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kiya
 kiya
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April 28, 2018 8:26 pm  

When you told me the other day about the negative symptoms you had developed and were no longer taking gattex, I was very sorry but to be honest I was also feeling a little relieved because as we all know, gattex can cause serious side effects.  But I am not you and ONLY YOU know how terrible your short bowel syndrome symptoms are and how strongly you desire to overcome them.  And I am pleased that you have an excellent team of doctors and staff that are looking after you well.  To be very honest, if I were you, I wouldn't consider retaking the medicine but again I am not you and it is your life and ONLY YOU can make final decisions about anything about your life.  And we are good and special friends and of course, whatever you decide or do or do not, I will support you fully.

kiya

 


kiya
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April 28, 2018 9:07 pm  

p.s.

I hope you are not offended by what I wrote.  Because I myself have short bowel syndrome like symptoms, I understand how terrible they are and how sad, miserable and irritated they make me feel.  I (and we all) only want you to be well and happy.

love,

kiya

 


sjlovestosing
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April 29, 2018 8:17 am  

Marcie,

Hoping you are feeling better soon. I have prayed for you.

Stella


Marcie
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April 29, 2018 1:22 pm  

Kiya, no, I am not offended.  I, in the back of my mind want to go back on it again..  But going to wait until I can get things straight..  There others  medicines out there.. And of course have mostly the same side affects. What doesn't huh?  Time- that ugly word again.. 

First have to get out of my depression..  :-(   Then the thinking about it again in a bit.. Time off for me.. As I see some people are worse off than me in the SBS area,  I don't want to get to that point either.. I want some control.. (?)  But I have a ways to go.. 

Just get out of my depression of everything,  of the pouch, SBS, and everything else...... Just fed up... But can't think in this frame of mind either.. That I know.. where is the warm weather and the sun anyways???? that may help-- for starters.  Sick of crying over everything and I am not a crier.. I know that I am strong, just pooped out... and disapointed over everything in life for the past few months.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


sjlovestosing
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April 30, 2018 6:46 am  

Dear Marcie,

I understand your depression as I also struggle with that at times. Ever since I found out about my cancer, I have been having crying jags like you wouldn't believe. My own personal pity party, I guess. For me, it's relying more heavily on the Lord instead of my own strength that has been seeing me through all this. I have been amazed at His goodness.

I was scared to death of all the procedures I had to go through, but God has helped each time with nothing but positive experiences along the way. Every person, technician, nurse and doctor have been so helpful, kind and understanding. I know He'll see me through all the rest.

I will keep praying for you that God gives you the help, comfort and strength you need to get through all this. Hang in there. God loves you.

Stella


VeganOstomy
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April 30, 2018 12:06 pm  

Hi Marcie,

I'm so sorry to hear that you're struggling. 

I came back from the Healthevoices conference last night, and at the conference, there were so many mental health advocates there who I think you'd find great value in getting in touch with. Just like how I put out information and advocate for people who have an ostomy, they do the same for people who have all kinds of mental health challenges. 

One of them that could help to share more resources is Gabe of www.gabehoward.com/

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


john68 liked
sjlovestosing
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April 30, 2018 5:19 pm  

Marcie,

I failed to mention that I have been seeing a therapist as well concerning my anxieties and she has been of great help to me.  It's always good to have someone to talk to and who will listen. 

God bless,

Stella


Dona
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April 30, 2018 7:18 pm  

Hi Marcie,

I am very sorry to hear the Gattex isn't the answer right now. I know you have been through a lot. You are a strong person but this is a huge challenge. Just wanted to send my support. Finding someone to talk to sounds like a really good idea.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


kiya
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April 30, 2018 8:07 pm  

Marcie,

Although I cannot know your physical pain and discomfort as you experience them directly, our hearts can connect and I can understand what it feels like to be 'fed up' and to be sick and tired of everything, even to be sick and tired of being sick and tired of everything.  We, who have physical disabilities and/or dysfunctions, are extra vulnerable to such negative mental states.  I feel that it's important that your medical team should be aware of any unusual mental issues you may have.  Please don't keep them within yourself.  We are one family and we are here to listen to you, help you and support you.

