New to site Fed up with this fight

:ybatty:
Hello my name is Reggie First time lister long time sufferer. I am excited to read but sorry to hear that so many of you are dealing with what I have been going thru. I would like to express my deep sympathy for all of you as we are truly the ones who can say "I know what your going thru" actually holds true meaning.
So on that note hence the title I'm new to this site and fed up with this fight. Diagnosed in 2008 after years of stomach and back pains. Come to find out the my crohns was a "side effect" from a disease I was diagnosed with called Ankylosing Spondilytis. In other words just another one of those auto immune things that acts like a flesh eating termite that no one knows how to cure, control or comfort. A.S. as its called fuses your spine, hip flexes and affects other parts to include from your eyes to your feet. its great if you into the whole pain and depression thing. Anyways. First surgery was 2009 Appendicitis with a "routine" exploratory exam while they where in there. 18 days of hospital, no food, 3 surgeries and many curse words later. I was released. Small bowel reduction on top of two large pus sacks and I awoke with 38 staples two drain tubes and that God awful tube down the nose into the belly that I have not read anyone talk about which has to be the worst god awful part to any procedure that they could possible due to a live human being. Well that was until three days ago when I has survey on that wonderfully pleasant abscess that decided to manifest right next to my sphincter. And the packing. The packing and packing. oh what a wonderful feeling. And here I am doing my first blog ever sharing my story getting it off my chest. Was told this would help more than just me. Of course that quote was from someone who had no idea what this stuff really is. So I am in bed healing blogging and wondering. Someone always has it worse and if we can help someone feel better for one moment in time than anything we encounter can be so bad after all.

Oh,Reggie,you poor,poor,soul.I'm can't say I know how you feel,because,luckily I don't.I have manageable UC.But there are many on the forum who will empathise with you,and I'm sure someone will be along soon to chat to you.I'm glad you found this forum.You will find it invaluable for support,advice and friendship,and a good old moan when you want to.And to be fair,you've got to much to moan about.We are all interested in each others symptoms etc.It will always help someone else to know they are not alone.I hope you have lots of support at home also.Get better each day.Best wishes.

Thank you so much for your understanding and compassion. I hope this site may help me talk discuss help and relieve mine and others situations. I as well am sorry to hear about you UC. My brother and mother have that as well. Once again thank you so much.

Hi Reggie and welcome to the forum. Sorry you are going through all of this pain. Your comment about the tube in the nose brought back horrible memories. I've always been of the mindset that as long as I'm 'out' you can do what you want to me. I had surgery to correct breathing issues and woke up to find they had wads of packing in my nose. The packing began unraveling and sliding down my throat...choking me. I was able to hold it by putting my hand down my throat and an observant nurse came by to help dig it out. Perhaps the scariest few minutes of my life. When I had my small intestine resection done 2 years ago I woke to the dreaded tube and panic set in. I felt that my throat was closing around it. The nurses tried to re-position it but that didn't work.I stayed up all night thinking I was going to die. When the doctors began their rounds at 6 AM I got them to pull it out. What worries me now is the prospect of future Crohn's related surgeries where the drainage tubes are requires. Perhaps they can put me into a medically induced coma until I recover... I'm sure we're not the only ones who hate the tube!

Get better soon.

Alan

Hello Reggie
My heart goes out to you with all that suffering and hopefully the tube will soon be removed.
It is the worst thing ever happened to me and such relief when removed.
You have so much to bear and with your attitude and touch of humour you will soon improve.
It is always helpful and constructive for others to know they are not alone and that this happens to others who not only cope but recover in time.
Feel better soon
Hugs and best wishes
Trysha

Yes the dreaded tube of horror I am sorry to hear that not only you are dealing with the IBS issues but others as well. You do sir deserve and have my utmost respect for being superhuman indeed to deal with these issues and somehow manage a smile from time to time. I was under that wonderful sleep medicine when my first was inserted the second time it was put in four days later they told me I had to be awake while they put it it. I felt sorry for the three nurses holding my legs and the two inserting the tube as I believe in the absent minded state I was in ended up insulating their entire families. Of course with no true meaning behind it followed by many many days of apologizes. By the way. they were unsuccessful. My largest problem I'm incurring with this thing we call the down side of living with this. is I'm a very active 40+ man that has found myself a mere shell at best. We must search for the best results we can find and then add our own spices to it and make it even better and its hard. God knows we love him and trust him to only give us as much as we can handle. Well what I've never understood about that saying is why then are there people who are perfect and perfectly gorgeous and have no issues at all is it because god knows that can't handle things like this So does that in some crazy wild sense say that we are stronger specs of the human species. Well here's to the nose tube it ranks in the top five of my most hated things about IBS surgery.

