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Help Please - First experience with this Horror

Past Member
Sun Feb 05, 2012 7:50 pm
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I just got out of the hospital after four days of having an N.E.G. tube jammed up my nose, down my throat, and into my bowel to try to relieve a bowel obstruction so I would not have to go into surgery.  I never knew there could be such pain with no pain medication.  The 4th attempt which finally worked was administered by an ER surgeon and he used Exacti-caine to numb my nose and throat.  My clothes were soaked with blood, vomit, and urine and had to be cut off me and tossed.  

I truly thought I was going to die.  He left the tubing in ice for several minutes to stiffen it and when I started to gag/vomit, he stopped pushing until I could catch my breath.  The other R.N.'s and doctors just kept shoving the tube down and would curse and look at me with pure hatred when the tubing shot out of my mouth in a gush of blood and vomit.

I have never heard of this before and had no idea how to prepare mentally for this torture and fear.  After reading up on it (now that I am home) I understand bowel obstructions are very common in the ostomate world, as are hernias and scar tissue (will this ever end?).

Anyway, they discharged me after days of agony with no instructions on how to prevent this.  My large parastomal hernia and abundance of scar tissue are crimping my bowel down to the width of a small straw.  The N.E. G. opened it up for now, but who's to say when this will come again.  How do I predict a recurrence?  Is there anyway to prevent these obstructions other than surgery?  Please tell me if you have had any experience with them?  Anything will help.  Loretta
These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

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Past Member
Sun Feb 05, 2012 8:11 pm
Oh, Loretta, dear one .... no idea.  And I can't imagine.  I have read about this.  Makes me want to consider a liquid diet.  Scares the holy "sh_t" out of me.  

The scariest words were "no instructions" how to prevent.  Dear God why can't we get better information.  I know it is worse out here in the sticks where we live but I can not stand the idea of any complications.  And people who just don't know any thing and could be making it all worse.  

I want to hear more about what all happened to take you to the point of going into the ER and how they decided to treat you.  ... what options you had and/or didn't have. Was Albuquerque a possibility?

I had some overload - physical and emotional - and 'forgot' to eat and drink - went to sleep - stopped things up, became toxic and lost more than a week of time and memories.  I didn't have to go through all that you did- don't know if I could or would. It has been a month.  I am getting things back to working order after some difficulties.  But I am taking care of it.  I want to know more.  I will be watching - I think this is more common than you and I generally have heard about.  Carol
Sun Feb 05, 2012 10:52 pm
What a horror story. Loretta! I think your misfortune had a lot to do with being treated in the Emergency Room by an ER surgeon. Your best bet is to talk with a GI surgeon not affiliated with that particular hospital. If you see similar symptoms surfacing again, don't wait until they become acute but make sure you will be treated by a specialist right away. On another note, I don't think those who witnessed your torture felt hatred as much as horror at the sight of your suffering. Let's hope and pray that you never have this experience again.  PB
Past Member
Mon Feb 06, 2012 4:22 pm
Awww, Loretta, my heart goes out to you, i've had the dreaded tube and know exactly what you have been through, it's horrendous!!!. It was only last week we were joking about our mutts! ( hope her hairs grown back)  Anyway, your home now and through another experience. What doesn't kill you, will make you stronger! Good job us ostomates are superhuman or we just wouldn't get through all that is thrown at us! I'm sure you know all about the suspect foods like peanuts etc, so wont bore you with that, but if everyday foods are causing you problems maybe you should talk to your doctor?
Take care, DD.
Past Member
Mon Feb 06, 2012 5:48 pm
I keep list of what thickens and what thins stool on the front of my refrigerator.  With the slightest change in what go into my bag - or doesn't I glance at the lists and change my diet accordingly.  ie - fruits - pastas ... such. I keep juices more now than I ever did in the past.  Also several people have talked about hot liquids and "rolling" around - butt in the air and pulling belly up.  I don't like coffee or tea so I use broth for a hot drink.  Also, I could force hot coffee or tea if needed - don't have to like it.  I also keep lots of V8 - liquids. Prune juice (buttered or not) was given in the hospital but many people don't like that.   Baby foods and yogurt???