I was seeing a psychiatrist (who was also a qualified clinical psychologist) until recently and he used to say that there are four things you need to be healthy and happy: nature, music, laugher and play (play as 'having fun').  I hope you can find even a few moments each day when you can be away from any negative feelings and emotions.  There is no doubt that you are a very strong person.  That's your nature.  I truly admire you.  I will write to you separately and I will be praying for you.

lots of love,

kiya

 


john68
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May 1, 2018 2:13 pm  

Hi Marcie, A part from Bowel problems going to seek help with our mental health is probably at the top of the list of Doctor visits we put of doing!! But why? because we think we can cope on our own, to embarrassed! As Eric points out their are many people in this field who can help unlock our fears and problems. Our mind/Brain is like the main part of our body  the control centre. If it aint sending the right signals nothing else is going to work. Having an ostomy is a relief from sickness and a better life and if the next step is counselling go for it.

ileostomy 31st August 1994 for Crohns


Marcie
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May 1, 2018 3:20 pm  

John, Dona, Stella, Eric, and everyone.  I thank you for your support.  Yes, John and all I agree with mental support.  I started this within months after my operation and what my body went through (see about me)  so I don't have to waste page time thank you-- I was in shock.  I was not sick even.  Everything was a surprise. So, I did not see this as an life saving issue for me.. I do now at times.. After reading all of your stories, I feel lucky.. I was not sick.. Just a huge mess and then major issues that came along with it.. ready my post.  

Nearly 4 years as of, when I came home (this Nov.) after living in ICU a and CCU.. etc.. trying to put things together in my mind, shock..!!  Yes, That is the first thing I did after learning how to walk again and get my stregnth back-- I did and still do receive therphy.  I was put on antidepressants, and meds to help me sleep. (I could NOT sleep-I was in such a state)  Although PILLS do not do the job, you have to work with them.. I plan on staying on these as of my age and who knows what else is going to happen? I always though of myself being stronger than this.  But most Ostomates do need this help.. GO FOR IT !!!!  Doesn't mean you have to be a lifer.. Start low and if needed work yourself up-- Due to being and ileostmcy- had to up it..  Now with SBS I will stay the same grade of meds. (?) --later on this)These meds did help me much..I works hard with them!!  I am dealing with something else these past few months.. Don't know if you should know or not. ??  -- IF u will find me a bad person-which I am Not. I am a good, kind, senestive person. I am outgoing personality and love people much. I wish all the best in life and support you can get.  I feel I am alone with this area of the past few months. This area has hurt me so much, and not getting support at  home with it either.  Your family to me and I love you all.  I do want to write it.. Do u what to hear it? It will be short.  It will help you better to understand where I am.  IT will pass but I think in a very long time tho-- I am hurting much. I need your support. This is where being an ostomate starts all over again, from square one. I have to get back to my normal again.. I want to be just an ostomate and live that life again.  Dona, and many, I am so happy that you all can travel, I am jelouse, but I will get there.. I am happy that you all cant get up and go!! It makes me very happy for you.. My issue contains being an ileostomate.  Sorry for the miss-spellings. :-)  but that is Marcie.. HUGS to all. GOD  bless.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


john68
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May 1, 2018 3:37 pm  

Pills to sort the mind are one thing and yes do work, but having that face to face with a person trained to spot problems that's a whole different ball game. Every one on here are from different back grounds, age, faith types of illness that needed an ostomy. the time to heal and except will be no different. what we do after wards is for one person may be impossible for another. but that can be as much to do with age! I will hit 50 this October and not as many ladies look at me as used to ( Most of it was in my head any ways) LOL. But contentment that is worth money. It will through time come