The tube was a part of my 2009 surgery. I'm done with that now. Currently healing from my perianal abscess manifestation. The packing the packing oh the god d#$n packing. FYI my number two most hated thing about IBS surgery. I am certainly appreciating all of your comment and high hopes. my heart and wishes to all of you as well

I just wanted to say how sorry I am you are going through this!
My friend had to have that once and they did put her in a med. induced coma and she lived. It was for six days. She was near death and had fluid around her heart and lungs and all over from congestive heart failure and she has aklonding spondilidosis. I never saw so much choking in my life and I felt so sorry for her. Dr.s gave her a 50/50 shot at living. Well, I prayed like never before and she lived. I am so sorry you had to endure that and now packing??? Oh dear! Hang in there somehow this will pass.:ghug:

Oh man, I feel for you! And I totally agree with you, packing is HORRID! It's like torture. I hope that you heal up really quick and your pain gets better!

The packing what a horrible thought can't wait for it to be over. Nurse comes in an hour to change. Nurse said its to bad of a placement for my wife to do it that a professional should do it. However. it seems like my a$# is a museum and there's a new nurse or doctor or training students everyday. I honestly had to tell them hey listen my a#% is not a museum and its not for display training purpose or amusement please allow me some form of dignity as I lay here in this god forsaken gown cheeks in the air and a room full of kids in white coats that still probably get their own butts wiped by mommy while they live at home going thru med school. Butt once again thank you and all for the thoughts prayers and wishes. It does mean a lot. I also too did ended up in 2009 in the cardiac ICU after my second surgery as my heart said It pretty much had enough and stopped working. Boy was I glad when they got the ol pumper working again I think many of us have been thru similar situations and can share them with each other with a bit of humor rather than some people who only get all emotional and the sympathy is over whelming

All of the med students make me feel like my bum is an art gallery or something, they all just stand there gawking! It's very uncomfortable, and I wonder how they would feel if the roles were reversed...My dignity went out the window when I was diagnosed, I guess.

You'll fit in well here Reggie.most of us have a sense of humour (Brit spelling) and most of us can discuss things with no embarrassment at all.As has been said in the past,embarrassment kills.But I understand your point concerning students etc.I mean,come on guys,let us have SOME dignity,please.

And you guys are right there is no dignity. As I have told my RN dedicated nurse that only medical necessary personal allowed. she laid down the law. I have came to the conclusion the medical staff have been numb. They have no emotions or cares what it looks like how you feel what the pain causes so on and so forth so I have became numb to them. I tell them how I feel what I want and when I want it. When a doctor ask you well what do you want. Do you want this or that. I say give me one year of your salary and I'll make the decision. Your the freaking doctor you should know what I need not what I think I need. I'm not a doctor. but hey they do they best they can for a person with show much brains and no personality

I'm sorry. just venting. Breath in breath out

Badazdad said:

I'm sorry. just venting. Breath in breath out

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Don't apologise for venting Reggie,it's better out than in :rof:


Did I mention we have a "vent" thread ? Although you do seem to be doing OK without it's help.:ylol2:

Lol my wife says I could vent even if I was a falling tree in the woods with no one around

Badazdad said:

Lol my wife says I could vent even if I was a falling tree in the woods with no one around

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I know what she means,my hubs has venting down to a fine art,and he's fit and healthy and retired and has absolutely nothing to vent about.........It's a man thing.I hope you're feeling better today,by the way.For your wifes sake:smile:

I have a very bad stomachache again today and I began crying because sometimes it just gets to you and my best friend says, well that's what I am here for, you complain to me. It was so sweet and he gave me a huge hug and made me cry again. It's been a long haul and I need a diagnosis and some help.:smile:I can only imagine how you must feel!:ghug:

You have not been diagnosed yet? Sounds like you have a great friend there and fr the most part it doesn't matter medically what's wrong with you as having a friend like that is the best medicine you can have. Do you have an appointment to see your family doctor to get into a specialist

I was awhile ago and then the last time they said nothing showed. So, now undiagnosed. I am hoping to get a pillcam if my Dr. will ok it. I am waitng to hear and also find a facitility nearby that will do it. Thanks for replying Bazadad:ghug: He is the best friend I have ever had and I might end up marrying him if he keeps this up!

Badazdad, so sorry to hear what you're going through. I'm 19 and was diagnosed with crohn's only recently. I had a really bad perianal abscess two weeks ago, that got drained in the OR. They packed it with 3ft of packing and when the nurse pulled it out it's just fucking horrible. It's hard to see a light at the end of the tunnel, but hopefully you'll get on some good meds soon that will take away at least some of your pain. You really have been through it all, I only hope that it gets better for you, so that you can get back to enjoying life like we are meant to. I'm just really sorry that you have to go through all of this, my thoughts are with you