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One more post and then I swear I'll stop for a little while...

Meg, I forgot to add to my reply to you - I do have a close friend, my best friend, who has Crohn's, and she is the #1 most supportive person in my life. So I do have support "in the real world" outside of the forum. I don't know what I'd do without her, or without you guys!
 
Possibly Cat but it had to get approval from what is called the Primary Care Trust who dish out the money to the Hospital. So, it's on a list which means you can't have it automatically like a scan due to the cost involved, so it must be pricey here. Plus the 3 hours of GI's time which is how long he said it would take him to view the images.

My GI said his hands were tied which I appreciate (the money pit is not bottomless after all), but although cost was the main excuse I do feel there was an element of wanting to write it off as IBS anyway, in which case the argument for the test shrinks somewhat!

I am really worked up about Wednesday :( Sometimes i really feel like i've gone past the point where I can cope.
 
Thanks everyone :)

Star, I completely agree with that pill cam stuff. I have a huge hunch that if they did the pill cam that I would be diagnosed. When they did the SBFT I had them press right where my pain is and it was a mass of small bowel that is located there, not my colon. But since the stupid SBFT saw nothing, he thinks there is nothing to find. I really think you should get a second opinion star. You have abnormal test results, I don't! There is a huge difference and they should be looking!!

Cat, I know it will mean being untreated, but I really have no where else to turn anymore. I would LOVE to go back to my GI in the states in August, but my health insurance is Tricare Prime, which means I can only see military doctors. Before I came to Germany I had Tricare Standard, which meant I went to off base doctors and I paid 15% of all medical bills and prescriptions (like my hernia surgery for no reason and all my ER visits). When I go back, I have to kind of keep it hush hush because as a military spouse stationed overseas I am not suppose to leave Germany for more than 90 days, or we lose our house. Well, a semester is 4 months...so I am having to keep quiet. I'm not letting the Army get in the way of my education (my husband will be gone for ten weeks anyway), but it will get in the way of healthcare. I can see doctors at a military clinic south of Atlanta (Fort McPherson, but they are shutting down very soon), or I can go to the ER if they approve it (ha, they ALWAYS approve my ER visits with my condition). So, healthcare for those four months is going to be iffy...I'm still not quite sure how I'm going to get all my meds if I run out. I'm playing this by ear because I'm not going to let this stand in my way of graduating in December. :)

The main reason I'm probably going to just get by for awhile is to see what happens symptom wise, then maybe it will develop into something that will show up on blood tests or other tests. They aren't going to repeat any GI tests for awhile anyway. I am still shocked he wanted me to look into other autoimmune diseases, which I looked a little bit last night, and I realized I've never been tested for Addison's disease. I know you have been tested for it Cat, and the symptoms are so close to IBD! So I'm going to bring that up when I see my GI in a month or when I see my GP next month for my yearly pap smear (oh fun lol). Other than that, I don't know how my symptoms would match another autoimmune disease. Especially when he tells me "you aren't going to die from whatever you have" when most of these diseases can be life-threatening. Just blows my mind!
 
A second opinion is on the agenda, don't worry. If I get nowhere with CT scan/new symptoms I don't have a choice really :(

Am all ready to ring up for a GP appointment Thursday am and get the ball rolling right away if it comes to that. Then can have her do FBC/CRP and possibly FOBT as well.

Planning to sleep alot today, I just want tomorrow morning over!

I've been thinking about the Pill Cam issue again. If the main issue is not cost but time, why not have 3 other junior Drs/GI staff do an hour of looking at images (going from my GI saying it would take him 3 hours) and referr any abnormal images to GI who ordered test for review.

I've had tests for Addisons, Lupus, Cushings, and probably some other stuff too! I had that attitude from GI too allie. Something along the lines of "well it's been 4/5 years and you're not deathly ill so it won't be anything serious". :ybatty:
 
Testing but Nervous

I have been having really screwed up bowel since about Christmas of 2010 and initially posted in this forum because my GP had mentioned colitis. She has also been saying IBS for many years because of my dumping syndrome that I get at times.

The GI that I saw last Wednesday (5/18) told me she was pretty sure it was IBS until I mentioned my "morning lump" and right-sided burning/throbbing pain. Right after that comment, she was like have you ever had a CT scan. Well, I'm anxious to begin with and this really freaked me out. After her manual exam of my abdomen I asked her if she thinks I should be worried and she said, "Well, your weight has remained stable and your past bloodwork has been normal. Those are good signs. But apart from that, I have very little to go on." Now I'm left worrying that she suspects cancer. I'm so scared now. My CT is scheduled for next Tuesday, but no follow up appointment has been mentioned. This causes me even more stress because since I know I won't be going back in to her any time soon, I'm just going to assume that if she calls to meet with me about the CT it has shown something bad.

My constipation has eased up a little bit, but I'm experiencing a few weird symptoms still. My lower-right ovary area seems to hurt a lot, and this pain is in conjunction with this boiling sensation/sound. It's like food comes out of my small intestine and just roils and bubbles and rushes and when it does, it fills up what I assume is my cecum. I can literally see it expanding through my tummy. Then I get all burny feeling along ascending colon and right up to below my ribcage. It feels like every time something passes along that area, from small intestine exit to hepatic flexure, it causes me some amount of discomfort. My rectum/anus/sigmoid area also feel inflamed.

My bm's have been so weird looking the past few months. Liquid, solid, pebbles, pebbles mixed with soft orangey stuff, white mucus, brown mucus, stringy, you name it. I hate looking in the bowl afterwards.

I'm having bloodwork done tomorrow. She's sent me for two different IGA tests. One is just Iga and the other is Tissuetrans IgA. Not sure what they are. I'm also having a SED rate and CBC.

She also wants me to use Miralax every single day. I hate this stuff because it bloats me like there's no tomorrow. An hour or so after drinking it I feel like popping.

I have no colon cancer in my family, just a few odd polyps. My dad is 54 and he just had a colonoscopy last week. They found four incredibly tiny polyps and the doctor said they weren't the right "type" to become cancerous. My grandmother on the same side has had pre-cancerous ones. I guess that I'm being a huge worry wart but I just can't help it. GI said that right-sided pain was often reported in Crohn's patients. Do either of these blood tests look for Crohn's?

I'm 36 so I know that I'm not in the high-risk age group, but I can't get this out of my head. Especially since she wasn't going to do a CT until I mentioned the right of my belly issues. Will a CT show any sort of IBD?
 
bypeep, the ct can see inflammation and thickening of he bowel that you get in IBD. If she was worried about cancer of the colon she would be looking at a colonoscopy or a virtual colonoscopy also done by scan.
 
Star, good luck at your appointment today! Keep us posted on how it goes and what you're going to do next. I hope your CT scan results show something useful! And I hope your GI takes things more seriously now that you've definitely had blood. Fingers crossed for you and thinking happy thoughts for you!

Allie, I'm sorry things will be complicated with your healthcare when you get back to the states. If you are able to, definitely request that your doctor test you for Addison's, because like you said it can have similar symptoms to IBD and it also responds to pred! It's a pretty rare illness (I think something like 1 out of every 100,000 people has Addison's) so it's much less common than Crohn's or colitis. And because it's so rare, a lot of doctors don't think to test for it, especially if the symptoms look like a bowel issue. Your insurance sounds confusing to me, so make sure they cover the test for Addison's before you have it - otherwise it's over $1000 for what is essentially a blood test! What I had was called the ACTH stimulation test. Basically, they inject you with this stuff called ACTH, which naturally occurs in the body and the presence of it causes the adrenal glands to produce cortisol. So being injected with ACTH, in a healthy person, causes the cortisol levels in the body to rise. In a person with Addison's the cortisol levels won't rise or will only rise a little tiny bit (I think I already talked about this, my cortisol levels rose only a little, so I don't really know what to make of that). So, in this test they first take your blood to get a baseline reading of your cortisol, then they inject you with the ACTH and then test your blood every half hour or every hour, and this goes on for about 3 hours. At the end of the test your cortisol levels are supposed to double or triple from what your baseline was, and baseline is normally 20 to 30 (I forget the unit of measure).

Here's the wikipedia link about the ACTH test:
http://en.wikipedia.org/wiki/ACTH_stimulation_test
Also, if you search youtube, you might find a video showing one of the hallmark symptoms of Addison's, which is that the pupils aren't always "fixed." I tried this myself and my eyes don't do this, but what you do is sit in a very dark room with no light at all for several minutes, then shine a flashlight into your eyes and look into a mirror. If you have Addison's (and this is only if it's "primary" Addison's, as opposed to "secondary" which can be caused by things like overuse of steroids like pred), your pupil dilation will sort of waver back and forth between bigger and smaller. It's hard to describe. I'm at work and youtube is blocked from here so I can't find the video, but I've seen several on there showing what it looks like.

Edit: Silly me, I thought today was the 25th. I should have said, Star, good luck with your appointment tomorrow!
 
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Hi Bypeep, welcome to the forum and the club. I agree with Little Miss H, I wouldn't be too worried about cancer if I were you. I'm 31 and before I had my colonoscopy, my GI said that cancer is always a possibility but that given my age it would be "extremely rare" to find colon cancer. So try not to worry, I know that's easier said than done.

As for your CT scan, my GI told me that CTs can get a good "general" overall picture of what's going on but don't see a lot of fine detail. So the CT will most likely look at your entire abdomen to see if they can see an obvious cause for your pain and symptoms. When I had my CT scan, it didn't find anything going on in my intestines, but it did find that I have some benign nodules on my liver. I wouldn't have known that if I hadn't had the CT, since they don't cause any symptoms (they aren't the cause of my pain/illness, just an incidental finding). So the CT will be a good starting point to see what's going on generally, and if they want to take a closer look at something they might schedule an MRI as those see more detail. I had an MRI of my liver to confirm that the nodules were benign.

I hate Miralax as well, you might want to ask your doctor is something else like a stool softener would work better for you. Some of the medications I'm on tend to constipate me so I take Colace stool softeners which work pretty well.

As for the blood tests, I'm not super familiar with those but I think some of them look for inflammation markers and/or autoimmune markers in your blood. I could be wrong though. I know that I've had my CRP (c-reactive protien) tested several times and I know that one looks for inflammation. None of the blood tests are super accurate, so don't be discouraged if they come back normal. I read a statistic recently that something like 10% of all Crohn's patients will have normal CRP even when they're flaring/inflamed. So, blood tests can be wrong.

What other tests have you had? Have you had a colonoscopy yet?
 
I haven't had any stomach related testing. I had a digital rectal exam the last week of January because of the burning, stabbing pains. She felt nothing but to me it felt like she'd put a blow torch up there.

I am being scheduled for a colonoscopy because she mentioned something about possible inflammation. And of course, an upcoming CT on Tuesday of next week.

I had a pelvic U/S on 2/14/11 which showed nothing except for a small fibroid and my right ovary with about four small follicles. No cysts, no free fluid. She had a hard time finding my left ovary but I guess she eventually did.

The last SED I had done was in August of 2009 and it was 10, but I wasn't experiencing any major bowel symptoms then. They did it cause I woke up one morning with a fist size lump sticking out of my boob.

I guess maybe my biggest question at this point is: Where is your pain, what does it feel like and how long does it last? Do you have this strange boiling as though something is coming through a high-pressure hose and then filling up your ascending with a burning/swollen sensation? My pain is stabbing and seems to be in relation to eating, but it doesn't seem possible to get pains at the end of my small bowel within 30 minutes of eating. The other time is when my bowels kick into gear at about 4:30am. That whole side bothers me until I get up and moving around. Then it starts to bother me as the day goes on, with bloating beginning shortly after I eat. By supper time I'm usually miserable.

