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Hey Shan! I was thinking about you when I was reading this article about Habba Syndrome- It may be worth taking a look and even if your symptoms dont matdh perfectly you can still ask for the test. I am Ms. Investigator and sometimes I find ppls symptoms correlate with other illnesses as mine is looking more and more like Lupus although today I was definitive it was chrons- I probably need to stop diagnosing but no one else will give me answers.
 
woah, I feel like I missed so much! I spent the last week traveling with my parents, then my husband. I spent the weekend in London and had an absolute blast!!

Dayz - I didn't know that lupus could affect the digestive system! That's really interesting. The body can be so confusing sometimes, lol. ;)

Cat - I'm sorry you are having to wait another 3 months. :( Hopefully the time will help your body actually show the issue.

QuirkySoul - I'm so sorry that they are putting it off as IBS. I've learned from my own IBS diagnosis to just do what I need to do to try and feel better. I can't handle it when people say I should feel just fine as long as I eat high fiber...~.~

As for me, my GI appt was yesterday. It went well actually. I asked him about Addisons, and he showed me my blood work, and my potassium and sodium levels are normal, so that wouldn't make sense. He has diagnosed Addison's before, and had already eliminated it in my case. We talked about how the nortryptiline is affecting me, and he said that he wants to keep me at 50mg once a day and see if the D side effect goes away.

The most interesting part of the appointment is that I have this ulcer on my tongue and I wanted him to see it. Its on the tip of my tongue, and was getting worse and worse instead of healing. Turns out yesterday it ended up getting so deep it went through my tongue and out the other side....and my GI got really concerned. He then said "this really looks like crohns, but I have no other evidence". I could tell he was completely torn. He told me he worries about crohns every time I come in, but when my tests come back as normal as they do he needs more evidence to pursue it. He gave me a prescription mouthwash to use to keep my mouth clean, but nothing has helped these ulcers so I doubt it will speed the healing.

This was my last time with my GI too. :( He is a navy doctor and his tour in Europe is over...which really sucks, he was the best doctor I have seen since this started. I'm wondering what my next GI will do. I will see them in a month before I go back to the states for 4 months to finish school.
 
Allie, I know how you feel, despite wanting to pass it off as IBS my (soon to be ex) GI keeps mentioning CD, like a broken record!

Meg, how are you feeling today?

My test went well but was more of an ordeal than I thought. I was told with the drink some people have no reaction, some people get gassy/gurgly and some have to rush to the loo... so which one did I get, not funny, was just like a prep, many, many toilet trips passing water out my butt again! By the time test had finished they said the worst should have passed but I could take lopermide like I asked about. Well I took 2 there and then and 2 in the next 10 minutes. I know it was far too many but I had to be able to leave!

So now concentrating on building up my fluids again (as I could drink right up to the test but not during the 4 hours, and of course the laxative effect).

Also eating since I am so hungry, nothing since 9pm last night and at 10pm I had a huge D attack, don't care what it does to me!

Results will be sent to GI tomorrow, they did say halfway through all looks good as expected.
 
Star - Yeah, it is COMPLETELY a broken record. It always gives me a sense of knowing that I'm not crazy, something is wrong...but then not doing anything about it makes it upsetting. I have read that the average # of years for diagnosis is around 10, so I've just had to realize I'm going to have to wait and see what happens. I've realized I really don't want this to rule my life, and I'm going to watch it carefully, rest when I need to, and not worry as much about it.

I hope your test shows something! It sucks to go through all of that, I hope it will be worth it in the end.

Meg - I just reread some of the stuff I missed...I woke up in the middle of mine too! I can completely understand, its one of the worst moments ever. I hope they got you back under quickly!
 
Allie, that is horrible. Why aren’t your symptoms and that you have that ulcer enough? Why do the doctors have to do this to us? Oh Allie, I am so sorry for you. That must hurt something fierce. I’m glad you had such a good time this last week. If you have such worse symptoms than me and can’t get diagnosed, how the heck would I ever? Darn doctors. Darn medical system. They’re all buffoons!

Starr, I’m sorry you had such a bad reaction. I hope they find something.

I’m in a mood today. I asked my higher power to help me accept a normal result. I’m not letting that happen. I cried myself to sleep. Literally, sobbed. I can remember the procedure and that sux. All I can think about is that tube down my throat gagging and fighting the nurses and techs. I woke up during the biopsies of the colonoscopy and was wincing. I shouldn’t remember these tests. I am troubled by that. I am p o’d that nothing is showing up. I am p o’d that they gave me a flyer on how fiber helps when I told the GI before the test that the only way I have found any control over this is a bland diet. I am p o’d that when he asked where the pain is, I told him it is one spot only. Lower right quadrant. That isn’t the case in IBS. I am p o’d he would say IBS when I have symptoms never found in IBS. I am just frustrated and want answers. He dangled a diagnosis in my face and ripped it away. I am realizing I won’t get a diagnosis until I am very sick. That frustrates and scares me.

I don’t know why they didn’t do any biopsies. Maybe since I woke up. I obviously don’t have any signs of GERD (acid reflux) so why do I choke on food? Why do I feel food moving down my esophagus? Why do I have such a time swallowing pills? Huh, huh, huh?

Next Tuesday is going to be hard. It’s going to be emotional. I hope my doc is ready for this basket case. Maybe I’ll take cupcakes to buy him off. Think I could bribe a diagnosis with delicious cupcakes? : )

Okay, enough about me. I’ll get over this.

How is everyone else? Happy Summer!
 
Nope, no more meds. It was too late as they were almost done. I got to feel it come out and everything.

Allie, I too am realizing the same thing. Its like they want us to get sick. It's like they want us to have pieces of our colons removed. I am going to live my life as I have Crohns, diagnosis or not. I know I don't have IBS, you know you don't have IBS. If they won't treat us, we can just self-treat and hopefully delay the inevitable of losing a part of our bodies.
 
I'm so sorry you are so frustrated Meg. :( This entire situation for all of us can be so frustrating...it makes me think of the saying "It will all be ok in the end. If its not ok, its not the end".

That would be awesome if cupcakes would bribe the docs! lol ;)

I think you have every right to tell your GI everything you have told us here. That things don't add up. Even if it doesn't get you anywhere you will have the peace of mind knowing that your doctor has seen your side of why you don't think its IBS.

Yeah, the ulcer hurts very badly. Eating and talking is very hard. I've shown him ulcers in my mouth every time I've gone in, most of the time multiple ulcers in different locations, but this one is very unique. If they could diagnose it by just the mouth I would have probably been diagnosed awhile ago, but I guess they want to see it in other places first. Its also really hard in the fact that there are so many different causes to have ulcers in your mouth, but I'm thinking there is only one reason why one on the tongue would do this. Its definitely not a normal "canker sore".

I agree, I don't treat my symptoms as IBS, I treat them as crohns/autoimmune. I dont push myself or stress myself out if I don't have to, and I eat what helps/ doesn't make the pain worse. I take my pain meds when I need to, else I wont be able to enjoy life.

The way my GI explained "IBS" is that they really just don't understand whats going on, and I think they are taught to "check the boxes" before they diagnose something as serious as crohn's. I know my doctor sticks to the rules and the safe side, which is why my pill cam wasn't done. He did tell me that as long as I feel this way, especially in the long term, that I need to continue regular appointments with my GI to make sure it stays as IBS, or doesn't show more signs of crohns. He isn't writing me off completely, but he has tried almost every test too...its a crappy situation for both sides. :(
 
Dayz, good luck at the GP today - what tests are they doing? I believe there's a few different ones for Lupus, although I don't know much about any of them. Is it all blood tests that's being done?

Also, Dayz, I know you were talking to Shan, but you mentioned Habba Syndrome. What is that? I typed it into Wikipedia and it brought me to the general page for diarrhea. It didn't give any info on Habba Syndrome, and I've never heard of it, and now I'm curious!

Allie, welcome back and glad to hear you had a good vacation! And sorry to hear that you don't get to see the same GI anymore. I hope the next one is good too! That's crazy about the sore going all the way through your tongue, I haven't heard of anything besides Crohn's that could cause something like that! I don't know if this would work, but I wonder if they could take a biopsy from your tongue sore and see if it's got evidence of Crohn's? Is that possible?

