Chest pain, nausea, and abdominal pain after ileostomy surgery - Seeking advice

I'm having issues that I'm not sure are related to having the ileostomy surgery or just regular Crohn's symptoms. Since Friday (9/4/2015), I've had steadily increasing chest pain, nausea, and abdominal pain around the stoma after every meal I ate. There is also a large bump around the stoma that's painful to the touch. After I get up from a seated position, I come very close to blacking out, dark areas in my vision. This happens every time I get up. Sunday, I woke up with a bag full of bright red blood. No blood after emptying the bag in the morning. Early this morning (2 am and 4 am), I had to change my bag twice because of leaks. During the 4 am change, I became very nauseated with chest pain and hard to breathe. What is wrong with my body? I have a doctor's appointment today, but it's only to set up a new PCP because of new insurance. I would like to get any suggestions from my fellow ostomates before I go explain my symptoms to this PCP who might know anything about Crohn's or ileostomies.

Go to the ER now!!! Bowel obstruction or something similar. Don't wait....

Thank you Kruzer. I was actually at the doctor's office at the time you sent your message and she sent me to the ER. My doctor did an EKG and said it was abnormal with the heart beat all over the place. I went to the ER straight after seeing her and I'm here now. Only things done so far are blood draw and nausea and pain meds. CT scan was ordered but I'm still too nauseated. Zofran doesn't work for crap.

Wow.. stay there.. Glad you made it there. You clearly got a pretty severe problem. Don't be stubborn (like me). Last year I was feeling pretty bad for about 2 months. I knew I had a problem in my gut but wanted to wait to see if it would go away. It did not. I had a major infection in my abdominal mesh that was septic. Almost fatal. In the hospital on and off for three months and 2 major surgeries. People like us cannot put these things off.

Hope you are well. Let me know how you are doing.

Kruzer

One of the things I found that really sucks is the fact that while going to the ER 20 different times this year, they start treating me like a freaking drug seeker when I'm clearly not. Hell, even my family thinks I'm a drug seeker and that I need to see a psychiatrist. How the hell am I supposed to live with crap like that? I'm clearly having major medical issues and no one believes me, even after tests have shown active Crohn's and ulcers in the past. My family thinks that since I've lived with Crohn's for so long, that I know ways to make myself sick so I can go to the ER and get narcotics. I'm getting sick and tired of their BS. Anyway, I was just trying to vent because I have no one else to talk with about these issues.

Thank you for reading my rant.

PS. I was reluctant to come to the ER because I'll be missing my classes at an online school I'm going to, plus I was supposed to go to an SSI disability hearing tomorrow that now I can't make it to.

The general public does not understand what we go through. Don't be surprised. Having "ass" problems is nothing we asked for. No one wants it. And as we know all too well, it is very disruptive to one's life. Keep up the fight. Let me know what you found out in the hospital.

Best of luck.

Glad you're at the hospital, nipper. A drug seeker, hey? Hmmm, well, I have the mesh also and I can feel the hard lumps around both. And yes, I'm a 25-year veteran, and no, I don't know it all. Strange things happen to us. A lot of people say they know someone who's got Crohn's, but I'm sick of hearing that they change their diet, blah blah. I have had 8-9 major operations. Living with crippling adhesions is bloody hell on earth. And I have had a nasty rat of a doctor that I should have run as fast from. She's decided, as I had forced her hand to cancel my authority for her to treat me for getting strong pain relief. She's done the cancellation, but I now have a black mark against my name, only to save her old butt. A Methadone doctor, by the way, who is more addicted to getting paid to abuse her power. I have been waiting to have my papers approved to be treated with my old doctor. To hear your problems, I hear you loud and clear. What I would give to minus 3 of useless operations and hernia repairs. I lived with pain already, but after my last and final bowel chopped out, 7 years of crippling pain has just about taken its toll. I will try to get back on here. I am interested and concerned as to what happens to us Crohn's. It can happen to any of us. I'm so sorry that you're having a shite time with family. That's a double slap. Trust in your fellow ostomates. We do understand, and god, it's a hard and long tough road that we fall down. As Kruzer said, please keep up with these comments. And I really hope you can get a few better scans. Sounds like something real nasty going on with you. And we learn from experience, things happen. You aren't a liar, and who on earth wants to go what we call here "doctor shopping" for yucky medications? It's a disgrace we have to fight everyone. But please don't give up. Something major is going on. I hope you don't have a twisted bowel, matey. I'm worried to read some of these stories. It freaks me out, so I can't or can imagine what hell you're going through. I'm usually dragged to the ED of my hospital. Good luck, matey. And if what you're saying is going on, you're in the best place. :) Here's fingers crossed it's not something horrific. You need help, and screw those who say you're playing this up. Who on earth wants to go to the hospital in the first place? Good luck. May the gods be watching you. XXXXXXXXXXXXXXXXXXXXXXXXX MOOZA OZZIELAND

My rants. By the way, I could write a book. Spelling mistakes and all. There's ranting allowed here. It's called "I have had enough". Thanks for sharing, mate.

