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11-18-2012, 09:17 PM   #31
TonyM
 
Join Date: Nov 2012
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.
11-18-2012, 09:24 PM   #32
TonyM
 
Join Date: Nov 2012
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.
11-19-2012, 08:12 AM   #33
bittsybug
 
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Join Date: Sep 2012
Location: Lena, Mississippi
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
11-21-2012, 06:02 PM   #34
Wildcat2012
 
Join Date: Nov 2012
Location: Franklin, Kentucky
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?
11-22-2012, 12:23 PM   #35
David
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Join Date: Feb 2006
Location: Naples, Florida
Wildcat, if I had ME I think I would utilizesome form of enteral/elemental nutrition (without dairy since that causes you issues) and see if that removed my symptoms. From there, utilize an elimination diet of all organic, whole foods to SLOWLY add things back.
11-28-2012, 11:16 AM   #36
rollingrfarm
 
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Join Date: Jun 2012
Location: Dewitt, Arkansas
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.
11-28-2012, 11:30 AM   #37
David
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Join Date: Feb 2006
Location: Naples, Florida
That's fascinating. I'll page our science advisor Judith to see if she is aware of any mechanisms that may in some way affect mast cells.
11-29-2012, 04:09 AM   #38
Judith
 
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Join Date: Mar 2012
Location: California
Rollingrfarm,
I am so happy to hear you found a medication that is working for you!

Mast cells will recognize an Antigen 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!
11-29-2012, 08:34 AM   #39
rollingrfarm
 
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Join Date: Jun 2012
Location: Dewitt, Arkansas
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?
12-01-2012, 12:20 AM   #40
Judith
 
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Join Date: Mar 2012
Location: California
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.
12-01-2012, 10:37 AM   #41
rollingrfarm
 
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Join Date: Jun 2012
Location: Dewitt, Arkansas
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.
12-08-2012, 01:45 AM   #42
Judith
 
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Join Date: Mar 2012
Location: California
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!
12-08-2012, 11:47 AM   #43
rollingrfarm
 
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Join Date: Jun 2012
Location: Dewitt, Arkansas
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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