Undiagnosed Club Support Group

Crohn's Disease Forum

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Hi Little Bear, welcome to the club. From what I've read, ANA should be normal in IBD (Crohn's/colitis). It's typically raised in other illnesses like RA and Lupus, but not IBD. I'm not sure about thyroid issues being linked to IBD - I wouldn't be surprised though, there are so many things that can be linked to IBD!

Maree, I'm glad your instinct was right about the diet. I hope the GI can give you some better info when you hear back from him.

Dusty, thanks for the info! :) As Mark says, when in doubt, ask Dusty!

lsgs, how are you doing lately? Any word on when the MRE might be?
 
Hey all, sorry I've been away, its been a rough few weeks. How has everyone been? I started acupuncture and then had my Tramadol denied last week. I have it back, thankfully, before withdrawal. I always have a panic attack when that happens. It just freaks me out to think think about withdrawal, especially with my tachy heart, it could be very dangerous for me. Also that red and swollen joint might be a fracture in my foot. I haven't made it to the xray clinic yet.

What have I missed?
 
Hi everyone,

I just wanted to check in with my last appt. with the GI specialist.

Bottom line was, the colonoscopy showed nothing. The endoscopy showed nothing. When i asked about the possibility of small bowel crohns, he said that he was able to access the all bowel from colonoscopy and endoscopy and did not see anything. The biopsies were negativ. I think he said that 3 biopsies were done. He said he is .100% positive that its not crohns. My calprotectin test was negative, the IBD test fom prometheous lab called ibd/sgi showed pattern consistant with ibd crohns came back positive, but he said that did not mean anything. I handed him a summary of my illness for the last five years. In the beginning of being sick, I had upper right quadrant pain-constant. Diarrhea and nausea. I had a rectal fistula about a year before. I have psoriasis, all over that doesn't go away. I have visual problems. Started out as neuritis and now I have high pressures with suspected glaucoma. I have always tested with low rbc's and been anemic since childhood. Also bleeding gums and sores off and in.
His conclusion is that I am constipated. That is what is causing all my problems. I explained that I fluctuate from constipation to diarrhea with more constip. Since I was put on strong pain meds. This pain has been present since before I began pain meds Nd still feels like it did 5 years ago. His conclusion was that I start a regimen of miralax and fiber. I advised him that I've been on that regimen since starting pain meds.

At that point I Asked him to perform a pill cam. He reluctantly agreed, but I do not feel he could have accessed my small bowel. He is also referring me for a laparoscopy by a general surgeon to look at that area.

My other question to him was if he would perform an MRI of small bowel, as I hVe read its a better tool than the ct scan, but he denied that. I asked if he reviewed my ct scan and he said no. I told him that I would if liked it if he did as the radiologist doesn't know my history. He said he trusted the radiologist opinion.

Any input would be appreciated. I'm really confused at this point. I really wish this were constipation, as that would be so easy to cure right? I do no want to go in living like this. After 5 years it has controlled my luc and I want my life back.

The gi spec. Said he wod see me back in 3 months. I hate this and feel it will never end.

Sorry this is so long but I just want to see if anyone can look at this more objectively.

Take care

Cassy
 
Ben, I understand your feelings. It is so hard to keep going, keep being told there is nothing wrong when you know there is, and keep spending money. You find ways to cope and deal with the symptoms, and get by. Good luck to you! I don't want any of us to be sick, but I want us to get the answers we need too. I hope you don't get worse. Be easy on yourself.

My flare is still persisting. My body seems to do okay for a few weeks, and then back at it. Chronic D and exhaustion. I am usually ready for bed by 6 pm but fight through. Then when I do get to sleep, I am restless. Sometimes I am up a couple times a night to potty. I see the second opinion gastroenterologist on Tuesday. I don't want another colonoscopy. I really hate those things. I am going to tell him how steroids for asthma always helped my tummy. I am going to ask for a trial of a med.

I did have a conversation with a longtime friend of a friend over the weekend. I want to share the guts of the conversation, pun intended. She was sick for 7.5 years, every few months, with flares. Every medical professional kept telling her she had the flu. Well, finally an ER doc looked at her history and said something had to be going on and it wasn't the flu. She said because of that doc, she is alive. They found CD in her terminal ileum. She had scarring from all those flares. I told her, it wasn't that she didn't have CD those 7.5 years, the doctors just couldn't see it yet because it hadn't damaged her intestines. The sad part of this disease, you usually have to go through shit (another pun intended) to get a diagnosis. You pretty much have to have damage. And it is so individual. Some may have all the symptoms, where another might just have pain but blood tests are normal. I learned a lot from that talk. And I am feeling more empowered too. And more confident in the next visit I have. I just hope this is a compassionate doc that is willing to listen. I hope her story helps.
 
Cassy said:
Hi everyone,

I just wanted to check in with my last appt. with the GI specialist.

Bottom line was, the colonoscopy showed nothing. The endoscopy showed nothing. When i asked about the possibility of small bowel crohns, he said that he was able to access the all bowel from colonoscopy and endoscopy and did not see anything. The biopsies were negativ. I think he said that 3 biopsies were done. He said he is .100% positive that its not crohns. My calprotectin test was negative, the IBD test fom prometheous lab called ibd/sgi showed pattern consistant with ibd crohns came back positive, but he said that did not mean anything. I handed him a summary of my illness for the last five years. In the beginning of being sick, I had upper right quadrant pain-constant. Diarrhea and nausea. I had a rectal fistula about a year before. I have psoriasis, all over that doesn't go away. I have visual problems. Started out as neuritis and now I have high pressures with suspected glaucoma. I have always tested with low rbc's and been anemic since childhood. Also bleeding gums and sores off and in.
His conclusion is that I am constipated. That is what is causing all my problems. I explained that I fluctuate from constipation to diarrhea with more constip. Since I was put on strong pain meds. This pain has been present since before I began pain meds Nd still feels like it did 5 years ago. His conclusion was that I start a regimen of miralax and fiber. I advised him that I've been on that regimen since starting pain meds.

At that point I Asked him to perform a pill cam. He reluctantly agreed, but I do not feel he could have accessed my small bowel. He is also referring me for a laparoscopy by a general surgeon to look at that area.

My other question to him was if he would perform an MRI of small bowel, as I hVe read its a better tool than the ct scan, but he denied that. I asked if he reviewed my ct scan and he said no. I told him that I would if liked it if he did as the radiologist doesn't know my history. He said he trusted the radiologist opinion.

Any input would be appreciated. I'm really confused at this point. I really wish this were constipation, as that would be so easy to cure right? I do no want to go in living like this. After 5 years it has controlled my luc and I want my life back.

The gi spec. Said he wod see me back in 3 months. I hate this and feel it will never end.

Sorry this is so long but I just want to see if anyone can look at this more objectively.

Take care

Cassy
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A gastroenterologist not realising that there's what, 20 more feet of small bowel he hasn't visualised through colonoscopy/endoscopy? What is it with these doctors?

Cat, thank you for asking. I'm okay, a bit sad today. I'm jjust about done with doctors, honestly. The hospital phoned for my MR enterography (I couldn't get enteroclysis cause I couldn't tolerate the tube) and they are saying I have to go on Tuesday. I have taken so much time off work I can't go that short notice and cancel all my patients who have waited weeks for their appointment. The guy on the phone acted like I should kiss his feet for offering me the appointment. Don't they realise we have jobs we could lose? They are also expecting me to drink 2 litres of kleanprep at the hospital then go in the scanner an hour later. First issue is no way will I be able to drink all the fluid they are asking me to, I can barely drink a glass of water without problems and second issue is, I'm quite sure I will poop myself in the scanner (although my last prep took 6 hours to get going I suppose) When I've had enterography before you didn't need a prep, I am so frustrated. To be honest I just feel like running away from all medical appointments at the moment. I am sick of hospitals, tests, doctors and feel like I can't face it anymore. I'm sick of the dishonesty of doctors, I'm not trying to be a drama queen here but my trust has been well and truly broken over the past few years and it's becoming too draining.

