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Mastocytic Entercolitis

Hello everyone. My story begins a couple years ago when I thought I had gotten food poisoning and lost a quick 25 lbs being sick. I went to a GI doctor who told me I had IBS..and I suffered with no appetite and would gag at the thought of food. I had such bad D, I was miserable. This episode passed and I was healthy until February of this year, when I got sooo very ill. Same symptoms as last time...lost 30 lbs quickly and had no energy to function. I even had to resign my job after 4 years..it was terrible. I ended up seeking the opinion of a second GI doctor, who after a colonoscopy diagnosed me with Mastocytic Colitis. While this has been a long journey of trying to get in better health at least I have a diagnosis. I'm still searching for the energy that has left me..but it's hopefully coming back.

I take antihistamines everyday..class 1 and class 2 histamines, and watch eating foods that are high in histamines as they can trigger the problem as well. My D is gone, but I still struggle with the overall health problems from the disease itself.

Just wanted to stop in and say hi to everyone and wish everyone the best:)


Mendy
 

David

Co-Founder
Location
Naples, Florida
Hi Mendy! Don't take this the wrong way but I'm excited to meet our first patient diagnosed with Mastocytic Colitis! I'm sorry you have it of course, but it's something I've been reading about a lot. Is your doctor Dr. Scot Michael Lewey by chance?

Did the first GI do a colonoscopy? What has been your exact path to diagnosis? And what are the "overall health problems" that you're experiencing?

And what is the list of foods high in histamines?! Can you tell I'm excited? :D

It's great to have you here! I hope you stick around and teach us and let us be there for you as well :)
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Well, unlike our esteemed admin, I've never heard of MC! Are the anti-histamines the only meds you are on? If so, I'm assuming MC is considered an allergy problem? What else have you learned about it? Wow, now I'm getting excited:)

Oh, welcome Mendy!! Are you anywhere near BG?
 
I wonder whether it's a condition that looks like crohn's to a non dyed biopsy?

Is it worth people trying an anti-histamine for a couple of weeks to see whether symptoms improve.

Paul

Crohn's Colitis 2011
Pentasa 4g/day
 
Location
NY
Thanks for posting this.
Paul, I just read that to the eye, a colonoscopy appears normal with MC. The abnormalities show up only on biopsies. I will see if this can be checked when my son has his next colonoscopy! I am a little excited too! Danny's biopsies showed eosinophilic inflammation throughout his digestive tract. But to the eye, it looked mostly normal - maybe some red.
Mendy, are you on regular allergy medication like claritin and singulair? or a special one for the GI? ..... Thanks!
 

Carrie630

The Prettiest Princess
Mark, anything with the word mastocytosis /mastocytotic means it is a mast cell disorder. Mast cells are part of the inflammatory response, and in the case of a disorder some of the mast cells activate when they shouldn't causing an allergic response of varying severity (depends on how many mast cells got activated and de-granulated). There are mast cell stabilizers as well as H1 and H2 histamine blockers which can help regulate your mast cells, but as Mendy kind of mentioned, it's very easy to trigger so you have to be careful about your exposure to anything that could cause a response. This is a vague kind of overview, because there are a lot of mast cell disorders, but with mastocytotic colitis the biggest takeaway is that the mast cells in the colon are activating when they shouldn't causing immune system response when it's not needed causing the colitis.
 
David, no the first doctor didn't do a colonoscopy. My exact path to diagnosis has basically been a long one. My family doctor wouldn't stop until he got an answer though. My doctor is Dr. James Curtiss here in Bowling Green, KY. He now routinely stains all biopsys looking for this disorder. My overall health problems that didn't start until my ME started are burning upper thighs, extreme (can't stress that word enough) fatigue, heart rhythm all over the place, and just all over aches and pains. Flushing, headaches, and malnutrition are also common with ME.

There is a list of of foods high in histamine found at several sites, and I would post the link, but it won't let me because I don't have 10 posts!!!

Dexky, it is a mast cell activation disorder..but there are tons of triggers, and yes I did go through allergy testing..but everything came back negative..lol go figure. I am in Bowling Green:)

Paul, I did have inflammation show up on a CT scan during a ER trip before my colonoscopy. However, my colon looked nice and healthy, but sure enough the biopsy when stained showed the mast cells!

Dannysmom, I take zyrtec which is a class 1 antihistamine, and zantac twice a day which is a class 2 antihistamine.


