Severe abdominal pain!

[Wooddy]

Severe unexplained abdominal pain, HELP!

Hello, I am 42 years old and have had UC for 15 years. Recently, I have been experiencing severe abdominal of pain of unknown origin that required hospitalization. The doctors first thought it was my gall bladder, but after I went through every test in the book they concluded that my gall bladder was fine. They checked for a number of other conditions but came up with nothing. In fact, in the past I was scheduled for gall bladder surgery on more than one occasion but each time the surgeon said that my gall bladder was fine and cancelled the procedure. Then the last time the doctors accused me of making up the pain just so that I could receive IV narcotics.

5 years ago I thought I was having a severe UC flare up. I was on the toilet and I passed out from the extreme pain. I made my way to the ER and they hooked me up to an EKG machine and found that I my heart had gone into
an arrhythmia. My hear beat was over 230 bpm. The GI doctor said the ulcerative colitis was not that flared at the time and did not warrant such pain.

I am very frustrated, I am on Lilda and azathioprine to control my UC. Toprol XL for arrhythmia and blood pressure. I am certain now that this abdominal pain isn't being caused by my UC, it is completely different. I have been hospitalized about a 1/2 dozen times in the last 6 or 7 years for severe unexplained abdominal pain. However, I lost 60lbs in the past few months on weight watchers and I have been in the hospital 3 times this year already for abdominal pain that the doctors say is not there.

One thing I found curious is that on occasion I have noticed purple stains/splotches on the toilet that seemed to coincide with my recent hospitalizations. At first I thought it was due to something I ate so I watched my diet very carefully to avoid eating beets, blackberries, rhubarb, etc.. Despite of all this the purple splotches became even more predominant over the next week or two. I read some earlier posts on this forum about these purple stains being attributed to mesalamine, but if that were the case I would assume that they would appear all the time. They disappeared after a couple of weeks, and I forgot about them. Interestingly enough several weeks later my wife and I were painting a bathroom which I don't regularly use. She left to clean off the paint brushes and asked me to take the blinds off the window to see of I could make them straighter. I had to use the toilet and decided to pee before I took the blinds off the window.

After I removed the blinds the sun light filled the bathroom. I realized that I needed to replace the hardware before I put the blinds back up. When I returned a few hours later to put the blinds I noticed that the toilet had purple splotches all over the rim of the bowl. I hadn't seen the purple splotches in weeks and no they were back. The sunlight must have reacted with the residual urine that must have splashed on the rim of the bowl to change it to purple. Now I was perplexed again, but this time I decided to do an experiment, my wife thought I was nuts. I peed in a glass jar and left it out in the sun to see what would happen. Sure enough after it was out in the sun it darkened in color to the point where it unrecognizable as urine.


I called a couple of the mesalamine drug manufacturers and they didn't have any data to indicate that the drug caused the urine to darken on standing in light.

Has anyone else experienced unexplained purple stains on the toilet bowl and/or severe abdominal pain not directly related to UC/Crohn's?

To me this sounds more like a some kind of porphyria could be complicating my UC?

I would appreciate any insight that anyone can offer.

 

[Rebecca85]

When I read about the purple appearing in the sunlight, acute intermittent porphyria came to mind immediately (thank you Scrubs!) (unfortunately, I have no idea what porphyria even means)

I would go back to your doctors with your discovery, if they don't take you seriously then find a doctor that does!

 

[Lisa]

I second Rebecca's thought - do a quick search for purple urine sunlight and that pops right up.....and one symptom is abdominal pain!!!!!

 

[abdomenpain]

Porphyria?

Wooddy, I don't even know how I found your post. I do not have Crohn's. Have been googling symptoms of acute intermitten porphyria for days. For fifteen years, I have been plagued with severe abdominal "attacks" which suddenly disappear along with other gastrointestinal problems. Have had numerous diagnostic tests. One dr accused me of just "liking to have tests done." This time around the last 3 attacks are more severe. Again, CT scan was negative. I took note of your report of purple stains on the toilet. During the recent two attacks, I noted that my pantyliners were stained purple! I googled "purple urine and up came AIP." I told my internist and requested urine/blood test specifically for porphyrins. I will see him for results this Thursday. I wondered if the purple stains could be from my eating cherries in the can which I often eat so I'm going to purchase some this pm and see if they make purple stains. In the meantime, I'm in severe pain. Don't know if I'll make it til Thursday. May have to go to ER sooner. However, what is the sense in that? My scans, etc, have always come up negative and I read many ERs don't know about testing for AIP. Your thoughts would be very much appreciated and I am sorry for your medical conditions too. I empathize. Carol

 

[Wooddy]

Carol,

I am sorry to hear about your experience and I understand what you have been through. It is frustrating to hear about the experience that you have had deal with, particularly the doctors accusing you of liking to have tests done. Some of them need to be reminded that they are humans just like you and me, not gods that know everything. I just updated the wiki porphyria entry if you want to check it out. I am constantly adding content so keep looking for updates if you want more information.

Regarding your test, it is very important that the proper protocol be followed from beginning to end when collecting and submitting the sample from everyone involved including the lab technicians who probably are not familiar with the test. Whether it's a 24 hour or random urine, the sample must be collected during acute attack before you receive any treatment. It must be collected in a container that is protected from light, preferably wrapped in aluminum foil and refrigerated immediately (or the entire time during collection if it's a 24 hour sample). The sample may remain stable for up to one week if is kept in the dark and refrigerated, this is important because many facilities can not do the assay on the premises and must have it sent out to a reference lab. If the specimen is mishandled before it reaches the reference lab, the test will result in a false negative and the doctors might rule out porphyria or tell you again that you like tests -- or even worse they might tell accuse you of being crazy. There is a disproportionate number of people (3x more than in the general population) with undiagnosed porphyria in mental institutions compared to the general populations because doctors are not familiar with how to recognize it. When you have an acute attack attack it's easy to get hysterical sometimes, especially when you are dealing with the extreme pain and the doctors tell you that it's not there or that it's all in your head. So try to keep this in mind.

