what do I do and where do I go?

Hi RoseMary:
Parental nutrition is not an easy or quick fix. The "chemical cocktail" can be extremely stressful on the pancreas, liver, and endocrine system in general. TPN induced diabetes is not uncommon nor is pancreatitis . . . so the reservations on placing you on TPN are not unfounded.

I was on parental nutrition and chose to deselect from it.

Due to small intestine dysmotility post-ileostomy I subsist on a liquid diet. Granted, I can usually tolerate a full-liquid diet (strained soups; yogurt) in addition to clear liquids. I add a bit of vegan whey protein powder for protein, use a liquid multi-vitamin, and select organic products to minimize additives. My point: A calorie is a calorie (although some have more nutritional benefit than others).

I am very petite. about 80 pounds - granted I have a small bone frame. Not ideal but I am actually fairly functional.

Of course, parental nutrition may be what you need/want . . simply to give yourself a needed respite from the difficulties you are experiencing. Quality of life and what a person needs (mentally, physically, spiritually) in a given moment of his/her "journey" are real and valid.

My humble suggestion is that you select and stay with one medical team/facility/provider. Although I understand that you feel abandoned in your care, changing providers multiple times is also less than ideal. Is there a provider/facility that you think of more highly than the others that might be worth going back to? In the long run, consistency of care and a consistent provider might give you the best chance of reclaiming your health. Some health issues do not have a "fix" and require perseverance of effort - from both the medical providers and the patient.

You and your life are worth it. All that any of us have is this day.

I hope that your day today is a tad better than your day yesterday.

I think there really is no chance that even a revision with move of stoma to other side will even work due to all my gut scarring and that nobody really dares do anything and that I am being postponed until I die, then nobodyu will have to do anything and it will be chalked off as I starved myself intentionally. So unfair. But I think that is what is going on. I cannot return home until I have some "go to" person there. I have no quality of life as I can hardly walk diwn the street I am so weak. I wish I could do full liquids like you do but whatever I take in has to fit thru this tiny tube coming out of the stoma that does not work. They told me the risks of tpn but what do I do as alternative starve? Which is what is happening? I so wis I could eat what you do. Thx for response and well wishes. If you have other ideas I am open. I do not mean to sound close minded. Iut west had no long range plan. Here has a plan ut so long into future I won't survive. So what to do? EsoR

I've never had the high calorie ensure, but I have had the regular kind and drinks mixed with protein powder, those are pure liquid. There is nothing in them that wouldn't fit through a drain tube. Why will those not go through? Like seashell just mentioned dark chocloate will melt in your mouth, there are some vitamins that do that also, that could help you a little. If you really don't think the ensure will pass have you tried pedialyte its a clear liquid. Will skim milk pass though, its just as thin as water.

Sue who is the lysis surgeon on florida? And does he do stoma revisions? Does ghe avoid electrocautery that can actually cause adhesions? Can you email me his name or say on here?

I just got crazy and tried some skim milk as that calcium liquid is way too thick and the pills do not dissolve. It says 0 fiber. And is as thin as water. I have to get some calcium into me.

Love the dark choicolate idea! Keep the ideas and suggestions coming. Esp the diet tips and lysis surgeon. I also had a clear ensure and some avacado oil. Less dense than olive oil. I have to gains oem weight. My PCP already refused to deal at all with this. Gotta find one but nobody else ariund where I live.
RJ

Am in a hotel but maybe could get a juicer. It is the consistency of water the result? Auugh! I gotta get one.

I had a skim milk today and some Naked mango puree. Went for a walk and have lost so much energy. So praying that I can stay strong enough for a stoma reloctaion. Need to stay away from electrocautery and only have sharp dissection of adhesions am doing a lot of research and multiple docs have said electrocautery not the best for adhesion formers. Yep I still have some spunk. But jeesh! I know I cannot last 6 months. Maybe three. I am going to call aroubd for some oither consults in the a.m. Wish I could get that juicer and get going with that. I do take liquuid centrum. Which is good. I gotta get more of that. Good idea about straining the Naked veggie juice thru a coffee filter. RJ

Wow! A juice bar? Would whole foods have this?

RJ

oh and i know this is really really gross, but my husband got really really really sick years ago and lots a lot of weight really really fast, so his mom literally had him eat butter. So you could melt butter down and drink it. It probably wouldn't taste very good but it does have calcium and a lot of calories.

Rosemary, I am do sorry to hear you are STILL having issues! God I wish my surgeon was around, I have NO doubt he could/would help you. But alas, he is also in the military and overseas for another 6 months! So, I can understand with the waiting part..although not to the extent you are.. you poor thing! What city are you in now? I know you said East...hope all gets better soon. lots of hugs and prayers <3

Came home! trying the high cal boosts and a nutritionist friend is trying her best to help.

I did make a contact back in Mass. a colorectal surgeon I had not previously consulted. Appt. end of Jan. Sent a 2 page summary of my issue of third revision, non peristaltic stoma, needed drain tube, having to live on liquid, they said come to appt end of Jan. prepared to be admitted and started on TPN. I had faxed some questions such as how long is the wait time and would the new stoma be done on the other side and so on. No answers, but in-patient for TPN port and start then transfer back home for TPN.

Not know if I should keep a GI appt hour round trip each way now for tomorrow or not. Or just call and ask if this is what they would advise too. I am just so weak. I have someone who would drive me but, I figure why go if they can tell me their "vote" over the phone. I may just call in the a/m/ I have hired care workers 24/7 and am sure hoping none of them are coming down with anything and do not know it. Scary!!!

what would you all do? Has anyone gotten TPN then been sent home on it. How would you go about getting the rest of the questions answered by the doc who is offering the TPN. AM THRILLED to have the offer, but I need details. Rosemary