you are responding to in your post? Are you undiagnosed as well?

Ballerina, I agree with your ballet teacher - please call your GI. He may be able to give you the biopsy results over the phone or he may also be able to send you a letter with the results. That's usually what my GI does so that I don't have to wait until my next appt to get my results.

And yeah, unfortunately what Allie said is correct. Most doctors won't give us undiagnosed folks meds, because not only do they not want to risk giving us the wrong meds and making us worse, but also they don't want meds to "mask" any symptoms. So we get to suffer most of the time, lucky us. If you're in a lot of pain, talk to your primary care doctor. From what I've read on the forum, it's not all that common for GIs to prescribe pain meds, but GPs do that much more frequently. (Hopefully you don't get told the same thing I was told, which was "take Tylenol for your pain". I've taken my body weight in Tylenol by this point and it does nothing!)
 
I agree with cat, my GP gave me three months worth of tramadol knowing that I'm in limbo, and it has helped a ton when I need it!

I hope the biopsies show whats going on!
 
Hi all, popping in for a few. I've had a lousy week. Still running low grade fevers. Been on mostly liquids because solids are going right through and causing major cramping. Still waiting on labs from last week. I am doubtful they will show anything because they never do ( except for inflammati
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on, those are always elevated)
 
That's funny about you being from Atlanta -- I had my colonoscopy done at St. Joseph's! Do you know a Dr. Karsan? That's who I'm seeing.

Luckily I have an appointment today, in two hours actually, with my GP. It's been scheduled for over a month actually. I'm going to tell her what's been going on and see if there's anything she could do about it. It would be nice to maybe get her opinion too.

I'll see if I can call my GIs office and ask him to send the biopsy results in the mail, although I'm kind of nervous to look at them myself, I think I won't stop thinking about them until I get to the appointment which might make it worse than waiting without seeing the results first...yes, I do over analyze things ;)

I will also be getting SO MUCH blood taken today at my appointment. Only twp things are for my GI though -- he requested tissue transglutaminase IgA and IgA quantification, for celiac disease. I had been tested in the past and it came back negative but he told me to get that blood work done anyway. The rest is for my new dietitian, whom I see tomorrow. Lipids, CBC, TSH, T3, T4, comprehensive metabolic panel, A1C, and vitamin D -- but some of those are relevant to my GI issues anyway, because if any problems like vitamin deficiencies, etc. show up, I can take that to my GI too.

The lucky thing is my dietitian is a clinical dietitian, a renal dietitian by practice, but she has experience working with GI patients so while I am not seeing her primarily for that, she could also shed some light on my problems and she might have some suggestions which she can then share with my GI. Basically, I'm glad I'm in a situation where I have 3 separate doctors who know what is going on, and 3 heads are better than 1.

This is getting very long. I have one more question. Do you guys sleep a lot?? I am known for my waking up abilities, I just jump out of bed when it's time to wake up full of energy. But lately, I sleep for 10, 11 hours. It's weird for me. I set an alarm, too, but I don't remember getting up to turn it off, but I must be getting up to turn it off, and that is so uncharacteristic of me. And despite all this sleep, I'm still yawning away my days. What gives?!
 
Ballerina: Do you know if your GI is going to have your biopsies checked for celiac as well? I have some distant family members who have celiac disease, and when I was first undergoing tests, these family members all told me that the blood test isn't very accurate and that the "gold standard" for diagnosing celiac is an upper endoscopy with biopsies (scope down the throat and into the stomach, as opposed to where the colonoscopy goes). If celiac is a possibility, definitely make sure to ask your GI about having an upper endoscopy to confirm/rule out celiac disease. When my biopsies came back clear, I was told that means that I definitely do not have celiac, so even though I'm still undiagnosed, at least I have ruled that one out.

As for sleeping, I'd never been a very good sleeper, and that did seem to get worse when I became ill. For quite awhile my eyes would pop open at 5 AM on the dot and I couldn't get back to sleep again for the life of me. It didn't seem to matter what time I went to bed, either - no matter what, when 5 AM rolled around, I found myself suddenly wide awake. That was exhausting! Back in October, my GI tried me on a Crohn's med called Entocort (it's a steroid that's somewhat similar to prednisone but much milder than pred). Entocort worked well, but I got a side effect from it in the form of constant headaches. So my GI then also put me on Amitriptyline, which is an anti-depressant, but is also known for other things such as controlling and preventing headaches. Amitriptyline worked great for my headaches, and another effect of it is that it knocks me out at night and lets me sleep very well usually. I'm on a relatively mild dose, 25 mg. Before I was on Amitrip, my GP had tried me on another anti-depressant/sleep aid, Trazodone, and that also worked well (I believe I was on 10 mg of Trazodone). So you might want to ask your GP if something like one of those would be beneficial to you.
 
The Mrs, I must have totally missed your post. Sorry to hear you're still not doing so well! Sounds like a flare to me with the fevers. I never get fevers when I flare but I know that many others on the forum do. I do get chills when I flare but oddly enough no fever - weird huh! Anyway, I hope you feel better soon, I know how much it sucks to be stuck in a flare. :(
 
TheMrs, I hope you feel better soon. Hopefully your labs will show something! Keeping my fingers crossed.

Cat -- I assume if he ends up doing an upper endoscopy that he'll take biopsies as well, in which case I guess he'll check for celiac since it was his idea anyway. We'll see what he says at my next appt; I'd like to get an upper endoscopy so that he can check my small intestine, so I will bring it up unless he does first. I, too, have heard that the blood tests for celiac are known to be inaccurate. Maybe that's why he told me to get a second test even though the first one came back negative? Honestly I will be very surprised if they find out I have celiac, as for one thing I am not underweight in the least bit. In fact, I am trying to lose weight.

