Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

If that's the case, then it might be cheaper to switch to Nexium as I believe it's prescription only. It comes in 40 mg capsules so I don't see why you couldn't be on 2 of those per day. My insurance is the opposite, they would rather pay for a generic than a name-brand so they prefer I take Prilosec instead of Nexium. I prefer generics too because it's the same thing but cheaper - too bad there seems to be no generic of Nexium (or Asacol... stupid special coating over otherwise cheap mesalamine, grumble grumble).
 
Hey everyone,
Just a quick check in....it's 1:30am, and I should be sleeping. :p
It's been a busy week....Wednesday Claire and I spent the morning together before I had to go to work, yesterday I was running around between labs and Dr's all day, and then today the power station in town blew up (I know....SCARY eh?!), and so we had no power all day. :p But, i wanted to fill you guys in on the new developments.

My Cortisol was normal, and my stool for PH/Reducing substances were also normal. They couldn't do the sodium/potassium because the stool was too solid? I guess you need D for that test...It was a formed pencil poo. :p I went to my GP just to go over all my tests for the last few weeks, and see if she had talked to my GI and we could develop a plan. We went through all my labs with a fine tooth comb, and she remained unsure about what we would be doing in regards to tx/dx. Then, funny enough after all the convo on here about it this week, she says "I'm assuming they've tested you for Celiac" Well...They have....I had a positive blood test, so they did the scope, and that was negative. Well, she about lost it.....saying that if you have a positive blood test, you have Celiac. No ifs, ands, or buts. So....She's running the TTA again, and has recommended I go gluten free in the meantime.....Not looking forward to it, I really do love Gluten, but, if she's fairly certain that's the prob (My Dad has celiac also), then I guess it's worth a try....So, that's where we're at. Still waiting for the Gastrin and ACTH results.
 
Hi everyone! As I mentioned, life has been very hectic lately with work & hubby's doctoral studies. I feel really guilty for being MIA on the forum, especially in the My Story forum. Luckily, I have been feeling pretty well lately (knock wood). To be honest, I am a little scared to even say it. I know that's silly, but I don't want to jinx it, especially with a business trip/vacation coming up next month. Crossing my fingers things don't change on me!


@Cat - It's so funny-I want to teach Chloe (my Cocker Spaniel) to walk on the treadmill. But it hasn't been going well. When I put her on the treadmill, she just freezes. How can I get her to walk? No video on youtube addresses this issue. And how are the enemas going? I didn't like the hydrocortisone enemas; I found they burned a bit, but only the first few minutes.

@Sunshine - I am sorry you've been feeling so crappy lately. My period really does a number on me, as well. And I feel like by time it's over, it's back again!

@Carrie - So, things really seem to be measuring up to an adrenal insufficiency, huh? What treatment is available for this (I apologize if you have already addressed this)?

@tamesis - I think it is more rare to have a false negative than a false positive with blood testing for Celiac; at least that's what I have read. However, I also read the only way to diagnose it with 100% certainty is through biopsy. Has your GI suggested an endoscopy? I assume not being she wants you to go gluten free already - that would alter any testing results. But like you, I LOVE bread, and would want to know for sure that I did in fact have Celiac. Granted, your GI seems pretty confident that you have it, so give the diet a go for a few weeks. If you see an improvement, I guess there's your answer. And if it really helps, I guess you won't miss bread all that much!

@PVail, Ever Hopeful, phear - Welcome to the club! I hope you get answers soon and don't have to be with us too long!
 
Hi Jill, glad to hear you're doing well! I hope it continues a long time! As for me, I'm actually doing hydrocortisone suppositories, not enemas. And the suppositories are going well so far (it's only been two days but so far so good). When I insert one, it feels like I have to poo because there's this thing in my rectum, but it seems to dissolve quickly and the feeling passes after a minute or two. And other than that, no discomfort with them whatsoever. If you didn't like doing the enemas, you might want to ask your doc about suppositories instead.

Tamesis, if I read that correctly - you're going GF now and then will undergo more testing for celiac in the near future? That's no good actually. When you go GF your body stops producing the antibodies that show up on celiac testing - so, going GF means celiac won't show up on any blood test or biopsy because it's not in your system any longer - so even if you are celiac, the test will be negative for celiac with no gluten in your system. I hope your doc meant that she's doing more testing now and after that you should try going GF? I'm also confused why your doc has latched onto the celiac thing when you had a positive ANA. Are they going to be looking further for other autoimmune illnesses such as Lupus/MCTD like what Allie has?
 
Jill, glad you are doing well! Hopefully it will stay that way!

Tamesis, thats interesting that you tested positive for celiac one way but not the other. The biopsy test is suppose to be much more accurate. Maybe celiac can be patchy and they didn't get the right spot? In any case I hope going gluten free helps you!

Cat, thats awesome that the nexium helps you more! :)
 
Hi Jill, from what I can determine they try to figure out why you have adrenal insufficiency and they do replacement therapy which tends to mean taking some version of cortisol and potentially other hormones.
 
Hey ladies,
Sorry for the short, quick, ramble last night. :p
Basically....I have had a positive blood test, then the gastroscopy with biopsy, which was negative. So my GI thinks I don't have Celiac...but my GP is convinced that the positive blood test means Celilac, regardless of what the biopsy says, and if gluten free works is willing to diagnose based on that. I got blood drawn yesterday for a repeat of the blood test, just because she can't find it anywhere. So, we're going based on the bloodwork, and how I respond. Looking at symptoms of Celiac, they all do fit....Aside from the ANA, which, she said some people can throw a positive for reasons other than autoimmune? And the Rheumatology/p-anca I guess can just indicate inflammation, which we already know I have, it's just not deep enough to be considered crohns....Make sense? We shall see! All I know is this is HARD!!! Although I already found a gluten free pizza place in town! :p (We had no power all day yesterday, so that was about my best food option which was high fat, to stick to my 100g fat diet!)
 
Finally feeling better from cold, sinus pain is better and things are alot looser up there thank goodness!

Tummy still not happy so still can't eat more than a slice of toast and a few biscuits a day. But been so long now I am beginning to feel faint and weak from hunger and it's not helping my headache. But what can I do, eating more would only have very bad consequences! Just got to persist until I can have more than a few bites :(

So when the Nurse tells me Wednesday "well done you have lost weight" I shall have to put her right lol since it will have been a full 7 days since can't eat.
 
So I'm in a bit of a pickle...

You know how my GP messed up my perscriptions, giving me Xanax instead of Xanaflex? Well, she messed up my tramadol too. I explained to her so many times that I take 1-3 a day for the pain to have a better quality of life. She said it was fine. Today I tried to refill my prescription, and it won't let me. It says it is too soon. Which means she only gave me 30 a month. I am freaking out! I only have 3 left. I sent in a complaint to the commander of the clinic, and I'm going into the clinic tomorrow to try and straighten this out. But I'm so afraid I won't get it fixed. UGH.
 
Allie, I am so sorry to hear that! Hopefully they get it sorted out pdq for you. I know how scary the prospect of no pain meds is my goodness! I need to do a medicine review Wednesday when I see the Nurse for another matter, got to explain why I haven't needed any pain relief for 6 months- what happened was I got a full box and then had a 3 month remission- and I too am anxious that she renews it for me. As that repeat has run out and I need a medical person to renew it.

Well I think today I am half recovered from my flare. But 5 days is long enough without eating and once the weakness hits it's time to use Immodium for a few days to get my system back on track which I have had to do in the past. So hopefully in the near future I will be back to normal eating.
 
I think I'm going to have to switch endocrinologists this year. I guess we'll see. He finally called me back about my test results and blew them off!!!!!!! he said that my 24h urine cortisol test was low but that itwouldn't tell if I was deficient, only if I had excess, and that my blood cortisol was normal, even though its a cycle and he has no idea if it was normal for that part of my cycle. WTF? AND he said yeah your ACTH is high, but I don't know why. WTF AGAIN, high acth and low cortisol -- it could be addisons. I can't believe he completely disregarded the urine testing and blew off the ACTH _because he doesn't know why it's high_.

i'm so upset. he's agreed to do challenge tests for me but he's just humoring me and told me not to be upset. yeah wtf e ver.
 
Last edited:
Carrie, that sucks, what a jerk! It certainly does sound to me like it could be Addison's. I would definitely get a second opinion from someone who can actually interpret test results rather than just say "I don't know." How awful! I hope you can get some better answers regarding your cortisol and ACTH.

Allie, that sucks too! I hope you get the meds situation worked out and don't have to suffer without pain meds. If worse comes to worse, could you go to the German ER and ask for tramadol there?

Star, that's awful that you haven't been able to eat. Do you guys have anything like Ensure or Boost supplement drinks over there? In a bad flare I sometimes can't eat solid food either and I survive on liquids like Ensure, Gatorade, tea and water. Get well and I hope you can eat more normally soon!

Tamesis, how's the gluten-free diet going? Have you noticed any improvement? Are you all done with the "paint bucket" test?

