I am feeling not so good. I can't get myself to drink fluids or eat a lot. Losing about 2 lbs a day. Night sweats are bad and I have chills. Home nurse said she sees no infection, I have minimal pain....
What's wrong with me? 6-week post-operation and worried!
Please contact your doctor ASAP and let him or her know your symptoms. Night sweats and rapid weight loss, and no desire to eat or drink, are serious signs.
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,368 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
Hi Joe,
If you're losing 2 lbs a day and not eating or drinking, you're dehydrating rapidly. That makes things worse. Call your doc and tell him/her you're heading to the ER. Then call the ER and tell them you're coming and you believe you are COVID-free. They'll test you anyway, but at least they won't panic when you walk in the door. They'll get an IV in you and get you some fluids while they figure out what's going on. The longer you wait there at home, the harder it will be for them to help you. I used to resist going to the ER all the time. I'd find myself on the floor somewhere blacked out from pain... and it was stupid. I will never do that again. I could have died, and my dog would have eaten me. Guess that would've lowered my funeral costs a bit.
But seriously, make the calls and then have someone drive you to the ER. Don't drive yourself. If you have no one to call, then call for an ambulance. You're playing with fire... and you know how the rest of that saying goes. We'll be waiting to hear back from you when they get it all sorted out.
Now get!
Bob
Joe,
If you're at home reading this, then either you're not under the medical care you need...or you're back home and all's better/well.
I wholeheartedly agree with the others: go to the ER now!
Truly hope I'm typing this while you're being diagnosed...
Please let us know how you're doing - when you can.
Lily17
I have to agree with the others, this sounds very serious. Like Bob said, "If you have no one to call, then call for an ambulance." Please keep us updated when you can. Best wishes.
Hello Joe.
It feels as if I am a bit late in replying to this post as lots of people have already given you the advice you need. I cannot understand why your home nurse did not refer you on immediately as these symptoms are often very serious and need immediate attention.
Here's hoping you are okay!
Best wishes
Bill
Bob,
Thanks for the input. My Dr. said he is setting me up with a nutritionist. I am not dehydrated and bloods are normal.
They have found nothing wrong except depression. No dehydration. Bloods normal. What can I say?
"They have found nothing wrong except depression. No dehydration. Bloods normal. What can I say?"
Hello Joe.
I'm so pleased to hear that they have not found anything drastically wrong on the physical front. However, if the diagnosis of depression is correct, this also needs to be treated just as seriously and addressed by you and the appropriate professonals.
I would suggest trying to get a referral to a psychologist or counsellor, unless you are very confident that you can deal with this constructively in your own way.
Best wishes
Bill
Bill, I have a psychologist I deal with. She has not been successful with any meds. All bad side effects. I don't know what to do. I forced down an egg sandwich this morning with about a cup of water and it didn't sit very well. Thanks for writing.
Joe
Joe, try just broths, then gradually go only soft. Sip slowly, lukewarm. I had to do that for months until my body adjusted again.
We are rooting for you, we've all been there. Only a few months after my surgery, my husband died. I was in the hospital again quickly as my body rejected everything, from stress. Just relax and take baby steps. Patience is needed a lot.
Ritz
My wife seems to feel I need to do more. Last night, she did laundry and left the clothes in the dryer overnight. I saw that this morning and emptied the dryer, took care of the dog, made her coffee. Then she says I sit around like a 90-year-old man. The thing with her is the more I force myself to do, the more she expects.
There is bacon in the fridge and also Philly cheese ing.
I don't have the energy to cook this stuff. What am I supposed to do? Then I wake up with my ostomy bag with liquid in it, and I never dealt with that before, so I left it. I am a mess.
Joe, you are very lucky to have a wife that cares about your well-being. Your schedule should be empty or change your bag, take a pain pill, wash up, shower, eat, then walk around your house doing light duties. Then rest. After surgery, my doctors would always say move, it helps in the healing process.
I do what I can but I can't prepare dinner.
I just don't have the stamina yet. I cleaned out the bag, ate a yogurt and that's it. Better than not doing anything at all.
Hi, Joe.
Good news that there's nothing physically worrisome - it's just that your body is still responding to your new ostomy and to depression. So glad you saw a physician!
Now that you're home, you can focus on your healing and improving your mental state.