I am hating every second of this because I just want to know already. lol
 
Bypeep, my main pain is in the lower-right, right around where I guess the appendix is. I'm assuming that means I've got illness/inflammation going on in my terminal ileum as that is the most common area for Crohn's to manifest. On a good day, my pain is barely there, like a 1 out of 10. When I flare up, my whole lower abdomen hurts (and so do my joints and my lower back and my stomach and pretty much everything!). I get ocassional pain in the lower left too so I think I might have some colon involvement, but not sure. My "main" pain is the lower right though. If I eat the wrong thing, get too stressed, etc I will feel my pain there start to grow. It is a fairly sharp throbbing type of pain. Sometimes I can swear I feel food moving through that area as well.

And I would certainly think that you could get pain within 30 minutes of eating. Do you have a lot of diarrhea? I do, and when I used to take peppermint oil capsules, I could measure my "transit time" from mouth to toilet and it was sometimes only 10 or 15 minutes. I'd take the peppermint capsule, wait a few minutes, and then when I had diarrhea I could tell that things were going right through me because my poo would smell minty! So, you might want to try something like that. At any rate it left the bathroom smelling nice for a change! ;)
 
I have diarrhea constantly, but inside the liqui-poo are often little hard balls. Last summer I had diarrhea from June to October. About August I developed this weird case of psoriasis on my scalp. Never had it before. It went away when I stopped having diarrhea. I started having right-sided pains and gurgling and massive diarrhea AND constipation in January. About a month into my gut horrors, I got a new case of psoriasis. Do you know if there's any correlation? I've never had scalp problems before and it seems like it's probably just a coincidence, but what if it's not?

When I get diarrhea episodes, my rectum/sigmoid/anus start killing me. Like throbbing, spasming, shooting pains and swelling. Not sure if it's because of the diarrhea or what, but it's miserable.
 
Cat, thanks for the info. I have looked through the info and it actually matches my case pretty well, with the passing out being the part that makes the most sense (I KNOW IBS would not cause that). Heck, it might be IBS and addisons, since when this started it was IBS-C). My health insurance isn't complicated, it just restricted who I can go to, since its cheaper to pay their own doctors. They have paid for all my tests and meds 100% since I got to Germany, so they should pay for the addisons test if they think its worth a shot. The fun part will get a referral to the specialist that can help me since this is not in the GI's area. It might take me awhile to get the test. And if it takes more than 2.5 months (the time I have left in Germany) I would have to wait even longer. I'm keeping an open mind though, and looking for other options...better than giving up!

Bypeep, I hope the colonoscopy gives you the answers you need! I wouldn't be too worried about cancer. I have been told by every doctor since I was 15, when they first see me, that there is a chance I have cancer. But it is a low chance, so there is no need to worry about it! I also have a lot of pain around my rectum when I have bad D. I think its because that area isn't used to the irritation is causes, or it could be caused by external/internal hemmeroids (which I have).

Cat, did the peppermint oil help? I've been told by my GI to try it, but I will have to order it online and get it shipped here, which could take over a month to arrive.

Of course, the day after my GI tells me there is pretty much nothing he can do, I have had a really bad day health wise. I was in pain at a ten earlier, and I couldn't move or get myself to the bathroom. It was a crampy pain, which is never what I go through, so I'm wondering if the new meds are causing it. First it was in the normal place, Upper left quadrant..then it moved to the lower right..then moved to the lower left! When I finally crawled to the bathroom, I was on the toilet for a long time, "peeing out my butt". I told myself if I was in this state for longer than an hour I would take a tramadol, but I ended up waiting two. For those two hours when the pain got REALLY bad I used breathing techniques women in labor used...it actually helped a little lol. Now I'm loopy on meds...but its worth it. So glad my GI refilled this stuff. I also took my temp, and it was at a 96.4...I have no idea what that means.
 
Allie, you might not need to get referred to an endocrinologist to get the ACTH test for Addison's. When my GI realized that my symptoms plus the fact that I respond to pred could be IBD or it could be Addison's, he called my GP, and my GP ordered the test. So hopefully your GP can do something similar. You might want to do some googling and bring some printouts showing the symptoms of Addison's, as not a lot of doctors are very familiar with it and your GP may not know that Addison's can cause the same type of symptoms that you've been having.

Have you experienced darkening of the skin, either patchy or all-over? From what I've read, skin darkening is another red flag symptom of Addison's. I guess president Kennedy had Addison's, and that's why he always looked so tan - he wasn't tan, it was that his skin was darkened due to illness!

Bypeep, I haven't had psoriasis myself and I haven't seen a lot of talk about it on the forum, so I'm not sure if it's a related symptom or not. If you look at the top left of the forum, there's a "search" feature - you might want to search the forum for psoriasis and see if there's any other threads about it. As for the rectal spasms, I know I've seen others on the forum talk about that, but it was a little while back so again you should probably use the search to find out what others have said about that. And either way, you should mention these issues to your doctor if you haven't already. Crohn's can come with a lot of "extra-intestinal" symptoms like eye problems, joint problems, etc. I personally started getting migraines along with the gut symptoms when I first became ill. I never had migraines until these gut problems started! So I'm pretty sure my migraines are another symptom, or maybe are being caused by malabsorption or something like that. It sounds like your psoriasis similarly started when your illness kicked into high gear, so I would imagine that's got to be related in some way too.
 
Yeah, thats one symptom that doesn't match up..I'm actually quite pale lol. My husband says my eyelids are quite dark compared to what they used to be though, and I get new freckles all the time. My husband talked about it at length tonight and I've decided to take this path and see if it helps, since my digestive system itself seems so healthy. My GP works at a small clinic here in Bamberg where I live, and I wonder if they could even do the blood test (from the sound of it I betting they cant), but I'm hoping my GI could order it to save me time. He is concerned, he knows I'm really suffering, so I'm thinking he will help me any way he can. Especially since he was the one suggesting for me to look at other autoimmune diseases!
 
Allie, I just realized I forgot to answer your earlier question about the peppermint oil. To be honest, I bought the capsules because the bottle says it "soothes the intestines" and that sounded exactly like what I needed. I didn't really notice any difference though, except that my breath and/or d smelled nice for a little while after I took the capsule every morning. I certainly didn't feel more "soothed". I took those capsules for quite awhile to see if they'd eventually have an effect but I have to say that I don't think they did. I stopped taking them recently, after another person on the forum sent me a message regarding how their doctor told them that, although peppermint can be good for the intestines, apparently it is bad for acid reflux! So, because of that and the fact that the peppermint didn't seem to be doing anything anyway, I stopped taking peppermint oil. My acid reflux was pretty awful for a few weeks back in April so I am trying to do what I can to keep both my guts and my reflux in check.

I'm quite pale too, and I get much paler when I flare. So I don't have the skin darkening nor the pupil dilation thing, so I probably don't have Addison's. It still bugs me though that my cortisol didn't rise very much in that test. Oh, and I would wager that you would not be able to have the ACTH test done in your GP's office. Even though my GP ordered the test, I had to go to the hospital to have it done, specifically to the "infusion center" (where people go to get things like Remicade). That was kind of nice though, I got my own little room with a comfy recliner and a TV while I had that test. That was definitely one of the easier diagnostic tests I've had done! I was actually kind of jealous of the people who are on Remicade, I wouldn't mind going there and relaxing for a few hours every couple of months. ;)
 
Thanks for the reply. :) Yeah, it sounds like i might be wasting time/ money trying the peppermint. If i see it in a german store i might try it though. Wouldnt hurt!

I read somewhere a normal test your cortisol should double... Hmm, i wonder why yours only rose a little? The more i read about it the more I think i might have developed something on top of my IBS, especially because of the fainting and bad mood I get when i am really bad. It actually has the symptoms of the adrenal crisis, like the night i blacked out, which kind of scares me! So if Landstuhl will do the test I will make the drive, i think it is worth a shot. I even read some stories of people with Addisons that mistaked it for IBS because of all the GI issues!

Star, maybe you could look into the long term blood test for Addisons if your pill cam or second opinion goes no where? The symptoms are so close to ibd it might be worth it. The adrenal glands control inflammation in the body, which could explain the raised crp!
 
Hi Allie, yes the long term test is something I will bring up with Rheumy when I see him mid-July.
I got nowhere today :( CT scan was normal which was so dissapointing. Am doing a detailed new thread.
 
Star, I just replied to your other thread. I still can't believe your GI told you that some blood in your stool isn't anything to worry about! I'm glad you're going ahead with the complaint process, it sounds like that GI either doesn't know what he's doing or is okay with putting his patients in danger - dark tarry blood obviously wouldn't be coming from a hemorrhoid or a fissure so there's got to be something else going on!

Keep us posted on how everything goes with the complaint process, the new GI, your bloodwork and the bowel bacteria test and the upper endoscopy and whatever else I'm forgetting to mention. Fingers crossed for you that the new GI is so much better than the old one! Are you requesting a new GI from the same hospital/clinic? If so, that means you've still got the option of going to London to that GI specialty place, right?

I just feel so bad for you, I hate hearing about such disappointments. It's not enough that we're all so ill, but we have to fight so hard for answers too! And all that along with trying to live as normal a life as possible, but feeling like you're going crazy because the test results say you're fine but you absolutely do not feel fine. It's downright exhausting! I wish there was a better way for all of us to get through this. This stupid awful illness just takes and takes, doesn't it?
 
I just answered your other thread star. I truly hope everything gets better for you!

I agree with you cat, all of us just want answers. Is that really too much to ask? I never thought someone could be this sick and be left in the dust by the healthcare system!
 
Good luck Star. You're in my thoughts. Everyone is.

I've been doing a lrd and my bowels are much happier. My pain is still high. Arthritis has been bad the last few days. My left thumb hurts so bad, and my ankle where the skin peeled off. It hurts deep in the bone. The scab itches and burns slightly but its healing. I cut my grass with a hand push mower and planted a few flowers. I tried a salad today. My lrq hurts bad now and d is increasing. I'm not sure which is causing that. I'm in bed for the night now. We're under a tornado warning anyway.

Hope everyone is having a calm evening or night, depending on where you are.
 
Meg, I hear you on the arthritis. I was diagnosed a couple months ago with arthritis in my right hip. I just went to physical therapy yesterday for the first time so that I could get my hip assessed and get some exercises to do to help it. And I am SO sore today from the exercises! The therapist said that, although I've only got arthritis in one hip, both of my hips appear to be equally very weak. She gave me a set of 4 exercises that I'm supposed to do twice per day. And although the exercises don't take long and don't seem difficult, I found that I was completely exhausted after doing them! I had no idea my hips were this weak. It makes me feel like a little old lady, I'm hobbling around with sore hips and arthritis and am barely able to do a few simple exercises. This is not fun, I'm only 31! I told my husband he should just put me in a nursing home, since I already feel like an old lady.
 
I know Cat. Let's start a home for all us undiagnosed Crohnies and take care of each other. That would be more fun than dealing with this on our own. I'm glad you got some PT for the arthritis. I hope it helps.

I was diagnosed at 25. I just figured it was family history. Yesterday and the day before I could hardly move my left thumb. It was so bad. It hurts all the way down into the pad on my palm by the wrist. Oh well, I'm used to it, I'll deal.