I'm doing quite well since I've been on the Nexium and the hydrocortisone suppositories. I definitely notice an improvement! I had a great workout in the gym today and I'm assuming that means the Nexium is working well. I managed to jog longer than I usually do (I usually jog 3 or 4 minutes to warm up - today I did 5 minutes and felt like I could have done even more!). And no belching or refluxing at all during my exercises. I did have a teeny bit of heartburn after the 5 minute jog but that went away after just a few seconds. Oh, and as I left the gym I dropped something on the floor, and when I bent over to pick it up I did feel acid come up my throat a bit then, and had a couple of acidy burps, but I otherwise felt great and no reflux besides that. Oh, and on Friday I ate Mexican food and felt okay the next day! I had a quesadilla with veggies, including onions!! It was so delicious. I could tell that my body was really trying to reflux it up after eating it, but the meds are clearly working because I felt on the verge of a reflux episode all evening but it never actually manifested, and the next day I felt fine. Oh, I'm so excited! I looooove Mexican food but have avoided it since I became ill. It was soooo yummy and I'm still rather amazed that my tummy & guts didn't punish me for it. I'm not going to push my luck too far, and will still have Mexican food only as a rare ocassional treat, but it's nice to know I can eat something so yummy and so dangerous and not pay for it. :D
 
Thanks Cat. I hope so too. It sounds like he will order two tests, the ACTH challenge one and the insulin tolerance test. I said to him, how do you know that my blood cortisol level is normal, when you don't even know if my cortisol cycle is normal? He conceded this was true. At least he is humoring me by ordering the tests, right?

I'm glad you're doing well! :)
 
I am glad he ordered more tests for you - let's hope he knows how to read the results of this round of testing! The ACTH test, which one are you doing? Is it the one where they check your baseline cortisol, then inject you with ACTH, then periodically test your blood to see where your cortisol is at? I had that one and I believe that is considered the "gold standard" for diagnosing Addison's. My results came back on the low end of normal, but enough within the normal range that it was determined that I do not have Addison's. Still, it was a worthwhile test to have, at least I got to rule out Addison's and focus more on IBD. And it's an easy test - no prep, just no food/water starting at midnight, get to the hospital first thing in the morning and sit there for a few hours & watch TV/read while your blood is periodically drawn, and that's it. Anyway, I'm rambling. Good luck and I hope your doctor can figure things out from this round of testing!
 
Eating is going well I am so pleased, have had quite alot tonight and my stomach is acting like a bottomless pit lol. Haven't taken Immodium since this morning, I don't need any tonight but may take some again tomorrow morning and fingers crossed I will be out of it after that.

We do have the supplement drinks but don't know any shops that sell them, although I do have one place to look. The trouble is if I buy online to store for when I have a flare, they may go out of date and I can't afford to waste money like that. Or I am in a flare and I have to wait for them to arrive. It is tricky!

And even if I had Mum get them (if the shop I have in mind sells them) for me when a flare occurs, she was sick last week too and off work for 3 days and couldn't have gone out for me.
 
@Carrie, it sounds like doc is reconsidering, but still with a track record like that I would attempt a second opinion.

@Cat sounds like your new regiment is working out for you. That is great!

@Star, glad to hear you are on the mend too!
 
Has anybody heard from Sunshine today? I know she had that appointment at a new hospital (Shands?). I am still at work and can't access facebook from here so I don't know if she's posted anything about how it went. Sunshine, thinking of you and hoping it was a productive appointment!

Star, I think the supplement drinks keep for quite awhile. I don't have one in front of me but I will check the expiration date of my Ensure stash when I get home. I do stockpile foods in case of a flare. I have an 8-pack of Gatorade, several big bottles of Pedialyte, lots of tea and white rice and mac & cheese stockpiled. I always keep Ensure on hand as I have one each morning for breakfast. My stomach has always been really iffy in the mornings, I can remember back to being maybe about 5 years old and being nauseous in the mornings. So I can't do solid food until about lunchtime, but I've found that I can stomach something like Ensure in the mornings. So I am always stocked up on the stuff. The chocolate flavor is quite yummy! I don't do well with the vanilla though, I'm not sure if it's some ingredient in the flavoring or what, but vanilla Ensure always causes d. The chocolate flavor doesn't. I don't know why! Anyway, I'm really rambling now, but when I get home I'll look at the expiration dates on my Ensure. I have a feeling they last quite awhile though.
 
Carrie, that's a good one then! It'll either confirm Addison's or rule it out. (Or at least it *should* confirm/rule out, unless your doc doesn't know how to interpret these results either...)
 
Wow, I hope she's okay! Wasn't she admitted, the last time she went to a hospital? Sunshine, hope all is well and that they're just being very thorough!
 
This is useless, how unhelpful some docs can be. Whatever happened to patient care and wellbeing eh'.

I've not been diagnosed but now i have some idea as to what the issue with my body is so i'm doing all i can to help myself. The stress and incompetence of the docs not doing their part more swiftly adds to the physical pain, can't the see that?

But i feel much better up here *points to head* coz i've some idea and reading through this forum i feel even more grateful. Maan things really could've been soo much worse and i'm the kind of person whose emotional and mental wellbeing is of upmost importance, and that's also my most precious/sensitive and at times weakest point. I can cope with physical pain without a doubt thank God but mental/emotional unfitness is another thing. Which is why i found myself feeling even worse physically since it all started a few weeks ago because i didn't know what was causing it and i kept on getting different unconfirmed answers from the docs which left me with no trust in them.

I'm not officially diagnosed with Crohn's but the doc suggested it could be that. Plus, unlike some members, i've not got a full record of my family medical history (coz most are abroad, only official thing is Diabetes) so i don't know if it's genetic.

But hey, i really think we've got to start smiling more and counselling ourselves and take care of our emotional wellbeing. Forget the condition for a moment and focus on your thoughts and why you're feeling the way you are.

Really, people, honestly, with all care and love for our wellbeing we need to care for ourselves and do what we can. It's amazing coz we've all got different tolerance levels so let's work use our strengths.

I'm in such a grateful mood, really, i've just cracked a smile as well. An even my mum said 'aah Muna i know what you were worried about, you thought it was ur appendix' which is true. Appendicitis was a huge concern for me. No one else is gonna take care of us, so why not start caring for ourselves. :)

Start with accepting your emotions and questioning your thoughts
 
Welcome MunMun to the club and i'm sorry you had to join! Feel free to ask any questions/vent about anything, we are all in the same place as you right now and we know how you feel, and nothing is ever tmi here also !

Sunshine has posted that her GI is a breath of fresh air on Facebook :)
 
Hey everyone, just a quick pop in....Things are crazy here, still collecting in the paint can, Claire has Pertussus, and7 busy trying to familiarize myself with GF. Argh. Got my most recent tests back though...Gastrin 3, ACTH 30, 8am Cortisol 293....Not really understanding any of these ones though! :p Seems like they're in normal range?

I'll try to check in later, Claire isn't giving me much time alone these days.
 
Thanks everyone. I am really worried at this point. I have had the possibility of running out of meds before but not like this. I'm going over there as soon as this tramadol kicks in (seems to be taking a long time...), and I am NOT leaving until I talk to my GP if it gets to that point. She would not let me run out of pain meds, I know it, but she didn't do the prescription right. BTW, the pharmacy is in the same building as the clinic, which makes it kind of conveinant.

Cat, I cannot get pain meds from a german ER. They don't handle meds or prescriptions the way we do. For one they don't use the same pain meds as we do, and second they don't give prescriptions per say...I don't know the entire process, I just try and avoid it because it seems really complicated. When I was in the hospital I was on IV pain meds 24/7, but they didn't have any side effects like the pain meds we use. The German doctor who handled my case said the med wasn't even available in the states. So I have to fix it if I want to avoid going through nasty withdrawal symptoms, not to mention raw pain. >.< I'm not addicted, but my body is dependant. So they would be putting me in a lot of danger if they don't refill this today.

So I am in the musical, and last night we had a typical rehearsal, dancing for 2.5 hours. Today I am so sore it feels like I ran a marathon. >.< I was on one tramadol during the practice, which I had to really think about taking before I did, but I was still in a whole bunch of pain on stage. My rhuemy in the states told me no excercise except for stretching after a shower or bath, and I think I know why now. :( This is just something that I don't want to give up. I don't have a job, my husband wont be here usually this year...I need an outlet. Practice is the only time I am with friends, or other people for that matter. So I don't know whether I should quit bc of my health or stick it out. Oy.

MunMun, welcome to the club. Sorry you had to join us. :( Hopefully you will be on the road to figuring out whats wrong soon.

I hope everyone has a great day! If anyone could give some happy thoughts towards me while I try and figure this out this afternoon that would be great. :)
 
Allie I hope you get or got your tramadol sorted out I can't imagine how hard it would be without pain meds I don't take them every day but I suffer from migraines and wedged disks in my spine so I know how hard it can be to try and function without pain meds..