Also, pain meds - don't know if they are part of your treatment or not.  A friend with cancer and on pain meds - narcotics - was told to take a stool softener any time she took a pain pill.  I pretty much follow that advice.

Are these things you already know or not - most everything I know has come from previous postings on this site.  You might want to do a search and see what you can come up with.  After I read your story, I did another rant with local friends about the medical profession here.  If I started to have what I thought were serious problems, I would probably head for Lubbock or Albuquerque.

I haven't found an ostomy nurse online but have thought about looking.  Some people here say never take a laxative. I would in a minute and have some mild vegtable laxatives nearby all the time.  I would also try glycerin.  I expect to get lots of expressed concerns (no/no's) - but these are things I would do rather than have to face another doctor.

I have not considered irrigation, but would if I had been through what you went through. Let me know a status report.  About Mom also.
Past Member
Mon Feb 06, 2012 7:45 pm
Thanks everyone.  Keep the suggestions coming.  I'm getting sick again.  I can feel it.  Just reached out to the community to see if I could find a good person to foster Persi while I go through this.  I knew nothing about obstructions.  Never heard of 'em.  Never imagined the torture I survived the past week might be used on me again.  I am so, weak, scared, and alone.   My ex dropped me off from the hospital and them headed back to AZ, his hatred of my mother superceeding any feelings he may have had for me or responsibility for this poor little pup.

I am only drinking water.  Bag is filling with white foam.  I am filling with trepidation.  Loretta

P.S.  Please keep writing.  It helps keep me from going off the deep end.  Something tells me I may lose my mind if I have to get "the tube" again.
Mon Feb 06, 2012 8:42 pm
I suffered a bad blockage before Christmass and my surgen was working on it for two hours flushing and whatnot. Finaly he gave up and asked me if I would mind an early reversal because he had to go in anyway and I laughed so hard it brok lose and made a real mess of the treatment room so find a good comeadian to make you laugh it might work for you too and it is relitivly painless
Past Member
Mon Feb 06, 2012 9:36 pm
How about bringing in one of your Mom's health care people to help care of both of you (all three of  you).  I emailed you a list from ostomy.org.  Things to do.  Call one of the GI people in Albuquerque.  

Try the hot drinks and positions.   Hot baths - massage .... Do something before it gets so bad.  Find a GI person or someone that has worked with ostomy before. Get on the phone and find some help.  NOW.
Mon Feb 06, 2012 10:24 pm
Loretta-

I am so so sorry to hear about these serious problems.....I also had no idea that there is/was such a problem in finding decent ostomy-related medical care where you are.....although even tho there might be a lot of "fish in the sea" so to speak, in one area, sometimes it is still very difficult to find someone with the expertise, compassion, and experience with a particular set of symptoms/disease.

You are about 7 hours in drive time from my area in Texas (Dallas).  If you could find some help in your area, even temporarily, until you could get out this way, I know of an excellent colorectal surgeon who will give you the best he's got.  He is one of the best there is.....his name is Dr. Jefferson Hurley; and he is located in Irving, TX.  He has been my surgeon and saved my life; he just did my reversal last Wednesday and I am out of the hospital 2 days early and doing far better than I ever expected.  This man has compassion for his patients and WILL figure out what's going on with you and if it is within his realm to humanly do so, he will do his best to make you better.  I don't know if you can get out here or are even interested in getting an opinion from him; but if you are his practice info can be located at txcolorectal dot com.

Like Carol said,  get in touch with SOMEBODY local for today....tomorrow.....just until you can find the additional help that you need.  DO NOT DO NOTHING!  Your health and your life are MUCH TOO IMPORTANT TO SACRIFICE ......MUCH TOO IMPORTANT!  Right now you are in a paralyzing state of shock, of sorts, so much so that doing nothing seems like the lesser of all evils but let me tell you now that if you are already having symptoms again you MUST get care SOON!  And, like Carol said, maybe one of your mom's providers could at least give you a LEAD of some sort for today....NOW.  You never know when saying something to a person who knows a little something about a lot of things might trigger a lead that could start paving a path to the help that you so desperately need.

My thoughts and prayers are with you.  PLEASE PLEASE don't stop communicating with us; we are here and we ARE listening.

