Critical condition -- PLEASE HELP ME

I'm in the ICU in serious shape and I need some advice as well as reassurance. I am so scared and strung out. I've wanted to write to HW for over a week but this it the first day when I've had the energy and alertness to do so.

Surgery is impending for me, but because I am a skeleton the surgery team has said I need to gain some weight before they can proceed. My entire body has atrophied from 24/7 pain, diarrhea and an inability to eat. This has been a month long nightmare. I am really, really scary looking. Even the nurses are put off.

I have requested the BCIR / K-pouch. They discussed the J pouch with me but I don't want 3 surgeries, and I don't want to be reconnected. I don't want to deal with a rectum anymore, or any of it. When this is done, it's done. The past 5 years of experiencing a severely diseased bowel and rectum has put me off. I want zero chance of this ever happening again -- zero. I also don't want an ostomy bag, so the BCIR is a good compromise.

Right now they are trying to get my weight back up with Boosts and Ensures, but eating is paifnul. These shakes have horrible ingredients including dairy and high fructose corn syrup which I'm allergic to. I requested TPN but because I am so horrendously underweight, they believe the infection risk is too high.

Seriously... you can see every bone in my body. I can't walk because my legs have no tissue. I just sit in bed crapping myself all day. It's horrible. I've also become addicted to morphine, which barely touches the pain anymore.

The hospital also has me on suicide watch. I am in so much pain that I will do anything to escape. I just want this nightmare organ out of me. I need this to be over. I feel so pathetic for sinking this low but I have been in 10/10 pain for over a month with little support. My spirit has been totally destroyed. My parents are here now so that helps but they watch helplessly as I scream and writhe and beg for someone to put me out of my misery.

For people who had surgery... is the colitis pain gone right after surgery? Can I look forward to immediate relief? Please, I need to know. I need to know that this torment can end. I am so sad that I have to wait for surgery, but they are convinced I won't survive without some weight gain, so I am stuck in limbo. If I wake up and don't feel the cramping, the stabbing, the squeezing and the pushing in my guts, that itself will make it worth it. I told them I don't care if I die in surgery, I want to take the risk. I don't want to wait any longer... but they seem overly concerned about their liability. Should I get a second opinion?

The Boost shakes make my diarrhea worse, but the hospital staff don't seem to care. A dietician came to see me and she didn't really listen either. My gut is so ripped up that I can't tolerate most foods, even simple things like the BRAT diet. I mean the shakes TASTE good but if they increase my diarrhea then am I really benefiting?

I don't know what I'm doing. I don't know what to ask for or how to get surgery sooner. PLEASE HELP ME!

My heart aches for you! Can you ask for chicken broth and rice? I too can’t take all the sugar in ensure or boost. Have they tried antibiotics for you?

I will say a prayer for you and that the pain is controlled and goes way. I hope you recover and get strong and well soon!

When I was underweight because of UC, I was able to talk to a nutritionist. PLEASE REQUEST ONE!!!

I was able to request one over the phone through my insurance company. My nutritionist recommended I eat white bread, potatoes, rice. She also recommends high-fat foods like avocado, salmon. These foods are low-residue. How about starchy foods? Peanut butter/cashew butter?

Japanese curry makes me pretty fat, and it's really delicious. So I would try getting your parents to stop by an Asian supermarket and get one of these (they may also sell it at your local grocery)

I had the same issues with Boost and Ensure, and no one in the market makes nutrition shakes without dairy. The only thing I could find was Vega and other plant-based protein shakes. (Be careful about the sugar content in these.) Some are sold as powder, and some are sold as shakes. You can find some decent plant protein shakes and powders at Costco.

Please try edibles for the pain. It really helped me with pain. Try pot/marijuana brownies or candies. It definitely will not hurt. (This is coming from someone that actually HATES pot!) I have heard about Kava, but have not tried it. But they sell Kava pills and powders on Amazon.

Please keep us updated. I am truly concerned.

I have no advice on surgery but I just wanted to write and say I’m truly wishing you well. I hope you get some positive news in the next day or so. Please try and keep your spirits up. Hopefully it will all be better soon. Stay strong.. xx

Hello:

I am very sorry that you are suffering so much.
Please don't loose hope and don't give up, life is precious even though it doesn't see like it at the moment. You might be is such bad pain because you keep eating things that contain dairy, wheat.