Cat im glad you are able to start eating again.

Sunshine. I hope your doing well at the gi...

Everyone else I hope your doing well.

Im actually trying but can't sleep as I've managed to get some casual work tomorrow. I have been off work for over 2 years now and it's a bit weird thinking I've got to work again lol I hope it turns into something permanent!
 
Good luck with the new job phear!

I was able to get the tramadol sorted out, thank goodness. It took an hour to get fixed, but in the end she easily just changed my perscription from 30 to 90. She thought I had overused my prescription at first, and called me back to her office to lecture me. >.< When I showed her the bottle from my rheumy in the states she stopped midsentence and fixed it. Oy! So glad its fixed though. I'm taking the rest of the day to chill...practice and this stress has made my pain so bad!
 
No, because they don't carry Xanaflex, and the muscle relaxers they have I have tried in the past and they didn't work. I am just using unisom now.
 
Allie, so glad to hear you got your meds but it sounds like a stressful process you had to go through in order to get them! I can't believe your doctor called you back to her office just to lecture you. At least she fixed things, but how awful to get yelled at just for trying to get something corrected!

MunMun, welcome to the club! As for genetics being involved, there is some evidence that IBD (Crohn's & colitis) is genetic. They're still trying to work out which genes are involved and what role each gene plays, etc. Some of us here have family history of IBD and others don't. I had a great-grandfather who had Ulcerative Colitis, but he's long dead and so I'm the only living person in my family with (probable) IBD. I guess that makes me the black sheep of the family? ;)

How's everyone else doing today? I'm okay although a bit crampy, but certainly can't complain. I just found out today that I'm going on an overnight business trip next week and I've been making a packing list already. There is SO much to pack when you've got gut issues! Safe snacks and Ensure, spare undies just in case, all my meds and supplements and suppositories and creams, heating pad, moist wipes, the list goes on! Not to mention the regular stuff like clothes and toiletries. I'm going to have to bring a huge suitcase to hold all my stuff for one night away from home. I am sure my co-workers already think I'm a bit crazy but after this they might think I'm really crazy, ha ha. At least I get my own hotel room and don't have to share, so if I make gross noises in the bathroom or spend a lot of time in there, I won't be weirding anyone out.

Oh, speaking of Ensure - Star, I looked at the expiration date on the bottle I drank this morning, and it was March 2013. So it looks like they are shelf-stable for a little over a year. Just in case you want to be a crazy hoarder like me and stock up for future flares. Ha ha :p
 
Thanks guys/girls. I've got GP appointment hopefully Monday. My Wednesday class i couldn't go to 2 weeks ago, last Weds i managed to push myself and well it looks like i won't be going to tomorrows one. Can't hack the walking to diff stations, then the house an back home. I feel tooo vulnerable to be left outside alone so i no longer go by myself. Thursday i'll be going to a meeting but with a friend so i feel safer. Even going go Friday prayer imma have to reconsider but i didn't go last Friday so we see. Also, i've stopped my memorisation since it all began but due to restart my class again hopefully sunday.

Good newss, MunMun went toilet today, hooray lol. Gosh i'd never thought i'd be so happy about a BM lol but it's some relief after not going for 2 full days.

I had chocolate today and that hurt my tummy, also looks like chips hurts too. An today i felt like my organs were twisting everytime i moved, weird one that is.

I know something that should allow us all to change our perspective to a better and more productive light. Will post something tomorrow hopefully
 
Alllie...whoa! I'd be pretty pissed with my Dr. if he lectured me! Do they not get the fact that you are in PAIN constantly? Sometimes I wish people could spend just a few hours in our bodies to get a taste of the magnitude of what we go through on a daily basis!

Cat - glad you're doing reasonably well :)

Sunshine...my thoughts are with you. I am hopeful that this GI really did listen to you! Maybe some tests in your near future? Or better yet...some RESULTS in your near future.

MunMun...hang in there. My saying is that I am ever hopeful that tomorrow will be a better day.

I've been up since 2am...was woken up again with crazy pressure/pain behind my left eye. Was on the fence once again as to whether or not I should wake hubby & have him take me to ER. I decided not...again. They wouldn't do anything anyways, except make me wait 7 hrs to be seen. Who needs that?
The good thing is that I have an appt Feb.8 with a neurologist. Maybe he can give me some insight as to what the heck is causing this eye pressure and sore eyes. I'm going to assume it's all linked with my GI issues. It's all interconnected.
Gotta go have bloodwork done tomorrow for my Ig and I don't even know what else my GI's checking. Guess i'll be learning more about all that stuff very soon.
I'm keeping my fingers crossed for a good night's sleep tonight. My sleeping pattern's all messed up. Waking because of pain seems to be the recurring theme...
 
Ever. Is the pressure only behind 1 eye? Or both. I don't want to freak you out but my mum a few months ago a brain tumor removed. Her symptoms were pressure behind 1 eye, vagueness, dizzy, nausea, vomiting, headaches etc im sure its nothing like that just make sure you get to the doc soon and tell them all symptoms that you have and get them to figure it out. I know it sucks going to the doc all the time when you have things wrong but it's better than being like my mum and just dealing with it take care, I really hope I have not scared you just want you to make sure you look after yourself!
 
Cat-a-Tonic said:
Has anybody heard from Sunshine today? I know she had that appointment at a new hospital (Shands?). I am still at work and can't access facebook from here so I don't know if she's posted anything about how it went. Sunshine, thinking of you and hoping it was a productive appointment!
Click to expand...


Sunshine had 20 vials of blood taken at hospital yesterday with 3 needles, one in each elbow inner part, and one on the wrist! Ouch! She has a tumblr page, if you can access that.

She says she was in the room for two hours with the doctor who examined her and looked through her whole history.

She has a weird test where she had to drink some liquids which shows up her veins or something - not really sure.

She seems happy about it all and she really likes her new doctor and feels cared for there. Umm, what else? Oh yeah, the doctor has said that all the pointers are going towards it being IBD, but now they just need to figure out which IBD it is.

I think that was all.

Here is her tumblr - http://ihaveabadtummy.tumblr.com/

She has being feeling quite poorly recently, but the hopsital went well for her.


This is here post on how the hospital went - http://ihaveabadtummy.tumblr.com/post/16800727543/shands-hospital-gi-appointment
 
Thanks Phear for the heads up. For the most part the pressure is only behind my left eye. But both my eyes do tend to get sore. I have an appointment next week with the neurologist, so i'll be sure to mention my history of migraines, and my current symptoms too. Then, i'll deal with whatever he throws my way! :)
Sinus like symptoms today...seems like that always comes with my monthly 'friend'. Very weird; only reason I can think that happens is because my immune system's already depleated & when my friend comes that makes it worse. Oh well, i'll just keep up with the sudafed & all the other supplements I constantly take in the effort of trying to get healthy! At least I don't have to work today. Yesterday was a killer! Working 8.5 hrs after only a few hrs sleep. But...today is a better day than yesterday. I am thankful.

Tasha - thanks for the update on Sunshine.

Sunshine - SO glad that this GI is working WITH you!

Cat- I didn't thank you yet for your suggestions about the ginger. So thanks!:thumleft:

Be well everyone! Please take care of you!
 
ever- a lot of times i get sinus stuff with pms/period, too. i read somewhere that progesterone is an immune suppressor. shoots up when you get pregnant so you don't reject the baby.

tasha- thanks for the update. i'm glad she's getting help and someone's actually listening. that seems to be the hardest thing.

yuck. i am so sick. head cold. stupid remicade and 3 year old in preschool not a good combination. been home all day yesterday and today watching disney junior with my kid.

hope y'all don't get the funk!
 