Where did you hear that it takes an average of 10 years to get a diagnosis?? That's frightening! I thought I heard the average is about a year, but I could be wrong. I have an aunt by marriage who has had these symptoms since she can remember, and it took her about 30 years of on-again off-again testing to finally get a diagnosis of "indeterminate IBD" (they said her scar tissue is consistent with Crohn's but for some reason they couldn't say for sure that it's Crohn's, but it is definitely IBD). That thought frightens me too, I want to get diagnosed at least before I retire! (Then again with all the doctor bills and other debt I'll probably never be able to retire... sigh!)

Star, keep us posted when you get the test results! And I know what you and Allie mean about the broken record thing. My GI mentions Crohn's and my GP mentions both Crohn's and colitis at pretty much every appointment, but I still feel like I'm getting nowhere. I think that if it were up to my GP, I would have a diagnosis already, but it's not within his authority to say that this is CD. And my GI, although he won't say it's IBD (he likes to say, "IF this is Crohn's...), he hasn't said IBS either, and he's given me a placeholder (non)diagnosis of "chronic non-specific enteritis" which really doesn't sound much better than IBS! At least the "enteritis" part acknowledges that he knows there's inflammation going on, so it's a step up from an IBS dx, but not by much.

Meg, I hope you're doing a little better today. Cry all that you need to, it's definitely an upsetting and frustrating position to be in and I know it all too well. I've shed so many tears over this stupid illness and the frustratingly normal test results that I've gotten. It's not fair that we have to be so sick and yet that's not what it looks like on paper! Sending you hugs and a virtual shoulder to cry on.
 
In the time it took me to write my post, 3 more posts popped up!

Allie and Meg, I'm with you two - I've been living my life as if I have Crohn's. Avoiding fiber and trigger foods, resting when I need to, not overdoing anything if I can help it, etc. The good news is, if we live this way we do have a chance of avoiding surgery, stomas, etc like Meg said. Like I mentioned in my earlier post, my aunt who has been ill with IBD forever, she has never had surgery on her intestines even though she was ill and undiagnosed for 30+ years (she was on pred from time to time, but even so, she wasn't on any long-term meds). I look at my aunt as being my IBD role model. She's such a strong person and has been through it all - well, except for surgery anyway. ;)
 
Allie,
Why doesn't he biopsy your mouth ulcer? If it showed granulomas then a crohn's diagnosis would be more likely.

Glad you had a good time in old blighty!

allieinwonder said:
woah, I feel like I missed so much! I spent the last week traveling with my parents, then my husband. I spent the weekend in London and had an absolute blast!!

Dayz - I didn't know that lupus could affect the digestive system! That's really interesting. The body can be so confusing sometimes, lol. ;)

Cat - I'm sorry you are having to wait another 3 months. :( Hopefully the time will help your body actually show the issue.

QuirkySoul - I'm so sorry that they are putting it off as IBS. I've learned from my own IBS diagnosis to just do what I need to do to try and feel better. I can't handle it when people say I should feel just fine as long as I eat high fiber...~.~

As for me, my GI appt was yesterday. It went well actually. I asked him about Addisons, and he showed me my blood work, and my potassium and sodium levels are normal, so that wouldn't make sense. He has diagnosed Addison's before, and had already eliminated it in my case. We talked about how the nortryptiline is affecting me, and he said that he wants to keep me at 50mg once a day and see if the D side effect goes away.

The most interesting part of the appointment is that I have this ulcer on my tongue and I wanted him to see it. Its on the tip of my tongue, and was getting worse and worse instead of healing. Turns out yesterday it ended up getting so deep it went through my tongue and out the other side....and my GI got really concerned. He then said "this really looks like crohns, but I have no other evidence". I could tell he was completely torn. He told me he worries about crohns every time I come in, but when my tests come back as normal as they do he needs more evidence to pursue it. He gave me a prescription mouthwash to use to keep my mouth clean, but nothing has helped these ulcers so I doubt it will speed the healing.

This was my last time with my GI too. :( He is a navy doctor and his tour in Europe is over...which really sucks, he was the best doctor I have seen since this started. I'm wondering what my next GI will do. I will see them in a month before I go back to the states for 4 months to finish school.
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Allie I am glad you had a good time with your husband! I think we all need a mini vacation on a cruise with lost of bathrooms and the most delicious bland foods (ok that dosent make sense but a girl can dream).

Cat: I have been trying to research it as well but all that comes up is diarrhea. I actually saw a show on Myster Diagnosis and I was almost positive she was going to have chrons and it turned out to be Habba Syndrome. Some people vomit, others only have D, others have pain and nausea. It is very easily treated but I just thought I would put it out there because I am starting to explore other options for myself. My doc is almost certain it is not chrons because I dont have that much D and when i do its only 3x a day. She said with chrons I would be pooping a lot more than that. But the cramps, joint pain? none of it makes sense. I went to see her today and my blood work came out fine which rules out RA and lupus. So I am back to square one. She did give me a steroid which is in the family of predisone but she said it is packages and has a different coating. She only gave me some to last two weeks as well as tapering off slowly. She perscriped a suppository for my booty pain and another sleeping pill. She said if I feel better on the steroids I will be on a maintenance med like asacol and further testing is being postponed as everything looks normal. I am scared the steroids wont work : ( Isnt two weeks such too short of time to see a difference. She said I should see a difference in a matter of days...I will keep all of you updated.
 
Cat and littlemissh, that is a fantastic idea. It makes total sense..he was going to refer me to a specialist to see if there was a better way to get it healed, I have no idea what kind of specialist, but he decided it would probably heal before I could get an appointment with anyone. I really wish I had thought about a biopsy...now the opportunity is gone. :( maybe if somehow it is still there at the end of July (oh god I hope not) or if I have another one (I usually do) I will ask my new GI next time.
 
Give him a ring or drop an email asking him if he thinks he could arrange it. It may not have occurred to him, or maybe mouth ulcers exhibit different histology to lower gut crohns. Would be interesting to know because several undiagnosed have mouth ulcers yet they are never biopsied...it may be he just never thought of it.
 
They did tell me half way through the test that it was looking okay. Even if I come back positive for Small Bowel Bacteria Overgrowth, it can occur for no reason, or it can occur with CD. I *suppose* 5 years of SBBO could throw off my other symptoms although it is not typical. If CD/UC cause external symptoms, then I guess another bowel problem might also.
So I don't feel it will get me anywhere!! lol.

I have my upper endoscopy soon (although, I am hoping latest bloods came back with anemia so I can try for Pill cam funding again), and then see Rheumy a week after that. No more tests planned and GI "keeping an eye" on results but not planning to see me in clinic. I am considering the immunosuppressant trial but nowhere near ready to make a decison yet.

So, I have no idea what is next really.
 
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Dayz: I don't have cable but I'll see if I can find that episode of Mystery Diagnosis online. That sounds interesting, and let us know if you find out anything further about Habba Syndrome. As for you not having much d, from what I've read on the forum that doesn't necessarily mean anything. Some of the crohnies here have constipation and a lucky few seem to have normal stools (but other symptoms like pain, nausea, etc). So it still could very well be Crohn's. With regards to your steroids, do you know the name of what you were prescribed? With the special coating it sounds similar to Entocort. Steroids can take anywhere from a day to a month to kick in, so I'm not sure if 2 weeks would be long enough or not. I know that with pred, I felt better literally immediately - within one hour of taking my first pred tablet, I already had more energy, and by the end of the first day my symptoms were almost completely gone. Entocort took 9 days to kick in for me and I've heard others say it can take up to a month. Sorry that's not much help - if it doesn't work after the 2 weeks are up, you might want to call your doctor and see if they can give you another few weeks of it.

Allie, I concur with what Little Miss H said - call or email your GI before he leaves and see what he says. Since he's such a long drive away, maybe he could have you go to your GP or the German GI to do the biopsy, but maybe they could send him the results so that he could look them over? Like Little Miss H said, I'm also not sure if mouth ulcers would show Crohn's in the same way that gut ulcers would, but it's definitely worth a shot. I'm just getting over either a canker sore or a mouth ulcer myself so it'd be interesting to see what you find out. How does one tell the difference between a canker sore and a mouth ulcer anyway? I get (what I think are) canker sores fairly regularly, and sometimes they stick around for weeks and hurt quite a bit. I just always assumed they were canker sores but maybe not!