One thing that you can do on your own early on during the onset of an attack is to take in copious amounts of carbohydrates, this can lessen the severity of the attack is started early enough. However, the effectiveness of carbohydrate loading decreases the longer you wait and during a severe attack it may not be enough. Keep in mind that if you intend to test for porphyria during an attack the results may be compromised if the sample is collected after treatment with carbohydrates has started. Also, if you wait too long to go to the hospital, like I have in the past, then even multiple doses of the strongest IV pain medication may not be able to relieve the pain.

As for the cherries, I would avoid eating anything red until you are able to confirm a diagnosis (at least if you intend to test for porphyria using a urine sample) particularly, beets or rhubarb, and I would suggest keeping a very tight log of everything that you are eating for the next few months. This way you can be absolutely certain food was not the cause. You may also want to note where you are in your menstrual cycle during these attacks. Typically most women experience the worst attacks in the middle of their menstrual cycle (after ovulation during the beginning of the luteal phase before menses) triggered by the rise in progesterone.

It usually takes more than one factor to trigger an attack but if enough of the right factors are in place, you could be set up for the perfect storm. Vigorous exercise, dieting, smoking, alcohol, certain drugs (prescription or OTC), paint fumes, hormonal changes, illness and stress are all factors that can trigger an attack. So definitely do not try to enter into an exercise routing and start dieting, while painting your house or go out drinking with your friends, have a few cigarettes to relieve stress from work particularly when you are in the middle of your menstrual cycle or you will be asking for trouble.

There is one lab that I am familiar with that can conduct genetic testing specifically for porphyria it costs just under $2000 but some (not all) insurance companies will pay for it. It is at Mt Sinai Hospital in New York City. This test can be done at any time, whether you are having symptoms or not. It is the benchmark for diagnosing porphyria and can definitively determine the exact type of porphyria to the specific mutation. The lab is in New York City but you can mail them a blood sample. It takes about test takes about 10 to 14 days after they receive a sample of your DNA. Let me know if you want more information.

Good luck, I hope you find some of this information helpful

 

[abdomenpain]

Woody, thank you SO much for the informative reply. I will definitely go on the website. I also started eating lots of carbs 2 days ago and it really does seem to help. I ended up in the ER about 1-1/2 weeks ago with bad left lower quadrant abdomen pain, to the left of navel, and back pain. CT scan showed "Abnormal, several loops of small bowel moderately thickened." They also did comprehensive metabolic bloodwork and a few things were slightly high, RDW, WBC, alkaline phosphatase and a couple other things. I return to my internist Monday to see whether my ins. co. would pay for porphyria testing (I left a urine sample last week) during acute pain attack. Sorry I didn't reply earlier, but I was in bed last weekend for 2 days, would sleep for a few hours, putter around house, sleep for a few hours, putter, etc. Got depressed because my friends think I'm loopy and only need to take OTC Aciphex and everything will clear up. So, I withdrew from everybody for a weekend. But with the carb diet, I have made contact with friends again. If I don't have AIP or anything that serious, then I will find a gastro or dietician who specializes in creating a diet for IBS. If this is only IBS, it's a severe case! You can't explain the abdomen pain (burning!!)and fatigue to people, only if you have it yourself. Again, thanks so much!

 

[Trysha]

Hi Wooddy' How are you now.
Did you ever get diagnosed and treated for porphyria.
When I read your first post this condition sprang to mind.
Any properly qualified lab scientist would know how to analyse a specimen for this diagnosis.
Hope you are feeling better.
Hugs and best wishes
Trysha

 

[abdomenpain]

Wooddy, just to update you, I have had no more purrple urine stains. However, have been on Web for hours over last 2 weeks reading about AIP. I am going back over the last 17 years and documenting my "strange" manifestations. I have had many, many of the manfiestations of AIP (17 yrs ago 2 psychoses, I still take Zyprexa and no more episodes, abdomen pain/recent back pain. Severe insomnia (I awake at 2 4, 5 o'clock in the am and wander around my house, even tho I take Ambien, severe restlessness when my stomach is hurting, etc.). My internist sent a urine sample off and it came back negative. However, I don't trust that it was done right. First the lab technician never sent my urine in a week and a half before when I was "acute." I believe she didn't know how to order the test. The nurse/PA got onto her for this error and sent another sample to a Quest lab in Chantilly VA (negative). However, they only tested for phorphobilinogens (and not for ALA or porphyrins). When I read about AIP people having nocturnal seizures, I remembered my jaws being sore in the morning, purple sores in my cheeks, which disappeared after a couple of days. Also, last time I was in the ER, I was trying to doze off when suddenly I heard a woman scream. I opened my eyes and the doctor and nurse were in the room. I knew who they were and stared at them, but I was unable to speak. THe nurse said, "Are you ok?" The doctor said, "We didn't mean to startle you." I was evidently the one screaming. I was embarrassed and said, "I must have had a nightmare, but I can't remember what it was." Then I read about petit mal (absence) seizures. Could that have been what I experiencd? Anyway, I am currently looking for a hematologist and after I write up my notes I will show those to him (hope he dsn't say I'm an obsessed hypochondriac and why are you alarming yourself by searching the internet for proof of an illness--I will say you know what, Doc, I AM ill (the fatigue has been hanging on for weeks now) doctors are not listening to me and I by necessity must help myself.
Wanted to mention that I am an artist (solvents are one of the precipitating factor). Ihad the psychosis 17 years ago while attending an art class, later dropped out and past 2-3 years am again in a painting class and my symptoms started again, only worse? And how are you?

 

[Wooddy]

Trysha,


Thanks for the well wishes. Luckily, so far so good, I am feeling fine. I think a have a good enough handle on the pathophysiology behind the disorder and so far I have been able to avoid situations that would precipitate an attack.

However, I do not have an official diagnosis yet and have to wait for another attack before I make another attempt.

The last time that I had a 24 hour urine sample sent out to the lab was 6 months ago when I first realized the possibility of porphyria at the time I had been asymptomatic for at least 2 months.