Hey everyone!
Sorry I haven't posted after my hospital visit with Shands, i was just so busy with blood tests and not feeling well, you know running to the bathroom a million times.. :(

My doctor really understood what was happening! She spent 2 hours literally reading EVERY LITTLE THING in every test and all the pathology results as well. She even found one of my pathology results from my colonoscopy back in June of 2011 (with the doctor that yelled at me, remember?) and she said that in the results of pathology it says something about bumps in the terminal ileum and how that represents a marker towards Crohn's. So, either my doctor back then didn't want to admit that there was something going on, or just thought it was too complicated to get into... but he had yelled at me back then and that's rude because there was something sticking out like thorn!
My shands doctor said that yes there are things that look like you're normal.. but there are a lot of scattered results that say that you have Inflammatory Bowel Disease. She said with MOST patients doctors look at the symptoms and test results for crohn's and colitis and just say okay no you don't match up "EXACTLY" with that so you're fine you do'nt have it.. but she said there used to be only 7 marker blood tests but now there is like 18 I think, so she said when a patient does have positive results for IBD, they need to be taken seriously because there are only certain things that show up that are specifically only for IBD, and all my results that i've ever had are things that only IBD patients would have.
She even looked at these bumps near my rectum that I've had for 2 YEARS and 3 doctors have checked them out before and said that they were nothing to worry about... she immediately wanted to look at them and said they are skin tags and those are only in patients with IBD usually.
She ordered 20 vials of blood for like 5 pages of blood testings that measures genetics and all kinds of stuff. She thinks that maybe my grandpa who had Colon Cancer might have had IBD before he was diagnosed with cancer and maybe didn't know it.
But anyway she's checking a lot of stuff with blood work that no one has ever tested for, and she even is going to get the colonoscopy biopsies from the mayo clinic that they did and have them stained to see the Mast cells? because she said I bet your mast cells are very high but everything came back normal. So she's doing that too, and she wants me to get a special CT scan done, called a CT Enterography I think, that I drink gross stuff (of course because it's never yummy) and then they put special dye in my veins and it shows where all the white blood cells are in your small intestine, so she'll be able to see my worst areas and where all inflammation is. (supposedly...lol that's what is SUPPOSED to happen but we'll see what my body shows lol...)
She really took the time to educated me on what most doctors check and what doctors SHOULD check, and she seemed very confident that whatever I have is definitely IBD but she has to figure out exactly which type it is, because she said there's like 40 different types that fall in between crohn's and ulcerative colitis. And hopefully these tests show her good results and she can diagnose me and get me on treatment. She already mentioned that I would probably be headed in the direction of suppositories like Humira and such, so she said just to check out different treatment options and educated myself on all of them for when the day comes when I'll be getting treatment.
I'll be seeing her in a month and by then all of my tests would have been done and she would have results and tell me more tests I need to get done, or that she knows what it is. Feeling happy that my doctor is so thorough! When i got my blood work done the lady was like who is your doctor and I told her, and she said OH, YES, that explains why you're having so many tests done! I was like... is that a bad thing? She's like no, usually she is VERY thorough in her work to get the right diagnosis. I was like wow this is a blessing.
So i'm feeling very hopeful, but again don't want to make my hopes too high, because we all know how that is. But i'm just thankful to have a doctor that is thinking outside the box a little bit and getting tests that i've never had done. She was so confused why the mayo clinic didn't check the blood work that she is checking for. but at least she is!
I'm very sick though, very very. I'm in a flare I would say. I've been going to the bathroom a lot, and actually when I was waiting for the doctor I went to the bathroom 3 times in less than an hour! It was crazy.
So, i'm trying to get school work done but it's just so hard to do when your sick but i'm gonna have to really try because it's gotta get done.
Anyway, I hope you are all okay, sorry for the HUGE update.
<3
 
Sunshine, so glad to hear this and I hope this is finally the doctor who can get you some answers! She really sounds like she knows her stuff. And how frustrating to know that you've had some abnormal test results after all but it was never mentioned to you until now! At least it sounds like you're FINALLY getting somewhere. Hopefully you get some answers and relief very soon! Big hugs to you!

As for me, well, I thought I was doing well. I feel fine. But today I joined the "I poo'ed blood" club. :( I've had blood in the toilet and on the TP before, but it was always separate from the poo and had always seemed to come from a fissure or maybe a hemmie. Today, I had a few normal poos, and then just before hitting the gym I had a poo and there was blood in the poo itself. It wasn't on top of the poo, it was mixed in with it, like a layer of blood through the middle of a poo. It was bright red so I know that's not too worrisome, or at least not as worrisome as dark/black blood. I'm REALLY hoping it's just something like a result of the suppositories healing the hemmies, like maybe I had an internal hemmie that's healing but bled a bit and the blood and poo mixed together? There wasn't a lot of it. I'm trying not to freak out. I will let my GI know about it - I'm supposed to call him in a few days anyway so I'm just going to keep an eye on things for now and then will call my doc and see what he has to say. I'm wondering if a flexi-sig would be warranted as I haven't had this happen before. My one and only c-scope was in April 2010 and nobody's looked inside my bottom since then. What do you guys think? Probably nothing to be too concerned about but to keep an eye on just in case, right?

Ever, I get a lot of sinus problems too. I broke my nose when I was 11 and it was never set correctly so it healed weird, and I've had gradually worsening sinus issues ever since. I'm not sure if it's related to my guts or not. I'm wondering if what you have is eye inflammation - that can be a symptom of Crohn's. I googled "uveitis and crohn's" and this is what I found - take a look at this link and see if this sounds like what you've got going on.
http://www.umm.edu/altmed/articles/uveitis-000171.htm

I hope everyone else is doing okay. And that you're all having some of this good weather! It's been crazy warm here for January/February. It was in the mid 50s (fahrenheit) yesterday and most of our snow melted! That's unheard of for winter in Wisconsin! It's in the mid 40s today which is still way warmer than usual for this time of year and the little remaining snow is still melting. It feels like springtime! :)
 
So two days I had a BM with lots of blood, like menstrual cycle type stuff. I am not too excited about that. I am 4 days away from being on a plane to Hawaii. I can't get back in with my GI before then :( The pain is getting so much worse too! I considered going to the hospital but really don't want to get stuck there...lol I would rather be stuck in Hawaii! At least my husband and kid could enjoy the beach :p

I finally convinced my insurance to let me get a second opinion! I made my appointment with a doc who is on CCFA and is affiliated with the University here. I am hopeful that finally I will get test that I haven't ever recieved and put an end to this mess or at least come up with an alternative to the crappy expensive medicine they want to prescribe me...When I have to sign a waiver because one of the sideffects is death, I think I will pass!

@Allie glad to hear that you are finally getting the attention you need. I say keep going but take it easy, if nothing else it is for your social well being which is a huge part of your health!

@Mun Welcome! Its a great group to be a part of :)

@Flower feel better soon!
 
@Sunshine - I am so sorry you are so unwell! We've been thinking about you. But it's wonderful that your doctor is determined to get you well. I really hope you get answers soon!

@Cat - I would certainly keep an eye on that blood. But, hopefully, it's just coming from a hemmie. Perhaps, the suppository is causing some irritation? I have done lots of suppositories, and they seemed to hurt me more than helping me.
 
Thanks Jill, I'm hoping that's the case. Although the suppositories seem to be helping my external hemmie and irritation, maybe they're irritating something in my rectum and that's causing the bleeding. I haven't done suppositories up until I started these last week so it does seem to be the most likely suspect. Oh, and of course I poo'ed the blood just before hitting the gym, so I didn't have a camera with me or I would have taken a lovely photo to show my GI. I'm hoping it's either a fluke or the suppositories - I'm feeling fine other than the blood (and the slight nervousness that follows when you poo blood!). I was able to do a full workout at the gym, and in fact to combat the nervousness I made myself work out harder than usual. I increased a the weights on some of the machines - that definitely took my mind off of blood for a bit!

Space, I hope you're still able to enjoy your vacation and that your health cooperates enough for you to be able to have fun and eat and do some fun activities. The last vacation I took was almost a year ago, before I was fully in remission. I was on Entocort at the time but was still having about 2 bad days per week. Oh, and the vacation was a weeklong trip with my parents and we did a lot of driving, and we were in Arizona and the heat tends to cramp up my guts terribly. So it was a big risk going on that trip! In spite of all that, yes I did have some bad days, but overall I enjoyed myself and was glad I went. I hope you enjoy yourself too and have mostly good days (or all good days!).

Speaking of vacations, hubby and I have been pondering about maybe going to Orlando for my birthday in November. I'm still not sure if we'll go, we'll have to save up some money for the trip and also my health will have to be okay enough for me to travel (hopefully I'll still be in remission and not bleeding out my backside in Nov). Still, I would really like to go, and if we do - any Florida folks who might want to meet up in/around Orlando for dinner or something at some point?
 
Crap. Literally. I just poo'ed a bloody poo, again. Not good! I did think of something, though. I have been trying to eat healthier and just yesterday I tried greek yogurt for the first time. I'm lactose intolerant but can do some dairy (can do butter & ice cream, can't do milk or cheese) so I tried it as an experiment to see how my body would handle it. It went down okay, but maybe it's the culprit behind the blood? Has anyone else had a problem food that makes you bleed?
 
@Cat I make my own yogurt per the SCD diet...It's lactose free...Might be worth a try! I am originally from florida! I would meet you guys if I still lived there :)
 
Thanks Space, I might look into that! Is there like, a starter kit for making your own yogurt? I am a terrible cook and am fairly clueless in the kitchen so a kit would be good! Or some type of very simple instructions?
 
cat - blood in poo isn't good. call the doctor. however, i will say that when all my stuff was first starting, i was on a lot of antifungals, probiotics and yogurt! and they tore me up something awful, made me bleed. soon as i stopped i was fine. my body just can't handle foreign bacteria, whether it's supposed to be good for you or not. i still can't do yogurt.
 
Sunshine, I am thrilled you have a very helpful Dr, you have been through so much in terms of getting a dx and thinking it's sorted then having it taken away.

Space- great news about the second opinion!

Cat- sorry to hear about the blood, it's never nice when that happens, as much as you try and explain the probable innocent cause to yourself.