On the plus side my husband says he has noticed a big change in me since I started taking my pancreatic enzymes. I would say I am much much much less nauseated and I certainly have not had as much d. Prior to going on them I was going 5-6 times a day, I've been on them a week and not had d once. So I don't know, it may be coincidence as my disease whatever it is tends to flare and get better pretty quickly.

How is everyone else? How are you Cat? :)

Little Bear - Positive ANA normally means something autoimmune but it depends on how strong positive it was. A weak positive result can be found in healthy people. I have a strong positive ANA because I have an autoimmune disease (sjogren's syndrome).

I'm also in the same situation as you with high calprotectin and clear colonoscopy, has your doctor mentioned anything about it? GI 1 says it means I have IBD but they can't find it on scans yet, GI 2 says false positives (yes, he says 3 seperate samples all roughly around the same score over the course of 10 months could be false positives :yrolleyes:), rheumatologist says IBD.

It's all very confusing when the professionals can't give a straight answer!
 
Isgs sorry to hear there being so unflexible about the tests.
Fantastic that for now the pancreatic enzymes seem to be working. I hope they continue to work, personally I'd try to hold on to faith that there an answer or a piece of the solution untl proved otherwise.

I think sometimes we all need a break from the burden of the hunt for answers. To just let things be and try to enjoy life as it is. If thinks are better for now with the pancreatic enzymes make the most of that.

I think if we don't find any answers in the next month. I'll give Liam a break for the summer, (assuming his weight doesn't drop further). Then restart the hunt for why he has become so terribly thin in the Autumn. His symptoms are fairly managable most of the time, if I'm careful about what I feed him. In the meantime I hope we can get an MRI done & am going to get a 2nd opinion on correct approach to dealing with the benign lump in his stomach.
 
Thanks for the advice guys :) I think my ANA was only slightly elevated. I guess they'll keep an eye on it. I got my calprotectin result back and it's 158 so the next step is at the gastro for diagnostic stuff. I am hoping against hope I get a diagnosis. Any idea what the most successful test for crohns is? (Or is that a subjective q) I have a feeling the camera tablet you swallow is fairly reliable?
 
Generally colonscopy is first which will cover the large intestine, with a colonscopy they can take biopsies which gives a lot more information about what they are seeing. Even if there isn't obvious damage, random biopsies are normally taken and checked.

Upper endoscopy is similar to colonoscopy but shows the stomach.

Pill Camera and MRI are used to get a view of the Small Bowel which can't be reached by the scopes.
 
Thanks Marie. They looked at my stomach (red and inflamed) before they suspected crohns and they saw a clear colonoscopy - neither time taking biopsies. I guess the pill cam or MRI of the sb is next.
My problem is this is all new I haven't much to contribute yet as I know so little. This is the best resource I've found though :) thanks everyone x
 
Seems strange that they'd not take biopsies if your stomach was red and inflammed. Perhaps might be worth seeing if you can have another upper endoscopy with biopsies, as they might explain the nature of that inflammation.
 
Hi Dahl, always happy to see you - I wish it were under better circumstances though! Ouch, a potentially fractured foot? How's the acupuncture going, have you noticed any difference since starting it? I know a few people who swear by acupuncture, but I'm always a bit skeptical of stuff like that and haven't tried it myself yet.

Cassy - first may I just say, I'm proud of you. I'm sure that was a rough appointment, but you asked for what you wanted (pill cam) and you got it! I hope that and/or the laprascopy are illuminating. But I must say, your GI sounds like a moron. As others have already mentioned, no you do NOT see the entirety of the small intestine with the scopes! You only see the very beginning & the very end, there's a vast amount of small intestine that isn't seen on the scopes. You're right to ask for the pill cam because that can see the entirety of the small intestine, so I hope that one gets you some answers. If you do have Crohn's, it can affect the entire thickness of the bowel, so sometimes it's more obvious from the outside than the inside - which means the laprascopy might see something that the other tests are missing, so hopefully that one is worthwhile too. I wish you lots of luck with these tests. In the meantime, if it were me, I'd keep the test appointments but start looking around for a new GI. Yours sounds awful!

Meg, I'm presuming the new GI may want to re-run tests, so you may have to go through another c-scope. Most doctors like to get a look for themselves as to what's going on, rather than rely on a previous doctor's notes. I hope he's a good GI and can get some things figured out for you. I know you'll keep me posted on how it goes. ;) And yes, in some cases you just have to wait for scar tissue to develop before you can get diagnosed - that's what happened with my aunt. (You're FB friends with her so you and her may have chatted about this already.) She was ill for something like 30+ years before she got a proper diagnosis. Sometimes it takes a really long time unfortunately.

lsgs, that's good about the pancreatic enzymes working so well for you! But I agree that the MRE sounds too soon, and what's up with making you drink prep?? An hour beforehand!! Yeah, I would think that's dangerous, I would probably have an accident in the machine too! Can you call the hospital and ask to talk to a supervisor in the MRI department? Because whoever you talked to, it sounds like he didn't give you correct information and/or was a jerk. I completely understand being sick of doctors though. Take some time for yourself, especially as Maree said since you're feeling somewhat better right now. Don't give up altogether, but take a breather. It was actually my GI who suggested I take a breather, he could see I was going broke and crazy from all the tests (and all the "normal" results), so he said let's change course. He said we would try getting me into remission rather than put me through more tests at the time. He put me on some good meds, and I got into remission, and 2 years later I'm still in remission so I guess I'm still taking a breather! If/when I flare up again then I know I'll go through more tests, so I'm not in any rush to leave remission. ;)

Maree, you mentioned a benign lump in Liam's stomach? Do they have any idea what it is? I ask because they found 4 benign lumps ("focal nodular hyperplasias") on my liver. It's not cancer, but it is growing, and they said that someday they may need to be removed. As far as I can tell, they don't cause me any symptoms. But it's troubling to know I've got these things - it's also disconcerting when my GI calls them "benign tumors" because nobody wants to have tumors! My GP doesn't even know what they are, he actually asked me if I know anything about them! I've had an MRI of them which confirmed what they are and what size they are, but nobody can really tell me more than that. Anyway, I'm rambling again, but I hope you can figure out what Liam's benign lump is and what to do about it, what caused it, etc.

Little Bear, there really isn't any one test that is absolutely the best for diagnosing IBD. Colonoscopy & upper endoscopy are usually the first major tests that doctors like to do. If you have those scopes done, make sure they take lots of biopsies, as some types of IBD (such as microscopic colitis) can only be seen on biopsy. The pill cam is a good one too, it can see the entirety of the small intestine and the scopes cannot. Scans like MRE and CT-E are less invasive than the scopes and can see things like narrowing or thickening of the bowel wall. Of course with any CT scan you get exposed to radiation, so I'd go for the MRE (MRI-enterography) over the CT. There are always the more minor tests too, like bloodwork and stool samples. Bloodwork is never 100% accurate so most doctors don't rely on that alone. For example, about 10% of IBD'ers will have normal CRP & ESR (blood inflammation markers) even in a terrible flare - and the blood test for celiac is notoriouslly unreliable (I've heard you may as well flip a coin!). When you have bloodwork done, ask them to check your vitamin levels. Things like vit D, B12, and iron are often low in people with IBD. Good luck with the testing, keep us posted on how it all goes!

How's everyone else doing? As for me, I'm okay. The arthritis is still being a pest, slightly less than 2 months to go until my rheumatology appointment. I've finally adjusted to the new medication (Delzicol) and my bowels are pretty calm for the most part (I ate pizza last night so things got a bit riled up!). Work has been kind of crazy lately. I'm still working out every day, now that it's nice outside I've been going on lots of bike rides. I'm still lifting weights too as that's always been my favorite. :)

Oh, this is kind of weird though. A woman at work saw me going down to the gym on my lunch break (there's a gym in the basement of my workplace). This woman clearly pays a lot of attention to her appearance, she's very thin and her hair & makeup & clothes are always perfect. So she saw me going to the gym, and she said, "Oh, so THAT'S your secret!" I was shocked and couldn't say anything. I wanted to say, "No, my secret is that I have an inflammatory bowel disease that tends to keep me thin because I have a hard time digesting food and absorbing nutrients, and I work out to try to be as healthy as I can and to make my sick body stronger, not thinner." Many people at work know about my illness, but not this woman, and I just couldn't find the words to tell her how wrong she was about assuming that I work out and that makes me thin, end of story. Do you guys just hate it when others make incorrect assumptions about your life/weight/health? It really irked me. Maybe it shouldn't - maybe I should just be happy that someone assumed I'm healthy & normal?
 