The lab didn't handle the specimen correctly. I remember that when I dropped off the sample I brought it to the lab in a an insulated cooler bag and had the specimen container wrapped in aluminum foil. I even went to the trouble of peeing in the container in the dark, so as far as I was concerned that sample had not seen the light of day while I was handling it. I also had it stored in a little refrigerator (I removed the light bulb) while I was collecting the sample. When I arrived at the lab, I handed it to the technician and had asked her to put it in the refrigerator right away. She was very short with me and quipped that I needn't tell her how to do her job. She removed most of the foil and told me that it wasn't necessary -- she went on to say that it was covering information on the label that she needed to enter in on her computer. I realized that this was no longer in my hands so I didn't see the point in arguing with her. As I was leaving, I noticed that she let the container sit on top of a cart next to the window sill in direct sunlight. It didn't look like she was in a hurry to do anything with it.

After waiting for 2 weeks, I called the lab to find out if the results were in yet but they told me that they hadn't even started the test yet. Apparently, the sample was sent to two different facilities before it reached their facility in Virginia that was equipped to conduct the testing. After another week, not surprisingly the results came back completely negative not even a trace of PBG or ALA detected.

By this time I had been asymptomatic for almost 3 months. I called another facility to explain the situation over the phone and they insisted that they would follow the proper protocol and I shouldn't have any problems if I brought in another sample to them. They still shipped the specimen directly to the same reference lab in Virginia. This time the test detected ALA levels well above normal but PBG levels were in the normal range.

I have to wait to be symptomatic again before I can test, but the next time this happens I will collect more than one sample and send it out myself to another reference lab that I found in Texas. They specialize in detecting porphyria.

Wooddy

 

[Wooddy]

abdomenpain

I am also an artist, but I am not so good with paints. My favorite media are charcoal, dry pastel, pencil and clay. It's a good thing I suck with paints because I don't think I could handle breathing in the organic solvents.

As for the purple stains, I start to notice them if I lose weight or exercise a lot. They only appear rarely, however the last time I had an acute attack my pee was unmistakeably red for over a week and red/purple/brown stains were imminent and profound every time I used the bathroom. When the attack finally hit, I thought I was going to die. The doctors thought I was crazy because they couldn't find anything wrong with me.

You have to be your own advocate. Many doctors dismiss your symptoms as unimportant if they can't find any physical evidence that something is wrong. Obviously, you know that there is something wrong so it's up to you to pursue it in an objective fashion. In the beginning I even thought that there was nothing wrong with me because none of the test that were ordered ever revealed anything. However, after experiencing the severity of subsequent attacks, I told myself to remember how severe they actually were. I had to actually tell myself that they were real, because despite the intense pain the medical community did not think I was having a "real" problem. They sent me for psych consults and told me it was all in my head.

I had no idea that the red urine was related because I didn't always notice it during an attack. Later on when I realized what was actually going on it it was further evidence that proved my problem was a medical issue. It's easier for a doctor to tell you that your issue is a psychiatric problem when they cant figure it instead of going to the trouble to find a medical reason behind your problem.


Remember to eat copious amounts of carbs if you think you are going to experience an attack.

Hang in there and keep us posted.

Wooddy

 

[Trysha]

Trysha,

Hi Woody
I am sorry you were treated so badly by the laboratory where you submitted your specimen.
It is absolutely appalling, inconceivable and totally unacceptable that a lab would not know proper procedure.
All the more so because it requires knowledge and expertise in handling these specimens.
Very tragic in fact after all the care you put into proper collection of the specimen and with so much at stake you need to have an accurate analysis and diagnosis.
It is possible to report this lack of expertise to the Centre for Disease Control (CDC) and I think they might be interested in following it up.
In fact it would be a good idea if the CDC did a check on all labs claiming expertise in handling specimens such as yours.
There is a quality assurance programme for laboratories but I don't know if it would be applicable in your State.
It is a Federal Government Programme so quite possibly could apply to all States.
If you feel so inclined you can contact them at:
Laboratory Standards for Disease Control and Prevention
1600 Clifton Road
Atlanta, Ga 30333
Telephone: 800-CDC-Info
800-232-4636
Email: [email protected]
Porphyria has been a problem within some of the royal families of Europe., just a piece of trivia that might be of interest to you.
Hopefully you will receive proper diagnosis and treatment in the future.
Feel better soon
Trysha

 

[Wooddy]

Trysha,

Thanks for caring. I suppose the reason that the lab techs didn't know the proper procedure is because this condition is very rare and they might see this test ordered literally once in their entire career. That being said they should have demonstrated a bit more care after I went to all that trouble. However, it's not uncommon for this type of thing to happen due to unfamiliarity with this test. Some people have to have this test done several times before they actually get diagnosed.

The other problem with this test even if the specimen is handled appropriately it often yields a false negative unless the person that is being tested is actually having an acute attack. the reason is that most labs use a colorimetric method to assay the sample. This method lacks the sensitivity to find anything but the most extreme cases reliably. The best way to test is to find a specialty lab that uses HPLC instead of a colorimetric method. HPLC is much more reliable and it's also better to send a sample to a lab that has experience with this condition.

It's too bad the techs at the lab didn't care as much as you do. Thanks again for your support.


Wooddy

 

[Trysha]

Hi Wooddy
There is absolutely no excuse for any laboratory failing to know correct procedures.
People's lives may depend on them following proper procedures.
Every laboratory should have a manual with test description and requirements.
There should be regular inspections of these labs by a governing body such as CDC.
It is good that you are so well versed in the requirements for the laboratory diagnosis
of porphyria., many patients do not have your expertise.
It is somewhat surprising in this modern age of technology that HPLC is not routinely
used., I think in some countries this is the case.
Best wishes for your future health
Trysha

 

[abdomenpain]

Trysha, you have probably read my threads, too. I am "abdomen pain."
Wooddy has a wealth of information on AIP (AND, it is the same information I have been finding on internet searches!) The urinalysis is practically useless if it is not done correctly and/or sent to a lab who has a specialist on board who knows about AIP. Sources say AIP is a very rare disorder, but I believe that there are many out there who never get diagnosed, especially those with psych histories (and psychosis is one of the manifestations of this disease!). I called a hospital today bec I found out that they will refer you to the kind of specialist you need. I wanted a hematologist who knew something about AIP. The girl told me basically,oh, you have to have a referral from a doctor to go to a hematologist (after I hung up, I imagined that you probably had to have a referral from a doctor AND have a diagnosis in order to get in to see a hematologist). This whole disease is like a Catch 22. Are you on this website bec you have Crohn's?