Others on this site are giving you great opinions, and I'd like to chime in:
Seriously consider continuing to see your counselor/psychiatrist. Ask about "alternative", non-prescriptive supplements to help with your depression, and its effects. There are over-the-counter (OTC) herbal supplements & teas - even foods that can help combat depression. (In that same vein, there are some foods that should be avoided.) Light activity can help the body and mind. Ask your counselor about helpful at-home mental activities: journaling, reading, puzzles (jigsaw, crosswords, etc.), explore different types of creative artwork or hand crafts that can redirect your mental energies and focus. Even listening to various types of music can improve one's mood.
If your counselor is averse to non-prescriptive OTCs, and insists on further exploration of prescriptive remedies which may have unwanted side effects...? I would consider seeing another mental health professional with "more tools in their toolbox" - more modalities to help alleviate depression. There are "light boxes", dietary changes, biofeedback, OTCs, hypnotherapy, meditation, stress-reduction techniques, etc. that may be worth investigating. The National Alliance on Mental Illness (NAMI) is a wonderful resource, also. www.nami.org
If you do decide on OTC supplements, please consult with your psychiatrist, general physician and/or pharmacist to help ensure that there will be no harmful interactions between any OTCs and current prescriptions. ("Time-release" supplements - prescription or OTC - may need to be avoided; with a shortened GI tract, now, waiting for a substance to be released into your system will probably mean most of the substance ending up in your ostomy appliance, wasted.)
Bone broth is a light, but nutritious option when the GI tract, stomach is sensitive. Ritz is right: warm it, and SIP it. Your small intestine is likely still adjusting to its new duty of taking in more fluids. Sipping (almost all non-caffeinated) liquids throughout the day will give your stomach and small intestine more time to take in fluids for rehydration. On the other hand, gulping will pretty much just wash fluids through to your bag. Your GI tract needs time to adjust, so please be patient with it.
Easily digested foods may be a good idea at this time since your stomach is unsettled. The bone broth, soft-cooked eggs, low-fiber foods like white toast, white rice, chamomile tea, low-acid juices and soft fruits...? Anything your stomach can tolerate will be good. Reintroduce questionable foods slowly into your diet.
Your body is going through a lot right now, Joe. Light activity interspersed with rest throughout the day is a great idea. Slowly build up your activity over time. You're fatigued, and depressed, but a little activity will help both. Your energy levels and stamina may be low, and that's to be expected considering how much healing your body is doing - and that takes a lot of energy.
Joe, you're fortunate to have some support at home. When it comes to your wife and her expectations... You know your wife and both of your personalities & tolerances better than anyone. No one heals from traumatic surgery at the same rate. If a joint appointment for you both is needed with your counselor/psychiatrist, and/or your surgeon to help impress upon her your need for rest during your recovery, consider it. Too much activity during recovery can be detrimental, and a hospital is to be avoided, if at all possible, during this pandemic.
Each of us ostomates has had our challenges pre- and/or post-recovery. Take it slow, be smart about your choices, see your medical team when you need to (don't wait on a homecare nurse's approval - you know when something is not right with your body!), and continue communicating with the MAO membership. By now, you certainly know that there are many caring souls in the MAO community with experience able to offer helpful advice, tips and support.
Take it one day at a time, Joe. And let us know how you're doing. Ostomy recovery can be a long haul, but it's not a trip you have to make alone.
Lily17
Hi Lily and thanks for the post. There is one med that worked for me years ago. At lower doses, it promotes sleep and appetite, and at higher doses, it has an antidepressant effect. I spoke with her and she is phoning in a script for it. We are also going to do virtual therapy on the computer. Still gonna work with the nutritionist as well. Everybody has been so helpful here. Makes me feel good but I still can't figure out dinner. I can make Philly cheese sandwiches and I also have bacon, but I have no ambition to do this. Had tomato soup for lunch with crackers and it didn't sit super but it is something...
I will stay in touch
Joe
Joe, have you thought about breakfast for dinner? Something like scrambled eggs & toast, or French toast? A rice-based cereal (Rice Chex, etc.). Can you order food in? Do you have milder canned soups in your pantry, with saltines or Ritz Crackers, lightly buttered toast? Perhaps buttered noodles/pasta with a little white meat chicken?