I had a meal for the first time in 8 days tonight and it made me and my belly very happy! Couldn't eat for 5 days, then I lived on small amounts of potato chips, toast and cheese bread for 3. So that meal made me super satisfied!!

Got my MRA tomorrow, MRI's are not my favourite thing to have done but they are certainly not the worst.

A bit annoyed as thought I would be getting a life there. I joined the Hospitals lift share network and for the first time ever there was a match for my journey! A lady my age living less than 5 mins away going at a time to suit me. But she hasn't replied to my messages :( Why sign-up and offer lifts if you're not going to respond to messages grr. I was perfectly content to get the bus until I saw a possible lift, now I am a bit grumpy getting the bus when there was a lift available lol, I really don't have money for a taxi and I usually try and use the bus to save money when the appointment is in the afternoon (mornings have to be done by taxi, need as much time at home to get my bowels settled as possible). Also, it is freezing cold here right now (snow due) and a lift would have been ideal due to that and I am feeling rough still from that nasty cold. Ah well, I will get the bus and deal with it despite the problems as I always do and have to!

EDIT: Sent the lift-sharer another polite message, it's a double bus journey to the Hospital so i'll need to hear from her an hour before she is due to leave so i can get the bus in time. Not holding out much hope though!
 
Last edited:
I dunno Cat...I hate to say it , but I doubt that it was the Greek yogurt that's causing the bloody poo. Wouldn't you tend to get bloody poops with cheese and milk too if that was the case?

Do those suppositories have any side effects? Kind of ironic if they are used to treat hemmies & yet may be the cause of blood in the poop?

So many contraindications with some meds...used to treat crohns, but may cause D!? Um hello?...wasn't that part of the whole problem in the first place? (speaking about one med that i looked into when my dr wanted me to take it)

Space...making your own yogurt! Cool. I've seen the kits in one of the health stores I frequent. Maybe I should take a closer look too...
 
Great news Sunshine!! Can I ask a favor for us here? ... When your results are in, can you please request copies and tell us the test names that your doctor ordered? I hope your treatment starts soon!

Cat - feel better!!
 
Thank you so much everyone, i'll definitely be keeping you all in touch with what the tests find and such of course! like always :)

Dannysmom, I will definitely be sure to tell you guys what they tested for in the blood work when i get it back, that way maybe you guys can tell your doctors and see if they will order it for you. We all have to help each other! :)

Cat, I don't like that you are getting so much blood in your poo :( this makes me worry.... :( I hope it still isn't happening tomorrow.
 
That's awesome news sunshine I hope they find what ever it is so they can start treating you for it.
Cat. I hope the bleeding stops.
 
Hi all, my 13 yr old son had an upper and lower GI and the only thing that showed during the test was that he had ulcers in his stomach? The biopsy results were negative for Celiac's, Crohn's, UC and every other GI issue.

This year it started with a stomach virus? We thought that it might be Celiac's because he is allergic to Wheat and Gluten but the blood test came back neg. Then went to a sinus infection and then to the flu (did test positive for flu B) which we all had. His ped ran tons of blood test and the only thing that has come back abnormal has been his thyroid levels that the Endo said was either do to illness induced or steroid induced (steroid were used along with antibiotics to try and get rid of the sinus infection)? She did find that his Vitamin D level was low 24 (normal is 30 to 74) and put him on Rx Vitamin D. After he finally go over all of that and the joint pain never went away after the flu the ped started thinking that he might have Crohn's. Since he has had a rash on his face, abdominal pain, bloody stool, low grade fever and the joint pain. When we met with the gastro his first thought was Crohn's too.

He doesn't ever get sick until school starts and then he winds up with whatever is going around.

Thanks ~ BsMom
 
Well I had my MRA today. What. A. Nightmare.

And I don't use that term lightly!!

Scan took less than 15 minutes, but thanks to my rubbish veins they just could not get the cannula in. They had to call a Dr over. 12 yes that's right 12 tries and it went in. I was stuck on my hands, wrists, arms and right foot before it finally went into the left foot. So sore all over right now and bruising already. It went in on the last attempt, I was told if it didn't work I would have to go to a Clinic to get it put in and then a new appointment for scan.

Never want to go though that again, I was in that room for an hour! :ywow:

I have been through some nasty medical stuff, I think this one makes my top 3!

Of course if I thought this would help in anyway with a diagnosis I would have coped better but it will be normal like everything else. And I doubt I will get a PET scan anyway.
 
Thanks everyone for your concern - fortunately, I haven't had any more bleeding since those two bloody poos yesterday afternoon. I had a few more poos yesterday evening, which were normal, and all of my poos today have been normal too, no more blood. And I feel fine. So hopefully it was just a fluke/hemmie/caused by greek yogurt/whatever. At any rate, I won't be eating greek yogurt again just in case it was the culprit! (It wasn't that good anyway, and I know I can digest soy yogurt with no issues and no bleeding, so I'll be going back to that.)

BsMom, welcome. You mentioned your son has a gluten allergy, and that he tested negative for celiac. I'm assuming that because of the allergy, he hadn't been eating any gluten prior to being tested for celiac? If there's no gluten in the system, the test will come back negative for celiac, even if he does have celiac. The only way to get a "true" result unfortunately is to have him eat gluten (ideally for at least a few weeks) before being tested - that way, if he does indeed have celiac, his body will produce the antibodies in response to the gluten. No gluten means no antibodies are being produced and everything will look normal, even on biopsy, even if he really does have celiac.

Another part of your message jumped out at me - you mentioned your son has a face rash. Have you had him checked out for Lupus? Lupus can sometimes cause a face rash (google it to see what it looks like), and Lupus can sometimes mimic Crohn's-like symptoms. There's at least one member of the Undiagnosed Club who appears to have Lupus which was mimicking Crohn's symptoms so hopefully she'll see this and will share more info with you. Has your son has his ANA tested?

Star, that sounds awful! You poor thing, being pricked like a pincushion. :( And how rude that they were going to make you have to re-schedule the scan, like it's somehow your fault that they can't get a needle in. Nice. I hope all that pain and trouble is worth it and that this test reveals SOMETHING worthwhile! Sheesh, even a supposedly easy test is never really that easy, is it? I had one MRI, of my liver, and that one didn't go so smoothly either - I had a bad reaction to the contrast dye they injected and it was a very unpleasant experience. So I know how it goes, tests like that should be so straightforward and easy but more often than not it's painful and awful and complicated! I hope the bruises and pricks feel better soon.
 
Cat-a-Tonic said:
Thanks everyone for your concern - fortunately, I haven't had any more bleeding since those two bloody poos yesterday afternoon. I had a few more poos yesterday evening, which were normal, and all of my poos today have been normal too, no more blood. And I feel fine. So hopefully it was just a fluke/hemmie/caused by greek yogurt/whatever. At any rate, I won't be eating greek yogurt again just in case it was the culprit! (It wasn't that good anyway, and I know I can digest soy yogurt with no issues and no bleeding, so I'll be going back to that.)

BsMom, welcome. You mentioned your son has a gluten allergy, and that he tested negative for celiac. I'm assuming that because of the allergy, he hadn't been eating any gluten prior to being tested for celiac? If there's no gluten in the system, the test will come back negative for celiac, even if he does have celiac. The only way to get a "true" result unfortunately is to have him eat gluten (ideally for at least a few weeks) before being tested - that way, if he does indeed have celiac, his body will produce the antibodies in response to the gluten. No gluten means no antibodies are being produced and everything will look normal, even on biopsy, even if he really does have celiac.

Another part of your message jumped out at me - you mentioned your son has a face rash. Have you had him checked out for Lupus? Lupus can sometimes cause a face rash (google it to see what it looks like), and Lupus can sometimes mimic Crohn's-like symptoms. There's at least one member of the Undiagnosed Club who appears to have Lupus which was mimicking Crohn's symptoms so hopefully she'll see this and will share more info with you. Has your son has his ANA tested?

Star, that sounds awful! You poor thing, being pricked like a pincushion. :( And how rude that they were going to make you have to re-schedule the scan, like it's somehow your fault that they can't get a needle in. Nice. I hope all that pain and trouble is worth it and that this test reveals SOMETHING worthwhile! Sheesh, even a supposedly easy test is never really that easy, is it? I had one MRI, of my liver, and that one didn't go so smoothly either - I had a bad reaction to the contrast dye they injected and it was a very unpleasant experience. So I know how it goes, tests like that should be so straightforward and easy but more often than not it's painful and awful and complicated! I hope the bruises and pricks feel better soon.
Click to expand...

He had not been completely gluten free prior to the testing. Then once I knew that we were going to do the Celiac's test, I had him gluten binge for days. He got to eat his favorite Wheat Thins, Triscuit's, homemade chicken fried steak, toast and I forget what else. Oh, one of his other favs French Bread. After all of that his poor tummy really hurt and wound up spending days on the potty :poo: even before he had to do the GI prep.