I left a message for my doc. I did find out my biopsies were normal when the nurse called back. I am to get a special CT of the small bowel next (to rule out Crohn's). She said that was in his notes. So, if this is normal, is he giving up on me? I am very nervous and anxious. When I had my colonoscopy he said there are more tests we can do. Plural. I want more. I want validation. I want to be able to eat a salad if I want. I used to say I could eat salad 2 meals a day. Not anymore. I'm still in pain and swollen. I'm working on little sleep and groggy after effects of vicodin. I'm in a bad mood. And I'm still learning about all this and have loads of questions. I want face to face doc time but that can't happen until 6/28.

Thanks for letting me vent.
 
Ha ha. Meg, if we actually started a home like that, we'd need a TON of bathrooms! ;)

You mentioned you have family history of arthritis. I don't have family history of any of these issues! If anything, I'm currently on par with my dad. I'm 31, he's 58. We both started getting gray hairs at the same time, we both got arthritis around the same time. (His arthritis is wear-and-tear and I suspect mine is related to inflammation or autoimmune.) All my older relatives are like, "Oh, you're young, just wait till you're our age and you get the problems we've got!" And I'm like, "I've already got those problems at my age!" Nobody else in my family has IBD or anything like that and most of them don't have arthritis either, so even the older people in my family don't really understand.

Ugh. My hip is hurting more and more as the day goes on. I have no pain meds so I guess I'll try Tylenol which will probably do nothing. I have some friends coming down for Memorial day and I just know they'll want to walk around. That's going to hurt my hip too. I'd suggest just sitting in the house and chatting or watching a movie, but the male of the couple has bad allergies to dogs & cats, and I have one of each. So we will have to do something outside. Maybe I can rent one of those rascal scooters for the day. ;)
 
That sounds like a plan Cat. Tee hee, I would love a scooter but don't ever want to get to the point where I need one.

My GI said I was too young for all I have wrong. We all are I'm learning. Silly family. You're in pain. They shouldn't discount you.

I am stressed. I work for the state and some laws are changing July 1. The phone calls about it all is crazy! I am so tired of answering the same questions. In a little pain and so tired.
 
I'm sorry your biopsies didn't help you see what was wrong Meg! Hopefully the small bowel test will show why you are doing so bad.

Cat, I am sorry your hip is so sore! Eventually the exercises should help, my husband ha to do stuff for his knee for awhile before it helped any. :(

I know what you mean Meg, my GI said the same thing about me when he saw me on Monday. He is baffled that I am only 21 years old and have had all the health issues I have had! :(
 
Ugh, today I do not feel good at all. :( Dizzy and in pain and just generally feel beat. My husband's knee is acting up too (he has today off, 4 day weekend yay!), so we are both just whiny today lol.

The more I look up addisons, the more it makes sense...I have read that mouth sores are a symptom, and I get them all the time. I had a seizure when I was a toddler, and was told that it was because I was allergic to caffiene (and people with addisons can't handle caffiene). January 2010 I was taken to the ER, had a CT, and was told I had ovarian cysts, one ruptured and one intact, on the same ovary, I have not had a libido in months, and the adrenal glands regulate your hormones. I pass out at least once a week, and am almost constantly dizzy...IBS would not do that. I have gotten all kinds of new freckles, places that have not seen sunlight because it is chilly here compared to Georgia. Whenever I get new cuts they always get infected, no matter how much neosporin I use, and when they finally heal, I get a nasty scar. And all of this is worse under stress (my worst attack was last September when I watched my husband get on a plane to Germany without me...I lost 12 pounds that week).

Its got to be autoimmune...I just wish it wouldn't take so long to figure this out!

I really don't want to get my hopes up. But this all makes sense. I actually think its Addisons and IBS, since my symptoms at 15-19 were constipation, not D. I'm thinking they are both aggravating each other, creating this nasty cycle I can't get out of. I am getting weaker and weaker. Of course, I am afraid that thinking about all of this is making me crazy. Am I a hypochondriac? I don't want to be sick, but I want answers. My gut feelings say this is not IBS....

My husband wants me to get an appointment with my GP ASAP. I don't know whether to go through my GI, who I see in three weeks, or go see my GP this week. I doubt the clinic here can help me if its Addisons. Even though its a simple blood test, I think I might have to get a refferal to another specialist at the military hospital, then meet with them, then get the test. I'm wondering if I should just wait the three weeks and try and do it all through my GI. Of course, watch I go through all of this trouble and the test comes back negative. ~.~

What would you guys do? I'm stuck lol! I cannot believe I'm actually straying from IBD...I thought that that was what was wrong for so long! Thanks for listening btw, even though I am straying from the concept of IBS/IBD.
 
How long have you been ill Allie? Its just Addisons is quite serious and if it's been a long time then you'd prob know if it's addisions......

Have you had any abnormal bloods? Addisons tends to give you low sodium and high potassium and a low blood pressure........

Anyways defo speak to your GP if you're worried......

All the best for getting to the bottom of this; it must be awful to feel so unwell and have no answers!!!

xxxxx
 
I've been this seriously ill since June of 2010. I am now at the point where I spend most of my time in bed or on the couch because I am very weak. :( I have had the tummy issues for 6 years, but the symptoms used to be constipation mostly, and since June its been D 8 - 10 times a day, dizzyness/ seeing stars, passing out at times, mouth ulcers, severe abdominal pain, mucous/blood in stool/TP, weight loss (currently around 115), and chronic fatigue. The pain keeps me up at night and is worse with stress. I also have gotten cracked corners of my lips, which turn into open sores that wont heal for a month or longer.

I know Addisons is serious, and thats why I'm not getting my hopes up that its my answer because there isn't a huge chance that that is whats wrong. My GI thinks it might be autoimmune that isn't crohn's since my intestines look fine. I was hospitalized about a month ago due to severe abdominal pain and my stomach was very warm compared to the rest of me, and I stayed on an IV for 5 days, doing all kinds of tests relating to my intestines and they found nothing. I was also pale as a ghost and couldn't walk far without needing to sit down due to dizzyness.

I have actually ended up in the ER 4 times when I was still in the states, and every time I was sent away with either pain meds or a doc telling me they couldn't find anything wrong with my intestines, since I went in bc of severe abdominal pain and passing out. One time they actually thought it was a hernia and sent me to a surgeon, and they did surgery and found nothing. :( It has truly been a rollercoaster, but I seriously can't think IBS would put me through all of this, which is why I'm trying the addisons route since it can cause the GI symptoms. Like I said before, I don't want to be sick...My GI even had to reassure me that I wasn't crazy lol, because I do feel like I am going crazy with all of this medical madness!

Thanks for your input Lulu! It always great to have someone who understands whats you are going through AND is a doctor to boot! :)
 
Oh, I forgot to mention that while in the hospital I had blood pressure that was normal or a little below normal, while my heart rate was very high. I have also passed out suddenly for no reason or other symptoms (no abdominal pain, but was very nauseous right before I passed out). This was while I was in line at a gas station..very embarrassing! >.<

I have no idea if my sodium/potassium has been tested and what the levels were either.
 
Your sodium and potassium levels are usually checked on any routine blood tests as part of the U and E's (urea and electrolytes - markers of kidney function mainly, but I wont bog you down with that!). You could ask your GP about your previous results.

Your symptoms do sound IBD, and it is a very difficult disease to diagnose, so perhaps it still could be IBD.... but it can't hurt to be tested for other things! Have you been tested for coeliacs?

Nausea is very common prior to vasovagal syncope - a simple faint that happens in normal healthy people. This is probably useless information to you as you're clearly unwell, but that's possibly why your docs havent jumped on that symptom and been overly concerned.....

It's always possible that there is more than one thing going on here, perhaps a middle ear condition causing ur dizziness etc and IBS causing your bowel? This is just one example and based on very little information so please don't take this as a possibility, but perhaps consider that you have more than one thing going on? When I first started getting sick with crohns I didnt believe I could have 2 things wrong with me being so young, so I put my symptoms down to my heart condition (as did my man who's also a Dr, as was one at the time, whereas I was still a student back then)... we were terrified and thought at one point I might have had a heart attack (at which point I was very stupid and REFUSED to go to hospital for fear of what they may find - I prime example of follow my words NOT my actions! lol)... when i did eventually see a Dr, he obv wasnt as emotionally attached to the situation as we were and he gently suggested IBD.... and so began investigations and subsequent diagnosis of crohns......but my point is, think outside the box, you may well have IBS with something else going exacerbating it.... my crohns definitely exacerbates my heart, when my crohns flares I dont absorb medications, inc my heart ones so my heart can go haywire with it too......

Best wishes and I truly hope you're feeling better soon and that your docs can help you, remember to see them if u have ANY worries, its what they're there for and paid to do!!!

xxxxx
 
Yeah, I have definitely thought it might be more than one thing going on. The only reason I have pursued IBD so heavily is because it all fits IBD, and it is what every doctor thinks is wrong before all of the tests come back normal. My GI is stumped, and he suggested other autoimmune diseases on Monday, I believe because of the blacking out and the cracked corners of my lips. He mentioned Lupus twice as a possible cause which kind of worries me. Its really the only reason I'm considering Addisons, since he seems to think more is going on than IBS. I would like to get tested for it just to make sure, and if it comes back normal, and everything else they might think is going on, I will probably just wait awhile and try and get tested for crohns again and see if it is finally showing some proof. I read in a medical journal that the average time to diagnosis for crohns is around 10 years! O.O

Thanks so much for the input! You have settled my mind, I have been quite worried about all of this this week. :)
 
Glad I helped in some small way.... bottom line is, if there's something wrong (which clearly there is) they will find it.... just non-textbook cases take time and are a problem and frustration for both Dr and patient..... of course its ultimately harder for the patients (and I think occassionally some doctors forget this, but hey we're all only human and it's very easy to be self absorbed at times).

Bottom line, try and keep positive, and just keep going! And take each day as it comes and if youre having a good and well day try not to dwell on the previous days illness, get out and enjoy yourself!!

xxx
 
Lulu, that's interesting about Addison's causing low sodium - my sodium levels are usually quite low! I can tell when they drop lower as that's when I tend to get dizzy & light-headed - a drop in sodium seems to equate a drop in blood pressure for me, and my BP is usually low on its own too. I don't know how far back you've read into this thread, but long story short I was tested last year for Addison's (the ACTH test). From what I read, baseline cortisol should be between 20 and 30 (I don't remember the unit of measure) and should double or triple by the end of the test. Well, mine started at 20 and rose to 28. So it started on the low end of normal and didn't rise as much as it should have. My GI and GP both decided that since it did rise, that I don't have Addison's. So, Dr. Lulu, in your professional opinion does that sound right to you? Should I be seeking a 3rd opinion from an endocrinologist? Do you think it's possible that I could have Addison's based on that test result?

I go back and forth wondering if I have Addison's or not. On one hand, it'd explain why all my bowel tests have come back normal, and now I know that it'd explain the low sodium too. I'm not sure if it'd explain some of my other symptoms though like the migraines and the joint pains. My flare-ups sure seem like pretty standard IBD flare-ups. I know that I respond to pred, which works on both Addison's and IBD - I also respond well to Entocort, which most likely wouldn't work on Addison's but would work on Crohn's and microscopic colitis (my GI thinks I most likely have one of those two). I just don't know - I guess my symptoms seem to fit IBD much better, but Addison's would explain a lot too. Either way I just want a diagnosis!