Star, I'm assuming they're looking for "bad" bacteria or certain types of bacteria in the bowel bacteria test? I don't know much about that test so I'm curious. There have been a few studies posted recently (I believe in the books & research part of the forum) that say things such as, people with IBD have noticeably different bacteria in their bowels than people without IBD. So I'm wondering how in-depth that test goes, do they look at all the various bacteria present in your bowel, and if so, could an assumption of probable IBD be made based on what bacteria are present/missing? Hmm, this kind of stuff is very interesting to me. At any rate, let us know what you find out. And best of luck on the upper endoscopy in a few weeks! And of course let us know if you do decide to do the immunosuppressants trial. I would looooove to do something like that if I had the chance, it sounds like an excellent opportunity to hopefully treat your illness, maybe even go into remission, and also rule out IBS as that wouldn't respond to immunosuppressants. If it were me I'd have jumped at the chance immediately! Just my two cents of course.
 
Cat-a-Tonic said:
Allie, I concur with what Little Miss H said - call or email your GI before he leaves and see what he says. Since he's such a long drive away, maybe he could have you go to your GP or the German GI to do the biopsy, but maybe they could send him the results so that he could look them over? Like Little Miss H said, I'm also not sure if mouth ulcers would show Crohn's in the same way that gut ulcers would, but it's definitely worth a shot. I'm just getting over either a canker sore or a mouth ulcer myself so it'd be interesting to see what you find out. How does one tell the difference between a canker sore and a mouth ulcer anyway? I get (what I think are) canker sores fairly regularly, and sometimes they stick around for weeks and hurt quite a bit. I just always assumed they were canker sores but maybe not!
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They are the same thing, I guess that different people call them different things. When I was a kid, I got them all the time, and my mom always called them "ulcers." Then other people seemed to call them "canker sores" and so I started calling them that, since no one seemed to know what an ulcer in the mouth was when I'd tell them what was wrong.

http://en.wikipedia.org/wiki/Aphthous_ulcer

I've wondered about the possibility of biopsy-ing those things. Bet it would hurt like a B!!
 
I don't know about if they would do a biopsy of one in your mouth or not...but, maybe you could suggest a culture swab ? It would be much less painful than a biopsy, and easier, I would think. Just a suggestion :)
 
I am always interested in the views of others Cat :) The downsides I mentioned already are still very much valid to me but I am considering it all the same.

If I did take the drugs and they worked, I would be told it was an auto immune disorder throwing off bowel issues, so no further and they wouldn't consider IBD. I have had as much hinted to me. :voodoo:

Oh and I think I forgot to say Complaints service meeting re-arranged for next Thursday afternoon.

I don't know much about the bacteria test. I think the one I had measures the level, whether that is normal etc, I don't think it goes into specifics but not sure.
 
Gosh you've all been busy posting since I last posted!

Quirky, I'm so sorry they've come back with IBS again :( It's awful when you jut know you shouldn't be being 'fobbed off' with it. :ghug: I wish that I could do something more than offer hugs sweetheart. I too am surprised they didn't take biopsies.

Cat, I posted about my surgery in this post here.
It wasn't in this thread so don't worry for missing it. Refering to an earlier post you wrote, I find that antispasmodics don't do a lot for the abdominal spasms, but they can help with menstrual cramps. I think alverine citrate (spasmonal) was the one which I remember helping most for that. I don't take any of them any more as they don't help with my bowel problems, and I try not to take things unnecessarily.

I went back to see my GP today for the results for the polyp removal and the biopsies that were taken during my colonoscopy 2 weeks go but no results have come back yet... seems to be taking ages :( but for now at least I'm slightly preoccupied with recovering. I've barely eaten much since the colonoscopy because of the cyst and the surgery and I'm sleeping a lot, which I think has done my bowels some favours having a bit more rest than normal. I'm still bloated from surgery so I can't tell if I have any changes with that. Ho hum... I'll try and get hold of the clinic who did it tomorrow and see if they have the results.

Sorry for not replying to you all properly yet, my head is a little foggy from all the pain meds but I am reading it all and sending positive vibes to you all. I'll try harder to keep up now and support you all as well as I've been supported on this forum :)
 
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Habba Syndrome

Hi Cat and Dayz,
The Habba Syndrome thing sounds very interesting. They have looked at my gall bladder and had said that it looks normal, but I never mentioned the Habba Syndrome thing because I never heard of it, so I may ask questions when I go back to my GI. Cat, my CT scan is Friday morning. I was going to ask you two- I know that you both said you have problems with D, as do I (about 5-10 times per day) but my main complaint and major problem is vomiting. I vomit ALL the time, especially in the morning, and if I try to eat anything thicker than soup, I get violently ill and either vomit or have major stomach pains. Is this a problem for either of you? Since I have problems with vomiting and my test is in the morning, I am worried that I will vomit up the barium I have to drink for the test. Any suggestions? :yfaint:
 
I've never heard of Habba Syndrome till it was mentioned by Dayz. I have just had a look and it seems to be prominantly people diagnosed with IBS-D type that Habba was interested in researching for his own-named Habba Syndrome, believing the Gallbladder to be the route of the problem. Interesting theory, but it's a shame it's not considered a totally valid one on some of the sites I've looked at. This site gave a good description of sympton differences though should any of you want to have a look...

Many cases of irritable bowel syndrome (IBS) also Habba Syndrome. IBS is characterized by abdominal pain / cramps, altered bowel habits (constipation or diarrhea), no change in fasting, gallbladder normal operation, the correct answer to antispasmodics and unpredictable response to bile resins. Habba The syndrome is characterized by any abdominal pain, always post prandial (after eating) diarrhea, improves with fasting, gallbladder poor functioning, poor response to antispasmodics and excellent response to bile acid resins.
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Habba Syndrome Gallbladder Disease
 
She did give me a steroid which is in the family of predisone but she said it is packages and has a different coating. She only gave me some to last two weeks as well as tapering off slowly. She perscriped a suppository for my booty pain and another sleeping pill. She said if I feel better on the steroids I will be on a maintenance med like asacol and further testing is being postponed as everything looks normal. I am scared the steroids wont work : ( Isnt two weeks such too short of time to see a difference. She said I should see a difference in a matter of days...I will keep all of you updated.[/QUOTE]

I was on prednisone for two and a half days before I stopped due to side effects. In those 2 days, I had no LRQ pain or joint pain. It was bliss! Except the pesky side effects, which is my body being allergic.
 
What I would do for a short run of pred to see what it did....my doctors are too scared to do it... :( Maybe I can convince my new GI (I'm asking my husband to come with me for backup lol) when I see him in a month!

oh and I wish I could call my GI and get something set up biopsy wise, but in the military they have to do things to get ready to leave, so he isn't available anymore. :( And I agree with you guys, a biopsy might really hurt...but if it gets me answers I'm willing to do it.
 
Hello everyone! I am sorry for coming on here and venting AGAIN but I really need some kind of support. I am falling apart. I havent slept all night...well here it goes.. on top of my fierce joint pain I now have what I feel is a fistula. I researched and everywhere it says that steroids only make it worse. I was so excited to start my pack tomorrow and now I am super scared. My symptoms are sore butt it feels inflamed and like something is crawling inside. I have read and re read the threads and people suggest it may be a fistula or abscess brewing:yfrown: I know its not hemorrhoids. So now I am stuck. Do I take the steroids and possibly risk making this worse or do I not take them and go another route? I will be calling my doc tomorrow but she is my GP and I feel she wont know much. My GI is useless. I hate to say this but I feel like giving up! I cant take this anymore and I have a fistula I will just be done. I know all of you are having a hard time with this too but I have nowhere else to go. I am so tired and I am just going to cry my eyes out for another hour....
 
I don't have much advice on the fistulas but I wanted to give you lots of *HUGS* Dayz! I would contact someone if you are worried about the steroids doing more harm than good.I hope you are able to get some rest soon!
 
David said:
Those of you who had colonoscopy biopsies come back normal, how many of you know that they were stained for mast cells? Some reading for you. And the more systemic version.
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Very interesting, David.

http://www.gipath.com/files/Mastocytic Enterocolitis PCR_pdf.pdf

Esp. the part about how it can easily be dxed as IBS-D b/c of the lack of abnormal endoscopic findings.

I just looked at my pathology report for my colonoscopy, and for all the specimens from various parts of my colon and TI, it just lists "H and E" for stains. A quick google seems to reveal this is the normal, everyday stain for histological samples. For my EGD, stains listed are H and E, CD3 (used to detect celiac apparently), and H Pylori. So I'm guessing that in my case, there was no staining for mast cells.