I will check out the Lupus rash and see if it looks like that. He has had an ANA done which came back negative.
 
@EverHopeful...no need for a kit! All you need is some milk, one thing of already prepared yogurt. Heat the milk over low/medium until it boils. Remove from heat, cover it and let it cool to room temperature. Then whisk in the thing of yogurt (this gives it the live cultures but you can use yogurt starter too). Put the mixture in a tupperware, but the tupperware in the oven with the oven light on and the door closed. Do not disturb for 24 hours (if you can handle lactose as short as 6 or 8 hours will work but 24 hours no more lactose). Take out and put in the fridge until you are ready to consume. :)
 
@BSMom...good luck with the diagnosis!

@Sunshine I am keeping my fingers crossed for you.

@Cat I am glad to hear that you are feeling better :)

@Star I hope all that suffering was for some good data!
 
bsmom- i was going to suggest same as cat, maybe lupus? if ana was neg i'm not so sure. although all his symptoms can be those of many autoimmune disorders. my crohn's first made itself known during a round of antibiotics, and i also tested negative for crohn's twice! they can miss it during biopsy. but i sincerely hope your son doesn't have it. there are lots of disorders that can also affect your bowels.

cat- glad to hear you're clear.

star- sorry to hear about you're sticking. apparently i have good veins. i can only imagine what this process would have been like if i hadn't. hugs to you and your veins.

well, the i'm over the hump of the cold. still have a cough, though, and now my back hurts from coughing so much. :p
 
Thanks everyone! I am very refreshed after a 2 hour nap. I knew going to bed so early would mean being wide awake in a couple of hours but I had to go to sleep.

Cat, they were really nice and they weren't being rude. There was literally nowhere else to try and get the cannula in and while I was doing my best to remain relaxed they could tell I was getting upset and fed-up. To add insult to injury most of the needle stick's resulted in quite alot of bleeding afterwards lol. And they weren't convinced the vein in my left foot where it went in was actually a vein, they thought it was a skin tag, I am really glad the Dr tried it anyway.

The sooner I forget the whole experience the better! Was rather an ordeal.

Of course though this has really put me off tests in the future if I decide to go to another Hospital. If I need anything else (which isn't likely right now) at local I will request to attend to have a cannula put in a day or so prior to any testing, but of course this wouldn't be possible at the other Hospital. Going through that is not easy for me, is hard for the staff and the other patients waiting to be seen (I have been in their shoes and know it's difficult).

I've always had difficult veins but this is the worst it has ever been and I am worried history will repeat itself! If only there was a pill I could pop to make my veins inflate lol.

Aside from that, still quite rough from this cold, can't seem to shake it off it is a nasty bug. Also been getting more nausea and abdo pain (which had been very good/ settled). But I guess when a germ passes through an already delicately balanced area, I am going to have things flare up again. D has been quite good though as i'm not quite yet up to normal eating, almost there though and I am very hungry 24/7 which is a novelty.
:dance:
 
Hi y'all!! I too am waiting for a concrete diagnoses and have been for about 15 years now. Wow!! That's a long time. Long story very short.....started having problems around 20 years old: abdominal pain, diarrhea with blood....went to a doctor who in turn sent me to a specialist after all my blood work and stool samples came back okay. Had a colonoscopy....everything looked good. Nothing was wrong with me so they said. Time went on pain got worse. Diarrhea got worse. I began to feel tierd all the time. Weak. Sick feeling. Weight lose. Back to the specialist. Ran everything again!! Same results but since he could clearly see that I had lost weight he said it's probably IBS. So I was instructed to eat fiber, whole grains, wheat....can you all guess what happened then? You guessed it....I was sicker than I had ever been for months. Miserable! Back to the specialist where he gave me a partial colonoscopy while I was awake!!! PAINFUL! Results?.....the same. I said screw this! I was done. Until about 1 year ago when I saw another specialist down south where I currently live and after all the tests; colonoscopy with BIOPSIES, endoscopic, blood work, stool samples.....results? IBD. Is it Crohns or Colitis? Leaning more towards crohns because it's not just my colon that's inflamed it's also my terminal ileum. So I'm scheduled to have a capsule camera test to look at the rest of my small intestine. Plus I have joint inflammation and pain. I've had kidney stones twice and am currently getting over a bladder infection. I'm so glad to be able to at least call what I have IBD even if I never know for sure if it's crohns or colitis. Hope everyone wakes up to a great day tomorrow and the day after that.
 
Star - I'm sorry you had such a bad experience today. That totally sucks. I'm happy to hear that you're starting to feel a bit better after today's ordeal.

B's Mom - poor guy...i do hope that you can get a diagnosis soon & start your boy on his road to recovery. I have a 15 yr old son & can imagine just how difficult this must be on him (not to mention you!). Please hang in there.

Stephy - 15 years!! HOLY COW! I hope they can narrow it down for you after the pill cam test. I find it incredible that SO many doctors are not able to identify what's going on; and for that many years?! Inexcusable.

Space - thanks for the recipe...i'll give it a whirl. Yeah, it's hit & miss for me and lactose...definitely not on an empty stomach. And only some products bother me and others not. Odd.

Cat - happy to hear that the bm's are clear now. It's just unnerving, period, when there's blood coming from one's bottom! :poo:
 
stephy - you poor thing. it really peeves me when doctors say eat more fiber! apparently it's the answer to everything right now. well obviously it isn't. lets think, who are the healthiest people in the world? probably asians. what do they eat? lots of rice, lean meat and vegetables. grrrrr... i don't think fiber is all it's cracked up to be.
 
Ugh. I'm not doing well today. My hemorrhoid hasn't healed yet, and yesterday I developed a new hemmie right next to the existing one! They're like, within the same pocket of skin. It hurts to the point that I don't want to sit down. Not comfortable! Tucks isn't helping much and I don't know if the suppositories are doing anything either. I have a party to go to tonight - it's one of those murder-mystery dinner parties, I've never been to one before, so I'm kind of excited but kind of wishing I could just go home and soak my bottom in a warm bath. I don't have any other weekend plans though so I'm going to try to get my backside feeling better. I might get a sitz bath or just take a bunch of regular baths. Owww, I hate hemmies, this is so uncomfortable! There hasn't been more blood though (actually there was an itty bit last night but it was on top of the poo, not mixed in, and it happened right around the time that the new hemmie formed, so I'm sure it's from that and not coming from my guts so I'm not worried).

Stephy, welcome to the club. I'm pretty much in the same boat you're in - both my GI and GP have said I have IBD (officially my current diagnosis is "chronic non-specific enteritis") but they don't know which type of IBD. My GI thinks either Crohn's or microscopic colitis. If you have any questions about the pill cam, let us know - a few of us in the club have had that test, myself included.

BsMom, glad to hear it doesn't sound like Lupus. I hope you can figure out what it is soon, and that your son can get some good treatment and relief from his symptoms.

Flower, I agree - fiber is evil! It supposedly helps if you have IBS, but I think that it should be a red flag for doctors, that if they tell a supposed IBS patient to eat fiber and that patient gets worse, they really should start looking for IBD or other illnesses besides IBS! Because fiber can and does make symptoms of IBD worse and I'm sure we all know how miserable we feel after eating something high in fiber (popcorn - shudder!).

Star, glad to hear your appetite is back, that's a good feeling after being so ill. As for the veins, I recall hearing others with bad veins say they request a pediatric (butterfly?) needle and that works better for them. So next time, you might want to inquire about that. I don't know much about those myself as I have okay veins but it's worth asking about.
 
Hi Cat, I have blood drawn with a butterfly needle each time lol :) Drawing blood is usually tricky but not problematic. And they tried yesterday with one to insert the cannula but no joy. With a cannula the small veins suitable for drawing blood cannot support it so they need a bigger one which is nigh on impossible with me. :p

I just have cr@p veins!
 
Star, that's crazy that they already use the butterfly needle and still had a hard time finding a vein! Wow, I hope they can figure out a better way next time! Maybe insert some kind of a port? My grandfather has a port going right to his veins, I believe it's for dialysis as he's been in kidney failure for awhile. Kind of a drastic move though, and I don't know if there's some kind of a temporary port that they could put in? (My grandfather's port is permanent - he's 80 and has other illnesses so he can't get a kidney transplant and will be on dialysis until he dies.)

My hemmies have had no improvement, although I did make it to my friend's party last night. It was fun, and there was a lot of thinking involved (it was a murder-mystery game dinner party) so I managed to not think about my hurting backside for a few hours. And I'm just going to rest up and recover over the weekend. How's everybody else doing? Have a good weekend everyone!
 
I hate when my emails stop for this thread! I feel like I get so behind!

Thanks for the kind words about the pain meds. It was a huge relief to pick up a script for 90 of them and know that I have two refills after that. I'm set for atleast 3 months!