 

[Trysha]

Hello abdomenpain,
Sorry to hear you have problems and hope you will be able to find the right solutions.
I think you should be able to see a hematologist by referral from your family physician., who of course would make the initial diagnosis.
When a patient is seen in emergency they can call for a consult by the hematologist at this time.
Specialists also refer to other appropriate specialists as they see fit.
Some specialists may also see a patient without a referral and this is ok as long as they continue to follow the patient.
Usually a patient is followed by the family doctor in tandem with any specialist.
The medical world can be so complex.
I came to this website for support when I was first diagnosed with crohn's.,and have stayed around to help, learn and enjoy the company of others with similar problems..
It can be quite a hard time coping at first with the initial diagnosis., and treatments., so of course I have a GI specialist.
Additionally I have a blood dyscrasia and so receive monitoring and care from an oncology hematologist.
The family physician referred me for both conditions.
Wooddy has a strong grasp of the facts and is a mine of information.
It is distressing to find labs that have a lack of knowledge of any disease process and the procurement and handling of crucial specimens for accurate diagnosis.
The governing bodies such as CDC really need to have a programme in place which deals with quality assurance and laboratory proficiency testing..
I cannot understand why your family physician fails to refer you to a hematologist who is skilled in the diagnosis of porphyria.
Perhaps he/she would discuss the articles that you have researched and refer you from there.
Feel better soon
Hugs and best wishes
Trysha

 

[abdomenpain]

Thank you, Trysha. As a matter of fact, I am in the process of "typing up" in some coherent fashion what I have been learning and how my manifestations coordinate with a diagnosis of porphyria. I have only been on this learning voyage for a few weeks (after suffering in silence for 15+ years bec of being humiliated by doctors) so my thoughts have been quite scattered until I started having these "ah-ha!" moments. Once I have ordered my thoughts on paper, and plugged in some approximate dates, I will take them to my internist (whom I've been seeing regularly the past 6 mos and who is baffled by my complaints and told me maybe I'm just depressed). But once I have a timeline and present him with my conclusions, hopefully, he can refer me. If not, my gyno asked to review some of my bloodwork, last ER visit, and he even told me to follow through on the porphyria thing just in case. He treated me with respect, not like a hypochondriac.
I read some of your threads after I sent you my email and will read some more this weekend. I can see you were searching for a long time until you finally found doctors who could help you. Thanks again. Peace. Carol

 

[abdomenpain]

Trysha, how are you doing first of all.
Second, have you heard from Wooddy? He sent me a friend request and I friended him, but have not heard from him since. Worried that he might be very ill. I left my outline with my internist explaining why I believed my symptoms indicated AIP. Unfortunately, dr. is on vacation til next week. As always, waiting, waiting...waiting to see if he agrees or thinks I'm crazy. In the meantime, new symptoms are headaches and hands swollen when I wake up in the am. Hope you are faring better. Carol

 

[Wooddy]

Carol,

If you believe that you are having skin symptoms that are related to an acute porphyria then either HCP or VP is more likely the cause than AIP.

Confirming this diagnosis or any of the other possible diagnosis in the differential list can be very frustrating and elusive even for the most skilled physicians. Sometimes it just takes dumb luck but most other cases it invariably requires a lot of patience and an open mind.

Keep a daily log of your diet, stress level, symptoms, and any other factors so that you can reference in the future, it will come in handy, trust me.

Hope all is well, the past few weeks here have been uneventful and that's how I like it!

-Wooddy

 

[Trysha]

Trysha, how are you doing first of all.
Second, have you heard from Wooddy? He sent me a friend request and I friended him, but have not heard from him since. Worried that he might be very ill. I left my outline with my internist explaining why I believed my symptoms indicated AIP. Unfortunately, dr. is on vacation til next week. As always, waiting, waiting...waiting to see if he agrees or thinks I'm crazy. In the meantime, new symptoms are headaches and hands swollen when I wake up in the am. Hope you are faring better. Carol

Hi Carol
I see from this page that Wooddy was active and maybe still is.
I am sorry to hear your help is so slow in coming and that perhaps by now you are feeling a bit better.
Unfortunately I had a violent break-in in my home, things damaged and stolen.
The front door was irreparably damaged and today has been replaced.
I had been delayed( 3Hrs)at the Cancer Clinic being checked for the blood dyscrasia and returned to find the intrusion.
Since that time I have been staying with a friend.,still very traumatized.
The crohn,s is quite active again.and feel quite ill, I have just started on the Remicade, and a third dose is due March 14th.
I do hope you have improved.
Take care
Hugs
Trysha

 

[abdomenpain]

Trysha, yes, Wooddy responded and I will send him a short note tonight or tomorrow. Am so sorry about your break-in--that is very traumatizing. Is the Remicade the first time you have been on this med? Or have you been on it before? I have heard of it. Unfortunately, I have nothing good to report. Went to ER yesterday and was told I have a UTI AGAIN! I scheduled an appt. with a urologist for 2/28/13 as I can't believe I have it again after it cleared up about 2 weeks ago. I'll write more soon. Going to nap.

