Critical condition -- PLEASE HELP ME

Sorry for the delayed reply... it is so hard to muster the strength and focus for anything right now. I am so strung out from pain and pain killers.

The more I ask for TPN, the more the doctors get annoyed with me. For some reason they just don't want to do it. I don't know if it's a resource thing (public health care) or they genuinely don't think it's a good idea. When I complained about the Boost causing problems, the GI doc said "There's no evidence it would make your IBD worse". I am dealing with some real numbskulls here. The head surgeon is the best in my city for colectomy / j-pouch, but the GI team is just horrible. There's one main team in the whole city and so their word is god.

I don't feel I'm gaining weight. The energy shakes they give me go in one end and out the other, with more bleeding and inflammation. So I have had to stop them myself and ask my family and friends to bring me food daily. Everyone is pitching in to make me safe meals because they don't want me to die. The hospital acts oblivious as to the fact I am completely ignoring their meals... it doesn't concern them that I may or may not be eating, and that I'm relying 100% on outside food?

Eating is torture. I just don't want to. The second I eat, the left sided pain starts and the crapting. I am often crapting in bed at the same time as eating. My rectum is completely prolapsed so I am completely incontinent. When it comes, it comes.

NSSG and iPoop, you may be right. I should just get the colectomy and then decide what to do later, just to end this UC hell. NSSG, I know the downsides of the BCIR, but I'd much rather it. I don't want a j-pouch. I don't want to be reconnected. But I also don't want a bag long-term, so the BCIR is the best choice. Carrying a catheter is no big deal to me. I'd rather carry that than all the supplies for an ostomy bag. The BCIR has a natural seal so there's no leakage, and no hindrances to wearing clothing or sports activities. Of course, pouchitis is still a concern. The thing is, if I decide on the BCIR, they would do the entire thing in one surgery. Part of my objective here is to avoid multiple surgeries, that's why I don't want the j-pouch. I want this hell to be behind me with as little cutting as possible.

I spoke to 2 hospital dieticians. They were total ditzes, I'm sorry to say. They gave me all these sheets of paper detailing how many calories and of what type I need every single day. Like "Make sure you get X grams of protein no matter what". It's like they had no concept that I can barely eat right now. They said, "Since you're on prednisone, you need to take lots of calcium". These people were robots. They didn't help me come up with a real diet plan at all, they just recited RDAs for vitamins and nutrients at me. Totally useless.

They gave me IV antibiotics on the fourth day... clonidine. My bleeding increases significantly and I was in screaming pain by morning. So they stopped the drip. My stool tests are negative for everything. I am afraid of getting c. diff from being in this GI ward though.

In case you haven't noticed yet from everything I've written, GI health care where I live is HORRIBLE.

They won't give me TPN so I don't know what the future holds. It just seems like a never ending vicious cycle of torture right now. Last night when I was alone I was looking out the 9th floor window and I wished to god the windows could open. I'd be out of here in a split second. I'm sorry if that's scary to read but that's how bad things are right now. I feel like I'm not getting the real help I need and I am surrounded by doctors who are total idiots.

Yesterday my left arm went completely numb and I couldn't use it. The on call doctor suspected a blood clot. They give me dalteparin by injection every morning now, and within a half hour of it I start bleeding more. There's just no winning. I hate my life. I want it to end.

I will try to keep updating. The wifi here at the hospital is good but I'm not often lucid enough to really get online and write like this.

I hate to see you feeling this way. I wish I could swing by and see you. I really don't think you should make any decisions based on number of surgeries, yes, they do suck, but one more isn't the end of the world. I am very happy with my life with my jpouch. I am very active and healthy now. I can't promise you anything, but I can tell you things have turned around for me in a way I could only dream of from my UC days. I hate to think of you feeling so desperate that you feel there is no hope. There is hope.

I also hate that you feel like the practitioners that you currently have are the only ones available to you... I wish you had an open door with many options. I think you need to get healthy and make decisions when things aren't so desperate, which basically means what I said before with your condition unfortunately, collectomy if necessary, and move on when you're ready. Of course, one and done is also a nice idea, but is a BCIR one step? I do not know, as I never researched it, but I do think if you had the first step, the collectomy, it would get you healthy and give you a chance to see what you're dealing with, and move on from there. It's a difficult step because it feels like you're still far from your ultimate goal, whatever it is, but it's actually a huge step because you're committed to changing your situation for good. Things happen quickly from there anyway. So whether it's a perm ileo, or a bcir, or a jpouch, you get there within a year if you want to. No reason to make decisions. If you don't like the team you're workig with though, that's a bigger issue, and you need to figure out how to get healthy and move forward.

Chiron,

I concur with the suggestion of just having the most straight forward surgery. Get that diseased colon the hell out of you. Worry about what set up you want after you're healed up. Just know that there is a great life after surgery! Hang tough. We'll be praying for you.