Although the Pediatric GI has training to do scopes, he's a pediatrician first and a gastroentrologist 2nd. He doesn't seem to know what the lump is either, it's not a polyp which is the most common sort of lump. At the time of the scope he thought it was pancreas tissue growing in the wrong spot, but he says biopsies didn't support that. He thought it would need regular checks to make sure it wasn't becoming malignant but seemed rather vague on what was appropriate.

I've asked for a written copy of biopsies that I will pick up tomorrow and I'm going to take the report and the photos that I have of the lump to a adult GI surgeon and ask him if he can identify the type of lump and give me an appropriate action plan for it.

Cat be flattered, it's fantastic that through exercise and diet your able to hold things together well enough that you look great. Given what I've read on your exercise blog I'm guessing you look thin and toned, not just underweight thin, which always looks much better than weight loss thin. Take it as a compliment.
 
Cat, I totally agree re the appearance issue. What defines "healthy" looking? It's a shallow world we live in. Your exercising is wonderful for the arthritis aspect of this disease. Good for you! I know it's not easy getting out there when you feel bad. I've been walking an average if 5,000 steps a day and as difficult as it is, I feel a sense of accomplishment.

I will look into a different gi.

I wanted to respond to ISGS regarding pancreatic enzymes. I'm also taking them and it does help.

Have a good day everyone.

Hugs, cassy
 
Cat-a-Tonic said:
Do you actually get a fever when you're having that feeling? I get that feeling too, chilled and shivery and I feel like I must have a fever - but for me, when I check my temperature, it's always normal!
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At the beginning of my flare this happened every night... is it an ibd symptom? My Dr thought it might be my anemia but now after pred it has stopped...so interesting!
 
Toni, I'm not anemic (or I'm on the low end of normal anyway) but I get that feeling in pretty much every flare. My understanding is that chills/fever like that can indicate infection or inflammation. That makes sense that pred made that feeling go away, because pred blitzes inflammation fast. You're not inflamed (or less inflamed than you were), so you no longer feel feverish. It sounds like pred is working well for you then? That's helpful, definitely let your doctor know - this means it's not IBS, it's got to be something inflammatory.

Cassy, good for you for walking - do you find it helps your symptoms? I have trouble jogging and to a lesser extent I sometimes have issues with walking too. I guess my arthritic hips don't like higher-impact exercises. But I can lift weights, ride my bike, do the elliptical, etc just fine with no pain. Sometimes the abdominals weight machine is out of the question, but I can do all the othe weight machines anyway. Exercise seems to help me a lot! I could not stay in remission with just exercise alone, but even so it's done me a lot of good. I hope it's helping you a lot too.

Thanks Maree. I realize I should probably post some photos of myself in my exercise thread so people can see my progress. Yes, I'm not underweight (I was during the worst of my flares, before I hit remission). My BMI is usually right around 20, so on the low end of normal. I'm 5'8" tall and about 139 lbs right now - for reference, my "healthy" pre-IBD weight was 136, so very close to where I was, but with more muscle now obviously. I'm not super toned or anything but I do have some muscle mass. I still have some flab - when I was on Entocort and gained all my weight back (and then some), it all seemed to go to my stomach area! I still have a bit of flab there. I'm sure I have nice 6-pack abs underneath the flabby layer. :p I have a bit of cellulite on my thighs too. So I'm definitely not perfect, but my goal was never to look good anyway. I still kind of hate my body because I know what it's capable of doing to me so maybe I'm selling myself a little short here. My hubby always compliments my arm muscles, he started coming to the gym with me because he wanted to get arms like mine! So I guess I'm toned, I don't know. :p I'll post some pictures soon and you can be the judge.
 
Hello everyone,
I've been on the forum for about a month now. Some of you know my story (Cat!). I was originally diagnosed in 1995 with Crohn's after a colonoscopy, put on Prednisone for about 4 months and then had an exploratory lap with appendectomy. Since then I hadn't had any real problems or flares. About 2-3 months ago, I noticed that every time I ate I would get bloated and have pain afterward for hours. My weight started fluctuating by as much as 7 pounds in one day. I had been having night sweats off and on for about a year, but now they are 4-5 nights a week, regularly. I've had to go on the elimination diet to calm things down (some), but still having pain. I don't really get diarrhea, just once a week or so, I tend to be more constipated. I have had an ultrasound of my ovaries (which looked okay with some small water-filled cysts), a CT with contrast and an MRI. I have a 2-inch cyst on my right ovary but the doc says it's a normal one. No inflammation showing up on the diagnostics, and all blood work came back normal. Now I'm awaiting a referral to a GI group in the Twin Cities here in MN. I'm frustrated because nothing shows up on any tests so far but I'm still having bloating, pain and can't eat hardly anything without making it worse. I've lost about eight pounds in the last couple of weeks. It's a struggle for me to maintain weight because I have to exercise daily for my back (double fusion in 2003, degenerative disk disease). Anyway, it's nice to find a group where others understand the frustration of going through these symptoms without knowing what the problem is!
 
I have been dealing with Celiac Disease for about a year now but now I am having symptoms that are outside of Celiac and more in line with severe Crohn's (or something else entirely, like Ulcerative Colitis). My doctor will not give me a clear diagnoses and refuses to give me steroids/antibiotics of any type until he reviews my capsule endoscopy (could take 2 weeks from today!!).

I am also a chronic pain patient (left side head, from jaw joint). So my entire left side of my body is always hurting and naturally no one wants to be around someone always in pain. So friends, etc are extremely limited due to how constant the pain is. I am on a gluten diet, cooked veggies, and even during fasting (simple green tea) the pain is terrible. I don't feel like doing anything, let alone talking or socializing; just watching TV suits me now.

Doing a capsule endoscopy today, which is causing severe pain. Any support appreciated greatly at this point. Suppose it would be the lowest point in my life. And I've dealt with a lot of pain since age 13 (now 27).
 
Knight - that's heartbreaking to read. You're in the right place - the people here are amazing. It must seem pretty bleak at the moment but the pain from the pill won't last and it might get you a diagnosis. I have everything crossed for you. X
 
Hi Robby welcome. My son (aged 10) has undiagnosed stomach issues which is what brought be to this forum. But thought I'd say hi as I have suffered from TMJ pain (in my case it was pain radiating to the TMJ joint as a result of severe Atypical Trigeminal Neuralgia). I had a multi year battle to get that pain under control to a level where I could function at all, so I feel perhaps I have a little insight into what your experiencing (at least on the head pain side.)

I hope you get some clear answers from the pill cam which will help your doctors put together an effective treatment strategy for your stomach pain soon.
 
Thanks for the welcome. I appreciate it.

Little Bear, you're right: the people here have been great with their replies to my questions.

Maree, sorry to hear about the TMJ problems. I can't get mine under control or find insurance to cover anything at all. Anything that is covered is extreme (surgery) and the pain is unreal - it is 100% of the time and I can now hardly look at the PC monitor anymore. Which is a real problem, because I find a lot of answers here.

May I ask what helped your pain? I am looking into getting at least a TENS Unit at this point. I am honestly overwhelmed because of the new stomach pain on top of already terrible pain. I've been dealing with undiagnosed TMJ problems for 15 years. Was only diagnosed in recent years, which is insane.
 
Because my pain levels we're really extreme (I had 6 months when I only slept when in hospital on a morphine drip and was in hospital more often than not). I was luck enough to be refferred to a really good pain management clinic, who had a TMJ specialist Initially they worked with my neurologist to stabilise my pain using medications.

But then we moved on to physio & CBT.

The physio worked with the TMJ specialist to put together a range of exercises to help relieve the tension in my jaw and neck. Like most pain management physio, exercises we're initally painful and I had to build them up slowly. These days I'm slack and only do if the pain flares. On top of this I try to exercise daily as exercise is hugely beneficial for dealing with chronic pain (my Pain Management clinic pushed this really hard).