 

[abdomenpain]

From Carol:
I am not a hypochondriac
I do not have Munchausen's Syndrome

I am SICK and need a referral to a hematologist
to be tested for:

Acute Intermittent Porphyria (AIP)


Manifestations:

Psychosis - had two 17 years ago
Severe abdominal pain – intermittent over 17 years (diffuse to start and
then localized to the LL quadrant, peri-umbilical, pain 3-7 on scale of 1-10)
Purple urine - recent
Seizures – possibility
Severe fatigue - have
Severe restlessness recent
Irritability/mental confusion -recent
Insomnia have recent (despite taking Ambien)
HBP - mine has been bouncing from 140 to – 168 lately
Tachycardia - Only when I used a asthma relief inhaler
Constipation/or diarrhea diarrhea for 17 years
Gastrointestinal problems have for 17 years
Photosensitivity (usually in the cutaneous Porphyrias, but sometimes in AIP – possibility)
Neuropathy - recently have awakened with swollen hands 3 xs
Of note: (Symptoms have been known to worsen over time – I'm worse)

Triggers:

Stress
Solvents
Anesthesia
Alcohol
Dieting
Drugs (illicit, anesthesia, sulfa drugs and others)
Hormonal Changes
Infections


MOL 1995 – I think I was around48 yrs old
SEVERE STRESS: (stalked by ex-boyfriend for a month)
SOLVENTS - Took oil painting class for 2 yrs
Used cheap turpentines from hardware store
Had PSYCHOSIS (classic Paranoid Reaction) – 6 mos. to 1 yr later - PSYCHOSIS (2d one and was hospitalized in Charter Hospital 2 weeks)
Am still on anti-psychotic medication (Current: Zyprexa – also Zoloft, Xanax and Ambien)
I have been going since then to Dr. Bonnie Saks' office. I saw Dr. Saks for about a year and a half and then moved on to just seeing psychologists in her office when needed and 15-minute meds check with the nurse at her office.

No abdominal pain that I can remember except hard cramps during menses.

I did not continue with art class.

During this time or a short time after this, I went into pre-Menopause and was put on HORMONE REPLACEMENT THEREAPY until 2 years ago.

MOL 1990 - SEVERE STRESS – over rommate problem

MOL 1990 - SUDDEN SEVERE GASTROINTESTIMAL PROBLEMS: diarrhea, cramping, bloating, heartburn, flatulence, burping one bubble at a time, over 200 times a day. It was like there was a rubber band around my trachea. The gas would “bubble up” and exert pressure in my throat, so I was forced to burp the tiny bubble out. Then, maybe 30 seconds later, another, ad infinitum. Drs. didn't believe it could be that severe, but it WAS.

I believe it was Dr. Corral (internist) who sent me for a colonoscopy. Dr. Stauffer, who did the colonoscopy, said I possibly had IBS. So I just assumed I'd have to “live with it.”

Went to gastro Dr. Weintraub
On Prilosec for a month.
Had endoscopy, and other associated gasto tests. All were normal.
Dr. told me to take Imodium daily. I did not return to him.

MOL 2007, I ordered a cocktail at a Christmas lunch one day. Immediately, I felt extremely nauseated and shaky. I have not drunk much since that day, the feeling was so terrible. I may have a beer 3 times a year, but sometimes it starts making me weak and nauseated so I don't finish the beer. I rarely drink ALCOHOL.

I took all kinds of OTC meds: Imodium, Gas-X, Peptol Bismol, Tums, Prilosec, Milk of Magnesia, tried a few herbal things and Metamucil. Did not help at all. Dr. Corral thought it may be lactose intolerence. Tried Lactaid for a month before every meal. (Dr. Corral suggested it again in 2012 and I tried the Lactaid again for 2 weeks and it did not work). Besides, I eat ice cream and food with milk in them with no problems. The only thing that bothers me is whole milk on cereal and I get stomach bloating, regular burping.

Symptoms subsided on their own a couple years later except for intermittent diarrhea, stomach bloating, lots of flatulence for the last 17 years. I take Imodium to control somewhat.

Also a few UTIs and sinus infections over the years.

After mowing the lawn MOL 1995-2000, felt nauseated. Came inside house, drank some water, and severe urge to urinate (severe tenesmus) (inability to urinate but with a strong urge to is sometimes noted, I later, read, in PIA). NOTHING would come out. All of a sudden was gripped by horrible PAIN (10 – one of the worst pains I have ever had). Called sister to take me to Memorial Hosp ER. As we pulled up, the pain subsided within about 2 minutes. Went in anyway. Dr. said I may have been dehydrated from mowing grass and said it was probably a bladder spasm. I still had mild pain (can't remember if it was on the Right or on the Left of my bladder). Dr. put me on antibios and antispasmotic. Followed up w/ gyno. No problems after. I NEVER mowed lawn myself again – the pain was that intense.

Half-heartedly, oil painted at home – just a few paintings in span of 5 or so years.
MOL 2008 - WEAKNESS and hay fever symptoms shortly after cleaning a very dusty ceiling fan – WEAKNESS ATTACK came on gradually during the day til about 2:00 every afternoon and, at work, I could barely sit up after 11:00 or after. I often woke up weak and missed a lot of work.

Went to Dr. Corral to explain the WEAKNESS. I was at a loss of words to try to explain it, because it was so strange. Dr. Corral asked if I could just be depressed. But recently I am better able to verbalize it as:

I will start gradually feeling weak, then weaker and weaker. I will lay down on the couch and try to watch TV, but my muscles (whole body) feel “abuzz” or “just barely imperceptively vibrating.” But then, laying there watching TV is too strenuous. So I go into the bedroom to read. As usual, reading is somehow “too strenuous” too. Then I lay on my stomach perfectly still and try not to move even one little finger. One of two things will happen: I will feel severely RESTLESS and will go through this cycle of restless activity, laying on the couch, reading in bed, laying on my stomach perfectly still, and several times through the whole process. However, this past Sunday after a trip to Publix, while laying on my stomach and not moving I was able to fall asleep for 2 hours and when I awakened I was fine (once in awhile I have this good fortune). I then went to a Superbowl party (no alcohol for me) and laughed and had fun with some friends (now that's not depression), although I can understand how the laying on the couch, bed, could appear like depression.

Then, would have sudden ABDOMEN PAIN, at first diffuse over entire abdominal area, burning, burning, which would progress to LL quadrant and then to a specific spot several inches to Left of umbilical. The subsequent “attacks” would always be like this.