Carrie, you are spot on with your overview:)

I'm actually going to try and get in to a doctor at Vanderbilt in Nashville to be tested for the Systematic Mastocytosis, due to my broad range of symptoms.

Thanks everyone for the warm welcome. I look forward to sticking around and getting to know each and everyone of you:)!!!!!

Oh and here is a quick question..I uploaded a picture..but not sure how to get it on my profile...LOL!!!!!
 

David

Co-Founder
Location
Naples, Florida
Hooo boy, I have so many questions. There's very little information out there about ME, in part because I think little is known. I just have a feeling it is much more widespread than we realize.

Until you have 10 posts, just remove the http://www off the url. Sorry for the trouble with that, it's to stop spammers.

A few questions in case you happen to know the answers:

1. Regarding malnutrition, do you know what is not being absorbed? And do you know why?

2. Has your vitamin B12 and iron levels been tested? If so, what were they?

3. Where did your CT show inflammation?

4. Out there question: have you had numerous (5+) exposures to poison oak/ivy?

5. Any idea how many people your doctor has diagnosed with ME?

Thank you! Let us know if there's anything we can do for you :)

If you're game, we'd love it if you would add your doctor to our Doctor Directory, especially since he seems to be in the extreme minority of doctors staining for ME.
 

Carrie630

The Prettiest Princess
Mendy, I have a friend with systemic mastocytosis. She went through a lot to get dx'd with it, but she was dx'd for years before they did the 'definitive' test which is a bone marrow biopsy. The reason why she got the biopsy was to check for the c-kit mutation. If I have it correctly, having the c-kit mutation tends to point towards a more aggressive form of mastocytosis. There are excellent doctors specializing in Mastocytosis in Boston.
 
Location
NY
Dannysmom, I take zyrtec which is a class 1 antihistamine, and zantac twice a day which is a class 2 antihistamine.
Thanks again!

WOW ... this is just over the counter stuff! (I even have in the house already!)

Did your fatigue go away, or lessen considerably? Fatigue is my son's biggest problem and is mainly what has kept him from attending school for 2.5 years.
 
David, basically everything I was taking it wasn't being absorbed. Even my vitamin D level was insanely low at 6...I know my sed rate was also elevated. They just told me on the CT scan my colon was inflammed..not sure where exactly sorry. I have been exposed to poison ivy, but have never broke out from it..lol

And, last but not least..he has diagnosed a handful of patients with ME. But he does test for it, which I find encouraging:)


Carrie, thanks for the information. I have read Boston is a great area for learning about mast cell problems!!


Dannysmom...yep over the counter stuff is all I take. My fatigue got better after switching to sublingual B12..I'm still not 100% and look forward to hopefully being there someday..but no such luck yet...

I also am hypothyroid and take levothyroxine for that. I also take vitamin D, B12, and a probiotic daily.

I hope I answered everyones questions:)
 
Hello Mendy,

I was just diagnosed with ME also. It's amazing that I've had many of the same symptoms as you: extreme fatigue, low vitamin D, etc. I've also had low protein levels, extremely bad neuropathy in the legs and feet, and hormone problems.

I look forward to learning more about the disease and finding ways to help myself get better...I have a 2 year old to keep up with!

My doc has put me on Clariton and Pepcid, so I have to go pick those up and see if they help. I'm especially interested in the food link with ME and finding ways to correct my diet.

Thanks for all your input!

Joe
 
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Greetings everyone. I am hoping to find more answers regarding my daughter's recent dx of ME.
She is only 9 and we have been dealing with debilitating stomach pain, vomiting, etc., etc, etc for nearly 9 months.
Last week, she was dx with ME after a triptase stain from her last colonoscopy. Has anyone else heard of this in children, what the prognosis is and what seems to help the most? I am also concerned about the potential (if any) for it to become systemic, or if it is already in the rest of her body, what symptoms to look for.
Any help or feedback would be so greatly appreciated.

-Concerned Mom
 

David

Co-Founder
Location
Naples, Florida
Hi Concerned Mom,

Was the colonoscopy otherwise normal? Have they tested her small intestines to check for any other disease? I am personally not a fan of a diagnosis of ME unless they have checked every inch of the intestines for disease. In addition, what mastocytic enterocolitis basically means is that your daughter has a ton of mast cells in her intestines that are releasing histamine. Potentially a reaction to some sort of antigen, possibly food based. Point being, if I was told I had ME, I would want them to help me figure out WHY rather than give me a ton of antihistamines and send me on my way.