Darla
Past Member
Mon Feb 06, 2012 10:50 pm
Loretta - let us know something - email me or post us.  Get a friend  to bring you to Odessa - last resort - my doctor Dr. Davenport.  You know I have bones to pick but as least I know he is a good surgeon.  It you are getting there to another surgery, he is a good surgeon.  Or Dallas - really good recommendation there  - you know we don't have many of those - find a way to do something.  Immediately.  Your body is probably getting toxic and you are not thinking as clearly as you might at other times.  You haven't really gotten over the last block.

There are good suggestions on the lists I sent you - open your email.  DO NOT DO NOTHING tonight - get someone out to help. NOW...  Call your Mom's helpers so someone will be there. Tonight.

What friends do you have there in Carlsbad to call - pick a couple and call them.  High school friends - neighbors - someone.  Have them get someone to care for your mom - dog.  Let them help you make a decision what to do.  Stop looking to your ex for help ... do something. Take charge and do something.  Now!

Darla and I are waiting to hear something.
Mon Feb 06, 2012 11:15 pm
Loretta, find someone right away who will be your best advocate. Call in every IOU. Don't place your fate in the hands of some ER surgical novice. You have incredibly caring friends here who would give anything to help you through this ordeal. Everyone is telling you to act now while you can make your own decisions.    PB
Past Member
Tue Feb 07, 2012 10:48 am
Loretta, we need to hear from you.  

Give us a report - please.
Past Member
Tue Feb 07, 2012 12:27 pm
I have taken an extreme step.  I have talked to the Roswell Police Dept and asked for a welfare check on Loretta.

I recently had a similar incident in which I did not know what was happening to me.  I was not eating, not drinking and didn't know that I was not eating or drinking.  I lost a week of conscious thought and memories.  I think I am fine now but have friends that are monitoring me - making sure I am stable.  Some of these situations can get very serious very fast.

I am concerned.  Loretta was in the hospital for 4 days and then on day 5 was sick again - and alone???  All the info I had was a probable last name and the fact that she had been in the hospital for 4 days (the hospital I tried to call - 25 bed - is closed for repairs for now). This is a small town and there can't be too many people that fit the description.  

And if our Loretta is okay and gets angry at me - so be it.  I feel I have to try.  Carol


Last edited by Past Member on Tue Feb 07, 2012 12:47 pm; edited 1 time in total
Past Member
Tue Feb 07, 2012 12:42 pm
I just heard from the Roswell police.  They did make contact with her - she has home health care beginning today. And they tell me that she is okay.  I am glad I took the steps I did.

Loretta, when you get back onlin and get this info - Remember - there are people out here who care about you and wish you the best.  I couldn't "just do nothing".  Your friend, Carol
Tue Feb 07, 2012 12:58 pm
                                 
dawneagle wrote:
I have taken an extreme step.  I have talked to the Roswell Police Dept and asked for a welfare check on Loretta.

I recently had a similar incident in which I did not know what was happening to me.  I was not eating, not drinking and didn't know that I was not eating or drinking.  I lost a week of conscious thought and memories.  I think I am fine now but have friends that are monitoring me - making sure I am stable.  Some of these situations can get very serious very fast.

I am concerned.  Loretta was in the hospital for 4 days and then on day 5 was sick again - and alone???  All the info I had was a probable last name and the fact that she had been in the hospital for 4 days (the hospital I tried to call - 25 bed - is closed for repairs for now). This is a small town and there can't be too many people that fit the description.  

If you have any info about Loretta, please try and let me know. I remain ...  cdawn who can be located at dawneagle followed by the usual period and the most common three letter ending.  You bright people should be able to figure that out.

And if our Loretta is okay and gets angry at me - so be it.  I feel I have to try.  Carol

Carol, thank u SO MUCH for checking things out for us concerning Loretta and taking this out of our forum and into a real time environment close to her so we could get some clarification on her welfare and well being.  it is good to know that everything is ok.  Good to know that u have friends checking in on you, too. We all need each other.  Thanks again for making a difference.
Darla
Past Member
Tue Feb 07, 2012 2:51 pm
Dandare is monitoring us - Colm glad to know you are out there.  ... all he can do at this moment.  Colm - if you want something posted - try and get it to me (however possible) and I will post.  I hope things are somewhat reasonable in your life for now.  One of the most difficult things for me to endure is to be out of touch.