I went and got some other medical stuff sorted out yesterday. I see a German Rheumy for a treatment plan on March 1st. My GP only referred me for one visit, just to get a treatment plan and take it back to her. My referral papers say "female diagnosed with inflammatory arthropathy". I'm just hoping this guy knows English so that I can thoroughly explain my history and what I have so that I get the right treatment!

Cat, I'm sorry about the bloody D! :( I really hate when that happens.

Sunshine, it sounds like you are on the right track to getting a FIRM diagnosis! Thats so great!

I hope everyone else is going well. I have been flaring severely the past few days. My pain is super high, my joints are swollen, and I'm having trouble eating. Hubby refilled his zofran for me, which was nice of him, and I picked it up while I was getting my refferral done. I know you aren't suppose to share medications, but its just zofran. I wouldn't be eating at all right now without it actually, so I'm glad he thought of it out there in the field. He won't be home until Thursday.

Speaking of the Army, we are now going through MORE drama with the upcoming deployment. I don't know how much I've talked about it on here, but Stuart is suppose to deploy in June. We are getting out of the Army in December, so he would not go through the entire deployment. He has to be back 90 days before we ETS (move), so he would be deployed for 3 months pretty much. Even though its short, I'm still REALLY dreading it, because the stress of being alone here makes me flare really bad. Anyway, Stuart called me a few days ago and told me they don't want him to deploy at all if he isn't going to serve the entire deployment. Basically its all or nothing. Sounds great, right? The problem is, instead of deploying, they want us to leave the Army early, in just a couple months. We do not have the savings or plans to move across the world in that amount of time. So I was skeptical of all of this. Well, when I was at the clinic yesterday I ran into my husband's bosses wife, and she started talking about how Stuart isn't deploying. BTW, gossip among army wives is really common. She was like "Stuart isn't deploying, they don't want him there if he is only going to be there for few months." Holy cow, this girl knows more about what is going to happen in our lives than we do. Because I didn't know it was set in stone yet. What I really hope is they transfer him to another unit in Bamberg ASAP, and he doesn't have to leave again for a month early March. I just want a stable life to get a handle on this disease!!
 
Stephy 15 years that is long. Its just over two years or more for me , same synptoms and loads of tests but no firm diagnosis. Possible IBD and i too was told to take fibre which was not a good idea. Glad you are now on the right track and maybe now you can get proper meds to help. Hope your having a better day .
 
Cat lol believe me when I say my veins are just rubbish, full stop. Never had so many tries before though! That is kind of what they said Thursday, I would have to come into Clinic just to have a cannula put in (which is what they were trying to do, but obviously in the MRI dept it's not what they do all day, every day, I need skilled hands lol) and then come back another time for the scan. I wish I could have a permenant one!

Last time I had to go to A&E they had to get the Registrar (most senior Dr on duty) to put the cannula in so I could be hooked up to the IV.

There is nothing anyone can do really, I just have to put up with it. I have looked into ways of making my veins more promenent but hydration and heat are the only things that can help. Of course the MRI scanner rooms are freezing cold because they have to keep the machines cool which didn't help.

I wish there was a pill I could pop. :cool:
 
Hi Allie,
So sorry to hear of your continued illness and the disruption in your life with army matters.
I just hate it when other people know more than I do of what is happening in my life
and commiserate with you on this score.
Hope the army will soon sort out all the details in your favour, and that you get the appropriate qualified specialist attention that you clearly need.Feel better soon.
Hugs and best wishes
Trysha
 
Eeeek it seems my MRI troubles are not over yet! I am going to call the MRI dept as the injection site on my foot is not looking good. About 1/4 of an egg sized/shaped swelling which is red, surrounded by a blue bruise (not surprisingly) and beyond the bruise more redness.

Was going to wait until later in the week but really not happy at how bad it looks so shall call Monday.

:stinks:
 
ahhhh my CT Enterography (with this gross stuff I have to drink to "inflate" my small intestine and then get an IV with contrast in it) is on FRIDAY the 10th!!! :( I'm so nervous!!! I hate drinking this stuff... they always make you of course not eat or drink anything after midnight before the test which makes my reflux and nausea VERY sensitive... and then I have to drink that nasty thick stuff :( I'm not happy about this... I hope it goes well on friday. But i'm gonna try not to think about it until then. lol it just makes me cringe when I think of it. because my last ct scan with the barium (which is different than this test) every sip i took i threw up and it took forever to get enough for the test... just hoping things go more smooth this time.

Star, SO sorry you had so much trouble with your veins cooperating!! :( that's always the worst part with those MRI's and CT's usually. They just keep sticking and poking and don't even think of how much it hurts us. :/ I really hope that your injection site calms down, that is not good.. :( i'm worried! keep us updated! <3

Allie, goodness I can't imagine what you are going through with this army stuff. :( You are so strong!!! To handle that stress of your husband and being alone AND and illness that isn't under control yet! :( *HUGS!
 
Allie, that sounds so stressful. :( I hope things work out okay and that you can de-stress and finally get healthy! Hang in there. I hope the German rheumy can help. In the meantime, I hope your flare gets better soon! It sounds like you're going through some rough stuff right now. Big hugs!

Star, that sounds like a nasty infection! I hope it clears up soon!

Sunshine, good luck with the CT - I hope drinking the stuff isn't too terrible, and that it's at least somewhat worth it and you get a worthwhile result out of it.

As for me, my hemmies are still painful and annoying. And, today I noticed my dog was limping. She appears to have broken a toe! Poor thing, I have no idea how it happened. She's getting lots of treats and quiet time until Monday when hubby can get her to the vet. I hope it's something that will heal easily. Why can't I just have a non-eventful weekend? Ugh. And Monday I have that overnight business trip so I'm stressing a bit about that. I very rarely have to travel for my job - the last time I had to do an overnight trip, I think it was 2 or 3 years ago. I just want to stay home and cuddle my poor pooch! :(
 
Cat, aww I'm so sorry that your dog is hurting :( and that you are as well!! I hope that your traveling for your job isn't too stressful for you and that your tummy calms down and doesn't flare for you while your away. *hugs!!
 
Hi everyone! Its been kind of quite around here lately! Well, I got a call from the nurse today with my pill cam results. She said that there were no ulcers or strictures and no definitive signs of Crohns. She did say that there was some inflammation of the ileum and that the camera did not make it to the cecum. My GI wants to see me back in a few weeks and for me to stay on Pentasa for now. I'm still feeling better and not having any diarrhea. I am still having pain mostly in the lower left abd area and I'm still running frequent low grade temp. Once again, I'm happy with normal test results but still wish I knew why I was so sick this last year and why I've had these "flares" for many years. I'm ready to settle for IBS dx and learn to deal with it. High fiber foods really hurt me, so I don't think that is the answer. Any thoughts on where I should go from here or what I should ask GI at next visit? Hope everyone is busy living the good life!
 
Thanks for the kind words guys. :) I woke up this morning with a fever and pain, so I'm taking it easy.

Cat, have you figured out whats wrong with miss Lilly? I hope your business trip is going well!

Sunshine, good luck with the CT! That barium is sooooo nasty. :( My best tip is to drink it with a straw while watching TV to distract you! I put the straw way back in my mouth to keep the stuff from touching my tongue.

cb323, I'm sorry about more normal test results! Were you on pentasa at the time? You said you have been feeling better lately....could it be possible there was nothing to find because there is no flare? Either way, DON'T give up! Even if its not Crohn's or IBD, you know something is wrong with your body. I wanted to give up too when my pill cam came back normal, but my gut feeling was that something is really wrong and I couldn't ignore it. You have to have answers in the end!
 
cb323, personally if they saw inflammation of the ileum on the Pill Cam then I wouldn't call it a normal result, and would push my GI on it when I saw him again! Also if you are responding to Pentasa that is another sign something more than IBS is up.
 
Stargirrrl thats a good point, If you are responding to a medication surely it must mean something .
I have said this to my Doc, Im on Asacol and its has greatly reduced my D say by 50% although i do still have constant pain. Does this mean that there is inflammation in the upper bowel as that it what its supposed to reduce ?
 
Hi all, I'm back from my trip! I survived, although I had some nausea. The city I was in, I drank the tap water, and it was so awful that it made me really sick to my stomach! It was really gross. Other than that, it went pretty smoothly.

Allie, my hubby took Lily pooch to the vet yesterday, and the verdict is that she has no broken bones. That's good news! She either has an infection in her foot or maybe stepped on something sharp that's like embedded in her foot now. If that's the case, it'll just have to work its way out. Either way, she's on antibiotics and antifungal meds to take care of whatever's going on with her foot. She's still limping a bit but seems happy. Of course, she just lost some weight but will probably gain it back now. She won't take her meds as-is so we're mixing them with some peanut butter, she's walking less for now, and we're giving her more treats and bones to keep her occupied and happy. So yeah, it's a setback, but she should be fine pretty soon. :)

Pvail, I'm on Asacol as well. My understanding is, it works only on the terminal ileum and the colon. So if you have illness further up in your small intestine, it wouldn't do a thing up there. The colon is the area of intestine that mainly absorbs water, so if you have illness in your colon then you're more likely to have diarrhea - so it makes sense that being on Asacol has helped lessen the amount of d that you're having as your colon should be somewhat healed and absorbing water better. Asacol is also really mild, so if your illness is more than mild then Asacol might also not be enough to keep things in check. I hope that helps! If you're still having awful pain then I would imagine that means you've probably got inflammation going on elsewhere besides your colon and TI.