Did they perform any blood tests that were abnormal? How about fecal lactoferrin or [wiki]fecal calprotectin[/wiki]?
 
Hi David,
Endoscopy (both) showed inflammation. Colonoscopy showed a brown/damaged area and thinning of the GI lining (she had not previously been on a laxative therapy). motility study showed delayed gastric emptying, but I read somewhere that gut paralysis is a side efx of ME (I'll try to find the article again to quote/link).Blood tests were normal and she is having a MRE (capsule endoscopy in the next week or so). So far, no food allergies have been discovered. He did test for lactose allergy on her first endoscopy. So far, she is on zofran around the clock, reglan, and zantac. Now, they are adding gastracrom and that's about as far as we have gotten.
 

David

Co-Founder
Location
Naples, Florida
From what I have read of ME, there typically wouldn't be damage/inflammation of the digestive tract. It's more when someone has chronic diarrhea and they can't find any other causes other than elevated mast cells.

I'm glad they're doing a capsule endoscopy. It sounds like they're being thorough which is a great sign.

Please keep us updated as to what they find with that. :)

This must be incredibly trying for you. My heart goes out to your entire family. You may want to connect with other parents in our Parents of Kids with IBD forum for support.
 
Good evening everyone,
It has been a month or so since my last post and we don't seem to be any closer to awareness.
After Haley's capsule endoscopy, the only findings were confirming her gastroparesis (delayed gastric emptying). The camera sat in her stomach for 3 hours and by the time is passed, it was mixed with food, so the doc couldn't see anything. UGH!
We had a pretty good run for about a month. Her pain was significantly lowered and flares were minimal and tolerable even.
This week, however, has been a challenge, both emotionally and physically for Haley. Because of her delayed emptying, she is backed up from one end to the other (C) which is atypical of IBD's but not unheard of.
We are still searching for more...more understanding, more information, etc. Her GI has basically come to a resting point of "lifestyle of managing flares and symptoms". Maybe it's just me having a hard time coming to grips with the fact that my perfect child has to endure this for life. She is having a hard time dealing with her emotions and has so many questions as to 'why' she has to go through this and why she hasn't gotten better yet.
School has started and we are "homeschooling" via the virtual elementary program in our county. From a techie standpoint, the software is pretty cool. From a 9-year-old standpoint, being withdrawn from the classroom environment with her friends stinks!
I continue to search for other parents who are dealing with (ME), but come up empty handed. So, I soldier on, and we continue to embrace each good day to it's fullest potential and hold on to those thoughts on the bad days.
Thanks for all the input and feedback!!
 
Location
NY
Hi. I am sorry your daughter stills feels so bad. My son is not dx w/ ME, but he is basically undiagnosed without any effective treatment ... so I can underatand how hard this can be. My son has been on home instruction (tutors from school come to home) for almost 3.5 years. Socially it is hard but my son did not have enough energy to make it to school. (This year, he is feeling much better than last year and will be trying school again next week. He is 15 now and really could use some friends.)
My son's first pillcam did the same thing as your daughter's. Stayed in stomach nearly the whole battery life. He had another pillcam placed endoscopically. (The insurance did not cover both :( )
Good luck! Feel free to post in the Parents Forum too. It has wonderful support.
 
For those of you who have been diagnosed with ME, I have a question. Since allergy plays such a critical role in ME, do you notice worsening GI symptoms when you are exposed to seasonal or environmental allergens?

The reason I ask is because my GI symptoms become much more severe when pollen counts are high, when I am exposed to dust or excessive amounts of dog hair, and when it rains (because mold levels in the air go up).

It makes me wonder if it is actually ME that I am suffering with, instead of Crohn's. Thanks so much for your input.

Brian
 
For those of you who have been diagnosed with ME, I have a question. Since allergy plays such a critical role in ME, do you notice worsening GI symptoms when you are exposed to seasonal or environmental allergens?

The reason I ask is because my GI symptoms become much more severe when pollen counts are high, when I am exposed to dust or excessive amounts of dog hair, and when it rains (because mold levels in the air go up).

It makes me wonder if it is actually ME that I am suffering with, instead of Crohn's. Thanks so much for your input.