Please don't drink the shakes they give you if you can't take dairy, that will make it worst. See if there is any food you can have.
You may have to avoid wheat dairy and other things.
Can you have soy?
Maybe you can have tofu shakes or protein (soy) shakes
Cooked potatoes, white rice, maybe yams, some coconut oil and or olive oil, avocados, applesauce. See what you can eat and keep eating it until you gain some weight.
I hope they can reduce the morphine also.
If you are better try Qing Dai (indigo naturalis) it has helped my daughter a lot. It is a powder (I got it from Atlanta Acupuncture and I make capsules with the powder (1 or 2 caspsules) helps her to have more normal stools and no blood it reduces inflammation of the intestines.

Wishing you well!
I'll include you in my prayers.

Let me start off by saying how very very sorry about the situation you are in. Sending you love and healing thoughts. I know that is an overused saying but -- it truly hurts my heart to read your story!

I'm not sure if you've ever checked her out or not but there is a woman who wrote a few cook books called Against All Grain. I believe she has been in a similar situation to yours (maybe not as severe but she lost a TON of weight). She is an inspiration to me - and she has a recipe for a shake that she drinks when she is flaring that helps keep potassium up as well as get her proteins from a product that she promotes.

I started feeling terrible a couple of weeks ago and I started making these shakes and I will tell you that they made me feel better and they did not irritate my stomach at all.

8 ounces cashew milk (store-bought is ok, but homemade makes it much creamier)
2 scoops Vital Proteins Collagen Peptides
1 medium ripe banana
1 tablespoon cocoa powder
1 cup ice cubes
optional: 1/8 teaspoon organic stevia extract powder (100% stevia) or 2 teaspoons pure maple syrup*

The Vital Proteins are sold at health food stores and can be ordered online! But if you go to their website you can check if there is anywhere near you that sells it! Maybe your folks can get some for you and make the shakes and bring them to you and have the hospital refrigerate them? I know that may be challenging but I just wanted to at least suggest something that has worked for me as well as others! Also, if you can't tolerate bananas, try avocado!

Wishing you well and that you get your surgery and it makes you feel 100% better. <3

So sorry you are so ill! FYI both ensure and boost make “clear” supplements. They’re a little harder to find but Walmart has the ensure as do most of the chain drugstores. I’ve never seen the boost clear is the stores but I was able to get them In The hospital. They are fruit flavored and pretty tasty with about the same amount of protein and vitamins as the shakes. They do have sugar or a sweetener but at least they’re not dairy or soy based.

I agree with NCOT. Have they mentioned cyclosporine for rescue? You really need to get stronger so you can have surgery.

See if you can get ahold of these:

https://www.katefarms.com

My RD friend recommends these for people who have various allergies. Dairy/gluten/soy/nut/corn free.

Sorry to hear things are so rough. I'd insist on a TPN and/or emergency surgery earlier, I can't believe they are letting you suffer so. The ensure drink thing sounds rather asinine.

BCIR/K-pouch isn't all that common, why this? I'd just get your large intestine removed, and an end-ileo with appliance for now. Heal up, recover, and regain some quality of life and then decide what is next. Remove the problem organ and you'll have months to decide what's next for you regarding future surgeries. They'll biopsy the large intestine and study it further after removal to rule out crohn's. Keep the end-ileo and appliance if you're done with having a rectum and all the pain it brought.

I havent read through all the comments and not sure if someone already suggested this but I would recommend chicken broth. It works well for me.

I'd love an update too. I hope you're doing better.

I know everyone wants for no one to have surgery, and they will offer the eat rice, GF, licorice, spinach, or try whatever supplement, but the reality is, in some severe cases, surgery is likely coming down the pike, might as well move forward and put UC in the past. Hopefully that's not the case for you, but it was certainly the case for me. You will know when/if it becomes inevitable for you. It was an awful moment in my life when I accepted surgery as the answer but what can you do besides embrace whatever is to come? All these years, the GIs giving me the run around. What a waste of time and money. Looking back, I do wish I had surgery way back when things progressed. I spent all those years fighting for a colon that I ultimately lost, along with it, I lost all those years I could have been enjoying instead of being drugged up, sick and fighting. Mine culminated with septic shock and a breathing tube, and it seems like you're in a similar state. At a certain point, I realized anything would be better than facing that again.

iPoop is right, get the collectomy and decide what you want to do later. You can spend some time with an end ileo, get healthy, take a break from IBD, do your research, and decide without the pressure.

Don't rush into anything though, if you don't think surgery is inevitable, and you have the desire to fight, keep at it. All I know is that i am thankful to be done with that "sick" phase of my life. Of course, that's just one opinion, other people haven't been so lucky.

My heart is aching for the agony you are going through. Food in a hospital can be a serious issue, and it sounds like it has become dire for you. I hope your family can advocate for you/bring you things that you can do well on that isn't something you are allergic to.