On that note, I found out recently that there's Addison's in my family too. My mom's cousin's son apparently has celiac and, according to him, he left it untreated/undiagnosed for too long (kept eating gluten) and that supposedly caused him to develop secondary Addison's. I didn't even know that could happen! It sounds a little fishy to me but that's what he said. There's a lot of celiac in that branch of the family tree but I've been told that celiac was definitely ruled out and I don't have it (breads & pastas are some of my safe foods so I don't have a gluten sensitivity either). But, that scares me - what if my undiagnosed illness goes untreated & undiagnosed for too long and triggers something else like what happened to my distant cousin! I don't want IBD and Addison's! I'd have to be on pred forever then and my bones would crumble away.

Allie, if I were you I'd go right to the GP. Make sure to print out some info on Addison's and bring it with you since some doctors aren't very familiar with it. Tell your doctor exactly why you think it might be Addison's and why you need to try the ACTH test. You might even want to ask for a low dose of pred to try - yes, it works for both Addison's and IBD, so if it works you won't really be any closer to figuring out which one you've got, but if it works for you then at least you know you have something autoimmune/inflammatory. That would rule out IBS definitely. From what I've read, lower doses of pred work better for Addison's. I believe 7.5 mg is the ideal dose for Addison's, because that's about how much cortisol a healthy person produces every day. I know that when I was on 10 mg, I felt absolutely fantastic. Your GP should be able to at least try you on a trial of pred so you can find out whether or not you respond to it. You'll probably have to ask for it and give specific reasons why, but if your GP is reasonable they should be open to a short trial of a low dose of pred.

And like you said, you should definitely get your bloodwork done and specifically sodium & potassium. Your GP should be able to run your cortisol level too - my understanding is, cortisol can fluctuate depending on the time of day and whether you've recently eaten and stuff like that, so just getting your cortisol tested right then & there won't be super accurate. But, that was what led me to getting the ACTH test - my GI had the brainstorm that this could be Addison's, and he had me go right to the lab in the clinic so they coud test my cortisol. It was low for that time of day, I guess (it was the afternoon and I think my cortisol was a 9? And that was a little low for lunchtime I guess). So based on that my GI thought it merited a closer look and he contacted my GP to order the ACTH test (apparently GIs, at least around here, are not usually allowed to order that test since it doesn't fall within their specialty, hence why my GP had to order it since GPs can do a much wider range of things).
 
Cat-a-Tonic said:
Lulu, that's interesting about Addison's causing low sodium - my sodium levels are usually quite low! I can tell when they drop lower as that's when I tend to get dizzy & light-headed - a drop in sodium seems to equate a drop in blood pressure for me, and my BP is usually low on its own too. I don't know how far back you've read into this thread, but long story short I was tested last year for Addison's (the ACTH test). From what I read, baseline cortisol should be between 20 and 30 (I don't remember the unit of measure) and should double or triple by the end of the test. Well, mine started at 20 and rose to 28. So it started on the low end of normal and didn't rise as much as it should have. My GI and GP both decided that since it did rise, that I don't have Addison's. So, Dr. Lulu, in your professional opinion does that sound right to you? Should I be seeking a 3rd opinion from an endocrinologist? Do you think it's possible that I could have Addison's based on that test result?

.
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Firstly, what you've had is a short synacthen test, as a newly qualified doctor I wouldnt begin to like to speculate on your results.... addisons is an insufficiency of cortisol... essentially steroids that your body makes naturally. It should rise for a normal result as the drug they give you in the test is a synthetic (man made) hormone that we all should make to stimulate the adrenal glands to produce steroids.... by how much your cortisol is supposed to rise exactly I honestly don't know as Ive literally only just qualified, but I have seen short synacthen results and they're often difficult to interpret, I had to have a very kind on call endocrinologist come to a ward once to explain a set of results to me cos myself and the other junior doctor were confused. But i will say that if you're concerned please please see your doctor for clarification and if you feel a second opinion is warranted you're within your right to ask for one.

Addisons has quite a set pattern of general results though, the low sodium means little without the high potassium in this case as far as my understanding goes.

Addisons as i mentioned above is quite serious though and most people with prolonged symptoms would have had an addisonian crisis and wound up in hospital and diagnosed.......

Now onto sodium and blood pressure/ fainting...... this is a complicated one to explain, but sodium is related to blood pressure and low sodium can cause fainting... but this is NOT addisons.... now I dont know honestly if you have addisons or not, but even if not, a low sodium in normal individuals leads to vasovagal syncope (simple faint) by a complex mechanism I wont bore you with.

I think your case (as so many peoples here) is very complicated and I would urge you to speak with your doctors who know your medical history inside out about ANY and ALL concerns you have, it's their job to explain your tests and conditions to you, you have a right to keep asking questions until you understand!!

Sorry if I havent helped much; I just dont know your case thoroughly enough to even begin to pass comment, but your docs DO know your case and even though I can see a lot of people, esp those having a hard time getting a diagnosis, are disillusioned with their docs, be it thru frustration or because of doctors lacking empathy, it is still their job to listen to you and it's more than their jobs worth to make a serious mistake so your concerns WILL be listened to and acted on!

xxxx
 
Thanks Lulu, that make sense I think. I believe my potassium has always been in the normal range and has never been high. I eat a fair amount of bananas so I would think that if I had high potassium, that'd just aggravate it. So I probably just have that syncope thing you talked about when I get low sodium & dizziness & low BP. My BP has always been low, that's normal for me, and early on in my illness I was told by a GP that my low sodium is most likely caused by frequent diarrhea. It seems weird to me that I'd have low sodium due to d but my other electrolytes are usually fine. Oh well, eating something salty usually makes me feel much better so I'll stick with that until I get diagnosed and figure out how to actually manage whatever illness I've got! ;)
 
Sodium balance is quite complicated... causes of low sodium are vast and it's all relative to the water in your blood - ie too much water in your blood can lower your sodium, and low sodium can lower water in your blood if there's more sodium outside your blood.... its complicated. When we assess patients with low sodium we do it in reference to if they have normal water, low water or high water in their blood.... I know I'm getting complicated... but sodium balance IS complicated (the hair tearing I had learning it for finals was FUN!!)

But yeah increasing salt intake has been known to improve symptoms in those prone to fainting!! Drink plenty too! :)

Hope you're feeling well today!

xxx

xxx
 
BTW Ive made it sound like water is measured in the blood; its not really as such. Assessing water balance is done clinically, you may have heard the term hypovolaemia - that means low water in the blood, hyper is high and eu is normal...... but patients volume status (water in blood) is assessed by examining them.... quite easily actually.....
 
So then I would imagine having frequent watery diarrhea would lower the water in my body/blood, right? So I'm probably losing both water and sodium when I'm flaring, but not necessarily at the same rate, and that would account for my BP dropping and the dizziness?
 
Argh - potentially, its awfully complicated to be honest, but yeah i guess if ur losing water from your blood you could be losing sodium too........ lol there are still some gaps in my knowledge, but i guess that's to be expected, that's why junior docs are so well supervised, the best place to learn now is on the job!!!

Sorry. God I feel so useless LOL

But if thats what your docs told you Id trust him/her...... there is no substitute for experience!!

xxx
 
Guys i finally figured out my issues. In april I went of most of my milk products, and now since Janruary i have been episode free. I still get quicky with my stomach but i feel a heck of alot better thanks to cuttin off my milk
 
How is everyone doing today?

Didn't make it out, woke up feeling really weak and out of it, don't know what is going on. Been sleeping alot of the time today and feel bad, worse than I have done for sure. I thought it may be withdrawal from the SSRI (since I was told to stop right away, and I double checked that, even asked if I should taper for a little while), but see below.

Had a bowel movement today which didn't look good, some black tarry stuff again and worse still what looked like white pus sitting on top of one piece (possibly mucus but it didn't look like the mucus I get).

If not feeling better Monday going to contact the out of hours Doctors service :( Even though I didn't think the meds were working I was concerned as not been unmedicated since 2007. Even though they weren't working lol. Didn't expect anything to happen so soon.
 
Star girl so sorry to hear you're having such a bad day.... I hope you improve really soon!!!

I dont think there's much more i can say to help other than hang in there!!

Thinking of you and hoping u get better v soon

xxxx
 
Star, so sorry to hear you're even more unwell. I hope you feel better soon! That's too bad that you weren't able to go to your friend's event today. I *hate* when this disease controls what we are able and not able to do! It just seems so unfair.

I was feeling a bit better this morning and even had a normal solid BM, so I decided to take the dog on a long walk. The dog park we usually go to is closed this weekend so I went to a park we hadn't been to before. A friend recommended this new dog park and she warned that it's very large. Well, I got too ambitious and walked to the far end of the park, and was exhausted! This park was absolutely huge! It was so difficult getting back to where I had parked the car. My dog and I were both completely wiped out after such a long walk! Fortunately, my body didn't decide to hit me with cramps or d until after I got home. I don't know what I would have done if I'd had to go when we were in the park, there were no bathrooms anywhere around! It was a very wooded park with many trees and tall grass, and I had wet wipes with me, so I guess if I had to I could have just squatted behind some trees... don't want to do that if I don't have to though!

So after the long walk I'm not feeling quite as well again. It doesn't help that my "time of the month" also just hit today so I think some of the cramping I'm having is from that. Going to rest up the rest of this evening and try to feel better again. I'm having friends visit tomorrow so we'll have to figure out something that we can all do (sitting in the house & chatting isn't an option, as one of the people coming is allergic to dogs & cats, and I have one of each - so we'll have to do something outside or somewhere besides my house).
 
Oh Cat, I hate that time of the month, having P pain and D pain really is intolerable! Luckily I am on the Pill which has helped my periods and I always take 2 packets together so have a bleed every 7th week which is much nicer than every month.

Still not doing good today. Slept until 1pm and now 50 minutes later I am ready to go back. Had a big pee so couldn't see bm in toilet but there was a spot of blood on the TP again. Tried eating a digestive biscuit but put it down after 2 bites, I really did try. Still feeling weak, out of it and I seem to be a whole new shade of pale.
 
Star, that sounds like a really bad flare. In my worst flares I get so pale that I look like I'm dead. I actually scare myself when I look in the mirror. And in my very first flare, which was the worst one I've been through, I did just what you described - I tried eating a cracker, but put it down after one bite. And the one bite I did take, I had to clamp my hand over my mouth to keep from spitting it out or throwing it up, because my body really did not want any food and it was a battle of wills to keep it in my mouth let alone my stomach. At that point in my flare I was really dehydrated, although you mentioned a big pee so it sounds like you're not dehydrated. Still, if this gets any worse, or especially if you get new symptoms like vomiting or fever, please do go to the emergency room (I think it's called A&E in the UK?). Flares like this are so miserable and you shouldn't have to just suffer through it. During my first flare when I couldn't eat the cracker, I finally went to urgent care and got IV fluids and nausea meds, and I felt a lot better just with those. That helped me get to the point where I could at least eat and sleep a little, and that helped me get my strength and color back.

I'm still crampy and not feeling great myself. To top it off I started getting a headache last night. Whenever I go to bed with a headache, it's always worse when I wake up. But for some reason I always seem to think that sleeping will make my head feel better, even though at this point I really should know better. So I went to sleep without taking anything for my headache, and of course it's much worse now. And of course I have to clean up my house because I have visitors coming in a few hours. Urgh. I even got ambitious and promised to bake them cookies! What was I thinking?? So, I'm off to clean and bake. Wish me luck, I will definitely need it to get through this day! ;)
 
Good luck Cat! Make sure you rest afterwards.