Brian
I live in a rural humid farming area where seasonal and environmental allergens are always bad. So I really don't notice ME being worse because I'm constantly surrounded by things I'm allergic to. One odd thing was that I was stung by fire ants a few days ago and at the time I was on zyrtec, allegra, ranitidine, gastrocrom, and famotidine. For the first time, I didn't get the fluid filled welts like I usually do when I get into fire ants! My ME seems to get really bad when I am stressed or dared to eat an acidic food.
 
After 3 months of being extremly sick,, losing 20lbs,, was Dx with ME,,,can anyone share their symptoms with me,,,? ive had extreme burning, toe joint pain,, feels like something is leakin into my skin,, extreme fatigue, the longer the day goes,, the worse i feel, only relief is layin down, no sleep, blood pressure goin up,, heart racin,,,was wonderin does anyone share these symptoms,,,?
 
I have atopic dermatitis on the soles of my feet and they occasionally burn and itch , joint pain, intolerance to heat with excessive sweating. I gained weight when I was on chlolestryamine and am hoping to lose it now that I am on gastrocrom. The chlolestryamine let me eat anything but after several years it made me very sick - I honestly think I became allergic to it. I am slowly identifying my trigger foods. I also discovered yesterday that the smell of the insectcide malathion causes me to react as if I ate a plateful of trigger foods.
Bittsybug, what meds are you on?
 
@ David, daughter's most recent tests included fecal studies (calprotectin and something else). Calprotectin came back elevated and will most likely lead to another endoscopy. Currrently in a "flare" for about 5 weeks. Do you know the general reliability of these tests? Also, I am searching for a link between gastroparesis and constipation. Any thoughts?
Thanks!
HarveyFamily
 

David

Co-Founder
Location
Naples, Florida
They're pretty reliable. They don't definitively tell you what's wrong of course, but I'd trust that the number was indeed elevated.

Gastroparesis can cause vitamin B12 deficiency which can lead to constipation.
 
After 3 months of being extremly sick,, losing 20lbs,, was Dx with ME,,,can anyone share their symptoms with me,,,? ive had extreme burning, toe joint pain,, feels like something is leakin into my skin,, extreme fatigue, the longer the day goes,, the worse i feel, only relief is layin down, no sleep, blood pressure goin up,, heart racin,,,was wonderin does anyone share these symptoms,,,?
Hey bittysbug. I was dx with ME 3 years ago. Unfort I do not have the same symptoms of you. When I have an 'attack' as I call it, my intestines do swell it seems, putting pressure on my back causing lower back pain. I get extreme D, or constipation, abdominal pain, sweaty palms, get EXTREMELY hot need lots of water. I nearly pass out each time from the pain and vomiting. I also suffer the typical symptoms of the disease, pelvic pain, bladder problems and what not.

I am on Allegra, Zantac 150mg, and for emergencies Hyomax.
 
Hey bittysbug. I was dx with ME 3 years ago. Unfort I do not have the same symptoms of you. When I have an 'attack' as I call it, my intestines do swell it seems, putting pressure on my back causing lower back pain. I get extreme D, or constipation, abdominal pain, sweaty palms, get EXTREMELY hot need lots of water. I nearly pass out each time from the pain and vomiting. I also suffer the typical symptoms of the disease, pelvic pain, bladder problems and what not.

I am on Allegra, Zantac 150mg, and for emergencies Hyomax.
I had major D, at the start of the onset,,confusion, blurred eyesight, an dry eyes,,feelin of goin to faint,,,an the weirdest feelin inside,,unexplainable,,now im havin the pressure of my intestines being swollen late in the day after i eat,on my right side,,,with right sided Pain,,,,an still havin fever across my back,,,an now major C,, an at first water was all i wanted ,,,and im still takin Zyrtec or Claratin, an Zantac,,,an other Vitamins, in the mornings i feel almost normal,,but mid evenin ,,OMG,,downhill,,,thanks for replyin,,,
 
Hi, I just found out about my mastocytic enterocolitis diagnosis about an hour ago. My life has been a living hell for the last ten years dealing with so many symptoms and doctor visits. Being a Desert Storm veteran I was checking out every angle related to Gulf War Illness and was told by a VA doctor that my symptoms indicated that was what it was.
The big question I have for others here that have this condition is how long does it take to feel better after taking medication? My wife is on the way now to pick up my prescription, Zyrtec and something else I can't remember.
 
well i was DX in Aug, an im better than what i was,,, but some days are worse than others,,,the swelling in my side puttin pressure on my back is unbearable somtimes,toward the end of the day, Im exhausted,,no energy,,,Steriods helped , but dont wanna be on them all the time,,What all has your symptoms been> ?
 