ileostomy 31st August 1994 for Crohns


Marcie
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May 1, 2018 4:02 pm  

Oh, what the heck..  Here it is......... First I am taken off Gattex.. (pain in leet side-no blockage etc) Then at infusion, the head nurse, aid that I threatened her life. and fear for her life from me!!!!!!!  I was brought in just before my infusion (they called me Dr. before hand and she called me as heads up and that it sounded like they were off their rocker-(bring support) I brought my son.  I did not know of a meeting. Just thought that I was going to get my fluids which were well needed.  "She" wrote up a report of her fear of her life from me.. and had the police there to arrest me if I showed any facial, viable, action etc.  Talk about shock.. "ME??????????" I have never threatened anyone........... I even liked this person (not now-I think she has issues and a very unhappy person) She is not nice to others within her working areas, etc.  people are unhappy and want out. Personaly, I did  not like the change there either.  No one is to talk to anyone.  Just sit there and all is to be quiet. It pretty much comes down to that she would not let my son in to visit me the Friday before,  I NEVER get visits or much support with or after my operation-I do it myself type of person-- (proberly a bad choice huh?)  Well, she picks on me.. always.  I just sucked it up-- 3 times a week I have had to suck it up with her along with other nurses. Anyways, (got off course here) When I found out that Matt could not visit me, I got upset. People get 2-4 people visitors at a time all through their infusions.. I don't.. I read, of say a hello to others etc.  If they are not sleeping and want to talk  I give support to them.  I did raise my voice a little bit, said, she has it in for always, I don't understand???  I will talk with her  on Monday.. From that, these young minded type 7th graders styles up front said that I was out to get her, and soon.. This is all hear say..  So, they wanted me to sigh a contract if  "she" feels for her life, she can call the police and have me arrested. Needless to say id did not sigh it.  I am NOT in the wrong.  "SHE" is. So, My Dr. anted me out of there ASAP, and got me into another place near by.  Bad part is they are only open 3 days a week. So, I can only get 2 infusions per week not 3.  Which has put my health in a bad state. This infusion place is much nice tho-- and really ant people to talk to each other as it gives support, and an outlet.  So, in order to get my 3 infusions, I have to drive 2 days a week about a 45 minute drive.. and then one at the closer (15 min. drive) one. I have faith in this new group of total kindness. Just along haul.  So, I am back again with anger because of my operation and sick to my stomach of how I was treated. My husband says let it go- My r. said the same..  This put a black mark on me, my name etc.  I feel like they took all my strength and pride away from me with such an accucation.-sp- I am so hurt. IF I meant harm? I or anyone would not let it bother them.. I have been there for over 3 years, and I get hammered like this? I cant eat, I am so weak, and now on a walker.. Why do people say such things that can be so harmful to ones personality? During this timing, I am off gattex, stopped smoking, I am proud of myself of the good of not smoking. etc........  I did call that office to send me the complain by within 48 hours, as I felt their lax of time has been well over due. I am fingered, I should have that report. Got to talk with "the team" - did this this morning, I feel good that I am standing up for myself.. My husband is mad at me now. He doesn't want "stress" in the house.. I am a walking mess of stress over this.  Lawyers cost money- he says.. All I want is the paper of this write up is all.  I n owed this much!! Don't just sit there and have the cops outside the door and give me that crap............   Thanks for your ears..........  see u at the lounge??? on this????????? Marcie.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


VeganOstomy
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May 1, 2018 4:34 pm  

Hi Marcie,

I can see that you're in a difficult place, and my heart goes out to you. 

There is a lot of going on right now, but I really think that you need to get to a place of relative calm around you. 

You may need to file some complaints about the way you've been treated, but I think that can wait until things are more stable for you. 

Please prioritize your needs for the next week, and find resources to help you achieve them. I would still love it if you could reach out to Gabe or anyone else in the mental health space as they would be better suited to offering resources than myself. But I suggest doing it privately.

For now, I will close this thread, since it's no longer on the Gattex topic, but I do hope that you reach out to people who can help you professionally and maybe even legally.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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