MOL 2008 - Saw gastro Dr. Hanan for first time re SEVERE ABDOMEN PAIN (5-6 off and on) (lasting for 4 weeks) in LL quadrant periumbilical. He put me on antiobiotics and said it could be diverticulis. He also gave me Reglan because I was having the little bubbles in my throat again. Reglan did not help the bubbles.

MOL 2008 - Thought I had another sinus infection so went to an ENT. After a couple of appts (and putting me on antibios) and me having same complaints of extreme WEAKNESS and hay fever, feeling headachey, he sent me for a CT scan: normal.

I was desperate for help because I was so WEAK and headachey so I tried an allergist thinking it might be that.
(Put on Singulair, Claritin, Nasonex, and allergy shots twice a week)
Was given a shot in butt of prednisone and 5-day script: prednisone – immediate resolution of symptoms while on prednisone.
As soon as prednisone was stopped 5 days later – return of symptoms.
After 4 weeks more of SEVERE WEAKNESS and hay fever symptoms, I begged allergist for one more round of pred – shot in butt then 5-day script. When pred stopped, symptoms completely resolved.
I told Dr. Corral.

Then, a few years of just the usual IBS diarrhea, bloating, flatulence. Some abdomen burning, but not bad.

MOL 2009 - Began line dancing.

Oil painting again in a class with other painters 2010 – present
Use Mona Lisa odorless mineral spirits (which are supposed to be safest)

Since MOL 2009, I have been experiencing what I call “low blood sugar attacks” while shopping in department stores. I get very shaky and feel I will faint. I go up to the front counter and buy anything to eat, preferably a candy bar. I then stabilize. Or, I will quickly exit the store and drive quickly to a restaurant and eat. I then stablize.

2012 began belly dancing. Still do.

Felt WEAK. Went to MLK Walk-In and was put on antibios for a UTI INFECTION). Had severe ABDOMINAL PAIN (7) a week later (first diffuse, burning, then like someone was pointing a burning laser to a specific spot a few inches to left of umbilical). Symptoms lessened, but I was still extremely WEAK, and had some Ab pain left. I was so afraid of the level 7 pain returning that I went to Memorial Hospital ER since the weakness/pain was not gone. They gave me some intravenous pain meds and a urinalysis. Found nothing.

Missed bellydance class.

After DIETING and losing 10-12 lbs.
Same round of ABDOMINAL PAIN and WEAKNESS. Missed a couple of belly dance classes. Spontaneous remission.

MOL 2012, I had severe STRESS building because of a situation at work.

Had a classic fight-or-flight reaction (PSYCHIATRIC) and flew into a rage at work toward a woman whom I believe is severely narcissistic and who was giving me such grief at work on a daily basis. I screamed, “I'm sick of your head games!”etc., etc., etc. I even lunged at her, but didn't hit her though I wanted to. This was totally out of character for me. I am a people-pleaser and avoid confrontation at any cost. I was in a fog, uncontrollable, severe anger, SEVERE weakness, mental confusion for a week. Sliced my left arm with a razor blade to “get the anger out.” Followed up with some psychological counseling. Psych said it was a classdic fight-or-flight reaction and I probably had high levels of ADRENELINE, CORTISOL, TESTOSTERONE coursing through my body at this time.

Situation resolved MOL a couple weeks later since my desk was moved at work by Vicki Stolberg to a quiet area next to a girl who is very quiet and works very hard just like me. (I'm surprised they didn't fire me, but as you know, I've been at Stolberg/Townsend 17 years and am an excellent legal assistant and they admitted that the girl was “very hard to deal with, but good at her job.”

Throughout 2012, after shopping and going to Publix – severe WEAKNESS, headachey and feeling as though I were going to faint in store; had to lean on grocery cart. Every other time I go shopping and to Publix, the same symptoms. Have to go home and lay down. I thought it was hay fever (until just recently I read about PHOTOSENSITIVITY and its relationship to the Porphyrias). I then realized that Publix has hundreds of flourescent lights.

MOL 10/12 – had cataract surgery so, of course, had ANASTHESIA (don't know what kind).

MOL 11/12 - ABDOMINAL PAIN (5)
Dr. Rinde in Dr. Corral's office sent me for a cat scan. Machine was broken so symptoms had partially subsided by the time I had the cat scan (drinking the white stuff).
Result: Negative. During this attack, I felt nauseated and had one bout of projectile vomiting and one bout of regular vomiting. ABDOMINAL PAIN subsided for 2 days spontaneously, during which time I had increased energy. I oil painted 4 hrs on Saturday and 4 hrs on Sunday. ABDOMEN PAIN returned.

Blood pressure has been bouncing from 140-168 (Dr. Corral's, Walgreen's, St. Joseph's, gyno Dr. Newton's).

Purple urine on pantiliner – on Web for cause, didn't eat beets, rhubarb, only other cause listed was ACUTE INTERMITTENT PORPHYRIA. Read and read and read. My head was exploding! These were my symptoms!

Went to see Dr. Rinde at Dr. Corral's office. Was put on Amox-Clav by Dr. Rinde, then after culture, put on Nitrofurantoin, then Bactrim. Yelled at Walgreen's pharmacy tech because when I got home from drugstore, Bactrim was not in my bag and I had to drive back to Walgreen's sick (IRRITABILITY. I never do things like that). Told Dr. Rinde about Porphyria and requested a urine test for same.


ER – St. Joseph's
BACK PAIN (5) and ABDOMINAL PAIN (5)
Was sent home with scripts for Cipro, Metronidazole.
While I was waiting in the bed for the doctor to return, I heard a woman screaming. My eyes popped open and the doctor and nurse were standing at the end of my bed. It was as though they had floated through the door like ghosts. I stared at them. I recognized them as the doctor and nurse, but I couldn't seem to speak. The nurse said, “Are you okay?” And the doctor said, “We didn't mean to startle you.” I suddenly realized I had been the one screaming. Confused, I told them that I must have fallen asleep and had a nightmare (this could have been a PETIT MAL or alternately called an ABSENCE SEIZURE as my internet research later led me to).
CT Scan: Abnormal. Several loops of small bowel thickened. Focal enteritis not excluded.
(some theory suggests that constricted blood vessels in bowel cause the intense pain. Was my finding consistent with a constricted blood vessel?)