Tony, did the doctor take a sample of your colon lining to stain and count the mast cells? From what I've been told, that's the only way to determine for sure if it is mastocytic enterocolitis. I take cromolyn sodium lots of different antihistamines and acid reducers and still my mornings are spent running to the bathroom. If I have to travel for work in the morning, I dont eat anything. For me, things seem to calm down by early to midafternoon and the evening is fine. I used to be on a prescription drug that binds the stomach bile. It worked great for 3 years and then it started making me sick so I had to quit it. It made my life normal for the first few years, you might see if it works for you, I think the generic name for it is cholestryamine.
 
Tony, did the doctor take a sample of your colon lining to stain and count the mast cells? From what I've been told, that's the only way to determine for sure if it is mastocytic enterocolitis. I take cromolyn sodium lots of different antihistamines and acid reducers and still my mornings are spent running to the bathroom. If I have to travel for work in the morning, I dont eat anything. For me, things seem to calm down by early to midafternoon and the evening is fine. I used to be on a prescription drug that binds the stomach bile. It worked great for 3 years and then it started making me sick so I had to quit it. It made my life normal for the first few years, you might see if it works for you, I think the generic name for it is cholestryamine.
Yes he did a biopsy during a colonoscopy. After the results from the biopsy came in and I was notified of the results he ordered an additional blood test, Serum Tryptase. I'm waiting on the results of that test. Right now he prescribed Zantac and Zyrtec.
 
well i was DX in Aug, an im better than what i was,,, but some days are worse than others,,,the swelling in my side puttin pressure on my back is unbearable somtimes,toward the end of the day, Im exhausted,,no energy,,,Steriods helped , but dont wanna be on them all the time,,What all has your symptoms been> ?
My symptoms were so many that I had to make a laminated card to bring to my doctor visits because of the brain fog I could not remember them all. Other symptoms were: full body pain, fibromyalgia like symptoms, chronic fatigue, depression, mild skin rashes, memory problems, scent and food intolerances, etc.
Basically I've had every symptom related to Gulf War Illness at one time or another except for the menstrual stuff.
 
My symptoms were so many that I had to make a laminated card to bring to my doctor visits because of the brain fog I could not remember them all. Other symptoms were: full body pain, fibromyalgia like symptoms, chronic fatigue, depression, mild skin rashes, memory problems, scent and food intolerances, etc.
Basically I've had every symptom related to Gulf War Illness at one time or another except for the menstrual stuff.
That sounds like me,, i carried a list around with me,,,i had bad brain fog, joint pain in my big toes, very sensitive to sounds, irritability, still havin swelling in my right side, and trouble with C, from one extreme to the other, by the days end im totally exhausted, with upper back/shoulder pain, an the list goes on,,,,Thanks
 
Hi everyone! I am so glad I found this forum. I was diagnosed with ME nearly 2 years ago. I was so very sick and went through basically every test possible. My GI specialist suggested a colonoscopy the very first visit, along with keeping a food diary. He (Dr. Emslie at Graves Gilbert Clinic in Bowling Green, KY) was one of the few who knew to test for this disease. While I'm grateful for a diagnosis, I was left with little guidance other than the 2 types of histamine blockers daily. I struggle constantly with knowing what to eat. Dairy seems to trigger flare ups more often than not, but also high fiber foods are sometimes intolerable. I don't eat red meat or pork by personal choice. This leaves very little for options, especially during a flare up (such as the last 5 days). I often get depressed or discouraged because I want to enjoy things. Does anyone have any suggestions about how to ease symptoms or what kind of "comfort food" will help relieve some of the pain?
 
Hi everyone. I have discovered a weird yet wonderfully positive side effect of the pain medication Tramadol. I broke my ankle and fractured my back 6 weeks ago and after the first week really didn't need or take my pain meds. When they had to change my cast, I took a tramadol for the 3 hour round trip and realized when I got home that I didn't experience my normal attack of 3-4 morning diahreas. I have experimented with this several times now and this morning, took a Tramadol and none of my ME meds. I then track a big glass or tomato juice - which is normally a trigger. I had a normal bm just after taking the tramadol shortly after I got up this morning and have had no stomach cramping or races to the bathroom.