Oh wow, good you refused the s-scope!

Are your bloods OK?

q

I shuddered a bit reading your posts.
Had a similar situation...was in intensive care for a week. Then got transferred to the ward.
Doctor came in with a jug of prep to drink, said they had colonoscopy scheduled for later that afternoon!
I could barely sit up, and couldn't argue much. I managed to pour most of the muck into an empty drink bottle and drop it in the bin.
Honestly, all I wanted at that point was to get the anaesthetic for the colonoscopy...

They did put me on TPN afterwards. There is a risk the line can get infected, but it's nuts not to give you complete bowel rest at this point.

Yeah hang in there, and a way will be there for you. Try not to worry as you have limited control.

Wish you well.

Can you get to another hospital? I was in the same (sort of) situation when I was first diagnosed, except not nearly as sick as you are. My city didn't have any good GIs at the time, all the hospital had was a team of travelling GIs who came and went and the same with their "hospitalists". After a week of doing nothing for me except not allowing food and trying to slow the diarrhea with lomotril, I checked myself out and went to another city which was an hour away. I would really encourage your parents to look into getting you to another hospital or GI team. Good Lord, enough if enough!

This is frustrating. I get that the risks of TPN aren't zero, but if you are not a suitable candidate for total bowel rest, then I wonder who is.

Are your hospital weighing you regularly? Since being admitted, have you gained or lost any weight or has it stayed the same? As far as I can make out, you've been in for a couple of weeks already - if you're not gaining any weight, then how long do they expect you to remain like this for? (Obviously, if you *are* gaining, then - however torturously and painfully - the Ensures and food being brought in by family and friends are working as they should.)

I've been trying to find information on TPN in IBD patients. I found this 2013 abstract (I can't access the full article):
The role of total parenteral nutrion in inflammatory bowel disease: current aspects

The interesting part is the last line: TPN might be associated with an increased risk of adverse events, although TPN undertaken by experienced teams does not cause more complications than does EN.

Key word is "experienced" of course.

There's also this 2015 review:
Perioperative Parenteral Nutrition in Adults with Inflammatory Bowel Disease

The full article is accessible this time, but I'm afraid I haven't read it yet, as I need a break now. I can read it later on though.

Are you talking about Modulen ? I know someone who told me he was flaring a lot (but less than you, he didn't need to go to the hospital) and had big improvement after taking only this for 15 days.

Could someone please answer my question about the lactase?

Can lactase pills (for lactose intolerant people who can't digest lactose) prevent the irritation that dairy usually causes me, so that I can drink milk-based meal replacement shakes?

I am skin and bones, the hospital still won't give me TPN, and the liquids I've been making (like broths) are leaving me starving. I need to get on meal replacement shakes ASAP but they all have milk in them, and I can't do the soy ones.

I don’t know if lactase will help or not, but what have you got to lose? You could also try some fairly free meal replacement drinks, orgain has always been easy on my gut when flaring. Amazon sells it, both powdered and ready to drink. It isn’t perfect but has a lot less crap than boost. Hang in there!

or rice drink mixed with banana porridge

I am sorry to hear of your situation and feel you completely as I was In very similar boat years ago when I was 1st diagnosed. I got incredibly unwell from a flare and spent 2 weeks in the hospital during the particular flare. I lost untolds amount of weight and i'm a slim athletic guy as it is, so I didn't have loads of weight to lose. The pain was unbearable at times in my stomach area, in which I nearly vomited a few times from
It, due to the pain.

I was on the toilet 20/30 times a day. I couldn't eat and I lost all my self confidence. I was incredibly down in hospital, as I lead such an active and great social life with my partner, but felt helpless laying there in a bed with no strength. I had family, friends and my partner to support me, but when you are that unwell, you feel very vulnerable and alone. I was on introvine steroids through the veins for weeks and eventually on Cyclosporine as the flare that was that bad. I was pretty much on the border line of emergency surgery if the cyclosporine didn't work. Thankfully, I eventually got better and come out that horrid flare. It took me a while to gain my strength back and resume normality, but I eventually was in remission for 6 years. Since then, I have been getting the odd on and off flare, nothing like my 1st flare. I'm currently in remission now with no symptoms. There is light at the end of the tunnel I promise.

Post Edited (Tblock1985) : 5/13/2018 5:30:26 PM (GMT-6)

In answer to the lactase pills, I think it depends on what you are reacting to in the milk. I have had issues with milk that lactose aids dont touch. Enzymedica makes a digestive aid that is pretty powerful, and they also make one that targets milk. Vega makes a protein powder that is soy free, milk free, and gluten free. I don't have issues with soy, but have issues with milk and gluten. Even when flaring the Vega seemed pretty easy on my system. I don't know where you are, but Costco carries this product, and you can order it on Amazon.