Thank you, Mooza. I think most of us can relate to what's been said here. And I 100% agree that most often only fellow ostomates understand. It's nice to have a place to share these types of experiences and to learn from others'. Take care.

Hey Mooz, just have to say hi to you. How have you been?!!!!!

Hello Littlenipper777.  Thanks for the post - There is not a lot I can add to what people have already said other than to wish you well in you efforts to get it sorted.  It's always good to hear from you Mooza and between you all you have motivated me to pen another  rhyming verse on the subject 'what is wrong with me'.  

I do not suffer with the dreaded chrohns myself so I hope you don't mind that I have written the rhyme in the first person.

It's just my oddball way of saying that I can try to empathise with your situation and understand that it can sometimes be a difficult thing to deal with.

I hope you like the verse!

Best wishes

Bill

This hospital admitted me, and the second day while I was standing up to empty my bag, I couldn't get a good angle sitting or lying on bed, and the nurse was too busy to help. I completely blacked out, and I could remember myself saying that I missed the bed and was going into the trash can. I remember saying out loud, "I don't care." The next thing I knew was that at least 6 different nurses were in my room trying to help me get up into bed and clean me up. I was freaking as cold as I've ever been before and went stiff as a board and was shaking very bad. I was transferred to the ICU, and a few days later the doctor told me I had septic shock, bacteria, and infection in my blood. My lowest BP reading was 59/60, and my highest body temperature was 105°F. After many IV drugs to treat the shock, the infection is gone, and so is the low BP and high body temperature. I'm now having another issue with my ileostomy emptying faster than normal. As soon as I get a meal in my stomach, it comes out my stoma in liquid form in 30 minutes or less.

Thank you kindly everyone for your encouragements, love, and support. It's one thing to receive and give love to the ones we love but quite a bit different to do the same to perfect strangers we see on the internet. I truly appreciate all your love and support. God bless you all.

Wow, so glad you're much better. I'm also glad you took the advice given and went to the ER. I have heard about this septic shock, but still am unsure how this happens to someone. I understand it is an infection and bacteria in one's blood, but I think I will go search out more information. I find it quite scary to say the least!

Wishing you a full recovery.

Found an informative link about this if anyone would like to read it: http://www.healthline.com/health/septic-shock#Overview1

What is the problem?

This sounds simple. It is a sure way to get your gut back working for you.

1) Drink a lot of water, try and get down at least 80 ozs per day. Get about 1000 mg of potassium citrate mixed in. It will decrease the acidity in your urine.

2) Do not eat any fibrous plant-type foods.

3) Stay away from processed white flour, no more white bread.

4) Eat protein, lots of it. Your body will like protein and simple carbs. It has taken me over 7 years to figure out what I can and cannot eat. We are all a little different, what works for some will not work for all.

I have yet talked to a doctor or nurse that will know what you can or cannot eat. It is a long, hard road, but it does lead to the Emerald City.

Rick.....

Rick is right! The doctors say you can go back to a regular diet after you have your "parts" taken out. BS! Many foods cannot be tolerated anymore. And you have to go slowly one by one and see how your body reacts to each. You have to look for subtle hints of problems. It is not always obvious.

Good luck,

Kruzer

Very true, my doctor told me I can eat just about anything, so I did what he said. Results ended with that being not true at all, and quite a few vegetables make me wish I was on the moon and out of smell range :O. Not to mention the digestive acids some foods tend to cause stinging around the stoma, acidic types, while alkaline types seem fine, oh and (processed foods are bad bad bad). I suppose I can make a list of foods that play hell with me, I'll try and put all that together as to what I find works for me and what makes me want to tell people I don't want to come out to play today. I used to love eating cabbages, corn on the cob. And frying in certain types of oil for me is out of the question, makes my insides dance to a rumbling tune, except Coconut Oil, (pure virgin cold pressed). I love that stuff, pity it can be pricey to buy.

May be of interest to some people, this link below. Items listed play havoc with me. Fried foods are a no-no for me. Hope the link works.

Treating and Living With Crohn's Disease

Avoid Problem Foods

Keep a food diary to figure out which foods, if any, cause you distress. Some foods may only be a problem during flares. Common problem foods for people with Crohn's include:

High-fat, greasy, and fried foods. About one-third of people with Crohn's find these hard to digest.

http://www.webmd.com/ibd-crohns-disease/treat-crohns-15/diet/diet-nutrition

Also, have some diet tips on www.theamericanostomyclub.com/diet.html; diet section. Simple stuff for people with ileostomy.

Always looking for good diet tips. (Since the Dr. don't really know better)

Good info, Kruzer. Thanks!