Why would tramadol have this effect on my mast cells in my gut? Or in my brain? Its amazing to be able to function in the morning instead of camping out within 10 feet of the toilet.
 

Judith

Crohnsforum Science Advisor
Rollingrfarm,
I am so happy to hear you found a medication that is working for you!:highfive:

Mast cells will recognize an [wiki]Antigen[/wiki] in the Gastrointestinal Tract and set off sort of an "Alarm of Defense". This recognized Antigen may be Appropriate (as in the case of an infectious agent) or Inappropriate (such as in allergic reaction to foods, etc.). The Mast cells respond to the Antigen by releasing Histamine (the "Alarm"). In the GI Tract Histamine can cause powerful diarrhea (and/or vomiting) to remove the Antigen from the GI Tract quickly.

Unlike some other Narcotics, Tramadol does not cause Histamine Release which could serve to exacerbate diarrhea.

Tramadol is also marketed under the trade name Ultram, Ultram ER (extended release form) and Ultracet (tramadol and acetaminophen).

Tramadol inhibits the uptake of Serotonin (also known as, 5-hydroxytryptamine; 5-HT). This causes these chemicals to remain in the "active site" of the nerve longer before "uptake" and removal from the nerve 's "active site". Some people take Selective Serotonin Reuptake Inhibitors (SSRI) to help multiple mood type disorders but the Gastrointestinal Tract contains Serotonin and Serotonin Receptors as well. The GI tract is very sensitive to fluctuations in Serotonin. Serotonin's role in the GI Tract varies depending on the disease. This is in part due to the presence of multtple different types of Serotonin Receptors and a role of Serotonin on Immune System function. Researchers are attempting to find good drug targets to stimulate or block individual Serotonin Receptor subtypes to get a better handle on the effect of Serotonin in Gastrointestinal Disease.

Tramadol also acts to inhibit uptake of Norepinephrine. Norepinephrine acts on the nervous system and its release is reduced in Colitis (Inflammation of the Colon) and has been suggested to have a role in Inflammation-Induced GI Dysfunction. Tramadol may play a part in your beneficial side effects through Norepinephrine as well.

Tramadol is also a mu opioid receptor agonist. Most opioid type medications (including Tramadol) will cause Constipation. In fact, many people taking opiate medications for pain that do not have IBD will also take a stool softener (ex. Colace) to minimize these side effects.

This "side effect" sounds like it is of great benefit to you though. :)

I wonder if it would be worthwhile mentioning your "side effects" with Tramadol to your Gastroenterologist. He may want to see if you benefit from specific drugs that target Serotonin and Norepinephrine individually so you can obtain a sustained response. One problem with opiate medications is your body (often) adjusts pretty quickly and your benefits may be reduced if you continue on the Tramadol in the long term. Maybe not though.......

Please keep us updated. And thank you for sharing your exciting news!
 
Thank you for the excellent explanation of how tramadol may be/is impacting my system. Sadly, my gastroenterologist retired and his replacement knows less about mastocytic enterocolitis than I do. My family doctor has taken a great interest in ME attempting to learn all he can about it. I have researched gastroenterologists in Arkansas that are knowledgeable about ME and none that I can find are specialists in this disease so I am pretty much on my own as far as seeking treatment.k Also, I am on the antidepressant Effexor/Venlafaxine. I wish I knew more about pharmacy to know which drugs that target Serotonin and Norepinephrine separately. My ME had been under control for several years thanks to Chloestryamine but it (for some reason) started makikng me feel extremely nauseous as did Wellchol so I had to quit taking it. I am on OTC meds for allergy and acid production and also taking oral cromolyn. None of this has helped as much as the Tramadol. Like you, I am concerned that my body may become tolerant to the Tramadol and it may become less effective and I am also concerned about its depressive (I asssume they mean mental depression?) side effects.
I may need to take Tramadol only when I know that I will spend the morning in the field (I am a wildlife biologist) or in meetings when getting to a toilet will be difficult.

Again, thank you for all your valuable information, I will keep you posted on how my condition progresses in response to the Tramadol

I wonder if any other mastocytic entercolitis suffers are willing to ask their docs about Tramadol?
 