Mouth: Over the months of 12/12 and 1/13, I have awakened with purple sores inside my mouth that heal after 2 days (twice), jaws sore several mornings. I also cracked my denture in half (sometime during the night). I also awoke one morning feeling like my teeth/dentures were chattering and for some reason wondered if I had had a SEIZURE (I had not yet read that nocturnal or petit mal seizures have been reported for people with AIP). I awakened on two occasions yelling.

Was extremely WEAK on Christmas day, but the weakness came and went. Would wake up at 2, 3, 5 o'clock in the mornings for a week and putter around house, go back to bed. This is highly unusual for me since I take Ambien for sleep and usually sleep like a log.

Began high-carb diet as I read this sometimes relieves AIP symptoms to see if it relieved symptoms. Felt a little better.

Dr. Corral's office called me in for f/u after St. Joe's ER visit. PA Cobb said to go ahead and take the Cipro, Metronidazole prescribed by St. Joe's since I still had blood in my urine. She also gave me a script for a muscle relaxer, Cyclobenzaprine.

Weekend prior to MLK Day: SEVERE, SEVERE WEAKNESS and MENTAL CONFUSION, NERVE-LIKE PAIN in Right buttock for couple hours, ABDOMEN PAIN. Stayed in bed for 2 days sleeping 3 hours, getting up for 1-2 hours, back to sleep 3 hours, etc. Thinking it may be the muscle relaxer, discontinued it after 3 days on.

Found out at Dr. Corral's office that lab tech didn't send in urine specimen to test for AIP.
Saw PA Phillipa Cobb at Dr. Corral's. Gave another urine sample and lab tech sent in
Result: negative, .07 m/l (??) but at time urine was sent in, pain was no longer acute (and my research says you should only have the urine test done when you are acute. My stomach pain and weakness had subsided somewhat).
Also, porphorobilinogen test did not test for ALA and porphyrins.

Purple urine in pantiliner.
Month of January, missed 3 belly dance classes because of ABDOMEN PAIN and WEAKNESS.

1/28/13 – went to bellydance class, felt good afterwards.

1/31/13 – extreme “blanking out” at work. We all forget why we entered a room, but this was more like short-term memory loss because it goes on and on and on and on.

Pain subsided to 2 or 3, felt better, but fatigued after activities.

2/2/13 – Extreme blanking out at home. WEAKNESS. Went to coffee shop and helped art teacher hang our art classes' paintings. Ate Greek yogurt parfait and dessert. Felt better.

Came home and the WEAKNESS returned. 2/3/13-2/6/13, the WEAKNESS is almost always there. Seldom have remissions.

2/3/13 – awoke with left hand swollen, not really asleep. I shook it and that did nothing so I slapped it front and back and it went away.

Between 1/31/13 or 2/3/13 or so – to gyno as recommended by PA Cobb at Dr. Corral's. Uterus and ovaries normal. Will return for annual pelvic in 1 month. Dr. William Newton.

2/5/13 – awoke with right hand swollen. It did not feel like it was asleep at all. There was resistance when I tried to use it and I couldn't make a fist. It took about an hour for it to feel normal again.

Noticed that the palms of my hands were red and splotchy (liver activity? Alk Phos was high at St. Joseph's).

2/6/13 – awoke with right hand swollen.

2/6/13 – went for 3-month f/u after cataract surgery to Dr. Levitt. Told him I have been very ill and would he please let me know if there was anything “unusual” about my eyesight. He said no, just my usual dry eye and that I should use warm compresses and wash my lids for my usual blepharitis. Used Refresh drops.

2/7/13, awoke WEAK and headachey. Called in sick to work. Went to Publix, My headachey feeling turned into an actual headache. Rested and ate a hamburger. Felt a little better.

Miscellaneous Health Problems over the years.

Plantar fasciitis Left foot. Dr. Sharma gave me a cortisone injection and it was cleared up. A few years ago, I had a nerve-like pain in my Left ankle. Another cortisone injection by Dr. Sharma and it cleared up. Dr. said the x-ray had shown just a tiny little white spot that may have been a tiny fracture like you get when falling off heels, not enough even to bother with a cast or soft splint.

A few sinus infections.

A few UTIs.

2/7-2/10: New symptom: Headaches. Previously I had been just “headachey” but it's worsened.

5 yrs ago, Right upper arm very painful while driving, would lock up, etc. Went to FL Ortho and got cortisone shot and had physical therapy for 6 weeks. Pain subsided. Feel some pain in the R upper arm from time to time.

Hip joints “grind and burn” when I walk several hundred feet (but I can line dance and belly dance w/ no problems at all - strange).

Sharp Left knee joint pain sometimes when walking.

AIP Is Genetic

My daughter had horrible menstrual pain for many years. Her legs would go numb. She was told it was endometriosis. AIP commonly strikes young women during menses. She has also been diagnosed bi-polar but won't take the medication because she doesn't believe she is bi-polar. She will take antidepressants and antianxiety meds.

My sister's hands tremor (for years) (tremor is known to occur with AIP). She just lives with it and never found a cause. She also has nystagmus. She had a few months where she could not swallow medication. She felt that her throat had swelled. Had all tests – normal. She also has bad shoulder pain – all tests negative. My sister was never a complainer about any of these symptoms.

OF NOTE: One of the dozens of hypotheses about Vincent van Gogh was that he had AIP. And, no, I cannot stop painting. I have had my work in 3 shows over last 3 years and I just got my first commission to paint the CD cover of a blues singer/harmonica player. Brought my paintings of musicians to a blues jam recently, and my head swelled from all the compliments. Next time I paint at home, I will wear a mask and open the door.