You're quite right, this could indeed be a flare, but the ones I have have been different to what is going on now. Like, I get quite tired, can't keep any food in and even a sip of water sets it off. That is pretty much it usually.

Maybe it's a new kind of flare, that is something to think on certainly.

I am keeping an eye on my temperature, and if I vomited I would certainly go to A&E as vomiting is very, very unusual for me, even as a kid. Typically it goes out the other end!!
 
How are you today, Star? Better I hope. Did you contact the doctor today? I think you said it's a bank holiday there today - it's a holiday here too, Memorial Day. I hope you were able to get ahold of a doctor today, or are able to get to one tomorrow.

I'm doing pretty well today. Have spent most of the day inside resting. It's very warm here today, 90 degrees (fahrenheit) and very humid, so I'm sitting in the air conditioning and resting up. I did walk the dog but did that very early as I knew it was going to get hot out, and haven't left the house since then. Just having a nice lazy day. I hope everyone else is feeling better too and had a nice holiday/day off!
 
Cat, I'm sorry to hear you are just feeling better. But, you are feeling better, well as of yesterday. I hope that is continuing.

Star, how are you?

How is everyone else? Looks like its been quiet around here. I hope that's a good thing.

I have been MIA. I feel I should explain. I talked with a dear friend yesterday. It was the first time we had been together since I found out it is probably Crohn's. She had questions, but mainly she let me talk and just listened. I have realized I was too caught up in this. My mind was rambling. I was getting too deep into the what ifs, how will I ever get diagnosed, will I ever get diagnosed, why isn't this bastardly disease not showing itself...basically just getting way too stressed and anxious. I had to pull back for a bit. I hate that so many here aren't diagnosed, and after so many years and struggles. Part of me feels this would have been the best place, but I had to get Crohn's out of my head for a couple days. Plus, with a bland diet I was feeling pretty good. I'm still coming down from my flare, i.e., pain and referred symptoms. But my bowels are good. I was feeling better and thus I didn't think I needed to be here, for me at least. I'm sorry that I wasn't here to support those that needed it.

I got "cocky" this weekend and had movie theater popcorn. No no food and I knew it. I felt it almost immediately, but with the bland diet the hit wasn't bad. I'm in more pain today, an obvious indicator its still working on me. I also have more bumps on my skin, one of my symptoms. My bowels are churning a bit today, but so far no d. Yay!

I think I am bored with the bland diet foods, but I know it is what I have to do. My body is still too sensitive. I got my tattoo finished last Thursday and it hurt sooooooooo bad. I've never had one hurt like this. It still does. My tattoo guy (a friend) said you want to cry, don't you? I said yes but I wasn't going to. I also told him my body is just in such a flare and everything hurts it right now. Heck, just walking the dogs in our yard to potty hurts some days. And by the way, I'm not covered in tats. I just have a few small ones. This last one is the biggest yet, and my most favorite.

I'll be offline Friday and Saturday as I have 2 biiiiiiiiiiiiiiiiiiiiiiiiiiiig orders to fill. I have to make about 22 dozen! Holey moley what did I get myself into? It's so hot here, in the 90s. I hope to avoid the heat as much as possible. My body does not like it at all.

Any way, enough about me. I hope everyone has a good day and week.
 
Star and Cat, I hope you guys are feeling better!

Meg, I completely understand having to kind of abandon the stress of trying to figure all this out for a little while. We all need a breather sometimes. :) I had popcorn this weekend too, knowing it wasn't going to end well.

I also was so busy this weekend with my husband..he wanted to do anything and everything! Every day I would hit a wall where I was too tired to continue and he would get upset, not at me but at the fact that I have so much less energy than he does. I hated to disappointed him too, and I tried my best this weekend! I spent almost all day in bed today recovering. >.<
 
Ugh, getting icky! Why have I strayed to possibly unsafe foods? Okay, the downright unsafe food of popcorn. I am not feeling good. I haven't felt this way in a couple weeks. I really hope I can wrangle this and keep a flare at bay. I'm going to go home and finish my laundry and go to bed. Only 30 more minutes of work. Ick!
 
Sorry for another post so quickly, but I have a question. This involves the female anatomy. I have felt something, like a pinch in the underlying tissue, right around my clitoris for a couple weeks now. I have had just a few small instances of deep pelvic pain just above. My pain is always in my lrq. Is this something I should ask my gyne to look at via ultrasound? If I had a fissure wouldn't it have shown up in colonoscopy? Is this something to worry about at all?

I'm getting good at listening to my body and I know something is amuck. It really feels like something is out of place, pinched, or ????
 
I also can't believe I just put something out on the internet about that particular body part. I'm such a prude! : )
 
quirkysoul said:
I also can't believe I just put something out on the internet about that particular body part. I'm such a prude! : )
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I'm sorry, I can't help you with this...but thank you for a good giggle !
I needed one today ! :ylol:

I hope your popcorn passes quickly....stay away from that stuff girl! I don't even think it's good for "healthy" people to eat it most of the time !:ybatty:
:ghug:
 
Meg, I'm not sure about the issue you just described, but I know that endometriosis is pretty common with IBD - maybe your new pain could be related to that? I don't have endos as far as I know but I know that a few ladies on the forum (Joan/Astra101 for sure) have experienced that, so you might want to ask around or post that question in the "girls only" part of the forum (PM one of the admins if you don't already have the password). Sorry I can't be more help there, I haven't had pain like that myself.

And oh my goodness, Allie and Meg, you two are living dangerously eating that popcorn! When I go to the movies I always sneak in a ton of candy and even Ensure in my purse so that I won't be too tempted by the smell of popcorn in the theater. I don't know if there are any crohnies that can eat popcorn, that stuff is just the worst! My hubby stubbornly insists on eating it when he feels that he needs some fiber, and I usually need to leave the room when he's making/eating the popcorn. His diet is about to change too though - he has a procedure scheduled for this Thursday to remove his kidney stones. Once the stones are out, his urologist is going to analyze what they're comprised of and will then tell hubby what to cut out of his diet to avoid future stones. So that'll be interesting, especially if suddenly hubby and I aren't able to eat the same things together. He's been eating a lot of the bland stuff that I eat and that's been working pretty well for both of us - he even started drinking Ensure on the days when his stones give him nausea! So it'll be yet another learning curve to figure out what he can & can't eat to prevent more kidney stones.

Wow, that was a rambling paragraph, ha ha. I hope everyone recovers from the popcorn and feels much better very soon! Personally I'm doing okay again today - it seems to go back and forth, one day I'll be feeling unwell and then when I'm on the mend hubby's stones give him more pain. So right now he's doing pretty bad - he was up all night last night in pain and vomited quite a bit. Can't wait till Thursday so that he can be all better and then he can concentrate on taking care of me! ;)
 
Good luck to your Mr. Tom Cat Cat. Tee hee, that's confusing. I hope he feels all better.

Yeah, it was silly of me. I knew better. I had a total hysterectomy at 26. I did have endo. I suppose I could have some more somewhere. I'll call my gyne tomorrow. This is a one day good next day bad disease.
 
After so much sleep Sunday I started to feel a bit better so didn't phone the Drs. Still couldn't eat until today though.

I think it must have been a flare, just not the kind I am used to. Having 1-3 a year (alongside daily "normal" problems) I was not happy to have another just a few weeks after the last one, when my last but one was xmas 2010.

And having seen yet another Pill Cam diagnosis on here I am mad as hell, and upset that I had mine cancelled. Why they booked it in for me when there was doubt over funding I do not know, made the upset so much worse. A week now since FBC was done again and not heard that anything was amiss so guess somehow I am still not aneamic and therefore eligible for funding for the test. Going to ask Rheumy in July to measure it again and also vitamin levels since GI told me to come off multi vitamin last week. My only way of getting vitamins into me, gone, but those were his orders. :ybatty:

Going to be approaching the complaints service soon for a meeting on the 16th June as wanted to set a date to feel something is happening. And Mum needs notice to organise time off work (of which I have taken up so much of :( )

If there was a way I could just give up I would take it with both hands. Now seriously considering an immunosuppressant trial that Rheumy wants. I don't really want it as how can I live not knowing what is wrong (or continue my benefit claim realistically) but the alternative is months, even years more of being in this state. No easy was it seems.
 
I think I am headed into another flare. I have slept almost 10 hours the last 2 nights and I am still so exhausted. I'm eating a bland diet but my bowels are still unhappy. The pain in my body, other areas like arthritic and fibromyalgia, are getting worse. I am very irritable and even cried at work after 2 very hard calls right in a row. I'm itching all over and my red cheeks are worse.

The only thing I can think is the popcorn Monday and/or the cottage cheese with canned fruit last night and today.
 
Really sorry to hear that (hugs), the joints I have problems with have been giving me merry hell the last few days! Sneezing is the most painful thing to do right now for my shoulder and back.

Seem to be regressing to pre-meds days which isn't unexpected. Way back in 2006 before any meds I could only keep food in at lunchtime, and think I will have to change to eating at lunchtime only.

Had small lunch yesterday which was fine, then small dinner which wasn't. Today I had no appetite but around 6:30 pm thought I should have something and didn't go well again. So will stick to lunch only and see how that goes.
 
Meg, so sorry to hear you're flaring again! :( I get really emotional and cry at the drop of a hat when I flare too. I hope you're able to get through this quickly and feel better soon! I hear you on the joint pains, too. I just had my 2nd appointment with my physical therapist because I've got hip arthritis. I had told her at my first appointment that I believe my arthritis might be related to my gut illness. She apparently had never heard of a link between IBD and arthritis before, so she did a bunch of googling, and at my 2nd appointment she said that I am right and that she didn't know that IBD can cause arthritis/joint aches. She documented everything in my file and sent it to my GP and GI, basically stating that she also feels my arthritis could be related to my gut problems. It's good to have another medical professional on my side, even if she isn't a doctor. So if you have arthritis, try to get to PT. My GP referred me to PT. I feel like the exercises are helping my hip feel better too.

Star, you're having joint pains too! It seems like we all seem to have similar issues at similar times around here. I hope you're able to feel better soon too. Have you ever done physical therapy? And that sucks that you're down to one meal a day now. I personally can't eat breakfast or I get very nauseous and it goes right through me. So I try to have an Ensure in the mornings so that I get some calories and nutrients. It doesn't make me nauseous like solid food does at that time of morning.

Oh, and Star, you mentioned in another post that your rheumy is thinking of putting you on immunosupressants? Something like Imuran or 6mp might help your intestines - if I were you I'd at least give it a try, the worst it can do it not work, right? I mean, if you've got IBD, your immune system is already out of whack, so immunosupressants wouldn't do a whole lot of harm there that hasn't already been done, I would think. And they may ease your symptoms and help you feel better - in which case, I think you'd have more evidence to say that it is an IBD since it responded positively to an IBD drug. Just my two cents, if it were me I'd jump at the chance to try immunosupressants.