CBT (Cognitive Behavioral Therapy) was fantastic in helping me to deal with the residual pain (the direct nerve pain!) and not be distressed by it. I've been pain med free for 6 years and over time my central nervous system has got better and better at tuning out the faulty signals.

I also now use a TEMPUR-Pedic neck pillow to properly support by neck and head while I sleep which makes a huge difference, to levels of neck and jaw pain.

I've heard fantastic things about TENS units. My pain management clinic talked about implanting one in the base of my skull at one point. Although it's mean't to be relatively safe, I found the idea of any sort of surgery inside my skull frightening so we deferred that and explored the full on CBT path first.
 
Robby -
I'm sorry to hear you are suffering from both GI and jaw pain. Dealing with two chronic pains at once can be quite unbearable. I have chronic back pain from degenerative disk disease and a two-level fusion, so I can certainly relate. There are days when between my back and my belly I just don't feel like doing anything or seeing anyone at all. Fortunately I have some good people in my life who are understanding and supportive. I hope you have people like that in your life as well. At least you've found us here, who all understand what you are going through, and will support you. I hope that you get some good results from the endoscopy and are able to get some relief from medications.

Regarding the TENS unit - I had one early on for my back pain, and it did help sometimes. Give it a try and see how it goes, it's worth a try!
 
Hi Mccindy, I'm glad you've joined us, but it sucks that your diagnosis was essentially taken away or is in limbo. Yes, as you know I've been following your story pretty much since you joined the forum. Just wanted to welcome you to the club! :) Hope you're doing okay today!

Hi Robby, welcome to the forum. That's disconcerting that the pill cam is causing pain - when I had the pill cam done a few years ago, it didn't cause any pain at all. I'm assuming you must have either narrowing, strictures, or some pretty bad active inflammation for it to cause pain like that. The good news is, that hopefully means it'll find something! I'm glad Maree mentioned TMJ, that was my thought too. I believe I've read that TMJ is not uncommon in Crohn's patients, so perhaps all of your health issues are linked together in some way. Hopefully you can get answers from the pill cam and get some proper treatment and good relief and get back to living life. For what it's worth, remission is possible - I'm in remission and my life is 1000 times better than it was when I was so ill! So hang in there, and don't lose hope. Please keep us posted on the pill cam results!
 
Welcome McCindy! Hugs. I had chronic cysts on my right ovary and once it was removed and tested, they saw endometriosis on the inside. Has anyone ever mentioned that to you? Good luck! Being in pain sucks!
 
I was really hoping I wouldn't have to have more tests, but you are probably right Cat! : ) I am friends with your aunt? Is it who I think it is? I didn't realize you two were related. Tell the woman to bugger off! : )
 
Hi quirky! I had a hysterectomy 8 years ago, kept my ovaries, and the doc told me that they found a lot of endometriosis behind the uterus. She neglected to tell me that it could still affect me afterward, I thought it would be over. My current doc did mention that it could potentially be bowel endometriosis, but he says the only way to diagnosis it is through laperoscopy and he doesn't want to do that. He'd rather wait and see what the gastro doc says. So, as Cat says, I am in limbo again. It does suck that he is questioning my original diagnosis. For now I will just have to stick to my elimination diet and wait to schedule an appointment with the gastro.
 
Poor Cindy! I am too possibly going to have a lap to see what my pain is. Endo can definitely linger! And the endo may have started in your ovaries. Poor thing!

Hugs.
 
Meg, congrats on being made Forum Monitor! Blue looks good on you. :) I sent you a PM about my aunt. She's awesome, no buggering necessary. ;)
 
Hi Robby... not much to add, just wanted to say I'm sorry you're going through this, and I hope things get better for you. No one deserves to be in pain like that.
 
Cassy said:
Cat, I totally agree re the appearance issue. What defines "healthy" looking? It's a shallow world we live in. Your exercising is wonderful for the arthritis aspect of this disease. Good for you! I know it's not easy getting out there when you feel bad. I've been walking an average if 5,000 steps a day and as difficult as it is, I feel a sense of accomplishment.

I will look into a different gi.

I wanted to respond to ISGS regarding pancreatic enzymes. I'm also taking them and it does help.

Have a good day everyone.

Hugs, cassy
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Pancreatic enzymes should be given to anyone with IBD, in my opinion! They have been a god-send to me in the last 2 years!
 
Meg, my understanding is that ANA can be slightly elevated even in normal healthy people, so yours being slightly raised is probably not indicative of anything (in other words, it could still be IBD). I think Allie mentioned once that hers was raised significantly in one blood test, and in another a month or two later, it was normal - so even for someone with a raised ANA, it can fluctuate. I don't know much about ANA so I'm just repeating what I've heard others say - but long story short, no, having a slightly raised ANA doesn't rule out IBD.
 
Hi all! I am new here and am unsure how this all works, but I would like to tell my story and get some advice, so here goes.

So, it all started in 2007. I started having lots of abdominal cramping and very loose stools. Sometimes I even had blood in them. The bleeding stopped, so I did nothing about it and just figured I had IBS. I have had similar episodes since I was a teenager related to what I always thought was lactose intolerence.

I got pregnant in 2008 and had bad diarrhea throughtout the whole pregnancy. My OB said it was probably from the pregnancy. I had my daughter in September and a week after she was born I started having excruciating burning pain in my back with lots of N/V/D. They just said it was a stomach bug, but the burning pain never went away. I dealt with it for a few months and finally when I went for my yearly GYN check up my Dr examined me, checked my thyroid and it was inlarged. I reported to him about the terrible burning that I was experiencing in my back, the numbness and painful tingling that I was having in my hands and feet and he referred me to a Surgeon, Endocrinologist, and Neurologist.

The surgeon wanted to remove my thyroid, the Endocrinologist said that my thyroid was normal, and the Neurologist thought that I had MS. He did an MRI that came back normal so he told me I was crazy and should see a Psychiatrist. That really hurt.

I then moved to another city and within 3 months of being in a new town a new symptom arose. I got Iritis!!! It took 3 months of steroid therapy to get rid of it and the glaucoma that came from the steroid treatment. The opthamologist ordered some lab work and I found out I am HLA-B27 positive. He referred me to my GP who did more lab work and referred me to a rheumatologist. The lab work my GP did came back showing that I was very deficient in vitamin D. My level was 13. I started taking over the counter vitamin D and have not had my levels rechecked and that was about a year ago.

The rheumatologist suspected AS because of the back pain, iritis and the hip pain that started a few months after the iritis. My insurance made me switch rheumatologist and I had to start all over again. The infammatory lab results that he did always came back normal, but the pain just kept getting worse. I started getting sores in my mouth, all down my throat that lasted for weeks to months and red spots on my legs and bruise looking spots on my torso that don't go away so he started me on NSAIDS and Lyrica diagnosing me with fybromyalgia and suspecting Bechet's.

He then moved so I was left with no doctor. I had a very bad flare in December of last year that put me in the ER. They treated the pain and sent me on my way. I was trying to make it through the holiday season, but I was in such severe pain everyday and ended up being so constipated that for the next 3 months I only had 3 real BM's.

My GP sent me back to the first rheumatologist and got me a GI appointment and told me to take miralax daily to keep me moving and put me on a steroid treatment that improved my pain.

The rheumatologist then started me on Humira without an official diagnosis. I started it March 2013, 40mg once every 2 weeks. I am just now starting to feel better.

I saw the GI a few weeks ago and she is suspecting Crohn's. She ordered the prometheus labs that came back indicating that I did not have IBD. I did however have the gene mutation that is indicative of Crohn's. I had my colonoscopy on Tuesday where she found nodular areas in the ileum that she biopsied and possible ulcerative spot in my rectum that was also biopsied. All the results came back normal.

I still don't have a diagnosis. I am running out of steam! I don't understand how they can be treating me with Humira and still not know what to call this. All I know is that I am starting to feel better. The musculoskeletal pain is mostly gone although the burning still remains off and on. I need advice!!!
 
Welcome TDSF! I am sorry you had to find us, but so glad you did! I am also very glad the Humira is helping. I am surprised by your story, mainly that your tests keep coming back normal with all of this going on. You have endured a lot, and I hope they figure it all out soon. Good luck! This is a very supportive space, full of knowledge and empathy.
 
