Death?

hey guys,

  Well, since having my k pouch removed and having my 8th ileostomy created, on November 16th, I’ve been going through a hell I never envisioned. No matter what I do, everything I consume is turned into water, and purged through my stoma, not having absorbed any nutrients. At first I was thrilled because I’ve alwasy wanted to be skinny (most of my adult life, I’ve been around 190-200lbs), but it’s out of control, and nothing can stop it. I was just hospitalized for 11 days for IV infusion as the bloodwork indicated I was severely dehydrated, my kidneys were shutting down, and I was literally starving to death, despite eating more then ever before. Within 3 days, I was 170lbs (I was only 148.3lbs when I was admitted). They pumped me full of saline, IV nutrients, and a ton of medications to slow down what’s left of my bowel (they finally confirmed, I do have short bowel, aka, short gut syndrome), and for the time I was there, it was working, and I was dying to get the heck out and go home (it’s when my depression really kicks in). I came home just this past Monday.....since the meds and ostomy supplies I need are no longer covered by my drug plan, and I have only my disability to live on, I couldn’t afford the insanely expensive $60/day meds the gave me in the hospital. So, after those 11 days, I’m right back to 148lbs, and still loosing. For the first time in my life, I fear for my life. How can I survive when my body can no longer absorb any nutrients? Naturally, my doctor is on vacation until the 22nd, and I just can’t go back and be pumped full of fluid again and again, it’s quite painful, and frankly, is more then my battered psyche can handle. After 30 years, and 37 surgeries, this disease is at a point where it can kill me, and it’s scaring the hell out of me. Since I live in Toronto, I have no access to an intestinal transplant, which I would agreed to in a heartbeat, despite the risks, guess all I can do is pray that daily TPN will save my life. I’ve alwasy fought so hard not to give in to this rotten illness since I was first diagnosed at age 20, but finally, at age 50, I surrender, it’s just too much for my body to cope with, I don’t know what the hell to do. When death begins looking more appealing as a release from the physical and mental suffering, I know I’m screwed. Any of you faced this, and if so, what did you do to solve the problem? Any and all advice would be greatly appreciated, thanks for letting me vent,

Eric 😫😫😫😫😫😫

Original Post

Dear Eric, 

After 20 years off cu i end up after 3 shurgerys with a jpouch en it was tough  , but when it wend really bad i always held in my mind that after that things will get better again . You must realise that your never alone , god loves you and talks to you in many ways , trough your loved-ones or  trough all the good that surrounds you .  Stay positive and injoy little things . You will see , things will get better!

btw did you try Sint Marks Solution ? It significantly helps to slow down your bm and absorb some nutrition.

 

Bruno

I have a j pouch and had UC.  I’m sorry I can’t speak on your condition. I don’t know enough.  What I do know is the anxiety and depression you are going through.  I feel you need to take a benzodiazepines quickly.  It well help with that ascept and after your fix your Brain get that shit straight level out.  Then You focus and get yourself right. 

Hi Eric,

You sound like a warrior- and a guy that won’t give up.  I can’t imagine going through that.  I would go to see a psychiatrist and see if some antidepressants could help. You are 100% justified if you are down - but maybe some drugs (that are covered) could help.  Also, the drug that you can’t afford ($60), maybe the doctors can write a less expensive alternative.  I would check back into the hospital until you are out of this crisis.   It sounds dangerous. 

Best of luck and I will be praying for you - Doug 

Oh my, this is the worst I have ever heard.  You are surly a survivor to have endured all this pain.  I pray u have good days because that's we live for the good days.  I know when I had the ileo temporary until reversal it was awful.  I had so much output I needed a additional bag at night to hook up to drain in.  I was in hospital every week for transfusions.  I made it and when I had reversal it slowed to 1/2.  Instead of 12 -20 a day now down after 5 yrs.. 7-8 on a good day.  I think this is how it is for me.  We are all different.  Press on and find that balance and don't let them do any more surgery.  I believe once they continue to do this it only gets worse.  I will not go to a ileostomy unless it is life threatening and even then I am not sure.  That experience wasn't good and I don't think I would last.  God Bless and I will keep you in prayer.

You are stronger than you think! We tend to underestimate how strong our bodies are. Sometimes, sick is a mindset! I have several BM's and complications each day however I tell myself that I would rather deal with this than a diseased colon! I use Loperamide and it really helps thicken up my stool along with the Probiotic VSL#3 ! If you have not tried either of these medications ( no prescription needed for either) I strongly suggest you give them a shot! Trying almost anything is better than giving up! Positivity will always overcome! Here are some foods that really help thicken my stool!

- Nut butters ( I prefer smooth Almond Butter)

-Bananas 

-Oatmeal 

Pretzels! 

 

Also, overeating and drinking too much water give me very liquidy output. It could be that your taking in TOO much fluids!  