Did anyone else see this? Cat, check out the symptoms list on Wikipedia link: low blood pressure is among them. Also, it will respond to steroids.

http://en.wikipedia.org/wiki/Mastocytosis
 
!!! I don't believe my biopsies were checked for mast cells. That wikipedia link sounds a LOT like what I have! And oddly enough, my allergies have been going crazy the past couple of days, and the d started shortly after the allergies kicked in. I took some Claritin, and the d seems to have stopped. According to that wikipedia link, antihistamines are effective against treating mastocytosis. Very interesting! I don't have another GI appointment until September, so I think I'm going to see my GP soon and ask about this.

I didn't see anything in the wikipedia link about flare ups or CRP though. I have had elevated CRP in the past, indicating inflammation, and of course I go through periods of flare-ups. I wonder if those things occur in mastocytosis? I'm assuming there's inflammation if it responds to steroids? I'm going to do more googling, I'm very intrigued now!
 
I know my biopsies were never checked for mast cells. Now, I am diagnosed with Lymphocytic Colitis, but I've noticed three things:

1. A couple days before a bad flare, I'll get really weird itching in various places such as my nostrils. It's gotten to the point when I feel that, I think, "Crap, I'm screwed soon."

2. I found a natural antihistamine derived from pineapple I happened to begin taking has helped my pain significantly.

3. During especially bad flares, I have to wipe many times a day, even in the absence of bowel movements. During mast cell degranulation, mucus is produced. I'm often reading about people on here pooping out mucus as well.
 
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This mast cell thing sounds interesting. I'm glad you have found out what is going on with you David. I long for solid answers. IBS is so vague, and for so many of us here, not inclusive of all our symptoms. Thanks for the idea of ways to further probe our conditions. Tee hee. I said probe. How many of us are tired of that?!?!

David, does it cause anal itching? I get bad itching inside, like on the cheeks, but deep inside. I feel like I need to scratch my butt cheeks quite often, when I am bad.

I was put on Hyomax-SR. Cat, I think that's what you got. My head is hurting a bit more. Headaches are a side effect. Doh, I already get that. And dizziness. Doh, I already get that. And blurry vision. Yep, you guessed right. I have that too. And dry mouth. Get that with the borderline diabetes. Fun times and I'm only on my second dose. Not seeign much difference but diet has been bland and I am pretty controlled right now, except the pain. Still having LRQ pain.
 
Meg, yep, I'm on hyoscyamine which I believe is a generic form of hyomax. This is my 3rd day on it and I haven't noticed any difference. Fortunately I haven't had any of the other side effects except for the dry mouth. I'd probably get headaches too if it weren't for the Amitriptyline!

David, I get tons of mucus! It doesn't leak out like you mentioned but it definitely comes out when I "go". Sometimes ONLY mucus comes out or a lot of mucus and just a little poo. This is all very interesting to me. I'm going to print out some info about mastocytosis and get a GP appointment and discuss all of this stuff with him (I'd go to my GI, but I just had a GI appointment on Monday and he had me set an appointment for 3 months and I should only see or call him if I flare or get worse/new symptoms). I suppose I could call my GI but I need to ask my GP about a few other things anyway so I'll start there.
 
quirkysoul said:
I was put on Hyomax-SR. Cat, I think that's what you got. My head is hurting a bit more. Headaches are a side effect. Doh, I already get that. And dizziness. Doh, I already get that. And blurry vision. Yep, you guessed right. I have that too. And dry mouth. Get that with the borderline diabetes. Fun times and I'm only on my second dose. Not seeign much difference but diet has been bland and I am pretty controlled right now, except the pain. Still having LRQ pain.
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Hi, Quirky - I take hyomax. The one I have is sublingual and I only take on an as-needed basis. You are taking it every day? I just looked at mine and it's Hyomax-FT. Probably different usage. But I've never noticed any side effects, however I rarely take it. It works sometimes with the cramps for me. Hope you feel better soon.
 
Cat-a-Tonic said:
Meg, yep, I'm on hyoscyamine which I believe is a generic form of hyomax. This is my 3rd day on it and I haven't noticed any difference. Fortunately I haven't had any of the other side effects except for the dry mouth. I'd probably get headaches too if it weren't for the Amitriptyline!

David, I get tons of mucus! It doesn't leak out like you mentioned but it definitely comes out when I "go". Sometimes ONLY mucus comes out or a lot of mucus and just a little poo. This is all very interesting to me. I'm going to print out some info about mastocytosis and get a GP appointment and discuss all of this stuff with him (I'd go to my GI, but I just had a GI appointment on Monday and he had me set an appointment for 3 months and I should only see or call him if I flare or get worse/new symptoms). I suppose I could call my GI but I need to ask my GP about a few other things anyway so I'll start there.
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Sounds like from what you've said before, you have a good GP. I think that's a great place to start. Doesn't Allie have low BP problems as well?
 
May, yes my GP is great. He believes I definitely have some form of IBD. He was the one who diagnosed me with arthritis, too (I was so happy to finally be diagnosed with SOMETHING even if it isn't necessarily related to my guts - although it could be). He also took my husband on as a patient as a favor to me even though his office wasn't accepting any new patients. He's a good doctor and a good guy. I'm hoping he can help somewhat. In my googling, one of the articles I read said that if mastocytosis is suspected and gastro symptoms are involved, a GI is the best doctor to see. So I'm not really sure how much my GP will be able to do. But he could probably confer with my GI and get me seen sooner by my GI if need be.

Yeah, I believe Allie mentioned low BP - I know she said she's fainted several times before. When I went to my GI on Monday, I was feeling mostly okay, and my BP was 92/64. So it's that low when I feel normal (and I always feel stressed at the doctor, so I'm surprised it was that low - I though stress usually makes BP rise).

The only thing that bugs me about all this is that I'm already essentially treating mastocytosis. I already take a PPI, an anti-depressant, and anti-histamines, and I'm still having some symptoms. Makes me wonder if maybe I have both mastocytosis and IBD? From the googling I did that sounds fairly common.
 
My BP is low too. I crave salt. I always say, with my bp I can eat as much salt as I want! I wish that were true, but I certainly can eat it, unlike those with high BP.
 
Cat,

From the reading I've been doing, think of it along these lines (note this is all MY theory): let's say you get poison oak or poison ivy. It sucks and you treat it with antihistamines and steroids and it takes awhile to go away but it finally does. Three days later, you go roll around in poison oak again. Queue up 10 more days of life sucking despite taking another round of antihistamines and steroids. And if you continue to roll in the poison oak, then other issues arise as well.

I think we're in a vicious circle. Part of the key is not to roll in the "poison oak" that is affecting our digestive system. Whether that is gluten, dairy, or whatever. I think this is a really complicated and vicious cycle we're on. I've only just begun to understand it and have a lot of research and dot connecting to do, but I'm pretty excited about the potential implications.
 
Cat-a-Tonic said:
The only thing that bugs me about all this is that I'm already essentially treating mastocytosis. I already take a PPI, an anti-depressant, and anti-histamines, and I'm still having some symptoms. Makes me wonder if maybe I have both mastocytosis and IBD? From the googling I did that sounds fairly common.
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Or maybe mastocystosis and IBS. JUST KIDDING!!! :rof: Don't kill me...
 
Sounds like it is really a new thing they are looking for from what I have read today. Probably none of us were checked for the mast cells. Only thing is, you'd have to go under the scope again, eh? Boooooo!! :thumbdown:
 
Indeed. I'm still conducting research but if it continues to add up, I'm going to suggest people here who are slated for a colonoscopy to request a mast cell stain.
 
Doesn't seem like it would hurt. Maybe the pathologist's bill would cost more, but can't be more than having another dang c-scope. While they've got the tissue samples, why ever not? And it might be one of those things that with time they'll look for on tha regular basis, but in the meantime it's so new apparently, perhaps some GIs aren't up on all the latest research.

Can the mast cells show up all through the GI tract? Would it be beneficial to have biopsies from EGDs stained for the mast cells as well?

Do you think you have this in addition to what you were dxed with? I know there is another member on here who treated his Crohns with anti-histamines until that didn't work so well anymore. I don't think he knew he had Crohns until he went to the doc but I could be wrong. Or do anti-histamines in general help ease most inflamed bowels?
 
Wow, this is all very interesting!

I found it very funny that I was being talked about. ;) I have fainted several times while flaring, but everytime my BP is measured at appointments its high. Granted, I can get very nervous at doctors appointments, so I don't know how accurate that is. While I was hospitalized it was either normal or high. I have never been able to figure out why I have the fainting spells actually, but usually I am in a high amount of pain when it happens. The time in public (in a gas station..not my finest moment), I had a wave of nausea, then while I was trying to pay I was out cold.