How's everybody else doing? Who's got tests or appointments coming up?
 
I got a copy of my pill cam results in the mail today. The summary stated no definitive evidence of Crohns. It also said there is mild petechial inflammation of distal small bowel and distal ileum that is of questionalble significance. Its seems like my test are always normal with just a touch of abnormal! Questionalble significance to me means, maybe there is something wrong and maybe there is not. My follow up appt is Mar. 2. I really hope that he does not suggest anymore test at this point. I think I would like to wait awhile and see if I continue to get better or if I flare again anytime soon. Have any of you heard of inflammation described this way or know what it means?
 
The report states there is inflammation in these areas but the person reporting does not want to commit themselves to calling it Crohn's.
It therefore becomes a watch and wait situation.
I don't believe it means nothing is wrong., but rather to keep an eye on things and maybe repeat tests at a later date if symptoms persist.
Medicine is not an exact science, this is where the art comes in.
Watchful waiting may be the answer for now, but do not tolerate worsening symptoms.
Your GI should leave the door open for you to report any changes in the future.
Hopefully you will be given the opportunity to ask exactly what the report means.
It is possible for someone to have Crohn's with normal lab results.This is where delays
of diagnosis occurs.
Hope this helps
Hugs and best wishes
Trysha
 
Yes, my son's pathology report from his resected portion of bowel stated...no convincing evidence of Crohn's.

Trysha is spot on with her explanation. I asked the surgeon why the report came to this conclusion when we know he has Crohn's and he said..."Pathologists don't like to label people with a disease unless they can tick all the boxes". For Crohn's disease granuloma's are the clincher for a diagnosis and in my son's case he does not have granuloma's hence the, no convincing evidence.

Dusty. xxx
 
Hey im thinking about getting some ensure powder tomorrow I can't remember where I read it but I think it was this forum that the chocolate doesn't give you D... I tried the vanilla a yearish ago and it gave me d... Because I really need something for breakfast as I can't eat in the morning and need the energy.. If I can't get it as I forgot where I got it last time is the sustogen any good?

Thanks jamie
 
Trysha, thank you for your explanation. What you said makes a lot of sense to me. I am anxious to hear what my GI has to say about the inflammation. Since I am feeling better, I am willing to watch and wait. I know that I will flare up again eventually because I have for so many years. I don't think it will just disappear because the test came back normal! I am glad that even though my GI has been convinced that I have Crohns, he wants proof before he lables me with this disease. A diagnosis of Crohns can make it near impossible to get health insurance if I should lose it through my job. I'm just hoping for a long stretch of feeling well. Grandaughter #3 is due in about a month!

I am grateful for the information and encouragement that I get from all of you. I am amazed at how hard it is for us to get clear answers for our illness. The support that we get on this forum is so helpful. Thank you.
 
DustyKat said:
Yes, my son's pathology report from his resected portion of bowel stated...no convincing evidence of Crohn's.

Trysha is spot on with her explanation. I asked the surgeon why the report came to this conclusion when we know he has Crohn's and he said..."Pathologists don't like to label people with a disease unless they can tick all the boxes". For Crohn's disease granuloma's are the clincher for a diagnosis and in my son's case he does not have granuloma's hence the, no convincing evidence.

Dusty. xxx
Click to expand...

doesn't that sound ridiculous though? gee, we know you had to have part of your internal organs TAKEN OUT because they were so dieseased, but you don't have a disease. :ywow:
 
Phear, it was probably me who said that thing about Ensure. That's just my personal experience, that the vanilla flavor goes right through me and causes d, but the chocolate flavor doesn't. That's just me and you might not experience the same thing! All I can tell you is to try various flavors and brands and see which one you like best. I prefer chocolate Ensure but some people can't stand it, some people prefer Boost instead of Ensure, some will get Carnation Instant Breakfast drink mix and make their own drinks, etc. Give it a try. I tried a few brands (didn't like the taste of Boost) and flavors (the aforementioned vanilla issue) before I found a supplement drink that I liked.

Okay, so I'm having a slight issue. I've been on these steroid hydrocortisone suppositories for a couple of weeks now. I insert one every night just before bed so that it can work its magic while I sleep. But, I think the steroids are affecting me a little bit. I am lately having a little bit of a hard time falling asleep, and my appetite is up. It sure feels like it's steroids getting into my system. It's annoying enough that I'm thinking about stopping the suppositories (I'll call my GI first of course and get his opinion). They don't seem to be doing much for my hemmies anyway, I still have 2 hemmies and they still hurt. I felt progress on the suppositories for a little bit but then it seemed to plateau (and then got a bit worse - when I started the suppositories I only had one hemmie!). Has anyone else done this type of suppositories? I believe the brand name is Anucort. Anybody else gotten a slight pred-like effect from steroid suppositories??
 
flowergirl said:
doesn't that sound ridiculous though? gee, we know you had to have part of your internal organs TAKEN OUT because they were so dieseased, but you don't have a disease. :ywow:
Click to expand...

I know! I guess it's just another of the anomalies with this blessed disease! Like I said at the time...it's no wonder it sometimes takes so long to get a diagnose..sheesh!

Dusty. :heart:
 
No Answers, Once Again

Recently went to Mayo Clinic Minnesota after losing 40lbs. since August, having bloody D (GI said probably hemorrhoids), and 20+ BM's on some days. Prescribed Lomotil to help with the D and it definitely did help for a week before Mayo Clinic but after returning from Mayo it is no longer helping. I am at the max dose of eight pills a day and not sure what other meds can help...

The Mayo Clinic test gauntlet over a period of 2 days was brutal - blood tests, stool tests, colonoscopy, endoscopy, and MR Enterography. All Mayo staff was great to interact with and I felt that everyone wanted to be an advocate for my health. Unfortunately, the GI (Dr. Conor Loftus) could not find anything and said we must treat symptomatically for now (as if it is severe IBS) while retesting every year for Crohns that may not be showing up on tests.

Locally, I will undergo a White Blood Cell Scan and attempt a second Capsule Endoscopy since the MR did not show narrowing. I am also going to start the Specific Carbohydrate Diet to see if it helps... Any other recommendations you can offer for next steps?

Thanks!
 
whyclef - did they test for celiac? you could try doing a gluten free diet. have you been tested for food allergies? do certain things tend to get you going?
 
Celiac was negative, I think it was third time to be tested and it come back negative. One month of a gluten free diet made no difference for me. I have not been tested for food allergies, that would be a good next step. Thanks for the help.
 
Thanks cat.. Mum managed to find me some chocolate ensure today as I can't due to working. I'll see how it goes hopefully well as I don't know if I can get boost here in Australia. I don't care what it tastes like really so long as it doesn't give me d... Which the
Vanilla did.
 
Hey phear,

As far as I know Boost is not available in Australia. The drinks that Matt was given were Ensure, Fortisip and Osmolite.

Good luck!

Dusty. xxx
 
So, I haven't gotten all of the blood work back yet BUT my doctor did prescribe me Vitamin D pills because she said it was very very low. I should find the rest of the results when I go see her for that appointment on the 27th! so like 2 weeks more for that..

but I have the dreaded CT Enterography on Friday!!! :'(
I got the directions on it today and it said I have to drink 4 BOTTLES OF BARIUM!!!! and then do this IV contrast too!! :( My reflux is always so bad that I'm afraid I'm gonna throw up most of it again like i did with my last CT scan that I did! :'( plus i'll be dehydrated from not drinking anything after midnight on friday morning that it's gonna be hard to get a good vein! :( I am NOT looking forward to this test... it better be worth it and show something... :'(
I'm so nervous about friday!
 
Sunshine, good luck on Friday. Just a warning, I had this test a couple of weeks ago and the barium gave me the big D! :frown: No one told me and I was lucky to make it home...so don't be surprised if the D comes along.
 
whyclef said:
Celiac was negative, I think it was third time to be tested and it come back negative. One month of a gluten free diet made no difference for me. I have not been tested for food allergies, that would be a good next step. Thanks for the help.
Click to expand...

Was it tested via blood or biopsy during upper endoscopy? The former can be unreliable and the latter is the gold standard to dx cealiac. Also if you weren't eating gluten at the time of testing, there would be nothing to produce the antibody so the tests would come back normal anyway.
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
935
ras96mg
R
C
Your thoughts, please. 10 yr old.
Replies
9
Views
507
Maya142
Maya142
N
Advice on diagnosis
Replies
1
Views
966
Scipio
Scipio
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O

Latest posts

Back
Top