Well, hubby had his kidney stone procedure yesterday and is on the mend. He had a ton of pain afterwards and was peeing blood yesterday, but that all seems to have cleared up today and he's doing a lot better. Weirdly, the hospital we go to apparently puts kidney stone patients in the same recovery area as the colonoscopy & GI patients. So I actually ran into my GI yesterday! He saw me sitting in the recovery room next to hubby and popped in to see what was going on. He was concerned that hubby was also having GI issues since we were in that recovery area. I told him about hubby's kidney stones, and I said that it's my turn for once to be the healthy one. In all honesty the stress of worrying about hubby during his surgery (he was under general anesthesia, which is a little scary) made my guts into a big grumbly mess, but I didn't tell my GI that. I was happy to not be the patient for once. Although it's harder than it looks to care for and worry about a loved one who is ill and in pain! I don't like being on both sides of it like that, I can just about deal with one or the other but not both.

On the plus side, I feel like hubby understands a lot better about the pain & symptoms that I go through, and I think that after this kidney stone experience he's better mentally equipped now to help take care of me when I flare.
 
Yeah the joint issues are what led me back to the Hospital and eventually Gastro!

I had a PT referral in September last year and still waiting for any kind of appointment. Actually I am too ill now to undertake PT so as soon as it comes through I will cancel.

Rheumy asked me to consider a trial of immunosuppressants yes, suggested a 6 month trial of Methotrexate. I'm between a rock and a hard place. I could get better for a little while or a long while, but would not know what was wrong, if it would come back, could I pass it onto kids etc and state benefit support would be difficult without a diagnosis. Or I can be very ill for goodness knows how long seeking an answer which right now I feel I won't get.

So I think by the time I see Rheumy I will tell him I am considering it more seriously but need some more time and ask to go back in a couple of months. I don't think the upper endoscopy will be done by the time I see him next anyway. Always a teeny tiny chance one day a test will confirm something!

I did email GI today and found out he is on leave, back next week (wanted to state passed blood 3 times in a week). So maybe my bloods did come back abnornmal after all and no-one has read them yet.

Tried a small dinner since I was hungry and it did stay in longer than normal. But still didn't really stay in. Last time this happened I took 4-6 lopermide a day to keep food in but that isn't something i want to do again, if there is a weight loss the more the better since that would be yet another red flag on my symptoms.

Also letter requesting complaints service meeting is going out at the weekend. If nothing else I will change GI's in the hope of getting someone more open minded, even though they all want to cover themselves from a misdiagnosis claim, and so say IBS like that cosy little meeting they had when they changed test results to suit them. :voodoo:
 
Star, honestly I think you should reconsider physical therapy. When I first went, my therapist asked me all sorts of questions about my fitness level and other health issues, and I told her all about my probable IBD, and she put together a few simple exercises that I can do that don't wear me out or hurt my tummy or anything like that. I do some stretching and a few simple things like 10 reps of leg lifts to help strengthen my hips. It's exercises that I can do even on a bad day, plus my therapist also loosens up my bad hip when I see her which seems to help a lot too. It's not like hard physical exertion, not by a long shot.

So you should get your blood work results back on Monday? Good luck, let us know if you find anything out. Did you get your CRP tested again?
 
Star, if you trial immunosupps and have IBD then it would improve as would your joints. If you feel better surely that is all you want. You may not then need to go through the hassle of continued state benefit so you would be a winner all around.

You would then also know if your GI symps are autoimmune or not as well. Lots of positives and very few negatives, feeling better is worth a shot?
 
I wanted to try PT I really did, but now I am in such a state that it's very hard to leave the house most days so I am just not up to it, they have taken so long. Any set appointment is so hard and I avoid them if I possibly can.

My GI is back on Monday but more likely I won't get my results until July 20th when I see Rheumy and yep I asked for the CRP to be done again. In future I am going to ask that copies of all results go to GP to stop this silly waiting. All they are doing is sitting on a Hospital computer and I can't get them!

Feeling better is worth a shot, but to me as I said right now the price seems too high. What if I spend my life childless mistakenly thinking I would pass on problems/ they will come back, or have kids thinking I won't and suddenly they or I am ill again. I'm at the age where I have to think long term here and not just short term.

Or I could get better for awhile, get a job and then have to start the whole merry-go-round of benefits again if I got worse again. I don't have a partner to support me or a reasonable safety net, I live at home still with a Mum who works very hard for very little money. I also have no idea what will happen with my chronic fatigue even if these problems go. I think it very unlikely it will revert to pre-problems, 5 years worth of damage to that has occured. So i could end up a bit better, but not better enough to work, and getting benefits with no diagnosis would be nearly impossible these days. The CFS/ME wouldn't be enough i assure you and I'm not able to access a specialist for that either to help me out a bit there.

To me I am in between a rock an a hard place. Life has taught me never to assume just the good side will occur, and to be realistic (some may say pessimistic!) about what might happen.
 
Well, as I have a sickness bug right now postponed my breath test for 2 weeks. Am more exhausted and wiped out, didn't think such a thing were possible lol.

Also came up with a possible solution to my dilemma. Rather than a long course of immunosuppressants which won't lead to any answers, I think I will ask Rheumy, new GI or GP for a short course of Pred. If it works, it's not IBS!

Paperwork for complaints service meeting being posted tomorrow :)
 
Starr, good luck. I say take the immunosuppressants. If they're offering, they must think you truly have IBD. From what I know, IBS patients do not even get an offer. You would feel better.

I got poison ivy over the weekend. I cut one strip of grass by a bed of it that I can't remove. I'm very sensitive. Well, it's in my eye and sweat caused an outbreak in another sensitive area. I got a cortisone shot yesterday and prednisone. My bowels are better just wity 4 doses, so much that I had some creamed corn and a small (couple spoonfuls) of baked beans yesterday. Only a little d last night. But, I have very bad redness, and painful, on my face. I am going to a gp in my group tomorrow. I had redness from past prednisone treatments for asthma that never went away and now the flush is back with a vengeance. I fear I may now have rosacea.

I did get my FMLA paperwork in to my HR lady, so I'm covered. The doc put in my possible diagnosis Celiac (ruled out), Crohn's or autoimmune gastritis. NOTHING OF IBS!!!!!!!!!!!!!!!!!! Yaaaaaaaaaaaaaaay!!!!!!!!!!!!!!!!!! All my tests are covered now as I have hit my out of pocket (I am 99% sure) so I will do more tests, but I am prepared to hear normal results. But, I know tt has to be Crohn's. It explains my whole life. I am acting as if and dealing with it.

I realized today that I don't really crave sugar that much and it is even almost gross to me now. I still eat it, like birthday cake, but I am not eating much. I couldn't say that a few months ago.

Sorry that was a rambling post.

How is everyone? Allie, how are you dear one? Cat? Is your flare under control officially? Is the weather being nice to everyone? Indiana is in the 90's all week!
 
I agree with Meg Star, you should try the immunosuppressants. I know that might make it where you might not get a diagnosis, BUT if it works they know its not IBS. After 6 years I havent ever been offered something like that, and I really wish I had been!

Meg, the weather here isn't too bad! I'm from GA so this weather is nice (highs in the 70's). :) Thats great that they aren't passing it off as IBS and that the pred helped your tummy. :)

Sorry I haven't talked much lately! I keep up just didn't really have much to say lol.

I am pretty much the same. I am now on nortryptiline three times a day and I can tell its making me worse, not better. As the dose increases each week, my pain is getting better (my worse days are a 7 ish when they used to be a 9), but the D is much worse. Last Friday I ate healthy including watermelon and an apple, and ever since I have been having watery D, no form at all. Today I had two "explosions" as you will and my pain is much higher than it has been lately. Another thing the nortryptiline is doing is causing insomnia. I wake up at 4 or 5 every day, and I don't feel like going to bed until 1 or 2...I try to get more sleep, but I end up just waking up every hour until I give up, and then I just feel like a loser for sleeping till 10 or 11. :p

The trouble with taking nortryptiline three times a day, throughout the day, is there is very little windows where I could take pain meds if I really need them, since the pain med I am prescribed cannot be mixed with it. They both mess with the saratonin levels in your brain, and you can go into shock if you aren't careful. >.<

My husband has been gone for a field excercise since last Wednesday, and I have been extremely emotional about it. We have been long distance most of our relationship, and it has always gotten to me. He is dead set on getting out of the Army though, and my gut feeling is to stay in. The main issue would be I would lose my health insurance until we settled back in in the states. I'm just surprised he wants to do that after the 6 years of working hard to get where he is today! Oh and our anniversary is coming up, we will be married for one year on Saturday. :) Which also makes it one year since I got ill enough to make a huge difference in my life, well, the end of this month anyway.

I hope everyone either A) starts to feel better or B) stays better!
 
Star, good luck with the starting the complaint process! And sorry to hear you've got a bug, that's always so miserable on top of our usual symptoms. When I was on Entocort, that really seemed to lower my immune system and I got every cold and flu going. I have 2 nieces and 2 nephews, all age 7 and under, and every time I see those kids I always seem to catch a bug from one of them. They gave me a bad cold at Thanksgiving and the flu at xmas. Yuck! Although I have noticed that before I was on Entocort, and now that I'm off of it, I really don't catch bugs easily. I am guessing that means that I do have an autoimmune illness, and my immune system is always "on" or running differently/at a higher rate than normal immune systems, so it takes care of any viruses before I feel anny symptoms? Just my guess.

Oh, and Star, I also wanted to wish you good luck with the pred or the immunosuppressants or whatever you do decide to pursue. Pred worked wonders for me - the first time I took it, I literally started feeling better within about an hour of taking the first pill, and by the second day my symptoms were barely there. However, I'm still not diagnosed, so even if pred works for you it might not put you much closer to a diagnosis, although it definitely will rule out IBS and narrow down the list of potential suspects. And of course pred works much more quickly than immunosupressants would. Having said that, if I were you I wouldn't totally write off trying the immunosupressants, yet. Keep it in mind, especially since it's been offered to you. Most of us undiagnosed folks don't get the chance to try a treatment like that and I know I would jump at the chance!

Meg, so glad to hear that pred helps you too although that sucks about the thrush/rosacea. I haven't had that reaction to pred myself but I know others have on the forum, you might want to do a search or start a new thread and see what others have done for pred thrush. And, so so exciting that your doctor isn't thinking you have IBS! My GP did the same thing on my Family Medical Leave paperwork, he put down that I have "Inflammatory Bowel Disease / Colitis". It's exciting to have an actual doctor put something like that down in writing, isn't it? Even if it isn't a firm diagnosis, it's nice to know that at least one doctor is on your side and is taking you seriously. :)

And Meg, in response to your other questions, I don't feel at all like I'm flaring anymore - in fact, I have only had ONE poo today and it was fairly formed and solid. Pretty amazing considering that my home life has been a bit stressful lately! My brother, who lives with us, has been driving me crazy lately but I think I'll save that vent for a new thread. And besides that, I've been taking care of my hubby as he just had his kidney stone surgery last Thursday and isn't feeling much better than he was before. They put a tiny scope up his urethra and zapped the stone with a laser, then put in a temporary stent so that the leftover bits and pieces of stone can be passed out. But the stent is causing him almost as much pain and symptoms (bloody urine) as the stone was! He gets the stent out on Friday so hopefully he'll finally be better by then. But in the meantime, I'm trying to pick up the slack because I'm actually the less-sick spouse for a change. Hubby is too weak and in pain to do certain things around the house, so I actually tried to mow the lawn on Saturday because he couldn't. Hah! That was a joke. I did most of the backyard but I got so overheated (it's also in the 90s here and super humid!) and tired that I could not finish. I felt like such a wimp! We have a kind of hilly yard, and a manual push mower, and it was so hard to move the stupid thing uphill. Sometimes overexerting myself can cause d and symptoms, but I seem to have dodged the bullet there.