I am definitely going to look into the mast cell stain and this illness in general. I am the same as cat, I have tons of white mucus in my stool, and I have been diagnosed several times with severe IBS-D. Thank you so much David for suggesting this to all of us! Maybe it will get some of us out of the "undiagnosed/stuck" column. :)
 
Mayflower537 said:
Can the mast cells show up all through the GI tract? Would it be beneficial to have biopsies from EGDs stained for the mast cells as well?
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I'm not 100% sure but believe so. I still have a lot to learn about this. I've only been reading about this for a short time.

Mayflower537 said:
Do you think you have this in addition to what you were dxed with? I know there is another member on here who treated his Crohns with anti-histamines until that didn't work so well anymore. I don't think he knew he had Crohns until he went to the doc but I could be wrong. Or do anti-histamines in general help ease most inflamed bowels?
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The theory I'm working with right now is this (and note, this is MY theory which I will no doubt be updating as I learn more so you should probably just ignore it for now :) ):

1. I eat something I'm allergic to such as gluten.

2. My mast cells get pissed (this is the medical term) as I have an allergic response. Inflammation occurs which causes issues of its own.

3. During mast cell degranulation, antimicrobial cytotoxic is released which affects the natural balance of my gut flora.

4. My gut flora gets out of whack so some bad bacteria and/or yeast overgrowth occurs. This causes my lymphocytes to be called out in mass to fight the "infection" which causes MORE inflammation. As lymphocytes ARE tested for during biopsy, I'm diagnosed with chronic lymphocytic colitis.

5. I continue to eat what I am allergic to and/or slip up often enough that the cycle continues.

6. The stress hormone corticotropin-releasing hormone (CRH) affects gut permeability thought mast cells. Mast cells also have a receptor for it! Too much and you can get leaky gut sundrome. So all of a sudden crap that shouldn't be getting into your blood stream, is. Thus the arthritis and all the other symptoms we experience all over our bodies.

7. Rinse and repeat the vicious cycle.

As for anti-histamines helping ease most inflamed bowels, I don't know. Only if there is a histamine response and I'm guessing not ALL inflamed bowels have a histamine response involved.
 
David, I like all your theories. My husband has medical theories as well but his revolve around alcohol. He once had a bad case of the flu, and in his fever-haze he remembered that doctors use alcohol to sterilize their instruments - in other words, to kill germs. So he thought that if he got drunk, the alcohol in his system would kill the flu germs. ;) And more recently, his kidney stone seemed to be partially blocking the flow of urine, and he was having a hard time urinating. So he then remembered that drinking alcohol makes him have to pee a lot, and he downed half a bottle of wine. That one worked even less well, as the kidney stone made him vomit a lot, so the wine came right back up in no time and he felt even worse.

In a nutshell, David, I think your theories sound more realistic than my hubby's booze theories do (BTW, he's not an alcoholic by any stretch, he rarely drinks, he just seems to put too much thought into drinking for some weird reason!).

I've definitely learned a lot today - hadn't even heard of mast cells before! I'm going to make a GP appointment for a few weeks from now to discuss this (that way I can also give this new antispasmodic med a proper chance, and ask to be taken off of it at my appointment). That'll also give me some time to find a lot of good info and print it to show my GP. My GI said on Monday that there's no need for me to have a repeat c-scope for a few years at least, unless I get worse or get new symptoms. I might be able to convince my GP to order a new c-scope though. My first and only c-scope was in April 2010. I feel like I need a do-over, with mast cells tested for and more biopsies taken.
 
Cat-a-Tonic said:
David, I like all your theories. My husband has medical theories as well but his revolve around alcohol. He once had a bad case of the flu, and in his fever-haze he remembered that doctors use alcohol to sterilize their instruments - in other words, to kill germs. So he thought that if he got drunk, the alcohol in his system would kill the flu germs. ;) And more recently, his kidney stone seemed to be partially blocking the flow of urine, and he was having a hard time urinating. So he then remembered that drinking alcohol makes him have to pee a lot, and he downed half a bottle of wine. That one worked even less well, as the kidney stone made him vomit a lot, so the wine came right back up in no time and he felt even worse.

In a nutshell, David, I think your theories sound more realistic than my hubby's booze theories do (BTW, he's not an alcoholic by any stretch, he rarely drinks, he just seems to put too much thought into drinking for some weird reason!).

I've definitely learned a lot today - hadn't even heard of mast cells before! I'm going to make a GP appointment for a few weeks from now to discuss this (that way I can also give this new antispasmodic med a proper chance, and ask to be taken off of it at my appointment). That'll also give me some time to find a lot of good info and print it to show my GP. My GI said on Monday that there's no need for me to have a repeat c-scope for a few years at least, unless I get worse or get new symptoms. I might be able to convince my GP to order a new c-scope though. My first and only c-scope was in April 2010. I feel like I need a do-over, with mast cells tested for and more biopsies taken.
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Freaking hilarious about your your husband's theories, Cat. Poor thing. Sorry that didn't work out better for him. I think David's theories are a little more probable. :)

If I ever get significantly worse, and have to have another c-scope, I'll definitely ask about this too. And in your case, Cat, maybe another year is enough for something to show up.
 
May, hubby's had some bad theories about my illness as well. The one that springs immediately to mind happened during my first flare, when I thought I just had a really bad virus. I was nauseous, having d, not able to eat ANYTHING and barely able to even drink water. Hubby thought I was letting my guts boss me around and that I needed to take charge and eat some fiber and show my guts who is boss (seriously). He made me a big bowl of popcorn (seriously!) and plopped it down in front of me. I ate one kernel, it hurt all the way down, and I passed the bowl right back to hubby. When his kidney stone pain first started, it was LRQ pain (he told me at one point he thinks he might have Crohn's too) and before he was diagnosed with kidney stones, he ate a LOT of popcorn under the same pretense - to show his guts he was boss and he wasn't going to put up with that pain. Well, the popcorn didn't hurt him, because his pain ended up being from kidney stones and not from his guts. But still, I felt like he was playing with fire eating all that popcorn! Eek!
 
I wish I would have known to ask about this Mast cell thing a few days a go when Austin (my son) had his colonoscopy :/ All of his symptoms came on abruptly the night he was stung by a jellyfish and had a moderate/severe allergic reaction to it. This happened on Easter Sunday and he has been exhibiting symptoms ever since....
I am very interested in this now ! Thanks for posting David :)
 
Saw a GP yesterday, could only get one set of blood results but those were fine- how am I not aneamic!!!! Soooo frustrated.

Emailed Rheumy today to update him, asked for any blood tests he wants to be done before the appointment 20th July to save time, so asked to send the forms to me. Also any other stuff he may want to order in the meantime. I am really looking forward to discussing the immunosuppressant trial with him too, a medical perspective would be really good as I am struggiling big time with the decison. Won't make it in July but will ask to see him again in 2 or so months, I need more time.
 
Star: I know that's one tough decision! but either way it looks like they are at least doing something to help you out and make things better. I hope everything turns out fine for you and that if you decide to go through with it that it helps you find some answers.

Cat: that is too funny about your husbands theory- It made my day yesterday!

I hope everyone is doing well today!

I am still worried about my "fistula" I called my doctor and explained my symptoms to her and she told me to try a steroid suppository. I read that it can actually make it worse if it is indeed a fistula. So thats out of the question. I called her again today to ask for a pelvic MRI but had to leave a message with her nurse. I called my GI and his nurse didnt even know what a fistula is! I would really like to know what the heck is going on. Very frusterated : (

I am on my second day of steroid treatment and I feel good (except for my butt problems lol). I am really not sure if i should attribute this to the steroids. I hope it remains this way.
 