Colm / Dandare sends his support to Loretta (and us).  

I am becoming thankful for my really difficult month.  I have acted due to my experiences. I can't regret anything.  I really hope Loretta is okay with my actions.  I try to learn from the worst things that happen. The past few weeks have been among the "more difficult".  Much better now. I hope Loretta is saying something similar soon.
Tue Feb 07, 2012 3:19 pm
                                 
dawneagle wrote:
Dandare is monitoring us - Colm glad to know you are out there.  ... all he can do at this moment.  Colm - if you want something posted - try and get it to me (however possible) and I will post.  I hope things are somewhat reasonable in your life for now.  One of the most difficult things for me to endure is to be out of touch.

Colm / Dandare sends his support to Loretta (and us).  

I am becoming thankful for my really difficult month.  I have acted due to my experiences. I can't regret anything.  I really hope Loretta is okay with my actions.  I try to learn from the worst things that happen. The past few weeks have been among the "more difficult".  Much better now. I hope Loretta is saying something similar soon.


Colm- we miss your smiling face Smile  Hope to hear from you real soon.

I can understand your thankfulness, Carol, for your difficult month.  Sometimes adversity begets clarity.  Thank you again for taking a chance.    FRIEND.

Loretta - We are all rooting for you.  Let us hear from you as you are able.
Tue Feb 07, 2012 3:39 pm
Carol I'm sure that when Loretta gets back in shape she will appreciate the actions you took on her behalf. I remember oh so well all the blockages I went through and that miserable hose in the nose, but what I can't understand is Loretta said they gave her nothing for the pain, that is just plain inhuman, during all my blockages I was given pain medication until the doctor finally convinced me I needed another operation, and complete success, not a blockage since the six years or so. I just hope Loretta sees the right doctor to take care of her, Ed
Tue Feb 07, 2012 4:10 pm
Good for you, Carol, for making that call. TG Loretta has someone looking in on her now and let's hope to hear from her real soon.   PB
Past Member
Tue Feb 07, 2012 7:04 pm
I just received a nice note from Loretta.  I am sure she will be back here soon.  A bit of recover first.  Carol
Tue Feb 07, 2012 7:08 pm
                                 
dawneagle wrote:
I just received a nice note from Loretta.  I am sure she will be back here soon.  A bit of recover first.  Carol


Good News.  Many thanks.
Tue Feb 07, 2012 7:17 pm
I can hardly respond, through the tears I am shedding. You are all so incredibly supportive. Thank God you had the fortitude to call the local police. Loretta I am praying that this gets resolved SOON! Insist on pain meds...
Past Member
Tue Feb 07, 2012 10:51 pm
Hello, everyone.  Thank you so much for your thoughts, activism, prayers, recommendations, etc.  I did EVERYTHING you told me to do.  I fostered my pup out to some old high school friends, called Mom's Social Worker and told her I needed help NOW, and think I dislodged the new blockage with hot tea, knee curls, and trying not to panic.  Sorry, I had to load up on the Lorazepam (2 pills) for that.

I told Mom tonight I can no longer care for her here at home.  She began to cry and said she could be so much help to me if I would let her!  That I am totally aware is a young, healthy, ambulatory mother's dream.  My doctor told me last night it was me or her.  "She's 98, you're 60.  You decide."  Every tiny push of the wheelchair, bend to pull up her diaper, twist to catch her fall, makes my hernia distend.  The hernia and the extensive scar tissue are racing to center field where my upper bowel lies crimped and waiting.  It is a time bomb.  She can't understand.  She cannot hear and what she hears, she cannot process.

I called "A Place for Mom" tonight and they, too, are trying to help me.  The time has come.  I have to move her.  I would also love to move away from here.  After the plumbing blew and she and I spent the last month in a hotel, I am done.  There is nothing remotely home to me here anymore.  Some of the best surgeons are in CA and I would love the one who saved my life to do the reversal if I ever can afford it.  The hospital bill (my part) will be about 15K as I have no Supplemental Insurance and NM will not sell me a policy because I'm under 65.  CA will.  So, once I sell the house, pay the bill, and I am steady on my feet again, I will look Westward.