Yesterday, I developed a skin tag, on the inside of my arm. I have never had one of these before. It hurt, I scratched and it started to bleed a bit. I am really trying not to itch (I'm a picker). I know anal skin tags are common, but are there any other skin issues that anyone knows about?
 
I'm curious to know this answer too, Meg. I'm not usually an easy bruiser but twice in the last week I bumped my fingers and ended up with nasty bruises. I also seem to have some red bumps popping up randomly - not a lot of them, but I don't usually have any. Could be from the night sweats (still almost nightly) but just wondered if anyone else has noticed either of these things?
 
I get Cherry angioma (not sure if I spelled that right). Little red dots all over me. Benign. Annoying. I also suffer from Reynaud's Phenomena. I really wish we could all figure ourselves out. : (
 
TSDF, welcome to the forum and the club. My goodness, it sounds like every doctor you have been to has diagnosed you with something different! Please ignore the doctor who said you're crazy - I think all of us has had at least one experience like that unfortunately. Take it from me - you are NOT crazy! The fact that Humira is working definitely means you're not crazy, Humira only works on certain things so you can at least narrow down the list of suspects.

One thing I want to mention to you before I forget - one of our longtime Undiagnosed Club members had Crohn's-like symptoms for years, and she was actually diagnosed with Behcet's. Here's an informative thread that she wrote. I'm not saying you have Behcet's (I'm not sure if Humira works on Behcet's?) but this is worth a read through at any rate.
http://www.crohnsforum.com/showthread.php?t=44354

As for the Prometheus blood test, I've heard very mixed things about it. Very few doctors trust it and hardly any will diagnose based on that test alone. Some doctors think it's not even worth bothering with. And I've heard that the results of the test can vary depending on which lab tech is running it! So I wouldn't put too much stock into it.

If I read your post correctly, you started on Humira about 2 months ago, and had a colonoscopy 1 week ago? That's disconcerting - most doctors will make you stop all treatment before having a colonoscopy. Does your GI know you're on Humira? It's possible the Humira healed things to the point where everything looked okay on the scope. I know with my doctor, it's either tests or meds, not both. Right now I'm on treatment and I'm actually in remission, but the downside is that I won't be having further tests until I flare up again, because my doc feels (and I agree) that it's silly to go through tests while on meds and/or while in remission. So I'm doing well, but am also in indefinite diagnostic limbo.

I hope that helped somewhat. What's next for you, do you have any more tests scheduled?

McCindy, a month is actually not too bad of a wait! My GI usually has a 3-4 month wait for appointments (although he can usually squeeze me in sooner in an emergency). It seems to be a 3-4 month wait for rheumatology for me too, less than 2 months to go until I finally get to see a rheumy!

Meg, I'm not sure about arm skin tags. I know there are various skin issues that can occur with IBD but I've never experienced IBD-related skin issues myself (apart from acne breakouts, which seem mostly related to my meds) so I don't know. Have you had a peek around the skin sub-forum of the Extra-intestinal Manifestations section of the forum?
http://www.crohnsforum.com/forumdisplay.php?f=84

How's everyone else doing lately? I'm okay except for work stress. SO looking forward to the weekend! Although that's going to be busy too, I have to go shopping and do some sewing and clean my house and of course go to the gym, and I am going to spend some time with my grandparents. No rest for the wicked, right? ;)
 
Cat- thanks for the welcome.

I also thought that it was really weird that she wanted to do a colonoscopy on me after knowing that I am already on Humira. She seemed to be more interested in the blood test. She did the colonoscopy and found some nodular spots that she suspected were crohn's, but the biopsies came back negative. I think that the fact that she found any abnormalities at all warrants something!

I don't know. I am just wanting an answer. Humira has really lessened my joint/muscle pain, but I still have burning in my back and neuropathy pain. I even fainted last weekend! That is new for me, I get close often, but have never actually passed all the way out. I for got to tell my rheumy that yesterday.

No more tests as of now that I know of. I see my rheumy again in August.
 
quirkysoul said:
Welcome McCindy! Hugs. I had chronic cysts on my right ovary and once it was removed and tested, they saw endometriosis on the inside. Has anyone ever mentioned that to you? Good luck! Being in pain sucks!
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Hi quirky,

I'm curious about endometriosis and crohns? I have a Hx of endometriosis. I had a tot hysterectomy at 35. They took one ovary, but couldn't find the other that had been partially removed when I was 23. When I had my hysterectomy the surgeon said he had never seen so much endometriosis It was all the way up into my lung area. He used my films for a teaching study(lucky me-not).

I'm wondering how many of us have had this and if there's a connection. I thought after my hyst. That the endometriosis was gone, but since your post the other day I have been reading more and that may not be the case.

My pain is upper right abdominal and pretty disabling along with constipation with Hx of sever diarrhea when the pain started.

Again, I appreciate all th support here. This is really a great group of people.

Hugs
Cassy
 
Cassy, I plan on asking the new gi. I need to start writing down my questions. I want to maximize this visit.

I really really really want to plant veggies and herbs and cut my lawn. But, I am exhausted. This flare is causing extreme exhaustion. I really just want to sleep.
 
It's 81° out which means it's warmer in my upstairs bedroom as I haven't turned on the ac. And what am I doing? Having fits of cold chills. I flipping hate this bugger of a disease sometimes. Sorry for the vent, just tired of feeling ill.
 
quirkysoul said:
It's 81° out which means it's warmer in my upstairs bedroom as I haven't turned on the ac. And what am I doing? Having fits of cold chills. I flipping hate this bugger of a disease sometimes. Sorry for the vent, just tired of feeling ill.
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Jeez I'm jealous. It's around 0*C here at the moment.

Ow. Man I'm hurting. Burning all down from my lower right, across to a spot in the lower left. Sharp pains every now and then. Hurts bad enough to make me nauseous. Gaurding too when I'm in the grip of a bad one.

Hope it fucking stays this way till my GI appt. 2 weeks left. I've got a good feeling this time. Hopefully the ball really gets rolling.

Hope everyone's well - I'm busy as can be, working hard and playing hard at the moment. Getting back into shape and getting some money coming in.
 
Sounds like it was a rough weekend for many of us! I tried red meat Saturday night for the first time since this flare started. Regretted it all day Sunday, with burning and cramping. So no more of that.
We had plenty of rain and thunderstorms too, woke up Sunday morning to a big puddle in the kitchen floor and wet carpet in the family room. Apparently it was a bad idea to leave the windows open with thunderstorms in the forecast!
 
I am so tired. I can barely keep my eyes open. We are really short staffed at work so I came in. I was coming in late tomorrow due to the gi appointment, so I asked for the whole day off so I could rest. Boss said yes. : ) I also have arthritis pain creeping in. Tummy isn't tolerating much but bland foods.

I guess there is one good thing about being in a flare right now, I will look sick when I see the new GI tomorrow. Hopefully that will help.

How is everyone else? It was quiet this weekend.
 
Liam had a bad incident on weekend when he got bitten by an ant, foot swelled up and got rash all the way up his leg and across his chess. Resulting in a frantic dash to On Call doctor for antihistimine injection & intravenous corticosteroid.

Other than that he's looking the best he has since Feb, interesting he's back on the same med combo he was then: PPI & Motileum.

We are heading to see a GI surgeon on Thursday afternoon for another opinion on his stomach lump. We have pictures taken during the scope & biopsy results for the lump, which showed localised inflammation & hyperplasia & gastritis (restricted to the biopsy from the lump). Keen to get another opinion on what sort of lump it is, if it could be causing issues & what the appropriate managed plan for it is, given the Pediatric GI seemed not to know.

After that we're still keen to try to arrange an MRI as we'd like to be sure his small bowel looks ok, but at the moment decided to take things one step at a time.
 
Ya know, I just have to say how much my heart just bleeds for these kids with the diseases! Maree, you're amazing, and I'm sure your Liam is also.

I know how hard it is for us adults to go through this, yet alone a child. Childhood is supposed to be filled with wondrous things every day and lots of fun, and these kids have to deal with another day of doctors, painful tests, painful symptoms, and trying to have a normal life. It's just not "fair" is it?