I don't have an official diagnosis yet

I don't have an official diagnosis yet here is a little bit about my story i may have crohns diease my reg doctor is sending me to a GI doctor to be tested for it because something is really going on with me i have been sick throwing up off and on and having the diarrhea for 2 weeks now and also having alot of stomach pain i am scared because there is something really going on at first my doctor throught it was the flu but i am not getting any better what should i know before i go to the GI doctor? and by the way my name is leah and i am 26 years old and married and i have alot of problems that is causeing me chronic pain i have a diease called endometriosis and also have fibromyalgia to its a sister to endometriosis atleast thats what i have heard and now my doctor thinks i could have crohns and also when i had my 3rd surgery for the endometriosis the doctor who done the surgery said my colon is very very inlarged its 3 times the size it should be could that be because of crohns?



here is a update on my story sorry this is going to be a long post with giving some updates i went to my endometriosis doctor today and told her what was going on and when they checked my weight its 128 right now but i know i have lost more then that before i started to get sick last week my weight was 132 or i think my weight was 138 before i got sick last week and i am worried about it now and the stomach pain is getting worse but i have had this trouble with keeping my weight up before i met my husband and got married my weight was only 84 or 85


all this has been going on for about 3 to 4 weeks now if not longer i called my GI doctor office today and made a appt july 7th but when i told them i have blood is my stool they said if someone can not make it for there appt they will get me in sooner then my appt i am having awful stomach pain and i hope its not crohn's diease like my reg doctor thinks it is i do have alot of the signs of it but i am not saying i have it and my doctor is not saying i have it he just thinks i may have it but wont know for sure till i have a scope done and get blood work done to can ev 1 please please pray that its not crohn's diease


the stomach pain is only getting worse and its been really hot here and thats making me hurt worse with the fibro i have me and my husband went swimming the other day where we live they have a indoor pool and hot tube and we got in the pool swimmed and then got in the hot tube but i did not stay in the hot tub very long because i could not take the heat from the water but it was helping me to relax which was good


we may go swimming again tomorrow its going to be 94 or 95 here and thats not counting the heat index so no hot tub for me but anyways how is ev 1 else doing hope ev 1 is having a pain free day and are doing ok but i will update when i have my appt good night ev 1 take care ev 1


by the way me and my husband have been married 2 years now we got married june 6th of 2009 it dont feel like its been this long the first year was the hardest for us here is a list of my all sytomps :


vomiting , nausea,diarrhea,blood in stool,abdomial pain thats getting worse with every day that passes,losing alot of weight ,fatigue,fever off and on and i can barly even eat or drink anything because i will throw up and i will get the ,diarrhea its like water i am feeling awful at the min i really hope they can get me in sooner then my appt i weight is down to 128 when before it was up to 136 i think it was and now its going down fast shy dont get me wrong i am just telling you what my doctor said and what i read when i looked it up and also got a book to read just in cause i do have it and i am not saying i do but like i said i have almost all the signs of it ill update if i get appt sooner and will keep everyone posted as much as i can



i was in the hospital last week for 3 days because the stomach pain and blood in my stool and i had a scope done and the GI doctor that did the scope said its just my IBS acting up but my reg doctor told me the other day there is no way that its the IBS thats causeing me to be this sick i have to keep going to the er because i can barly drink or eat anything without throwing up or it going staught through me i just took my stool samples back to the lab today my reg doctor thinks its still crohn's but the GI doctor from the hospital that did the scope said its not my reg doctor not taking his word for it and is trying to find out whats going on with me:(
 
So sorry to hear what you're going through :( I'm afraid with your symptoms it is likely to be something you rather wouldn't have. Frustratingly though, as I am sure you have seen from here, CD can take an awfully long time to be diagnosed.
 
Iam so sorry you are going through this. I know it is very hard, I get very impatient with all of this and the testing. Its awful. You have found the right place to vent and to let out all of your frustrations and fears. Do you have a strong support system? Your symptoms does sound pretty serious but your doctors are going to find out whats wrong whether its chrons or not. I am sure that you will find treatment at least to alleviate your symptoms. Have they given you anything at all? Have your tried alternative treatments?

My grandmother was very sick with the same symptoms as mine when she was younger. She had blood in her stool with a lot of mucus and she said every bone and muscle in her body hurt. She said she would roll around in her bed all day from the pain. She got so sick that she lost so much weight and couldnt even walk. She went to a natural medicine doctor and was better in three months. Now I am not saying we should dismiss chrons but I dont think it would hurt to try some alternative treatments. I will find some information and post it here in case anyone is interested. If anyone one is interested in my grandmas story you can PM me. I just found this out and was shocked.

I genuinely hope you get better and that you are able to find out what is going on.
 
i am about ready to go to the er because the stomach pain is getting even worse and can't drink or eat anything with out it going through me or thowing up everytime i eat or drink anything will give a update as soon as i can
 
If you are vomiting, then it is definitely time to go to ER. Sorry to hear you're I'll. Keep us posted if you can.
 
Hi Leah and welcome to the club, and I hope you don't have to be a club member for too long. Sorry to hear you're so unwell, I hope the ER is able to get you some relief. Your regular doctor is correct, IBS wouldn't be causing things like blood in the stool or weight loss or fevers. Keep us posted when you are able to and let us know how it went at the ER. Sending hugs and happy thoughts your way!

Dayz, I hadn't heard that, about steroids worsening a fistula. I know I've read on the forum that Remicade can help heal fistulas, but most doctors wouldn't put an undiagnosed person on that hardcore of a med. I'm not sure if any other meds are effective at healing fistulas. I haven't had a fistula so I don't know a lot about them. I saw that you had posted about this in the general IBD section of the forum, so hopefully someone there can give you some answers! In the meantime, glad to hear that the steroids are making you feel better except for the fistula.

Star, sorry to hear that your blood tests were normal, how frustrating! I know there was a thread awhile ago about this, you might want to search the forum. Something about how there's several different things that they can check for anemia, and ferritin is one of them. Someone posted that their iron levels were fine but their ferritin levels were low (or something like that, sorry it's been awhile since I saw that thread) and technically because of the low ferritin she was actually anemic, even though her iron was in the normal range. It was something like that anyway. So the next time you talk to your GP or rheumy, you might want to ask about that.

I hope everyone else is well. I'm doing pretty well today. I'm a little bit sore, because I worked out yesterday for the first time in well over a year. I used to lift weights & jog on the treadmill 3 times per week before I got sick, and I went kayaking a lot too in the summer of 2009. I used to be fairly fit! Then I got sick, and my first 3 flares hit in Oct, Nov, and Dec 2009. After those 3 flares knocked me down, I felt too weak and sick to exercise anymore - I just didn't have enough spoons. Now that I'm finally feeling more or less okay most of the time, I've been able to put weight on again, and I put a bit too much on lately. So I decided to try to start working out again. I'm taking it slow, going to try to ease back into it because I don't want to stress my body too much too fast. I'm starting with 1 day per week of moderate exercise and going to go from there. So I worked out yesterday for the first time in a long time, and I am pretty sore today! It hurts to lift my arms, ha ha. There's a little gym in the basement of my workplace, and there are 7 weight lifting machines in that gym. One for the abs, one for the legs, and a whopping 5 different machines for the arms (some include the back as well as arms, but still!). So I did all 7 machines yesterday, and my arms are super sore today. It's a good sore, though. It's a healthy ache instead of an illness ache. It felt so good to go back into the gym again. I'm going to try to take my kayak out again soon too (talk about an arm workout!). I just really hope that I can keep this up. I felt almost normal again (how weird is that?? ha ha) when I was exercising yesterday. :)
 
i went to the er but they did not do nothing for me at all they treated me like a drug seeker they just said i have a really bad UTI like a bladder infection and sent me home
 
Iam so sorry your going through all of that. Did they do all the blood work? I had the same thing happen to me two weeks. I was taking a shower and i got really weak and felt like I had to poop. I pooped and felt like I was going to completly pass out. When the ambulance got to my house my blood pressure was extremly low. All of my blood work came back fine and told me all of that was because of my UTI (dont even have symptoms of a UTI). All of that drama for nothin:stinks:

How are you feeling now, I hope a lot better.
 
i am feeling awful in alot of pain and not feeling very well at all they did blood work and a ct and they all came back fine and they did a urine test and i guess thats what the uti showed up on i am getting ready to head to bed and hope i can get some rest but i dont think i will because my stomach pain is so bad
 
I hate bloods coming back all normal (or in my case, except for CRP which on it's own isn't enough) and you feel so, so bad, I just don't understand it myself.

Thanks for the tip about the Ferritin, will look into that. Also Rheumy is out of office until Thursday.
 
mayhavecrohns, I'm sorry you went through that at the ER! When I lived in the states I went to 3 different ER's and 2 different urgent cares when I was at my worst trying to figure out was wrong. I was given pain meds, but they would send me home telling me they couldn't help me. One ER gave we demerol via IV and then told me to leave on my own two feet...if you know how strong that stuff can be, they gave me a ton really fast...I almost screamed because it completely wonked me out. Its best to go to a GI, the ER's in the states don't treat people well at all! :(

I hate normal blood tests too star. :( I hate that my GI relies on blood tests to see if something is wrong enough to do a pill cam. On twitter I have talked to the author of "The Fowl Bowel" and when I told him my GI was relying on blood tests he told me he has had normal blood tests the entire ten years he has had crohns. So frustrating!