Judith

Crohnsforum Science Advisor
I am so sorry your GI retired. It sounds like your GP is really making an effort though. I hope it works out well.

I think the tramadol depressive side effects you are talking about refer to Central Nervous System system depression and Respiratory Depression..... similar to depressant effects seen in Alcohol and Xanax. These drugs "depress" or reduce your breathing rate, etc. Usually it is not dangerous unless you take more than one "depressant" type medication in combination (for example if you were drinking Alcohol with Morphine). This might reduce your breathing to rates that may be life threatening.

Please ensure if you do decide to start taking another medication that selectively works on the Serotonin or Norepinephrine systems that you do not continue to take the tramadol because this combination can be potentially life threatening. :)

If you do not continuously take the tramadol (every day) and only take it once in a while (every couple of weeks or so) you are far less likely to build up a tolerance to it.

I am so happy you have decided to share your "good side effects" of tramadol with the forum. I am sure your response to the medication can be helpful to many others. Thank you!!

What type of wildlife do you work with? I worked in a lab that would record frogs and bats out in the wild. It was great fun! Mosquitoes = NOT fun.
 
Thank you for the warning about taking another "depressant" med. I doubt that I will have time or the proper doctor for exploring other medications. Once my ankle and back decide to quit hurting (6 1/2 weeks since my accident) I will only use the tramadol when I have a work obligation which limits toilet accessibility.

Your work with bat and frog recordings sound fascinating. In the spring, I do bird surveys where most of my bird ID is done by their song and calls. I am the ornithologist for the state wildlife agency and I am in charge of designing and implementing (and seeking funding for) programs and projects that keep common birds common and reversing declines in species who's populations are in trouble. I'm out in the field quite a bit in the spring and early summer and get hit with tons of paperwork the rest of the year. It seems that most of my survey locations are mosquito hotspots, I am constantly fighting skeeters and ticks.
 

Judith

Crohnsforum Science Advisor
Thank you for the warning about taking another "depressant" med. I doubt that I will have time or the proper doctor for exploring other medications. Once my ankle and back decide to quit hurting (6 1/2 weeks since my accident) I will only use the tramadol when I have a work obligation which limits toilet accessibility.

Your work with bat and frog recordings sound fascinating. In the spring, I do bird surveys where most of my bird ID is done by their song and calls. I am the ornithologist for the state wildlife agency and I am in charge of designing and implementing (and seeking funding for) programs and projects that keep common birds common and reversing declines in species who's populations are in trouble. I'm out in the field quite a bit in the spring and early summer and get hit with tons of paperwork the rest of the year. It seems that most of my survey locations are mosquito hotspots, I am constantly fighting skeeters and ticks.
I am curious.... have you ever taken Vicoden, Percocet or a similar medication and had these positive side effects?

Your research sounds very interesting. Do you study how environmental toxins affect breeding survival / egg shell strength etc? I am constantly amazed by the inability of the human population to react to massive losses in certain species of wildlife (particularly "warning" populations like frogs and birds).

I recall one spot we would frequent for fieldwork in Massachusetts.... the mosquitoes were so bad! My legs were beginning to itch. I looked down and my jeans were completely covered by mosquitoes - they were biting my legs through my Levi's. They were thick jeans sprayed with deet!
 
No, I am allergic to Vicoden, Percocet, and related medications, as is my mother and brother. These meds make us extremely nauseous and sick to our stomachs at any dose.

Unfortunately, as the state level, funds are not available for research on environmental toxins and egg shell strength and reproduction. I am primarily involved in habitat aquisition, habitat restoration and improvement in order to provide the necessary components for reproduction and survival. I am involved in monitoring how declining species react to the restored habitat and researching what microhabitat components may be missing and need to be added to create optimon breeding, brood survivall and over winter survivability. Sadly, funds for conservation work are getting harder and harder to find.

As an update on my condition, I took my last pain pill over a week ago and have not had any of my normal ME symptoms. If anything, I feel as if my colon and lower instestine "activity" is slowed. I went nuts at a mexican restaurant 3 days ago and felt like I had a bowling ball in my guts for the next two days. I was so miserable. I was at the point that I was praying for an ME relapse just to clear my system. I am also noticing that I am abnormally thirsty, and craving of all things organge juice. I wish there was some way to run tests to figure out what was going on especially incomparison to my over 5 years of ME.

P.S what kind of dog is in your picture? He's gorgeous!
 
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