Peas with inflammatory bowel illness, please come talk to me

Have you had a colonoscopy? You didn't mention it, and that is I think how ulcerative colitis generally would be diagnosed.

I have UC, and I was diagnosed about 15 years ago. I had the symptoms you describe, pretty much all day every day, plus a ton of blood loss and dehydration. I saw a couple of doctors who said I was just a high-strung type-A twenty something woman, until I saw a gastroenterologist who did a colonoscopy and diagnosed me.

If you haven't had a colonoscopy yet, insist on one. Don't take no for an answer. It's definitely warranted with your symptoms. The weight loss is particularly concerning. Not every IBD is accompanied by bleeding.

Yeah, that. What you are experiencing is not 'normal' and they need to find a cause. Hope you can get it sorted soon.

Sorry you feel so ill, I know it's awful.
Do you drink peppermint tea? I used to find that helpful and soothing.

Some people with IBS and IBD find that a high-fibre diet with lots of veggies can make things worse. Going vegan is not always the answer.

I do think it's worth going back to the Dr, I'm sorry you've not had much luck. And I know you've had a lot of additional stress and I hate it when drs just say "it's because you're stressed" without really looking much further.

I'm off wheat, dairy and meat. I find good probiotics to be s huge help.

But stress will bring it on in an instant.

Immodium and Xanax. My two best friends

I agree. It sounds like crohns disease and my dh was also incorrectly diagnosed with UC. Also fruits and vegetables wreak even more havoc when he is in a flare. So your vegetarian diet may be hurting you without you realizing it.

He also just had 2 feet of small intestine removed in March. He was severely anemic even though he had not seen any blood, he was bleeding.

Where are you located? If you live in a mid to small size town I would strongly recommend traveling to a large city to find a great GI doc. I have found that in smaller cities all the GI docs, for example, won't contradict each other so a second opinion is worthless.

Your story is mine. I had various symptoms from teen years on but escalated when in late 30's. Even though I had a younger sister with severe crohns (who was diagnosed and almost died from it at 13) it was never considered because "I wasn't bleeding". I didn't know better because my sister had heavy bleeding as a symptom so I believed what dr's were telling me. I now know that if it's in your colon you will have noticeable blood , mine however was entirely in my small intestine so that was not evident. The test that diagnosed me was an xray - upper GI with a small bowel follow thru. They had no trouble seeing the pipe was clogged and the barium I drank was struggling to get thru! Now CT scans are good enough to see this (so I am told).
1 month and alot of prednisone later I had surgery with the last 3 feet of my small intestine removed along with the appendix and illeo-cecal valve.

First YOU ARE NOT CRAZY. I had so many misdiagnoses the year prior and "it's in my head" was included. I started to believe this! I could have written everything you did symptom-wise. Crohns is very difficult to diagnose and involves a lot of ruling things out. Repeated inflammation from flares results in scar tissue. Your small intestine is where you absorb key fat soluble vitamins (A, D, E, K,) & B12. Deficiencies in these cause a number of symptoms. Add that to the disease itself and of course you will sound like a hypochondriac when you go to the doctor. Luckily I had a primary care at my sickest that even after ruling out everything possible believed me when I said something is very wrong we need to keep going. She sent me to the gastro and pulled strings to get me in "early" (which was 2 months instead of 6 haha). He was an idiot but that's another story . He did a colonoscopy which showed nothing. I had to request every test he did and learned what to ask for on the internet. Of course he took all the credit for the diagnosis.

I would be happy to share more if you like... just ask! doh - editing to add I have crohns

zella have you had a CT scan with contrast?

Nausea was a huge problem. It was so bad at times I would have rather had excruciating pain! I believe it's from being dehydrated and the stomach acids and bile backing up. In the years before I was diagnosed I would not eat or as little as possible to cope with symptoms. That bowel rest was just enough to calm things down. Over the years the scar tissue built up, created the narrowing strictures and eventually completely blocked it to the point I couldn't drink water without throwing up. I had the surgery a few days later. I did have 2 doses of Remicade prior to surgery. That was when it was very new. I have been on every med available and have stopped short at doing Humira. I had side effects from everything to that point and for me I felt I was trading one set of symptoms for the ones caused by the medications. If my weight was so low I couldn't use fasting for bowel rest and symptom relief I would consider meds. Fortunately (or unfortunately) I don't have that issue right now. Much to my dr's dismay I am not on any meds.I do feel the crohns is not as severe as it was when I was younger(I am 55). I have been using diet (Specific Carb Diet) as much as possible and it helps greatly. I never found any one food that was a trigger or that made things worse when you are really feeling bad.Like you said-when you are sick it all is bad! Simple carbs though are the worst at all times. Cut out sugar and grains, focus on clean protein and cook vegies (no starch vegies like potatoes though) really well. Unsweetened applesauce is nice to have in those little individual cups. I make my own greek yogurt every week. I am not eating grains but I used to eat the Ezekiel bread toasted with some butter. I used to not eat meat -- but soy is out and I do feel better eating some meat. Watch out for probiotics - there are some that can make you feel worse. I will look for the info on that. I know I bought some expensive ones and had to throw them out. I seem to have flares in the spring and fall. I have read that seasonal allergens can trigger inflammation which can trigger crohns. I used to attribute the October flares to Halloween candy If your B12 is low insist on injections. I give myself a shot every month. If it's low it's because your body isn't absorbing so supplements aren't reliable. There is a protocol to build it back up (shot every day-week-then go to monthly). When that was low (discovered post surgery for me) I would lose balance and fall while walking, drop things, lose bladder control spontaneously, had serious short term memory loss--it's amazing what that small amount of vitamin does. I hope this wasn't too rambling and some of it helps!

There is a condition that a very very small % of patients get when they have their gallbladder removed.  It is called bile salt diarrhea.   The GI tract is unable to adjust to the bile going directly into the intestine, instead of being stored in the gallbladder and then going into the GI tract.  It can be treated with  Colestipol tabs (or Questran powder).  Some believe that patients with IBD/IBS are more likely to get it.   The diarrhea will occur 24-72 hours after eating fatty foods (or eating something somewhat fatty but not with other non-fatty foods)  the usual diarrhea meds have ABSOLUTELY NO EFFECT on the diarrhea once it is present.  It can be very painful and there is no blood.  It seems to come out of nowhere.  You can feel fine and it quickly manifest.  Whenever the Intestines are "in distress" it is not unusual for there to be nausea and vomiting.  It is a system and the n/v is just part of the system reacting to the distress. (I have simplified it here).

there is also the possibility of food allergies.

You mentioned an endoscopy but have they also done a colonoscopy?

if your doctors have not considered these, then you may want to discuss them with your MD and see if it is a possibility for your situation.

(I did not read every post here so I apologize if this was already mentioned.)

good luck with this!

i would strongly recommend that you keep a food diary and an "output" diary for a few weeks to see if you can find a pattern to this.  It might help.