Cat, I admire your courage to exercise like that! I used to swim a ton and go to the gym and run as well. It was great stress relief! Since I got this sick a year ago I haven't been able to do it. I want to start up again, because they say it can even help with chronic pain, but every time I try and go my pain is too severe to even try. I'm determined to make it to the gym next week though! Oh, and I love your husband's theories. The whole fiber thing would be great if it was IBS, well typical IBS anyway. My husband doesn't even let us keep popcorn in the house, or anything high fiber for that matter.

The past couple of days have been rough. I was avoiding taking pain meds this week, and then Wednesday I was so busy that I ran myself ragged. I've been in extreme pain and weak since. So the hubby and I are hanging out and watching movies today, which is really nice. :)
 
i am feeling very sore in my shoulders they hurt and also having hip pain to my legs are also sore to i have not done nothing to make them feel like this
 
Go back to ER now. A high pulse rate like that could mean any number of things ...dehydration or infection or both, also pain, to name a few. Suffice it to say it is not normal so get it checked out!

Good luck!
Dusty. xxx
 
i did go and was treated the same way as last night

i did go and was treated the same way as last night all they did was blood work and urine test and said its only a uti:ymad: i looked at them and said NO THERE IS SOMETHING ELSE WRONG I KNOW WHAT MY BODY IS FEELING MY pulse IS STILL REALLY HIGH AND THEY SENT ME HOME DONT KNOW WHAT ELSE TO DO BECAUSE I AM FEDDED UP WITH THE ER'S TREATING THE WAY THEY DO :ymad: sorry for the big letters i am very upset right now at how everytime i go to the er they treat me this way its not right:ymad: they did not give me any iv meds or nothing they throught i was just there for pain meds which not true i was there for iv and got treated that way there is more ers around here but they treat me the same way the er i went to is a BIG JOKE i was sitng there crying my eyes out because the pain and how awful i feel and to be treated like that:ymad: I AM NEVER EVER GOING BACK THERE i guess i will just have to suffer feeling this way because it seems to me the er docs dont give a care how sick and how much pain i am in
 
I'm so sorry you're being treated that way. Gab was treated that way several times by the ER doctors and I was really very upset.
Did they do a CT scan last night ? If not, maybe you should go to another ER and Insist that they do!
Have they at least prescribed antibiotics for the UTI? I know from experience that they can be very painful until they get under control. I'm not saying that is all that is wrong with you, but it may be exasperating your other symptoms?

Try and get some rest (I know , easier said than done right!)
Hang in there hun,
:ghug::ghug:
 
yes they did a CT last night they just ran me through it and i did not have to drink the gross stuff and no iv for it yes i was put on azithromycin for the uti
 
i dont know what else to do because i have tryed everything i can to get the diarrea to stop and the throwing up to stop nothing is working
 
my reg doctor put me on the strongeest med they can for the diarriea and it did not work at all he knows there is something going on and i go to the GI doctor he wants me to see on july 7th
 
i have been throwing up and having the diarrhea everytime i eat or drink anything i had been having blood in my stool to fevers and night sweats to and having awful stomach pain
 
Oh my, I am so sorry to hear this! :(:(:(

Is there another ER you can go to next time? Do you have anyone with you when you go can that help advocate for you? My heart goes to you hun, I wish I could be of more help to you.

Thinking of you, :hug::hug::hug:
Dusty. xxxxxxxx
 
thank you for the comment and no i dont have anyone that can go with me my husband can if he is off when i go but if i go when he is working i have a lady that lives a few doors down from us take me but she just drops me off there and my husband will always pick me up when i need to get a ride home
 
Hope you are feeling a little better today MHC ?
Has the heart rate settled any?
Did you go back to another ER or decide to wait it out?
 
may have chrons: Iam so sorry you are being treated this way. I went to the ER yesterday and demanded they give me a CT scan..It also came back normal. I told the doctor I was sure it was chrons and he told me and to stop self diagnosing. I feel like I am losing my mind. Every test comes back normal. I am so sorry I am ranting but I just want to let you know that you are not alone and that I am here for you if you need to chat. I am sending hugs your way an I truly hope you feel better because this is all too much.

I know how hard everyone has it on here and I truly empathize with everyone on here. My mom is having her friend who is a hypochondriac and who always goes to the hospital to come talk to me as she thinks that this is all in my head. I have pain in pelvic bone that is excuciating- how can I make that up? How can I make any of this up? I am sorry for ranting but I cant go on like this anymore I want to give up : (
 
Mayhavecrohns: Are you feeling better? I can't believe the ER docs attributed all that to a UTI. So sorry about that. I hope you find some answers and relief for your suffering soon.
 
sounds like twin falls idaho,ive been battling what ever it is for 10+ years.they keep telling me i have piles,but just had two units of blood installed last friday.just got over h-pylori.thought i was good.then the swelling,bloating,stabing loss of energy.still havent made it back to work yet.even after blood.ive been bounced from dr to dr since 2001 after i had a bad car wreck.made me feel like i was being accused of getting drugs.im supposed to be taking two different antidepressants,and tramodol.tramodol.one minute they act like they know me,then next time its who are you again.im ready to explode.other than it would be a fizzle right now.im supossed to be swallowing a pill cam,but im afraid since the endoscopy and the colonoscopy and the smallbowl follow through came back good.
 
Hope you feel better soon mayhavecrohns.

Hope the rest of you are doing ok, it's been a bit quiet over the weekend.

I'm still recovering post surgery and getting stronger slowly, can't wait to be back to normal and looking after my kids again. Bless my mum, she has been amazing looking after us. She is an angel on earth.
I have noticed that the lack of eating (from being either asleep or too lethargic) seems to have given my stomach a nice break. I got a bit bloated and sore after dinner this evening, but it's been a little better overall. BMs still erratic, but they did spend a long time cleaning me out in theatre so it must have all been messed about with a lot. I rang the clinic last week who performed the colonoscopy because my GP didn't have the results on Wednesday as he should have, and they said they were posting them to my GP that day, so hopefully I can ring and get them by the end of this week. It's been 3 weeks now so I hope so. Turns out I had 6 biopsies, not 4, and 1 polyp removed. I don't think I was screened for mast cells either but it made interesting reading.
 
philips, I'm sorry you are so frustrated. I'm on antidepressants and tramadol as well for now. Make sure you don't take them at the same time! Dangerous stuff. The way I get doctors to realize I'm not a drug seeker is I show them my prescription when I come in. I only use about 15 tramadol a month, 30 if its a bad month. So when they see I haven't sucked down the pain killers it puts more trust in our doctor/patient relationship. My GI at first wanted me off the tramadol, and now he prescribes me it as needed. Don't give up!
 
Philps, good luck with your Pill Cam. There are several instances of members on here who had every test come back normal, then a Pill Cam led to diagnosis!

There are also several of us who would dearly love the test but for various reasons cannot get it.
 
i hope they give me the test.im at the end of my whits.my job just layed me off again.the np that i under is starting to give me the run around because i starting to come back a little.they want another cbc blood test.i can tell them that its going to be better.because i quite bleeding saturday.and my guts arent as swelled up.but this keeps happening like a ever progressing sequence.i hope for all that medical advances soon so the doctors dont have to look in a book to tell people what the book reads.not every ones biological instructions are the same.im sick of doctors looking at you and not being able to see from a persons life and soukld how it fells and acects them.i used to be bullet proof,and could work till bosses got sick of looking at me.noe i have to plan around a moments notice.EVERY ONE IN THIS FORUM.THANKS for being here and the advice.this is is a demeaning situation.its horrible that so many people are affected by this in various ways.thank you again.i will try to share as much of my information as possible so the info well is always plentifull.:)
 
Phlips, welcome to the club and I'm sorry you had to join us. I hope the pill cam gets you some answers. I had very high hopes for my pill cam but unfortunately it came back normal, so I am still undiagnosed. Keep us posted on if & when you're having your pill cam done!

Dayz, I really feel for you, I've also felt like giving up at times. This illness is endlessly frustrating, exhausting, and depressing - and I think even more so for those of us who are undiagnosed. It's incredibly difficult to be in our position. But you can't give up, no matter how tempting it may be. Keep fighting, you'll get answers someday - we all will! Try to be strong, we're all here for you. Sending lots of hugs and happy healing thoughts your way. Oh, and it's NOT all in your head! Don't let people try to convince you that it is! Your mother sounds pretty unsupportive if she's having a hypochondriac talk to you - I'd have a few choice (four letter) words to say to the both of them if it were me!