I have to say, when I'm feeling miserable and disheartened, I look on here with these kids suffering, and it helps me see just how lucky I am in many ways.
 
We are sneaking the appointment with the surgeon in between school and a football match. The GI surgeon did Liam's first colonoscopy and is one of a small set of doctors he really likes (a fellow football fan) so he's happy to go, because "Dr Mathias is awesome".
 
Glad to hear that Liam found a doctor who he likes and can trust Maree. I guess that makes it a little easier for you all.

Sorry to hear that you guys are having such a bad time of it recently. I hope that you all start feeling better very soon!

As promised I popped back to give an update after my blood test results. So following 6 weeks of D, mucous and blood a colonoscopy in April showed severe, and extensive (but discontinuous - ruling out UC apprently) large intestine ulceration so they thought it was Crohn´s. The small intestine CT showed nothing so they discounted Crohn´s and used the 'I dunno' answer of 'idiopathic' origin. I still had major fatigue and mild abdominal pain so my 4th GI in as many visits ordered some blood tests.

I got the results today and my Chinese friend helped me track down my favourite, English-speaking doctor to discuss them. She says the results are all normal and confirm that the inflammation is no longer active, which is backed up by my lessening symptoms.

Even better she gave me her direct contact details, told me to call her whenever I have any questions, prescribed me a 6 month course of Pentasa and told me I need a followup colonoscopy in November to ensure my intestines are healing correctly.

It would be great to know what caused this in the first place, but I am so lucky that the symptoms are now under control. All being well this won´t come back, but if it does I know what to do (come back here and see that nice doctor!)

Thanks again for all your support and information. You guys made it much easier to deal with these last few months. I´ll pop back every now and again to see how everyone´s getting along.

My thoughts are with you all :ghug:
 
That sounds like a great result Ben, lovely that she's going to follow up to make sure things are healing properly and that it does look like your getting better.

We are in that tricky situation at the moment of feeling we have to choose between the Pediatric GI who has most relevant qualification, but we don't really like and aren't comfortable with (he seems to make a lot of mistakes with routine details like completing prescriptions and sometimes appears disinterested) and the GI Surgeon who we all like and trust who'se expertise isn't as relevant to the case (he's a surgeon, and he's never dealt with a pediatric Crohn's patient) but is followup of issues is great and he's very upfront with us about the limits of our expertise and we get the feeling that he really likes our child and is doing his best to sort out what is wrong. We ar leaning towards the later.
 
Maree, I can imagine you'd want the latter doc. It's always so reassuring to know the doc is supportive and motivated. I'd think that although he doesn't have the experience with pediatric patients, it sounds like he will probably do what he can to learn and do the best by your son. A disinterested doc, in my opinion, is not going to do the best job he can and overall results will be affected. I'm glad to hear you've got a doc on your side who's going to do all he can to help!
 
My own update - I talked to my middle sis last night -(middle out of the younger three). I knew she has had belly problems but I wasn't sure what they were, specifically. Her doc said her colonoscopy was the worst he'd ever done (couple of years ago now), she was in so much pain. He diagnosed her with a form of Colitis. She takes Azacol HD and it controls her symptoms fairly well and she's back to a modified form of normal eating. My youngest sister, when I talked to her, also has some GI issues (diarrhea, bloating and pain) going on but doesn't have good insurance so hasn't fully pursued a diagnosis. And my middle sis told me last night the the fourth sister told her last year that she's been having some belly problems too. So apparently all four of us have something going on in our gut! Still waiting for my own appointment June 12th. I must say yesterday was probably my worst day yet. I was so bloated last night and had so much pain I could hardly stand it, felt like something was going to pop. Better this morning, just an achy belly.
 
I can't say I was enamored with him, but he seemed nice. He listened to my rambling history and took a page of notes. He felt my belly and I was"exquisitely" tender at the point of my terminal ileum. I am always tender there but I have never been that bad. I nearly levitated off the table. He wants to repeat a colonoscopy since it has been two years. He said 80% of crohns is diagnosed there. He also thinks that I was just tested too soon. He said crohns would explain a lot.
 
I hope that you get a diagnosis at least! It sucks if you have Crohn's but an answer is always nice, isn't it? I have heard before that most Crohn's is diagnosed at the terminal ileum. Back in 1995 when I was originally diagnosed it was at the terminal ileum. Of course now the internal doc doubts the original diagnosis.... Good luck with the colonoscopy and I hope you get answers.
 
Yeah, I don't want to have crohns, no one does. But answers would be great. And both gastro docs I have seen think it is CD. I don't want to get my hopes up that this will yield any further answers, mainly because I don't want to be told it is normal again. I fear that disappointment. I am so tender still. Seriously, that was the worst pain I have ever had on an exam.

So, any tricks to staying in this flare? I don't want to, but I also don't want to get tested and be normal.
 
Do you have trigger foods? I'm pretty sure my current flare was caused by a combination of daily trigger foods and daily ibuprofen. I wouldn't recommend you take ibuprofen just to keep your flare active, as I'm not sure of the long-term effects. But if you have trigger foods that you know cause your symptoms, I guess you could keep eating them?
I completely understand your concerns about the tests coming out normal. So far my blood tests, CT and MRI have all been normal, so the doc I saw here doesn't think it's any form of IBD. He's thinking IBS (which is doc speak for "we don't really know...", isn't it?). Hopefully the GI doc will have more info or directions.... I'm guessing a colonoscopy is in my future. The doc here didn't want to do one as he feels it would just be normal anyway since he didn't see anything on the MRI. Ugh.

Good luck!
 
Our GI surgeon (the one my child likes) emphasised before he did the first scope, that clear scopes don't mean no Crohn's, they can simply mean too early to tell and that it was important that we understand that not finding anything on scopes doesn't rule out anything.

He says he is sure there must be some form of pre Crohn's or early Crohn's state that patients go through before they get to the point where the illness is clearly evident and easily diagnosed but he has no idea what that looks like, all the Crohn's cases he's seen have been full blown and quite advanced by the time they've reached him.
 
That's an interesting idea, Maree. Perhaps that is why so many of us are undiagnosed? It's interesting to me too that I was diagnosed by colonoscopy back in 1995, symptom-free since then, so now my current doc has doubts about the diagnosis. Kind of hoping that if I do have another colonoscopy, it shows something.
 
Also just talked to my other sister, she has been diagnosed with IBS and has had a precancerous polyp removed. My mother also had some polyps removed. So a Colitis, an IBS, two cases of polyps, a previous Crohn's diagnosis, and an undiagnosed with the same symptoms......
 
Ben, that's a good update! I hope things continue to improve!

Meg, I read a statistic on the forum once that said it takes an average of about 10 years from onset to diagnosis for most autoimmune illnesses (I know there's some question as to whether IBD is autoimmune, but IBD was included in that 10 year estimate). And you know my aunt, it took her like 30+ years to get a proper diagnosis! Sometimes doctors just aren't able to diagnose until scar tissue develops, and that takes years. 10 years sounds like a really long time, I feel like better diagnostic procedures need to be developed to cut that time down. But especially with my own experience, I do believe the 10 year timeframe is probably accurate. It's been 3.5 years for me with no end in sight so I wouldn't be surprised if it takes 10 years for me to get diagnosed. (Hopefully not 30 though!)

Maree, I agree that I feel like there must be some sort of pre-IBD or latent IBD that happens before the first flare-up. I've always had a "sensitive stomach", and as far back as college (and maybe earlier than that?) I've gotten recurrent anal fissures. I just figured this is normal, sometimes blood just comes out of a little wound in your butt, right? It took awhile to realize it is not normal! So I feel like I must have had some latent illness going on back then that didn't fully manifest until my first real flare in Oct 2009. I was still fairly healthy though until that first flare, so maybe I truly just did have a sensitive stomach and was prone to fissures just because - I don't think so, though. I don't think truly healthy people get fissures so I feel like it was the precursor to IBD.