Eric this saddens my heart to hear the suffering your enduring. One of our governors named Booth Gardner from Washington State had gone through suffering from Parkinson's disease. I think he had a rare form of it. Loss his ability to speak for about a year and had a Parkinson`s related brain tumor. He was pushing a death with dignity law here as a result of his terminal aliment so, he was in the media while he could. He was a very popular Governor so it was sad and proud to see him showing us how to get it done.  In the States most all of the cases a persons estate ends up being spent down and in trusted to the Health Care Industry to keep their business model solvent. Not to get off point but, there are several layers and more complexities to what  he had in acted into law here in Washington State.  On the books it is pretty in effective and has never been used. But there is a interesting article in Wikipedia on Governor Booth Gardner. A lot of us watched him endure though the media coverage of him. It is sad but, we know  that bad things do happen to good people. It may not be fair but it happens. It is nothing that we are being punished for. Nothing that we did to deserve it. Nothing we did wrong. Even the earth it`s self  suffers now with all of toxins in the environment.   

 Good people will be fine after we past over, in some of your cases we know we will be much better off. We won`t be dealing with theses flesh bodies that a limited shelf life.       

Hi Eric,

I am just seeing this. Your doctor was supposed to be back yesterday and I truly hope you are feeling better and can get help from him or her. You have been through it, I see. Please know that you are very strong to have endured all that you have. Life is not fair, that's for sure, but we all see your strength and hear the frustration you have in enduring all of this.  Are you any better from the time you posted this?  All of my good thoughts and prayers are coming your way.

Hi Eric

You have been through so much I am at a loss for words. All I can offer is my hope that something soon will "click" and give you some relief. For what it's worth, I have had very positive results eating one cup of cooked GF steel cut oatmeal every morning to thicken things up and avoiding all other carbs, dairy and sugar. I also take one packet of VSL#3DS every day. I don't know if any of this will help you but I thought I would pass it along. 

Take care of yourself and hopefully you've already started to see some improvement or it will happen soon. 

 

 

ElizaB posted:

Hi Eric

You have been through so much I am at a loss for words. All I can offer is my hope that something soon will "click" and give you some relief. For what it's worth, I have had very positive results eating one cup of cooked GF steel cut oatmeal every morning to thicken things up and avoiding all other carbs, dairy and sugar. I also take one packet of VSL#3DS every day. I don't know if any of this will help you but I thought I would pass it along. 

Take care of yourself and hopefully you've already started to see some improvement or it will happen soon. 

 

 

VSL#3 has somewhat changed my life around however don’t expect to see immediate results. I also take digestive enzymes and lemon water to help digest it better. Also VSL #3 being a medical food actually curbs my appetite and is one medication that I can say relieves my stomach/pouch. The only issue I have with the VSL 3 is extreme gas. Definitely good to take VSL#3 after a course of antibiotics to restore the good bacteria that was lost. 

Hi Eric, 

There are no words to express how much I feel for you and understand the absolute anguish, sense of loss, frustration and pure black hole that you are in. You are damned if you do and damned if you don't and you see no way out of the black hole that you are in. 

Yes, you know well that I was there in the same hole, in the same city with the nearly same situation.

I will Not tell you that it gets better, I will not tell you to pray or to light candles or anything else...I will tell you that the hopelessness and depression are real and come from the fact that you do see no way out, no escape and no solution. 

(funny how I made the same comments about finally being skinny when my pouch was twisted and I could no longer eat! Your sense of humor is your savior)

First off you need a plan of attack nutrition-wise that is not costly nor impossible to follow...liquid supplements from Costco, GNC or Walmart can help a lot (they won't cure you but make things bearable). You need your B's and Iron (only take in liquid form and take with Vit C for best results) to keep up your morale and calcium/mag/zinc/D to get your sleep cycle working. 

Try only eating whole grain breads, cakes, pastries, pasta etc because they bulk up better and give you a better chance of getting the nutrients faster. 

Your blender is your friend. If you can pre-blend any foods you gain one step in the digestive process and can absorb that much quicker before things shoot out of you.

Write to the vitamin companies and Laboratories and ask for free samples of everything. Make friends with the salesperson at GNC, they discount to nothing their 'almost expired' vitamins a month before expiry...which means that they are still good for over a year but much, much cheaper...I had one lady who would put them aside for me and give me a call...very sweet.

Meat juices, bone broth, any soups that are rich and thick with toasted whole grain breads will give you a boost. 

Salt, right now, is your friend but you need potassium to balance things out. Bananas, pickles, tomatoes, potatoes are all your friend...They help keep your electrolytes balanced and keep the water in your body.

PM me if you want more and if worse case senario, call me...I will call back.

Hugs from way too far away

Sharon

 

Eric,

My heart goes out to you, I feel so very sad for you and hope the return of your Dr. has helped?

Trying not to be negative, but, sometimes it doesn’t matter what we eat or even if we can not eat almost anything, it won’t work.You probably have tried everything possible.

Drs. Can’t do it all and I believe they just give up if they can’t help us. Even the best of them.Try as the may.

My prayer for you is that you have loved ones around you that haven’t given up on you and will stick by and be with you through this crisis. Feeling alone is so awful, even talking to an understanding stranger can help you. I’ve had cleaning personnel in hospital that were lifesavers to me.

Please folks, sometimes we just need someone to hug us , not say You got this.Just some empathy and being there🤗❤️

Sending you love Eric

Jan

 

 

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