Allie, sorry to hear the nortryptilline isn't helping. I'm not familiar with that one, is that an anti-depressant? And I know what you mean about hating your husband being away for long periods of time. When I first met my hubby, he was living in Chicago and I was 3+ hours away in Wisconsin. We'd usually get together every other weekend, so nearly 2 weeks would go by where we wouldn't see each other. For awhile he didn't have a cell phone (we were both poor students, I was in college and he was in art school) so he'd call me every few days from a pay phone! This was back in the days when most internet was dial-up and he didn't have a home phone line either for awhile, so I couldn't easily get ahold of him online nor by phone if I had to. He could email me from his school or call from the pay phone and that was it! And since we met early on in our freshman year, we did the long-distance dating thing for almost 4 full years, and got married and moved in together after we both graduated. It definitely taught me that our relationship is strong! But I'd never want to do the long-distance thing again, it's tough!

Allie, when do you see your doctor again? I'm assuming that when you do, you're going to pursue the Addison's testing further? And Meg, you mentioned that you're able to have more tests now due to maxing out your deductible - what's next on the testing front for you?

As for me, I have a GI appointment on the 20th of this month and I am really not sure what I'm going to pursue at that appointment. I've been feeling fairly well recently and I'm not sure that anything would show up on a test. But then again, it usually takes several months to get a test appointment, and I've maxed out my deductible for this year as well (although I have to pay a 20% copay after I meet my deductible, so it's not like every test will be totally free now). So I'm on the fence - do I schedule tests, hoping that I'll feel worse by the time it actually happens? Or do I hold off and wait until I feel horrible again, knowing that I'll have to put up with feeling horrible for a few months waiting for an appointment and a test? What do you guys think?
 
It seems lots of us have decisions to make!

I will continue to consider the immunosuppressants but Rheumy (not GI) has only offered since tests so far (after GI had the WBC scan changed and they can't pinpoint source of raised CRP) are normal yet clearly I am not well. I just feel like they won't get me anywhere and things are just too complicated, the situation is not black and white here which I am sure you will understand. Will think about the pred too. If the immunosuppressants worked then they would still say IBS, just IBS caused by a non specific auto immune problem.
Right now I really don't know what to do, it's so difficult. Maybe the upper endo will show something when I finally have it. Or maybe I will still be stuck between a rock and a hard place!
 
hello fellow undiagnosed,
I posted a wee while ago here, been sick for a while, esepcially the last 6 months and chron's is suspected.....finally have my colonoscopy tomorrow, been feeling particularly grotty last couple of weeks with joint pain in particular so keen as to get this done. So I'm on my way out to get my ice blocks and pico prep, I think I have a long night on the bog ahead of me! Wish me luck!
 
Cat, yes nortryptiline is the same group as antidepressants as amitryptiline. I'm on 75mg instead of the 25mg I was on with the amitryptiline. Yuck. :( My next appt is on the 21st, and yeah, we are going to ask about Addisons. I'm throwing everything I can at this supposedly "IBS" and nothing is working. I'm even taking probiotics, which usually helps, but I'm still hurting and getting worse. I would love to just give up and stop taking medications, but I guess I am past that point now!

Its good that you are feeling better Cat, except for the part with the tests. IF I were you it might be good to get the tests if its been awhile since you had them. If this doesn't get better and I am still stuck around a year from now my GI suggests I get all the tests over again. Which is always good that he shows me that he still wants to make sure everything is ok.

Soretum, good luck with your colonoscopy! The prep is the worst part, then its all downhill from there! I really hope it shows the problem.
 
I'm so sorry to hear that Allie! I really hope that your body regulates itself. I hate the adjustment period on new meds. Sometimes the side effects are so much worse than the original condition. Good luck. Happy one year! Will he be home for that? I hope so. I really hope you can enjoy your special day.

Cat, I'm glad to hear you are much improved but sad that hubs is still in so much pain. I hope the stint removal is just what he needs and this is over with. Mowing grass last week wore me out and it only took 25 minutes. And that was at 9 am and not that warm yet. Be careful with yourself. Pay someone if you have to. Be careful!

Good luck star!

Hi Soretum. Love your name! So cute. Good luck and I hope you improve.

I am going to a doc today at 3:30. I know pred is helping my tummy as I had ice cream for dinner. I know I know. My throat has been sore, think I have a touch of poison ivy in there. My mom was involved in a bad car accident yesterday afternoon. She's ok but hit 3 cars and a tree. She didn't flip and didn't have her seat belt on, so it could have been so much worse. And no one is really hurt from what we know. So, I was eating on the run and emotionally. I did have to take a lomitil last night. But, the pred is keeping so much at bay. My lips are starting to crack on the outer edges. I think that's a sign of Crohns. I won't be seeign my doc today, but believe you me I will make sure that this doc knows I am highly suspect for Crohn's and that the pred is helping, even though I am reacting poorly to it skinwise. I want to make sure every doc I see knows and maybe between them all, I might get a diagnosis. And yes Cat, is good to see it in writing. That felt so good when I read that!
 
Hi all,

Have posted in the new members area but wanted to say a quick hello here as I'm 'undiagnosed' with the symptoms from the last 6-12 months, though was diagosed with iBS around 10 years ago. For the last year it's got ten times worse and now suffering every day with pain, bloating, awful BM's, etc etc.

I am having a colonoscopy tomorrow and dreading it. Taking CitraFleet today which hasn't done a lot yet... I'm still waiting for the fury to unleash itself! Just taken the second of 2 sachets so maybe things will 'get moving' now??

Look forward to hearing from you all but sad that you're all suffering too.

Penguin x
 
Good luck Penguin! I hope they find something they can treat to help ease your suffering. Good luck with the prep. I had mine the 19th and I can still remember that day like it was yesterday. Ick!
 
Thanks quirkysoul :) it didn't taste too bad, was like fizzy lemon, has made me terribly bloated however. From what I've read it worked very quickly for most people ,but for me it's been 7 hours since the first sachet and only a couple of BM's... I expect it shall be a long night instead!

I've been on many meds so far and combinations, none of which have worked, so I hope tomorrow will be the first step to finding out more, or at least ruling things out. Even after 3 children though I'm still dreading tomorrow, the pain and mostly the sedation... last time I had that for having a wisdom tooth out I had a panic attack so I'm a bit apprehensive. Be nice if they could knock me out totally!

x
 
Penguin,

Have you been eating a bland diet recently? You may not have as much in you. I had d very quick, but only had to do one SuPrep dose since it cleaned me out. I had been on a bland diet for about a week at that point.

The meds they give you knock you out within a mere couple seconds and you wake up not knowing that time had passed. They're AWESOME!
 
I ate a fair amount yesterday, was a bit naughty and had a chinese and an ice cream for afters, felt like it was the last meal so my boyfriend treated me. Mostly my diet is quite bland though as I try to avoid things which may make me worse, such as wheat and bread. Doesn't always make much differece, but I try. I think I expected today to be so much worse so I'm now feeling a little confused. I don't want to turn up tomorrow not 'cleansed' enough and have to reshedual.

Thank you for the reassurance about the sedation medication, I hope I just drift off and wake up all done!

x
 
Hi again Soretum and good luck on your scope! Penguin, welcome and good luck to you as well! As everyone else has said, the prep is the worst part and the rest is not too bad. My experience was that I felt like I was completely knocked out, and I woke up feeling great with no memory of the procedure. I farted quite a bit (they pump air into your colon during the scope) and had a bit of pain the next day, which was probably due to gas and/or because they took about a dozen biopsies from me. But after that I felt fine - well, as fine as one can feel with an illness like this anyway! To both of you, feel free to ask any questions and keep us posted on how it goes! Hoping you both get some answers! Fingers crossed for you!

Allie, that's another thing I'm not sure of, if I do decide to ask my GI for more tests - which ones to ask for! It's been over a year since my first colonoscopy, and it's been about 10 months since my upper endoscopy. It might be worthwhile to repeat those. I haven't yet had SBFT or MRI-enterography, so I should probably have one or both of those as well. I just don't know. I guess the MRI would show a lot of detail and I think it would see narrowing or scar tissue, I think that one would see more detail than SBFT at any rate. I just don't know. I am leaning towards waiting a few more months before scheduling any tests, just because I've been feeling mostly okay lately and am not sure it'd be worth the $$ cost and going through prep and having to take time off of work. Just thinking about all that makes me feel exhausted!

Meg, sorry to hear about your mother's car accident and I'm glad she's okay! That must have been really scary and stressful. Glad to hear that the pred is mostly keeping everything in check. I think Allie mentioned having cracked lips at the edges too, and I believe she said it's likely due to a vitamin deficiency of some sort. So when you're at the doctor today, make sure to mention that and see if they can do some bloodwork to check your vitamin levels. I know most crohnies tend to have deficiencies in things like B12, d, folic acid or folate (not sure if there's a difference?), and iron. Good luck, let us know how it goes at the doctor today.
 
I was told to stop the pred. I wondered if I had a uti. Nope but my glucose was way high. Turns out I was 329! I'm on insulin for a week when needed. After dinner and 2 units I'm 180-200. My a1c is up a bit since 3/22. I hope its just the pred.

I can't help but think its the bland diet. But I can't eat normal yet. I am getting so sick of all this. It just seems to be one thing after another. I need to see a dermatologist as I probably do have rosacea. It's all overwhelming right now. But yet its adding up more and more to be crohns.
 
quirky...are you already a diabetic ?
Those numbers are really high!
My FIL is insulin dependent diabetic, and high doses of prednisone(anything over around 20mg) will send his sugars sky rocketing !

I hope you get some answers quick! Take it easy :)
 
I've been suspect type 2 since march. Numbers never this high. Parents are both 2's and insulin dependent but don't eat great. I'm hoping this is just situational.

Thx Mom. I'm adopting you. :)
 
hi all,

colonoscopy all done and looks like I can check out of the undiagnosed club.....severe inflammation likely chron's colitis. Feeling devestated but also feeling lucky to have a definitive diagnosis, was so terrified it would be inconclusive... am starting pentasa and pred straight away, likely to start on azathroprin in a month or so....couldn't get too far with the scope due to loopy bowel and man it hurt!! So having a MRI at some point as well.

On the up side the whole experience has been almost pleasent, staff were all fantastic, consultant is one of the best and since I work in the ICU at the hospital they give extra special care and move things as fast as is possible in the public system....finally a perk to the job! Even the prep was fine, so easy I wondered if I was doing something wrong! Haven't been eating much so probably wasn't much to come out anyway but holy cow that stuff tastes like shit.

So I wish you all the best of luck with your journeys, I cant imagine how it must be to feel as awful as we do with this and to be told your fine, was one of my biggest fears.

Annaxx
 
Sorry you're not feeling so well at the moment Quirky, I hope they can get on top of it soon x

Big hugs Anna, I'm glad you fianlly have a diagnosis, although of course it would be nice to have nothing wrong at all.

I'm glad your experience isn't too bad Marrie! My prep went very smoothly too, a lot less than I was expecting! I'm off for my colonoscopy in a couple of hours x
 
Penguin good luck, it's really not that bad...the drugs didn't really knock me out and can remember most of it but they definitly chilled me and it was all no big deal....Marrie has reposted some of my post there! Not sure how thats happened but yes, the prep was a complete doddle....thank god!
 