I have an appointment with the best GI in town on the 22nd,  He has done hundreds of reversals in his career and my Ostomy nurse said don't let anyone else do it if I stay here.  Medicare calls reversals "elective surgery" but I have a huge hernia and extensive scar tissue and if they don't pay for them to be repaired, I could be in the hospital again and again with blockages.

You all will never know how much you mean to me.  I didn't know where else to turn and I was paralyzed by fear and pain.  Now, all 5 GI's and both hospitals are on board.  I think they got scared, too, as they sent me back home from the ER the first night with nothing!  By noon the next day, I was unresponsive,dehydrated and Mom's caretaker had to call 911.  I was almost gone. like you, Carol.  Scary, but a certain sense of peace.  Then, I remembered I had made no plan for my little pup nor would never see my grandson again.  I have a lot of paperwork to attend to tomorrow at the bank in case this happens again, but I will never let it get this far.  It just caught me by total surprize.  By the way, Carol, the cop was really cute!  Perked me up!
Tue Feb 07, 2012 11:16 pm
Thank God you have turned the corner! You did the right thing! Never apologize for using meds once in a while. It is your life that you are talking about, and no one is judging you. My grandson became my focus to live last year. I swore to God that I was going to be around to see him grow through the most important years of his young life. I still have two phone messages on my cell from last March, which I listen to every month and resave. Food wise, think very small meals, and wet and soft... Can't think of any good humor to go with wet and soft....jean
Wed Feb 08, 2012 12:04 am
Thank God you sound much better and in control. Lots of hard decisions lie ahead but you will overcome all obstacles. You should know nothing but happiness!   PB
Wed Feb 08, 2012 12:23 am
Loretta-

Thank God for your progress today!  I think we are all breathing a little easier tonight than we were last night this time!

Glad to hear you are out of the deep woods, physically and that you are in better control of your situation.  I am so thankful to Carol for sending the local police out to check on you; the fact that he was cute cop turned a light-hearted spin on a very serious subject....YOUR WELL BEING!

You will continue to be in my thoughts and prayers.  Please keep us posted, ok?

Darla
Wed Feb 08, 2012 4:54 am
That is a horror story!  I just had a bout with what I think was a sort of obstruction ... felt like the wrath of God for about 3 days.  I had b/m's from the stoma but they were sort of dry.  I just went to bed, used the heating pad, didn't eat and drank liquids.  My husband bought me a bottle of Gingerbread Liquour and believe it or not, that stopped the pain.  No, I didn't drink the whole bottle at once, just a couple sips at a time.  I hope NEVER to have to go through what you went through. I am a R.N. and NEVER EVER would I have inflicted this kind of torture on my patient.  Hope everything stays well with you.  Wish I had answers for you!!
Wed Feb 08, 2012 7:41 am
I feel for you.. i have PTSD from all the horror of almost dying from bowel perforation and one of the things that haunts me was the NG tube, i have a fear of choking anyway so it was horrific for me and like you the nurses were horrible.like you i have a huge hernia now and i am really worried about bowel strangulation and obstruction.
Past Member
Wed Feb 08, 2012 7:58 am
L, you can see how connected we all are ....  how concerned we were about you.  Also, how everyone of us can relate to what you have experienced.  We seem to have a tendency to forget how quickly we can go from "normal" (and being a caretaker) to everything in our life turning deadly dangerous and needing assistance.  One of the many things I learned is the importance of having a backup system.  

The biggest lesson for me is watching you recognize your situation and making decisions about your life that will serve you well then following through with the necessary difficult actions ...  It all seem critical as we enter into life changes.

I was also glad to hear in this email about a greater availability of medical help there where you are than I thought you had. I consider us pretty thin on medical assistance out here.  

I am so grateful to watch you take charge of your life.  And I do see how difficult it is.  

Carol
Wed Feb 08, 2012 11:32 am
I feel your pain. I just had my second surgery for an obstruction from adhesions.  The first was a week after my original colectomy and my second was three weeks ago (six months later) for the same thing. The a week later I had a second surgery for an absus. I was really sick from that. I guess we all have to be aware of the possible complications from a colectomy. My stoma is working well, though. I just swtiched to using Convetec products and really like them. Does anyone else use those products?

Renee
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