I have been so I'll for so long. I'm truly giving up. My doctors, over the last few years have found issues with me, but none of them talk to each other and I'm getting weaker. I have been taking ondedestron since October. As I vomit without and sometimes while taking it. When I don't take the meds, I start the whole vomiting cycle again. It's quite painful and I'm so tired of being sick. Symptoms are extreme nausea and vomiting. diahrrea (can be 15 to 20 episodes per day). the anti nausea help to alleviate the Diaharrea. But, I was diagnosed with colitis in ER. the problem is, I know I have IBD, Fatty Liver Disease, 2 hiatial hernias (1 my stomach going into my mediastam and the other below my liver) degenerative disc disease, GERD, pressure in eyes, migraines, fever, high wbc for over 3 years, chronic illnesses random. so exhausted, chronic low potassium, low calcium, pain is unbelievable. just so freaking sick. I see my doctor again on the 7th. but I'm not excited because I'm sure I will get the same old response. Let's run a million tests, that aren't definitive. I'm too tired to continue testing. I can't get up and go anymore. My home looks like a hospital. I have absolutely no life. I sleep, puke and have diaharrea. My goal when I wake up, is let's see how long it takes to drink a glass a water with my anti nausea. Could be a 3 hour event. I might throw up the first 3 sips or the other. After research, I'm thinking Crohns Disease? not sure how to get the doctor to treat me for that and I know I'm leaving a lot out, but there's simply too much to go over. How do you get a doctor to nail down a diagnosis and connect the dots? I'm thinking Lupus, Crohn's, Crohn's and Ulcerative Colitis, Cancer or anything else that is killing me. I truly feel that if I don't get some treatment soon, and the doc keeps forgetting to refill my script. I won't be alive much longer. How do i get them to help me? If they can't help on the 7th, which state is assisted suicide legal in? and how much does it cost? does anyone know or have information about it?
You need to be hospitalized.
Agree
A&E Vomit in the waiting room and push some answers as you are having a very low quality of life it seems
What do you eat in your routine? Do you drink and smoke too?
Did you go through endoscopy to know the chances of any bacterial infection?
when I can eat, I start with a couple saltine crackers. Baby food licks throughout the day. I drink pedialight to help keep myself alive. if my heart starts acting up or I get too weak, I take potassium. it’s a delicate balance.
Smoke, yes I smoke. everyone sighs when I tell them that and they have this persona, like there’s the reason, attitude. how about let’s figure out why all the puking and diharrea. Let’s pretend I don’t smoke and figure this out. My irritable bowel issue has been a life long event. progressively getting worse.
Hysterectomy at 28 due to cysts, endometriosis, etc. I had 3 prior surgeries to remove large cysts.
16 had my appendectomy, ruptured.
40 My gall bladder removed, 42 tonsilectomy due to mono blew holes in my tonsils. they were very enlarged and full of infection.
issues with cysts my whole life. Also kidney stones every year. Why? no one can tell me. There is an underlying reason. What is it?
I can relate, I became unwell at the age of 16 with diseases that just spiralled upon themselves.
Some backstory, I originally got diagnosed with lymphocytic enteritis, an untreatable form of microscopic IBD, this then caused me to become intolerant towards 8 different types of sugars. After almost a year of misdiagnosis I had developed Chronic Fatigue Syndrome, which has a lower QoL score than most mental disorders including depression and a lower QoL score than colon cancer, with a low chance of complete recovery and takes around 6 years of strict therapy and life management. Further on I developed GERD, Hyperthyroidism, Chronic sleep deprivation, Chronic dehydration, B12 defiency, Insomnia, Tendonitis of the knee and a complex cyst in my primary hands joint.
I did not take one pain killer or pharmaceutical besides vitamins. I approached the battle far differently, pain is all in the mind as goes the saying, if you are capable of winning the mental battle then you’ll always end up on top, no matter the obstacle, it might not cure the issue, but sure does help. I also approached a variety of pseudo medicines.
Past all of this I ended up completing a degree in psychology, due to my developed passion of the mind from using it as a tool to battle illness.
My functionality a year in was 6 hours awake a day, less than one out of bed for an entire year. Whilst needing the toilet for violent diarrhea over 15 times a day, with chronic bone and muscle pain while also suffering a variety of neurological problems such as severe memory problems.
As soon as I understood how unwell I was I started specific self reinforcing notions. Simple things, no matter how bad the day was I would tell myself I am going to get better, I am going to make a good future for myself, the weather is nice, etc. I would read as often as I was feeling capable, read anything, learn something, watch something. One of the worst things you can do is tell yourself how much you hate everything and only occupy your time with thinking about how bad everything is.
Besides the mental game, there are some key aspects to take on when navigating the medical system. If you want something you demand it, specialists should be your go to. MRI will almost always guarantee results, though rather costly. Ask the doctors about alternate options, tell them how you feel and don’t let them condescend you. Pseudomedicine can be good, just research that it isn’t entirely harmful or a scam before hand. If time is of the essence the consider private health.
I am lucky to have such doctors, I went to a VPRS rehabilitation clinic which helped my CFS and life in general. My endocrinologist was very helpful with managing my thyroid problem , however the IBD I have was untreatable and incurable, thus I seeked pseudo medicine and now get Diarrhea less than once a day.
Essentially your approach should be maintaining a healthy mental attitude, if not in yourself, seek a psychologist ASAP. Lots of doctors have no idea and you should be assertive and questioning rather than just being a yes person. Pharmaceuticals are ideological a trap because they aren’t made to cure, only treat the symptoms, seek healthier methods where possible. Don’t internet diagnose yourself, however do question your doctor on your queries. If you aren’t getting proper treatment request a specialist/ a new one. Pseudo medicines can partially help.