I'm not sure how I would feel about taking antidepressants, but I guess if it helps than it helps! Although I totally see the part about not wanting to take meds before diagnosis so that it doesn't hide any symptoms. This is complicated!:ybatty:
 
happy ballerina: Unfortunately I didn't get that far with Saint Josephs. :( They told me that they wanted me to go to my regular doctor and get tests done there since their technicians were not there. They gave me a ton of demerol before I left...that stuff is strong! O.O

I actually miss Atlanta a lot! I love that city so much. I will be spending 4 months there in the fall actually, finishing my last semester of college. :) I'm so excited!

If you want something to check your small intestine I suggest a CT scan or pill cam. Upper endoscopy only looks at the very beginning of the small intestine, kind of like the colonoscopy only looks at the very end. It gets too small and curvy for the tube to get through.

Where is your pain located? That might help figure out where your inflammation/complications are.

TheMrs: I am sorry you are feeling bad. :( Are your docs trying to treat you with anything? I hope they aren't leaving you in complete limbo.

I'm having a bad day myself. :( Had some homemade pizza (my specialty lol) and I added bell pepper this time, and I don't think they cooked all the way through. Tons of D and pain. I actually downloaded the GI monitor app to my Iphone today (it was suggested in another thread) and it says my quality of life today is a one out of ten. :( Maybe I don't like that part of the app, lol. But it is wicked awesome at tracking food, BMs, and pain. I took a tramadol after the 7th time running to the bathroom so I'm just chilling for the night.
 
Ballerina: With regards to the anti-depressants, it was explained to me that they only "work" as anti-depressants in higher doses, I think the minimum is something like 50 mg. In smaller doses, 10 to 25 mg, they have different therapeutic benefits (such as stopping the headaches and as a sleep aid) but don't work as anti-depressants. So, technically you could say you're not really on an anti-depressant since it doesn't have that function at a lower dose, if that makes sense. (That's how it was all explained to me anyway!)

Yeah, I was pretty sure I didn't have celiac either, since breads and pastas have always been gut-friendly foods for me, but it was good to get that definitively ruled out. I did lose a fair amount of weight - around 20 lbs - during my first year of illness, so it was something that needed to be ruled out anyway.

And yeah, I guess I am the exception to the rule because my GI actually tried Entocort on me. He saw that I was struggling with all the "normal" test results, and he decided that I needed a rest and some relief. We already knew that I respond well to prednisone, as I had done a very short trial of it earlier and felt fantastic on it, but my GI didn't want me on pred long-term as it's pretty harsh on the system and can cause lots of other problems over time. So the next best thing was Entocort, as it's milder but similar (it doesn't go into the bloodstream like pred does, it's got a special coating on it so that it gets released to a specific spot in the intestines and it only works in that spot). I was on Entocort for 7 months and just stopped taking it a few weeks ago. It was nice to get some relief, and I feel ready now to start going through more tests again. My GI hasn't scheduled anything yet, and I'm hoping that the effects of the Entocort will have completely worn off by the time I do start going through diagnostic tests again.
 
Cat, what are you looking at getting? I wish you the best of luck on all of them! I hope you get out of the undiagnosed limbo as soon as possible!
 
Allie, I'm finishing up a course of flagyl and I have an antispasmodic and some zofran. Not sure any of it is helping.
 
Oh yeah, I meant to say that but Allie beat me to it! About the upper endoscopy, that it only sees a little bit of the small intestine. I agree that something like the pill cam is really the only way to see what's going on inside the full length of the small intestine. CT scan or MRI should be able to see if there's any thickening of the bowel wall or strictures going on there, too.

Allie, sorry to hear you're having a bad day. I'm hit or miss with homemade pizza (can't do any store or delivery pizza though so I have to do homemade). Sometimes the grease seems to get to me, sometimes not. Sometimes the sauce hits my acid reflux, sometimes not. It's so hard to judge what'll happen! I love pizza but sometimes I definitely pay for it.

I didn't have the best morning but am doing better now. I woke up feeling hungry and nauseous all at the same time - I hate when that happens! I usually have no appetite before 10 or 11 AM so it was weird to feel hungry so early in the morning, and I didn't trust that at all so I didn't eat anything and had an Ensure at around 9 AM. I took a Zofran for the nausea and that helped a lot. Now I'm feeling better and may actually eat lunch (although again, not sure if I will pay for it or not!).
 
Allie, the only major tests I haven't had done yet are SBFT and MRE (MRI-enterography). I may have to start repeating tests too, as it's been over a year now since my colonoscopy. Not looking forward to prep again though, I hate drinking that stuff and I hate "peeing out my butt" and I hate that I get so dehydrated from it! The actual test is fine, but the prep just kills me. :(
 
The Mrs, have you considered asking your doctor for a short burst of pred? Just to get the flare under control? I know pred isn't for everyone and some feel that the side effects are not worth it, but my personal experience was that I felt flipping fantastic when I was on pred, and I was on it for just a short time so I didn't really experience any side effects apart from some minor insomnia (but I felt so great that I didn't really care about that!).
 
Cat I've been on pred for almost two years now. I'm currently sitting at 10 mg. I had gotten down to 6 then had to bump up to 20 for lung issues. It was probably the last taper that threw me into a tailspin. I am really trying to get off of it but I haven't had much luck yet. I'm leaving the option open to increase it again for our trip overseas in June but I'm hoping it settles down without that.
 

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