Stay hydrated, and think about your options for nutrition.
Does your area have something like InstaCart - a grocery delivery service? GrubHub, DoorDash or other restaurant/food delivery options?
The body can live longer without food than water, but when you're healing from surgery, trying to increase muscle, strength & stamina, food's a must.
Lily17
Hey Lily,
We live back up in the woods. No delivery or Instacart here. We have had breakfast for dinner a lot before surgery, but cereal and eggs can be funny at night. I can wake up with an overfull bag, and it isn't pretty. Pizza does the same thing. I am going to see if my wife will stop on the way home for burgers or something. I did drink about 22 ounces of water today, which is a plus. We will see. I am hungry, and that's a good sign.
Joe
Joe
Hungry is good! Just go easy: the tomato soup response is telling. Maybe too much acid on the stomach? Early on after an ostomy, high-liquid diet, high-fiber can move quickly into the appliance.
Make sure you chew each mouthful almost into a paste before swallowing to prevent painful blockages - that can send an ostomate to the hospital. (That's where my first blockage landed me, as the pains and sudden nausea left me wondering if I was having a heart attack.)
Lily17
I had some bad pains last night that scared me. I have been on all carbs and I guess the ostomy clogged up a bit, but once it passed, oh man was that bag full. I will chew my burgers well!
Joe
Very important: Sip liquids while you eat, in between bites, to help prevent blockages. I have found that simple, processed, low-fiber carbs - white bread products, plain crackers, cake, cookies, etc. - can create a very sticky output that can not only contribute to blockages, but also be more difficult to rinse/empty out of the appliance. Add a little fiber and/or liquid while consuming these. The same goes for nut butters, Nutella, other sticky pastes, and paste-like foods.
One thing at a time! )
Lily17
Joe ... let your loving wife know as well ... this recovery takes time and patience. You'll be better off if you do. The wash can wait, the bacon you can eat next month (the grocers have plenty). I still eat differently than I did before and my favorites are no longer, but geez, I feel good and that puts me in a happy place. Trust us, you'll achieve mind and body in a great place and you're alive. I try not to eat past 4 pm, then I only have to awaken once to empty my bag. I actually set an alarm. I drink tons of water ... at least a gallon a day, I need water more than food. I only eat cause I know I need to.
Stay positive! Ritz.
Ritz,
My wife is in the healthcare field and knows all too well the recovery time for this huge operation. She is always in touch with my doctors and monitors my progress. She actually changes my bag. I do the emptying, but she does a much better job of changing it although I too can do it. We work this like a team. I ate REAL FOOD last night. 2 burgers....They made me so thirsty I drank a liter of water and slept like a baby.
I want to thank all of your input here. Everybody has made a positive impact on me. Thank you!!!!!
Joe Cal
Joe,
I am late in chiming in but you have had the best advice there is and it sounds as if you have listened to those that know what you are going through. Another Ostomate!
So glad to hear you are back on track to a full recovery.
Best wishes,
Puppyluv
Puppyluv
Not doing as good as you think. I am losing weight and not drinking again. We had a snowstorm and not much food in the house. Stoma hasn't put anything out in 4 days except gas. I am losing my will to go on. I don't see a happy future anymore. Take care of yourself
Joe
I am sorry, Joe. We have all been there, and I think part of the acceptance process. We all have those days on occasion.
Your wife works, so I assume she does the grocery shopping as well? Do you have children that are able to help you? Maybe make a list of foods you think you can prepare easily and you will actually eat! That may help your wife to get you the things you can fix instead of the things that may overwhelm you. It is easier to eat the things you love, so take advantage and get the yummy stuff you love!
If you are not eating or drinking, I imagine what is in your colon is pretty solid by now. You may want to try some Citrucel, it comes in orange that is not so bad! Drinking is the key to it all, I think. I do not care for water, but I add the flavor packets to my water and can drink it all day long! You may even want to purchase some food supplements like Ensure or protein drinks. You need those vitamins, however you take them.
Motion is lotion! That is what my doctors have always told me! It can be painful, but in the long run, it will build your muscles, strength, and stamina and your mental health. It is a slow process, but if you set your mind to it, you can achieve success!
There are better days ahead! You just have to get through these bumpy days to see them, and you will!
We are all pulling for you!
Puppy