McCindy, wow, your family really got unlucky with the IBD genetics! My family is pretty much the opposite, I'm the only one with IBD (except for my aunt mentioned above, but she's related by marriage, so we don't share DNA). I had a great-grandfather with UC so I'm guessing I got the IBD genes from him, but nobody else in my family has IBD that I know of. My great-grandfather died like 60 years ago and nobody in my family except for my aunt really understands. So I guess at least with family that is also affected, you've basically got a built-in support system? I bet holidays are interesting with everyone's issues and special diets though!

How's everyone else doing? I'm pretty well, the guts are quite calm lately. The arthritis has been a bit active with the storms rolling through, but it hasn't been as bad as it was in the winter (apparently the arthritis hates snow more than it hates rain). The GERD has been a little bit active too but nothing horrible, and it's certainly been worse. So I can't complain, on the whole I'm pretty good. :)
 
I am scheduled tomorrow morning for the agile patent capsule tomorrow morning.

Has anyone had this test? If so how did it go? I had no idea they have you do a test run to make sure the pill cam goes through. Yeah for fasting! Lol.

Cassy
 
Cassy said:
I am scheduled tomorrow morning for the agile patent capsule tomorrow morning.

Has anyone had this test? If so how did it go? I had no idea they have you do a test run to make sure the pill cam goes through. Yeah for fasting! Lol.

Cassy
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Easiest test you will ever do! The camera can look quite intimidating and big but it is genuinely so easy to swallow.

I never had to do a test run though.
 
Cassy, I had the pill cam but not the patency capsule beforehand. My understanding is that it's mainly just to make sure that the pill cam itself won't get stuck. The patency capsule will dissolve if it gets stuck - if the pill cam got stuck, it may require surgery to remove. I'm guessing you have strictures/narrowing or suspected strictures since they're doing the patency capsule? My GI did not suspect strictures or narrowing with me so I did not have the patency capsule beforehand.

Urghh. So my last update, I posted that I was feeling well? Yeah, I've been feeling quite unwell for the past couple days! I think I jinxed myself by writing that I was well, ha ha. Yesterday I felt a bit "off" when I woke up, my face was a bit more pale than usual, I had a rough time on the toilet - and then when I tried eating something, I was hit with terrible nausea. I'm doing a bit better today (although I haven't eaten anything yet). It's not a flare - no chills and no night sweats - so I think I've either got a virus or a touch of food poisoning. Blah.
 
Cat, how are you today? Are you in a flare, or are you better?

Cassy, how did the test go?

I am still in this flare. I have tried to eat healthier foods, but they just make me worse. I am so tired and I am in pain again. I am doing VERY little this weekend and will rest most of it!
 
Meg, I'm not in a flare, but things are definitely not right. I started feeling a little better yesterday - but then yesterday evening, I passed blood in my stool. Like a decent amount of bright red blood. This is particularly worrying to me because I am *not* a bleeder. Even in a flare I do not pass blood, ever. It happened again just now too so it's not a fluke, it happened twice. I'm freaking out a bit. Going to call my doctor and make an appointment. It's not a flare because I don't have the typical symptoms - no night sweats, no chills, no joint pains, etc. Stools are fairly normal too except for the blood, and nausea is better than it was. So I have no clue what's going on (virus? food poisoning? bacterial infection?). I hope my doctor can at least figure this one out.
 
Hi everbody, how are you all?
Sorry to see you are not cat, have you had any other changes to your meds?

My holiday was great, although suffered a couple of days of exhaustion. I had my follow up with the rheumy nurse.. I lowered my sulfasalazine dose the other week.. due to lots of nausea and big D. Since then my diarrhoea has stopped.. but BMs have become very very dark and feel very tired. My palms are pale aswell. So she did her routine bloods and checked iron levels too.. so will wait for more results.

I have also moved my rheumy appt forward from 26th july to the 5th july.. to see the actual rheumatologist and not the nurse. This is because my chiari surgery will be in July.. but dont have exact date yet.

All of this has spurred me on to think about future career choices. Im 25, and all I have ever done is work in customer service.. which I enjoy. However, career options in my current job leads to complaint handling and becoming a manager. And I definitely don't want to do that.

So I have been looking at going into education again. One course im interested in is a pharamcy technician apprentice. 4days on the job and 1day in college.
But the lady I need to speak to is not in the office for another week. and I can discuss things in more detail then xx
 
Oh cat! Bleeding is awful. I felt like passing out when I had that.
My hubby had food poisoning and literally couldnt move from our bedroom/bathroom for 4days.. lots of pain in his back and gut.. all from a KFC. Never touched it since.. and me neither.. its put me off for life just watching him being so sick
 
Bozzy, I suspect food poisoning/bacteria too - this came on so suddenly and not my typical symptoms for a flare, and I don't think a virus would make me bleed? I don't know. I called my GP's office and he's not in today, but another doctor in his clinic can see me this afternoon. I'm glad, Monday is a holiday here so it's a long weekend, and I was really not looking forward to trying to ride out the weekend while passing blood. Hopefully I can get some answers from the doctor. I'll keep you guys posted.
 
Thats good that you can be seen.. hopefully can offer some suggestions of help for you.
Its a bank holiday this monday too.. I always get ill on holidays/weekends when doctors arent working haha
 
Thanks Traumanurse, I thought of that too. I've had external hemmies before but never internal ones. I currently don't have external ones. It seems unlikely to me that hemmies are causing this, since it started out as intense nausea, and then as the nausea eased, the bleeding started. But I will let the doc do her thing if she wants to look for internal hemmies - at least that will confirm/rule out hemmies.
 
I just got back from the doctor. They ruled out hemorrhoids as the source of the bleeding, so I likely have something bacterial like salmonella. I get to start Cipro as soon as I produce some stool samples.

But I'm so mad! I wrote a longer post about this in Vent Away, but basically the doctor who saw me is sicker than I am. Seriously, she shook my hand and examined me and then told me gastroenteritis is going around, and she knows this because she has gastroenteritis herself. $%&*!! That is a highly contagious stomach virus! I washed my hands a ton but I am sure with my luck and crappy immune system that I'll probably catch it. I'm so, so angry. I went to the doctor to try to get better and instead I'm going to get sicker, that's just perfect. Seriously upsetting!
 
I was so annoyed when I read your other post.. anybody in the healthcare profession.. be it doctors, nurses, orderlys... etc.. you do not enter your place of work until 48hrs after your last episode of vomiting or diarrheoa. Because otherwise you put your patients at risk.. and as you know, people with IBD and such like, already have weakened immune systems.
I am seething on your behalf!!!! *rant over* lol....


:hug:
 
Thank you Bozzy. I am seething too, as soon as the doctor left the exam room I started swearing! Yeah, my immune system is doubly stressed right now, with not only IBD (even in remission, it's always there and my immune & digestive systems seems to be forever messed up) but also the bacterial infection to deal with - I said this in the other thread, but if I get viral gastroenteritis too, I'm afraid it'll trigger a full-on flare and end my remission. That would be awful, pretty much a worst-case scenario. I do not want a flare!

I'm doing everything I can right now to try to avoid getting sick. I've washed and sanitized my hands like a dozen times to try to kill any germs that might be lurking there. And I read somewhere once that if you breathe in germs, you can drink a really hot beverage and that sometimes flushes the germs from your throat and they don't infect you (something like that anyway). I have no idea if that's really true, but just in case I had a big mug of piping hot chamomile tea as soon as I got back from the doctor! I think I burned my mouth a little bit and I have no idea if it actually helped, but I don't know what else to do.
 
Hey,

So I had an Endoscopy done about 2 weeks ago, my Dr told me she saw some "slight irritation" and then my bloods and stool tests came back normal and now I'm to wait till my biopsy results.

Prior to this I was having regular diarrhea for about a year so I ignored it and about 8 weeks ago I started with such pain in my tummy, throwing up, bad diarrhea and then I noticed after eating certain foods that I would be doubled up in pain or throwing up.
To be honest I have no idea what I have but I'm so fed up, I'm a huge foodie and not knowing what foods are going to "attack" me is frustrating, I'm exhausted all the time and I feel like I'm a burden for those around me.
I feel very embarrassed too, I'm really confident but when it comes to this stuff I get really shy.
I've been in so much pain I feel like I'm going to black out or I've been in bed when I can but I'm having to get on with my pain because I have my husbands mother staying with me.