If you really feel like you’re dying, hospitalise yourself, go to ER and explain your symptoms, they get quick results.
If you have time seek a psychologist, they help even if you don’t have a mental problem
I had a whole paediatric team working on me when I was in the age category from the royal children’s hospital of Melbourne. Then a new team of specialists upon adult hood. At a rough estimate I had 5 specialists and a GP I had to see regularly, so probably since the start I have been to see a doctor at least 150 times in 4 going on 5 years and still countibg. Get used to it if you wish to get better, which you should, because giving up does not do anyone good.
EDIT; about your Crohns, it has a simple inflammatory marker test and almost always shows in a complete colonoscopy + gastroscopy. The symptoms for many are the same as colitis, however people often to get eye problems and a few other token symptoms.
Lester,
I have been in the hospital several times in the last year. I start feeling better, then I’m home for a couple of months and the whole cycle starts again.
frankly I’m scared to death to go. My last ER trip, the nurse basically pushed potassium and it felt like acid straight to my heart.
my week long stay before that, they gave me laxative, then tried to hook me up to the leg things. I’m like, no. your not giving me laxatives and chaining me to the bed. I was made to feel bad before, they don’t give out adult diapers anymore.
then the time before that, a nurse poked herself with my used needle. causing for and extra sick for the day and more blood drawn.
I just feel like my life is in the hands of a bunch of incompetent people. I’m scared to death.
thank you for your heart felt response. I will definitely look into a psychologist, as my depression is bad at this point. Being sick for so long and no answers and fighting for anti nausea really wears you down.
I have never been a fan of pharmaceutical drugs, it’s not for me. My system is so sensitive, if a drug has 12 side effects, I suffer 11.
My triglicerides is usually between 2300 to 2600 and the meds I was taking 3 years for that lowered my levels slightly. lowest was around 2000. I feel like my IQ points dropped 30 points.
lost vision in my right eye. losing vision in left eye, reading is tough.
but your right, I’ve always been a fighter…i will keep y’all posted.
It’s sad to hear your problems.
But stopping to smoke may not add to your problems, if it really not related to it.
Your life will become more hell if later you find out that you have got additional troubles due to smoking.
And smoking and alcohol has to do with digestive issues, it’s a proven fact.
Though, in your case it looks like a different thing for sure. But, the point is why to take risk?, as you are already going through a hell of issues.
Sorry, I don’t want to lecture you on anything, but only suggested just in case it may help you to lessen the problems.
Dear,
The type of treatment you are advising can make a middle class person bankrupt for sure. So what you are suggesting may be right, but affordable to only a small percentage of well-to-do people. Most people just give up just after looking at the yearly bill of specialists.
I think you have cyclic vomiting syndrome you have sever sever nausea and vomiting and severe diarrhea and severe pain I have gerd and a hiatal hernia I hate being sick all the time and I have very bad acid reflux disease
Plus I have irritable bowel syndrome to
It’s a new year and everything will be fine. I think you should start from scratch and totally re-think your diet. Your whole hormone system is off balance. FIRST heal your gut with cooked oatmeal (water, oatmeal), kefir and kombucha. Also, take Vitamin D and activated Vitamin B complex. Also 100g Magnesium with food.
Then you can add clean food. Whole grain bread, vegetables etc.
And I would recommend talking to a RN. Registered Nutritionist!! asap
Your health comes from your gut and your body needs all nutrients to heal and make sure all processes can function! You are what you eat! Always think - what’s in it for my body when choosing food. I can promise you you will get better! And yes, STOP SMOKING!
If you were mistreated in a hospital as you describe you have certain patient rights and the hospital could be held legally responsible. You may want to consult an attorney who specializes in medical malpractice.
Sounds like irritants to your system. Smoking and coffee oh and alcohol as well as acidic foods like tomatoes or fizzy drinks are the culprits.
Once you take your diet back to it’s basic form you can eliminate those you consume which are causing you harm.
Water is a huge healer and can do some of the job into resetting your system.
I’ve used porridge to reset my IBS even though I’ve needed more insulin units to be injected to cover the carb content. Gravy triggered my last bout of IBS. Chocolate can too if I eat too many squares.
Your diet can hold the key to less upsets.
Try and think back to a diet you had where you suffered less. Try and mimic that diet.
All the best for 2019. I’m sure you will turn this around.
I will ask him when I see him Monday. I will keep you posted…
thank you, I see the doc on Monday. I will see what he says and keep everyone posted. I figured with Fatty Liver, cysts through body, eye problems, weakness, exhaustion, low potassium, low calcium, can be kidney disorder? but ultimately Crohn’s fit. But the stomach ulcers, Thyroid cysts…
My finger nails are paper thin and curl under. T
As soon as I can eat, I will.
I have always eaten healthy in the past. I don’t eat candy, I prefer fresh fruit. I cook at home, no fast food.
A typical day for me would be toast and tea, a homemade stew from scratch with fresh veggies. Or Lemon Salmon, salads, etc. I don’t drink alcohol and my worst quality is my smoking.
I have lost 45 pounds in the last few months, I’m almost high school weight.
hi,
I drink mostly water and tea. I have never been a coffee person. Everything, including water makes me sick. I just can’t handle anything.
Lester, I’m too sick to fight anyone. I just want to get better, besides I’m not that kind of person. I know people make mistakes, just want my luck to change…i rally don’t trust them though, they are like 6-0…