Mayhavecrohns, I hope you're doing better. It looks like you haven't posted in a few days, does that mean you've gone back to the hospital? Keep us posted, your symptoms sound worrying. I hope you're doing okay now.

Penguin, glad to hear that you're doing better. I just noticed your signature about your daughter and her stoma! How awful that both of you have gastro illnesses, I'm sorry to learn of this. They say that Crohn's and UC can run in families, has your daughter been diagnosed with any form of IBD?

How's everyone else doing? Star, only 2 more weeks now until your upper endoscopy, right? Allie, how is the tongue ulcer? Meg, haven't heard from you in a bit, hope you're okay? I'm doing okay myself. Had massive gas pains last night, like trapped gas. I finally got things moving again and then farted probably 20 or 30 times in a row - bliss! :D Have had some d yesterday and today but nothing awful, and feel pretty well otherwise. I'm just about to head to the gym to try working out again - wish me luck!
 
i ahve an apointment tomarrow.not to get a pill cam but to chew some doctor butt.the doctor does not want to do the pill cam becuase he still thinks its piles.im going 122 miles in august to see idaho's top gi(his nurse siad something is not right.this is too much for just a hemoroid.get down here).my job layed me off now.the pill cam was already approved by county assistance.here we go again.
 
my palse rate is still high its still running between 122 to 129 i dont know what to do because i dont want to go to a other er and be treated the same way
 
and i am dry heaving because i have been throwing up so much and i am scared to eat or drink anything and i am loseing so much wieght to because the diarrhea is getting worse and the stomach pain to
 
i have not been on because i am feeling so awful with the throwing up everytime i try to eat or drink anything and like i said above comments the stomach pain is getting worse and so is the diarrhea
 
I'm sorry you're feeling so bad still. I can't believe the way you have been treated. How are you doing today? Have you got a GI? If not, get one or change them since they don't seem to be helping you.

Well upper endoscopy coming up on the 12th and I am super nervous, about the procedure and sedation which i've never had before. Happily, my throat ulcer started to heal (as much as I wanted something to show on test, I realized it would likely make the procedure worse), but is back again, ick.

Also had been feeling quite well, but safe to say that has gone. Was hoping to go see my Grandparent's at the weekend but now I don't think I am up to it :( Grandad kindly offered to pay for a taxi each way too but I just don't have the strenght. My life is limited to going to the Hospital and into town for essential errands which I can do once a week if i'm lucky. Even walking down the road and back to local shop/ post box is a rare event now. Just can't do anything else. And Pain Management clinic appointment can't come soon enough!

Hand reared kittens visit was cancelled, quite upset at that since I was so looking forward to it! But am assured there will always be kittens for me to visit.

Complaints service meeting tomorrow!
 
Hello I'm a new member it suprises me to see how many people are going through the same tribulations as myself. I've been suffering from my symptoms for almost 3 years now and still have not been diagnosed with anything. Let me quickly summarize what I'm dealing with.. I live in the North West WA state... I'm currently serving in the Army, I've been stationed here for the last 4 and half years.. I'm 32 years old and I have been a healthly individual all my life until living here in the north west. My symptoms are lower right quadrant / side pain.. It seems to radiate to the back too. I've been to the doctors numerous times.. all my tests have been normal, from ESR's, stool samples, cbc's etc... I've had 3 colonoscopies, 1 upper, SMBFT, MRCP, Hida Scan, x-rays. pill cam, and lastly double ballon endoscopy... I had a CT scan in Dec. 2008 which was normal, and I repeated it again in Jan 2011Thats the first test I've had which was very abnormal.. It showed that I had wall thickening in multiple loops of my small bowel..... This CT result led them to do the double balloon endoscopy which took biopsies of my jejunum which came back normal.. The doctor never really told me if he really went down all the way to my TI.. One of colonoscopy's showed inflammation in the TI.. I really feel like my culprit is in this section of my small bowel.. I remembering having a blood work test done in 2008 in which a indicator was slightly high and predicited me to have crohns but no GI doctors would believe this because everything looked clean to them and the biopsies were always normal. So they would not label me with anything... The pains I feel on my lower right side are sporadatic.. Sometimes I feel them after drinking coffee or eating foods or eating nothing at all.... The intensity are in waves, I find myself always laying down on the floor doing twists to strectch my back out to relieve the pain... I don't have D, I have regular bowel movements once a day, or sometimes twice... I never noticed any blood in my stools. I really don't sleep much 6 hours is most I can sleep at one time no matter how little sleep I get.. Its so weird these symptoms are so frustrating.. Two months ago my primary care doctor noticed that my Vitamin D levels were extremly low so I've been taking 50,000 IU of vitamin D once a week for 3 months... At first I thought this was my cure, because I started to feel better but my symptoms came back... I notice every joint in my body seems to pop all the time when I wake up in the morning or sit and get up or do anything.. I sound like a bowel of rice crispies lol.. Ofcourse the Doctors said popping of joints is normal just the escaping of air when tendons move against bone..
 
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Thanks Cat for making this forum, the undiagnosed club.. just to continue a little bit more about myself.. What makes this even a more frustrating for me, is that I'm in the medical field.. I am registered in x-rays, nuclear medicine and MRI... So I see patients with crohns all the time and it makes me wonder what the do I have.. After reading many of your posts I'm considering asking my doctor to have me try predisone or entcort.. JUST FYI everyone should get their Vitamin D levels checked being in the north west we rarley get sunlight here lol.. and I don't really care for milk.... But long periods with out vitamin D can cause many symptoms that you're feeling. Like fatigue, no energy to do anything, bone pain, back pain... etc... You will be suprise how important a role Vitamin D plays in our body... Theres articles published on how long periods of no vitamin D in labatory mice in urbanized areas led to IBD such as crohns, etc.

Anyways despite the trials and tribulations that I'm currently going through as well as you all.. I know we all yearn to have life back as we once knew it, and how much aware that we are now for our health.. Who knew how much I took for granted on being healthly each day... I'm taking care patients every day that goes through this, never really knowing what it felt like to be on the other side...

I'm not sure how everyone makes it everyday but I know I am a child of God and I give all the glory, honor and praise to my father above.... stay positive and in prayer.. I know its easier said than done, do not worry for no good comes from that, instead memorize scriptures when your feeling down..

Exodus 23:25 Worship the Lord your God and his blessing will be on your food and water. I will take away sickness from among you..

I will keep you all in my prayers and believe you will get better because I know I will :)

Please if you have any questions medically, spritually, or need prayer do not hesitate to ask...

Very Respectfully,
Emanuel

P.S. Psalm 34:8 Taste and see that the lord is good; blessed is the one who takes refuge in him..
 
Cat - That's awesome about going to the gym! I'm going to go as soon as this flare gets a little better. My tongue is healing, well actually it has pretty much healed. It left a nasty scar though! :/

mayhavecrohns - I'm sorry you are still feeling ill. Do you have a doctors appointment scheduled? GP or GI? I don't think going back to the ER will help. I've been through several ER's over the past year and they usually tell me to go to my GI.

ok2look - Welcome to the club. My husband is also in the US Army! We are stationed in Germany at the moment. I'm sorry you are having so much trouble, esp. with being in the medical field yourself!
 
MHC: Can you call and beg your GI to take you sooner? I think you have an appointment coming up, right? Some here have had success getting through to people by crying on the phone. Could be worth a try at least...sounds like you are getting nowhere with the ERs where you live.

OK2L: Interesting about the lack of Vitamin D causing symptoms that you mention. My symptoms have mostly gone away after two courses of Xifaxan, but also I have been taking 2000 iu of D3 daily for probably a year now. My D was low early part of last year apparently, but now it is normal. If only I could get my ferritin up...

Star: Best wishes with your upper endo. Not too much longer now!

Cat: That's great about working out. I've been trying to do Pilates regularly but I have a hard time being disciplined about exercise. I know it helps my lower back, and I do feel better when I do it with any regularity at all. Plus my abdominals are shot after two pregnancies and c-sections so I know it would help there as well. And my husband took a picture a couple of weeks ago, and my legs looked flabbier than I realized they were. Awesome! So now I have some motivation...I think my problem before was that I've always been thin and looked fit, but looking fit and being fit are two different things.

Hope everyone isn't too badly off today, and those of you who are I hope you get some relief soon.
 

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