I thought it was slightly random but wasn't sure so replied all the same! Has it all sunk in yet? X
 
Mixed feelings then, glad to be diagnosed but obviously not glad in other ways (((hugs))). Glad the prep was ok for you and good luck Penguin!

I am feeling much better after sickness bug, normal problems back which is a good sign. Emailed my GI last week (he was away but returned on Monday) since I don't now want the bother of a local dietician appointment if I am going to London for the same, albeit specialist advice, and want to cancel. Also to say I am now passing blood 1-3 times a week.

And guess what i've heard back.... a big fat nothing :mad: :voodoo:

Shoulder/shoulder blade is being a right royal pain again and no pain killers since I am barely eating :(
 
I'm sorry you are still not feeling 100% star. :(

Meg, my husband does get to be here for our Anniversary. :) He gets home Friday night and we are going to get to spend the whole day together on Saturday. :) My parents are flying in tomorrow, which is also exciting. I am traveling with them all next week, so my husband and I will be apart again, but then we are flying to England together (this will be the first time we are on an airplane together lol) for our own vacaton.

Soretum, I am so glad they found what was wrong and that they have started treatment. It sucks that it has to be crohns, but atleast you have an answer!

I am currently not feeing well at all. I havent seen a formed stool in a week now, and I think I am dehydrated. I feel drunk and woozy, and very weak. I am still trying to figure out if I am going to pursue the Addisons or not...I am tired of looking, tired of all these medications, and on top of it I dont want my doctor(s) to think I am just trying to gain attention by all this searching. Addisons does fit though...my dog scratched me a little while ago, and the scar is very dark, like I tanned there. And my husband keeps telling me that the skin around my eyes is really dark, like I've got two black eyes. I just dont know if I have the strength to pursue another possibility and still be told "oh its IBS, you are fine".
 
Anna Soretum, I am so sad that they found something, but now you can get treatment. Sounds like you have a good doc if you're already on meds. Awesome! I know none of us really want anything to be wrong, but it is somewhat reassuring when there is a diagnosis. Good luck and don't check out of here. Keep us posted and let us know how you are from time to time.

Allie, that's awesome! Sad that you'll be apart next week, but I'm glad that you get the anniversary together. I hope you feel better soon. I asked the doc about addisons yesterday. You have to have darkened skin to even be tested. I say go for it. You're not an attention seeker and you know that. That's all that matters. You just want to know why the heck you feel like utter crapola all the time. Good luck. Have fun with the 'rents.

I hope you feel better Star!

My sugar was 200 when I went to bed so I took more insulin. 105 this morning. That's normal. I have all the tools in case I need to shoot up here at work. My eye is all red and puffy and half swollen shut now since I can't take the prednisone. My legs and joints are hurting again. My tummy is getting a little more wonky too. I swear, why is that doctors just don't see all the suffering we go through and know just from the symptoms? I am getting so sick of all this real quick, and I haven't been on the doctor diagnosis journey as long as you all. I've been dealing with it my whole life, but ignorance was "bliss" for me.

Oh, and my sister's dog had another seizure last night. Stay away from my family right now! Dad seems to be the only one not having anything go wrong.

Have a good day everyone!
 
Soretum: So happy that you've got some answers and can move forward with treatment! I haven't been on Pentasa or aza (I think it's called Imuran here) but pred worked wonders for me, and I hope it gives you a lot of relief as well. Drop in here every so often and keep us posted on how you're doing!

Meg, that's scary that your blood sugar was that high! Are they going to do any tests to confirm if it's diabetes? I have heard that pred, especially with long-term use, can cause/trigger diabetes. It sounds like you already had some diabetes symptoms that were just exacerbated by the pred? At any rate, I hope you're able to still feel somewhat well off of the pred and are able to balance all your symptoms and illnesses!

Star, your GI (or I guess I should say your old GI) just gets more and more awful every time I read about him! I guess his not responding to your email is yet another thing to add to the complaint, so not entirely a wasted experience. If the bleeding gets any worse, please do go to the ER (A&E or whatever it is called over there). I believe you've said that the bleeding is a new thing and I've always been told that new symptoms should not be ignored! I hope you continue to feel better, and I hope the new GI is much better. When do you get referred to a new GI? Or have you already been referred and are just waiting for the appointment?

Allie, I would say definitely pursue Addison's testing - it's so much easier than IBD testing, for one thing! Just blood tests, no prep except for a very easy fast beforehand (with the ACTH test, it is administered first thing in the morning and you're not allowed any food or drink after midnight - so you just get up and go to the test and then can have a nice breakfast afterwards). If you're getting darkened scars, I would most definitely pursue it. That's a big red flag, and it's a symptom I never had! Also, you mentioned feeling "woozy" - have you had any bloodwork done lately? You might want to have your electrolytes checked, specifically I believe potassium would be high and sodium would be low with Addison's. When my sodium drops, I definitely feel dizzy and woozy. Eating something high in sodium really seems to help me. Give it a try and see if you notice any difference. I do a few spoonfuls of soy sauce when I feel like my sodium is low, and I've even resorted to eating salt straight out of the shaker! I guess the sodium thing, at least for me, could very well be IBD - my aunt, by marriage, who has indeterminate IBD said she is the same way with salt - so the salt thing isn't necessarily Addison's. But the skin darkening thing and your symptoms, I'd say absolutely get it checked out. If it is Addison's, you can get it treated pretty easily with a low dose of pred and feel mostly normal again!
 
Hey everyone. Well I'm still here. They didn't get too far on the colonoscopy due to adhesions probably from my c-secion 4 years ago and it was extremely painful. They removed a polyp and have taken 4 biopsies and sent them for testing. I should get the results in 2 weeks but the hospital have said 'await pathology results, return to refring GP, no further follow up'....? The 'diagnosis' given by the consultant endoscopist was 'colonic polyp and intestinal adhesion, ?IBS'. There was no inflamation seen, but whether that's because they only got as far as the proximal descending, which according to the picture on the report is not quite half way up the right side. I don't know. Maybe I was just being a wuss despite the sedation and painkillers, but it REALLY hurt. They changed fom colonoscope to gastroscope but it made no difference.
So I wait two weeks, go back and see the GP, and find out where we go now or if there is anything else they can do to help me. Any advice would be great as I don't know if I should just accept a diagnosis of IBS and try to cope with it, or if there is anything else they can do.

Thinking of you all too
 
The prep was fine, I'd go through that again, but honestly the pain when they tried to get past the adhesions was just too much. I normally have a fairly high pain threshold (I think you have to with these conditions) and almost wish I could go back and just 'man up', but I know it would still be difficult.

I wish that bowel troubles didn't exist, so many people suffer with it, where are we all going wrong?! We can't all have been bad in a past life lol
 
Penguin, sorry to hear that the scope wasn't able to get very far. Adhesions are pretty common with IBDs, I've heard others on the forum talk about them and from what I hear they can be quite painful, so I don't blame you for stopping the scope when things got too painful.

Is it IBS? Probably not, especially if your symptoms are bad enough that you're here! IBS is a brain-gut malfunction, something in your brain tells your guts to cramp which can cause some pain, nausea, and diarrhea. But IBS doesn't cause massive pain (from your "my story" thread, you said your pain sometimes interferes with eating - this is NOT a part of IBS, the pain would not be that bad with IBS). IBS also doesn't cause bleeding, fever, blood in stool, dehydration, or unintentional weight loss. I believe you mentioned weight loss in your my story thread as well so you've already got two strikes against IBS! If I were you, I'd definitely pursue further testing if the biopsies don't reveal anything. A CT scan or MRI would probably be a good next step, as those can look at the whole abdomen and see if there's anything that sticks out as a possible source of your pain & symptoms. When I had my CT scan, it didn't find anything with my guts, but it did see that I have some benign nodules on my liver. The nodules have been ruled out as the source of my illness, but nonetheless it was good to find out that they are there. An MRI can see more detail, but most doctors seem to prefer to do a CT scan first as it gets a good "overall" picture of what's going on.

Penguin, have you had other symptoms that don't necessarily seem related to your digestive tract? Anything like joint pain, eye problems, skin problems, hair falling out, migraines, other stuff like that? If you do have Crohn's or colitis, they can frequently cause "extra-intestinal" symptoms like that. Just another thing to think about - if you've had any extra-intestinal symptoms, you definitely should pursue further testing. Again, IBS doesn't cause any of that stuff!
 
I really don't know if it is IBS cat-a-tonic. I was dx with IBS by the GP about 10 years ago, but now it's so so much worse which is why he referred me on to the clinic for the colonoscopy. I'd tried even more different meds and variations of meds in the 6 months prior which all did very little or nothing.

Yes, you're right in reading from 'My Story' that I have weight loss and feel almost in a battle to hold onto the weight I have left. The pain I get can be excruiciating when the cramps and diahorrea happens, but the pain after eating is also there. It stops me wanting to eat, so it's just a horrible cycle now.

As for other syptoms, of those you've mentioned above I have hair loss (I have naturally thick hair so it's not too noticable, but in the last year I have had many embarassing situations with people complaining I've left my hair all over their floor/sofa/etc) :shifty-t: I have joint pain, especially my knees. I also started with a strange numbing sensation across my body which varies in degree for the last 18 months or so. Brain/neck MRI found nothing and they kind of gave up fining a cause. I still have periods of numbness, mainly in my extremities though. Goodness knows if that's anything to do with it. I was also diagnosed with ME (sometimes known as Chronic Fatigue Syndrome) around a year before the original IBS diagnosis, about the age of 14/15. I'm mostly 'better' from that, or was, I'm always knackered now :(

Can't quite remember if there's anything else... feeling I may need to get a checklist prepared for when I go back to the GP!
 
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I agree with Cat, that doesn't sound like IBS. I was originally dxed with IBS 6 years ago, and mine has gotten much worse as well. If you dont feel like the IBS dx fits, I wouldnt take that as the answer. Its a garbage term anyway. It is so frustrating to be stuck with that term in your charts...my doctors can't seem to get away from it!

I would get another test to make sure the colonoscopy didnt miss anything. Upper endoscopy, blood tests, etc.
 
star I have a lot of trouble with my right shoulder at the moment too, right wrist as well...the pain really wears you down doesn't it? GI was confident all aches and pains would improve with the meds so fingers crossed, sick of feeling like a bent up old lady.

I worked as a nurse in London for 8 years, I can understand your frustration with the systemk there
 
What Allie said is so true - IBS is a catch-all phrase used by many doctors when patients have these types of symptoms. Some question whether or not IBS even really exists or if it's just an overused term for doctors who can't/won't diagnose a patient properly.

Penguin, for the hair loss you might want to try biotin. It's a type of b vitamin, you should be able to find it with the other vitamins. I was experiencing some hair loss when I was on Entocort, and another person on the forum told me that biotin can sometimes help. I gave it a try and it seems to work really well! I have naturally very fine and thin hair so I am really, really glad to have found something cheap & natural that works. I was told that you need to take at least 3 mg (3000 mcg) for it to work for hair loss - I take a 5 mg supplement every day and I haven't noticed significant hair loss since shortly after I started it.

And yes, definitely do write down everything for the next time you see your doctor. I find that when I enter the doctor's office, my mind goes blank and I can't remember what I wanted to say or ask about, so I keep several lists - one with all my symptoms, including the severity, dates that they happened, how many times I've been to the bathroom on a given day, etc. Another list with all the medications and supplements I currently take, and a 3rd list with all of my questions, starting with the most important one at the top (the one I most want answered).
 

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