******************************************************************************
I believe these symptoms warrant a blood test for AIP. Am asking that you write me a referral to a hematologist, preferably one who understands something about AIP, because I cannot get an appointment without a referral. :ack:

 

[Trysha]

Trysha, how are you doing first of all.
Second, have you heard from Wooddy? He sent me a friend request and I friended him, but have not heard from him since. Worried that he might be very ill. I left my outline with my internist explaining why I believed my symptoms indicated AIP. Unfortunately, dr. is on vacation til next week. As always, waiting, waiting...waiting to see if he agrees or thinks I'm crazy. In the meantime, new symptoms are headaches and hands swollen when I wake up in the am. Hope you are faring better. Carol

Hi Carol,
I do hope you are getting the qualified help you need
Today I returned to my house determined to start living there again until I sell sometime when I have a place in a secure apartment building for which I have made application and on a waiting list.
Hugs
Trysha

 

[abdomenpain]

Thanks, Trysha
I have not heard from my internist. I am embarrassed to call his office--surely he thinks I'm a nut case. I do, however, have an appointment tomorrow with my psychologist to speak to her about all of this. Have not seen her for several months so she knows none of this. I will fill her in and see what she has to say. Also, have an appointment with a urologist I have not seen for 12 years as I have another UTI.
Been having really bad headaches, but also have been having some good times, too. Saw for the first time ever a "gaucho dancer." He is Argentinian but lives in my city. I have never seen anything like it and I have seen a lot of dancers. I hope to see him again. I will find out where he'll be performing.
Hope my urologist will discover what is causing the intractible UTIs (AIP?). Good luck with your house and apt. Let me know how it goes.

 

[Trysha]

Hi
Get in touch with your internist and ask what his plans are for you.
He may have been away, sick or otherwise occupied.
Don't just leave it. Ask directly if he thinks you are a nut case---YOU ARE NOT!!!
Discuss it with your psychologist and tell her how you feel.
Hope you will be better treated.
The new door has been installed and the doorbell repaired.
I am trying to stay in my house again but not yet overnight.
Have to make an effort to get over it all.
feel better soon
Hugs
Trysha

 

[Wooddy]

Carol,

It looks like you have been through some tough times dealing with an array of symptoms. I don’t think that you are a nut case, or a hypochondriac. The symptoms you have described sound as real as they come. I am sure it’s even more difficult to deal with them without having a proper diagnosis. Porphyria imitates many disorders and is very difficult to diagnose. There could also be more than one condition causing the problems that you have been dealing with which would make a proper diagnosis even more elusive. So try to keep an open mind to other possibilities as well. I know you want answers, who wouldn’t?

The differential diagnosis for the set of symptoms that you have described is extremely large. This can be overwhelming not only for you but for your doctors. They might not even know where to start their work up. Until recently, there was no blood test available for Porphyria that a physician could order. However, now there is a reliable genetic test available from Mount Sinai Genetic Testing Laboratory in New York that can determine with 97% certainty if you have Porphyria or not. All you need to do is ship them a sample of blood. You can find the pertinent information through link I posted below.

http://www.porphyriafoundation.com/...sting-for-porphyria/dna-testing-for-porphyria

I hope this helps and that you feel better. Keep us posted on your progress.

Wooddy

 

[MEgal]

Yea...this sounds suspiciously like Pophyria, i would get that checked (blood tets and urine test). There are cases of porphyria where you see GI symptoms similar to crohn's sx, so def worth it to get it checked out :hug::dance:

Hello, I am 42 years old and have had UC for 15 years. Recently, I have been experiencing severe abdominal of pain of unknown origin that required hospitalization. The doctors first thought it was my gall bladder, but after I went through every test in the book they concluded that my gall bladder was fine. They checked for a number of other conditions but came up with nothing. In fact, in the past I was scheduled for gall bladder surgery on more than one occasion but each time the surgeon said that my gall bladder was fine and cancelled the procedure. Then the last time the doctors accused me of making up the pain just so that I could receive IV narcotics.

5 years ago I thought I was having a severe UC flare up. I was on the toilet and I passed out from the extreme pain. I made my way to the ER and they hooked me up to an EKG machine and found that I my heart had gone into
an arrhythmia. My hear beat was over 230 bpm. The GI doctor said the ulcerative colitis was not that flared at the time and did not warrant such pain.

I am very frustrated, I am on Lilda and azathioprine to control my UC. Toprol XL for arrhythmia and blood pressure. I am certain now that this abdominal pain isn't being caused by my UC, it is completely different. I have been hospitalized about a 1/2 dozen times in the last 6 or 7 years for severe unexplained abdominal pain. However, I lost 60lbs in the past few months on weight watchers and I have been in the hospital 3 times this year already for abdominal pain that the doctors say is not there.

One thing I found curious is that on occasion I have noticed purple stains/splotches on the toilet that seemed to coincide with my recent hospitalizations. At first I thought it was due to something I ate so I watched my diet very carefully to avoid eating beets, blackberries, rhubarb, etc.. Despite of all this the purple splotches became even more predominant over the next week or two. I read some earlier posts on this forum about these purple stains being attributed to mesalamine, but if that were the case I would assume that they would appear all the time. They disappeared after a couple of weeks, and I forgot about them. Interestingly enough several weeks later my wife and I were painting a bathroom which I don't regularly use. She left to clean off the paint brushes and asked me to take the blinds off the window to see of I could make them straighter. I had to use the toilet and decided to pee before I took the blinds off the window.

After I removed the blinds the sun light filled the bathroom. I realized that I needed to replace the hardware before I put the blinds back up. When I returned a few hours later to put the blinds I noticed that the toilet had purple splotches all over the rim of the bowl. I hadn't seen the purple splotches in weeks and no they were back. The sunlight must have reacted with the residual urine that must have splashed on the rim of the bowl to change it to purple. Now I was perplexed again, but this time I decided to do an experiment, my wife thought I was nuts. I peed in a glass jar and left it out in the sun to see what would happen. Sure enough after it was out in the sun it darkened in color to the point where it unrecognizable as urine.


I called a couple of the mesalamine drug manufacturers and they didn't have any data to indicate that the drug caused the urine to darken on standing in light.

Has anyone else experienced unexplained purple stains on the toilet bowl and/or severe abdominal pain not directly related to UC/Crohn's?

To me this sounds more like a some kind of porphyria could be complicating my UC?

I would appreciate any insight that anyone can offer.