Chronic Intestinal Pseudo-Obstruction Discussion

• By td63076
• Posted March 27, 2009 at 7:08 pm
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We would like to give Mary-Angela a personal thank you for taking the time and speaking with me personally, via phone regarding Jeremiah's motility disorder. I must admit, I felt totally lost before I browsed over this support group. She was so understanding and compassionate about everything. A relationship was immediately developed between she, Jeremiah, and I. She did not hesitate to send me helpful information out concerning his disorder and the support site. Although this disorder is a day to day battle, I have the comfort of knowing that we have people in our corner that doesn't see us as being strange, only very SPECIAL..... Thanks AGMD, This will Never be forgotten

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• By Loie
• Posted March 29, 2009 at 2:29 am
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Mary-Angela,

I am really looking forward to participating in the AGMD Chat Room Session on CIPO. The last two were very uplifting. It really helps to have someone to talk to (chat with) who truly understands the feelings that goes along with these diseases/disorders.

Since I have CIPO I am asking my husband to participate because I think it will be beneficial for him also. Some times it is harder on our loved ones or care givers than it is on us. I am sure we will both come away from this Chat Room Session with more knowledge and reassurance.

Thank you Mary-Angela. You also share the daily trials we all do but you continue to be there for all of us.

Love and Prayers,
Loie

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• By Sunfish
• Posted March 29, 2009 at 4:12 am
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do i understand correctly that one cannot participate in the chat without paying? not specifically for the chat but for the membership that is required in order to be a part of the chat? how disappointing:-( i would otherwise love to join in & was initially excited to see the announcement as it's rather unusual to have a chat focused specifically on CIPO (rather than on GP &/or motility disorders in general).

as someone who has been & in involved with several non-profits i certainly understand the need for funds/ revenue in order to stay afloat but it's a shame that a chat has to be "paid members only". i only hope & pray that this forum/ message board never ends up similarly restrictive. while i did see that individual exceptions may be maid in extenuating circumstances to allow someone to become a member at a lesser (or no) fee i'm posting to voice my thoughts on the matter for people in general rather than simply myself; while requiring a paid membership in order to receive tangible items by mail (newsletters, etc.) makes sense b/c of the cost incurred it's hard to understand why an online chat couldn't be equally inclusive/ accessible financially. (i do realize that some chat utilities require some membership &/or usage fee for the host organization but in most cases it is minimal & no different whether 4 or 14 people participate.)

i am certainly not trying to be a trouble maker. but i did feel it important to raise the issue & voice my thoughts as i tend to be someone more willing to do so than others (and am quite sure that i'm not the only one who was initially excited about the scheduled chat only to be disappointed at having to purchase a membership to join in.)

if i am incorrect i certainly apologize; it would be great if that were the case & i would be glad to be corrected!

cheers,
:-)melissa in ohio

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• By mary-angela
• Posted March 29, 2009 at 9:40 am
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Melissa, thank you for taking the time and energy to share your input regarding our AGMD Online Chat Room.

As a patient suffering from chronic idiopathic intestinal pseudo-obstruction for well over 30 years, I understand many of the issues and concerns that tend to accompany what I call, "The Forgotten Motility Disease."

The need to shed more light and provide resources and support, not only for chronic intestinal pseudo-obstruction, but for all motility diseases, is clearly evident. This is why AGMD continues to be passionate about its mission and to reach out to others so they will know that they are not alone.

We encourage membership into the Association of Gastrointestinal Motility Disorders, Inc. (AGMD) as a means of providing one strong, united voice in drawing more awareness, education, the promotion of research, and offering much needed support.

Although there is an annual fee of $35.00 to join our organization, no person has EVER been denied membership due to financial, health or for any other reason since the inception of AGMD in 1991.

At this time, our newly created AGMD Online Chat Room has a limited number of people who can participate at one time. Certainly you can imagine 500 people trying to chat at one time? It would be extremely chaotic and not beneficial, especially since there is a slight delay in the transmission of conversations. By limiting conversations to members of our organization, this helps to better address any potential problem concerning over populating the Chat Room. It would also be most unfortunate if one of our members signed up late and could not participate because the room was filled with non members.

Anyone who prefers not to join AGMD, is ALWAYS welcome to participate in our AGMD Online Community or even to schedule a private chat session with me personally or members of our volunteer staff. We will be setting-up private chat times within the next few months as well, where one or two people can communicate in a session with AGMD.

We are happy that our AGMD Online Community has provided much support and many friendships. I am humbled to see such outreach from others who are also suffering as they respond to people in need. You can see that our Online Community is a perfect forum for the large number of people who do respond. Our private Chat Rooms are for a smaller, more personal session of support, help and hope.

I hope this clarifies participation in our AGMD Chat Room and I also hope that you and others might reconsider joining us in our upcoming session, future sessions, or any private session that you feel might be beneficial.

Remember, all of us who suffer greatly from digestive motility diseases and disorders share a common bond as we travel the path of chronic illness. AGMD enables a stronger united voice so that we can all be heard and we all can share what its like to live with digestive motility disease.

EVERYONE IS WELCOME.

Mary-Angela

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• By Carol88
• Posted March 29, 2009 at 1:24 pm
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I would like to participate in the on-line chat room today but don't understand how to pre-register. I went to the site to sign up as a member...what else do I need to do to join the chat.

I am new to this site. I am totally discouraged with all the physicians I have seen...that pat on the knee saying "it'll be all right", implicating it is all in my head and one who actually told me to "doctor shop" until I find a physician who believes my symptoms. At this point I am ready to cancel all physician appointments and they seem to do do more harm than good.

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• By mary-angela
• Posted March 29, 2009 at 5:51 pm
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Hi Carol,

I left a personal message on Sunday prior to our AGMD Chat Session, however, I didn't hear back from you and assume you did not receive the information in time. I am sorry that you were unable to join us during our AGMD Chat Session. We will be having others and perhaps you can join in when the next one takes place. We can send you out information about how to join and register if you like.

I understand that you are discouraged because of the lack of help and response from physicians who you have been going through. So many of us have gone through the same experiences, but be reassured that there are some very good doctors with expertise in digestive motility that might be able to assist you.

Please contact me personally at either my e-mail at digestive.motility@gmail.com or by phone 781-275-1300. I would be more than willing to learn about what you have been going through and provide you with some possible direction and resources that may be of help. I am sure that you will also find help and support through our AGMD Online Community as well.

Let me know if there is anything that I can do to assist you on behalf of AGMD. We are here to help!

Mary-Angela

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• By Loie
• Posted April 13, 2009 at 11:39 am
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Hi Carol,

I am so sorry you are experiencing what I think most of us have gone through with finding the correct dr. I do agree with you that it causes more harm than good for a dr. to patronize you and not validate your feelings, symptoms, frustrations, concerns, etc., etc., etc. I also think that is the most difficult part of any disease...not just motility disorders...although motility disorders are so misunderstood.

I am not sure that I am making myself clear. I just want you to know that i feel deeply for what you are experiencing "at this point". Once you find someone that is compassionate and willing to do whatever it takes to help you...you may want to sit on his/her lap and give them a huge hug as I was tempted to do. There is someone out there that will understand and help you. Don't give up. When a dr. doesn't know what to do they put it off on the patient. So, once again, don't give up. It is not in your mind!!! It is real!!! YOU ARE NOT ALONE!!!!!!!!!

Keeping you in my thoughts and prayers,
Loie

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