I also get effected when I consume alcohol ( :( )


XOXO
 
Hi Bluebird, welcome to the forum and the club. Is there a reason they did an endoscopy but not a colonoscopy? Typically they do both at once which is why I'm asking. As for diet, you may want to try the low-residue diet until you start to figure out what your triggers are. Things like white rice, white bread, pasta (if you can handle gluten), plain potatoes (no skins), baked chicken & fish are all considered low-residue. Basically, any bland white foods that are easily digested. Things like applesauce and bananas may be well-tolerated too. Give that a try and see how it goes - if you do well, then try slowly re-adding more foods to your diet.

I'm sorry to hear your mother-in-law is staying with you. Stress can do a number on my guts and I imagine having your m-i-l there is pretty stressful! Hopefully she isn't staying too long?
 
Hi Cat,
Thank you for being so helpful!! I will follow your advice! I keep writing down the foods that upset my tummy which is so far stuff like nuts (peanut butter especially) milk, cheese n so on.
Yes it is stressful having her here, had a huge argument yesterday (made up now) and my tummy has been so so bad today.

I'm not sure why my Dr hasn't, to be honest I don't even know if she's taking me seriously, when I explained my pain she just kinda had that look of non belief :( which makes me feel bad.
 
Hi everyone,

Just checking back in. I had the abdominal X-ray after the patency capsule. The X-ray tech said she could still see the capsule, so I'm not sure what that means. Hopefully it was low, so it's just a matter of it breaking down. I thought it should be gone 30 hours after ingestion.

I hope everyone's doing ok. Cat? I remember reading u were sick.

Hope you all have a good memorial weekend,

Cassy
 
Are you able to get a second opinion from another doc? Is this your GP or your GI? Don't settle for a bad doctor - and a doctor who doesn't take you seriously falls under the "bad" category. Look up reviews (the forum's doctor locator for your area is here: http://www.crohnsforum.com/doctor/us/md/ ) and see if you can't find someone who will take you more seriously.

Keeping a food journal is a good idea, I'm glad to hear you're writing that stuff down. Your triggers sound similar to mine, I can't do peanut butter, nuts, or dairy products either (I can do dairy alternatives like almond milk though). It'll take awhile and a lot of trial & error to figure out what you can and can't have. Keep in mind that things can change over time too! I used to be able to have salads for the first year or two of my illness, but now salad does not agree with me at all. Conversely, I never used to be able to have any spicy foods, they did awful things to me, but now I can at least have mild spices and mild salsa.
 
Hi Cassy, yes, I have some sort of bacterial thing going on it seems. I've been passing blood in my stool, which is NOT normal for me. They think it's something like salmonella or campylobacter. I have to submit stool samples to find out for sure. Also, the doctor I saw today told me she has gastroenteritis (stomach bug) so I may have been infected with that too, lovely.

Wow, it sounds like it was a good idea that they did the patency capsule, it sounds like the pill cam would have gotten stuck! 30 hours could be normal, I guess it depends on your normal transit time. If you tend towards diarrhea then 30 hours is probably way too long.
 
Hiya Cat,

Yeah it is a pain, one of my fave things is chicken nuggets ( yes I'm 25 lol) but yesterday I had them and oh no I can't eat them :(

I know you must of had thought the same thing were you feel like saying "well I won't eat anything then" just because I'm so annoyed, seems like most things give me pain. I've woke up with pain, do you get that?

I think if she won't help me I will, she seemed more interested in my accent than my symptoms lol

All I can do is try what you said, write my food down on my "foods gone to hell" list and wait to see her.

Just so happens I'm going away to newyork and Atlantic city for the next few days, going to be "fun" trying to pick foods that won't make me double over because I have a lot of walking to do.

Thanks for being ever so understanding and helpful xxxxx
 
Hi all :) I've been reading all the posts. I love the foods that
Have gone to hell list idea :) I am still waiting to see my gastro (1 week left) hopefully they'll do something (anything) to diagnose me. Until then, I've been eating one made soup and salad. Anything else makes me swell up :( this disease doesn't like doing any of the things I like doing (eating, eating sugar, eating fast...) it feels like being forced to date someone incredibly boring who punches you in the stomach if you do anything fun :(
 
Cat,
Nothing irritates me more than people working while they are sick, especially if your in healthcare. I work on the cardiac care unit and see these docs come in hacking and sneezing, grrrr. Seriously, the world will not dissipate if
They stay home a few days.

Hopefully, this will go away and you will start to feel better.

I'm hoping no call means nothing to worry about in ref. to the patency capsule. I see the surgeon next week to go over everything.

C
Cat-a-Tonic said:
Hi Cassy, yes, I have some sort of bacterial thing going on it seems. I've been passing blood in my stool, which is NOT normal for me. They think it's something like salmonella or campylobacter. I have to submit stool samples to find out for sure. Also, the doctor I saw today told me she has gastroenteritis (stomach bug) so I may have been infected with that too, lovely.

Wow, it sounds like it was a good idea that they did the patency capsule, it sounds like the pill cam would have gotten stuck! 30 hours could be normal, I guess it depends on your normal transit time. If you tend towards diarrhea then 30 hours is probably way too long.
Click to expand...
 
Little Bear said:
Hi all :) I've been reading all the posts. I love the foods that
Have gone to hell list idea :) I am still waiting to see my gastro (1 week left) hopefully they'll do something (anything) to diagnose me. Until then, I've been eating one made soup and salad. Anything else makes me swell up :( this disease doesn't like doing any of the things I like doing (eating, eating sugar, eating fast...) it feels like being forced to date someone incredibly boring who punches you in the stomach if you do anything fun :(
Click to expand...


It makes you dread going restaurants really when you can't eat much its not only the hassle but also the menus are like a tease lol

My tummy feels like someone's winded me or has almost like a burning sensation and every now and then I get sharp stabbing pains?

If I eat something I shouldn't sometimes I'm also sick as well as the pain or I wake up in pain? Am I alone or is anyone the same or similar? Xxx
 
I get nauseous fairly often (especially right now as I have some sort of bacterial thing going on) but I vomit very rarely. That may be because I'm very stubborn and I *hate* to vomit, so I'd rather sit there and talk myself out of vomiting than just puke and get it over with.

Cassy and LittleBear, good luck with your upcoming appointments! I hope they are productive.

Restaurants are scary, yes. I have worked out which restaurants in my city have things I can eat. If I go to Wendy's, I can get a baked potato and not eat the skin. If I go to Noodles, they have plain buttered noodles and I can get plain chicken to go with it. Any Chinese restaurant will have plain white rice which is always safe for me. Look at menus and see what seems safe - you can always ask for things like sauces to be on the side if you're not sure. A lot of places will now make things gluten-free too if you can't have gluten, or they'll leave the cheese off if you can't have dairy, etc.
 
Well I'm glad I'm not by myself even though its not good for either of you to feel sick :(

Will just have to try my best. Think I'm going HardRock later lol where everything is fried. My order will be "glass of water for my main"

My husbands mother said "you didn't eat much yesterday" but my tummy was so bad and I eat all I could, problem was the stuff we ordered to eat was making my tummy worse, it's like well what do you want me to do? Lol x
 
I haven't been to a Hard Rock cafe in years, but I think the last time I was at one, I had a tuna sandwich? It wasn't fried (I never did well with fried foods even before I got sick). Hopefully there's something you can have that won't make things worse. But hey, if you do get sick, aim for your mother-in-law. :p At least then she'll know that your health is really bad and she shouldn't push you to do so much or eat at so many restaurants!
 
Welcome Bluebird! I am sorry you had to search for us,.but glad you found us when you need it. I hope your mil begins to take you seriously. It definitely sounds like ibd or maybe gluten issues. Good luck to you!

Cat, how ya doin hone?
 
Meg, I'm doing a lot better today! I started Cipro for the suspected bacterial infection, and it made me really loopy (I felt a little bit drunk for a few hours after taking my first dose), but it also let me eat and is making me feel better. I have just pigged out on pizza, chips, and candy - before now, all I was really eating this week was Ensure and toast! So I feel good, I'm quite pleased with how well Cipro is working, even if it makes me feel quite silly.
 

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