I can’t dream of continuing to live like this

By ricia88

3 min read

"I can’t dream of continuing to live like this." Yeah.. that’s what I’ve been telling my loved ones. But it’s as real as I can be! I’m miserable. Everyday. And I don’t know why.

Gonna try to sum up 30+ years in a paragraph. I’m “Allie”, as my friends call me. 31 years old. Since 8 years of age I’ve had gut issues. Diarrhea. Upset stomach. My mother said it’s nerves. I had been sexually assaulted and all of it was said to be psychological. Makes sense right? I thought so. 25 years later - same issues. And new ones. Severe, like days of vomiting. Now I’m afraid to eat. Matter of fact I have them listed there are so many issues and odd things going on. I’m no doctor but seems to be Crohn's. My father has it.

Never did any doctors appointments for this. Instead I did counseling all these years. Well I reached a moment, something else is going on here.

I think I’m having some kind of flare right now? Let me tell you what the last week has been like for me, and tell me what you think.

Throwing up for three days straight. Can’t eat. No food for three days. Doctor said “ if you throw up again tomorrow, go to ER” day 4- I feel pretty good. Not a big appetite. Then diarrhea. Pain. Bloating. Now last two days of the week vomiting again and now constipation.

Now how in the heck does the body go from one extreme to another day to day?

Oh, I’ve lost 18 lbs in 3 weeks! Something is going on, I know it! Now 20 years later my mother says “stomach flu” ?

I’m starting doc appts and tests for the first time in my life. So far everything has come back normal. Slightly elevated blood test for ADA inflammation which can be normal, I guess. I have endo and colonoscopy test this week. The first day I met my doctor he said “he doesn’t believe in IBS” which turned me off as I believe in this condition. He doesn’t seem to really listen to me and I already have doubts. My family wants me to get a new GI doctor.

I waited too long. I waited till I was miserably uncomfortable and lost in this pain. I’m discouraged to find out what’s wrong. I read stories of people struggling for decades to figure it out. And still sometimes they get back and forth answers.

Some of you voice your frustration of waiting years, decades for answers and here I am half a year in and I want to give up. I feel this pain, discomfort, exhaustion, stress has consumed me and I have nothing left to give!

I’m going to post my symptoms at the bottom in case those are not interested in reading. What’s your thoughts?

Nausea
Vomiting
Diarrhea
Bloating
Cramping in abdomen that moves to back
Headaches
Feeling full very very quickly while eating
Cramping after eating
Onset of diarrhea after eating (not consistent)
Loss of appetite
Weight loss
Mouth sores
No desire to eat out of fear of discomfort
Chills and sweats - this is not constant but when I’m having a bad reaction day
Fatigue even with 10+ hours of sleep
Memory loss - this has worsened greatly in the last several months
Muscle Soreness all over. Very bad in legs. All day.
Left toe constant numbness
Anxiety caused by symptoms
Depression caused by symptoms
Irritability caused by symptoms

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shale7 Member
Hang in there. I am not a doctor, but that sounds like IBD to me. I am glad you are getting tested, and I hope it can provide some clinical answers for you. I was diagnosed with Crohn’s at 26yo after almost a year of symptoms that started with diarrhea and progressed to fevers, painful cramping, vomiting & fatigue. So what you are describing sounds very much like me. I was in denial and got to a point almost where you are now when I finally saw a GI for a colonoscopy. My diagnosis was a relief even though it still took a while after that to find a medication balance that helped me. I hope the same can happen for you. I agree with your family that you should find a doctor you like. I have seen 8 different GIs in 8 years, and they all have different experience, advice, opinions, expertise & personality. You know your body best, and you are your best advocate. It is your life, so make sure your doctor is someone you trust who will take the time to listen to you. I had one who just wanted to drug me up & make my apt last as short as possible. Do not ever feel bad about asking to see someone else for a second opinion. If you have a family member you trust who can come with you for your testing this week, I found that really useful to have an advocate and spokesperson. I don’t always think straight when I’m in pain and exhausted, and it helped to have a second set of ears afterward. Funny enough, my father also has Crohn’s. It wasn’t as useful as you’d think really though, since IBD can vary widely & his symptoms and treatment are different from mine. Did you get tested for anemia? The fatigue could be related to dehydration & inflammation, etc but I found out during my first flare it was likely due to iron deficiency anemia related to blood loss from rectal bleeding. I ended up seeing a hematologist for that too. Gut issues can be incredibly isolating since it’s not fun to talk about and less fun to deal with. I’ve gone through two periods of bad flares—one of which was in a hospital. The pain, anxiety and depression are very real. But I am currently in medically induced remission now, so know that there is light at the end of the tunnel. It is possible to start a path toward recovery if you have the right people to help you. Sites like this helped make me feel not so alone, so I hope they can be that way for you too. Good luck my friend.
thedancingcrohnie Moderator & Contributor
I am so sorry you have been suffering for so long. I am happy to hear that you will be getting a colonoscopy and endoscopy this week. This is how I was diagnosed. Hopefully you will get answers soon and can move forward with a clear treatment plan to get better. I know how exhausted you feel. I have been there. Deep breaths. With these tests you will get some answers. Good luck and please keep us posted. We are always here to offer you support! Elizabeth (team member)
allie88 Member
Hi there! It’s Allie again. Thank you for the replies. Any bit of encouragement helps and hearing other stories seems to bring me comfort that I’m not alone. I had my colonoscopy and endoscopy. All normal. Normal biopsies. Only two things noted was inflammation in stomach not caused by infection. And chronic gastritis. This GI doctor gave me a diagnoses of chronic constipation and to take miralax once a day forever. It makes me terribly sick! Worsens my symptoms. I pass bowel movements so bad that I feel I’m starting my prep again for my procedure. I got approved to see another doctor. I see him virtually today for my first appointment. I looked up this doctors reviews. (Why did it I ever do this before?) my current doctor rates 4.8 and my previous doctor who I was seeing was a 3.2. They found no crohns. No Colitis. No Celiac disease. No cancer. Which is all great news right? Why did I cry when they gave me the results!? Is it possible to not have crohns show up in any of these tests but still have it?
Matt Nagin Moderator
Thank you for sharing your story and sorry for all you've been through. It does sound like IBD, maybe Crohn's disease. I relate to you story because my parents also told me, as a kid, that it was just a flu. I would vomit every day. My dad kept saying you must have a flu again. But a person can't get the flu a few times a week, for months at a time. The flu just doesn't work like that. Evenutally, after a surgery for what they thought was appendicitis, it was discovered I had Crohn's disease. Anyway, my heart goes out to you. I hope you see better days soon. Perhaps these new doctor appointments and tests will reveal something. Keep in mind that these conditions are difficult to diagnose. Misdiagnosis is common so be persistent. To give another example...they thought my brother had appendictis as well. They were going to operate on him. It was only because I suggested it might be Crohn's that they ran further tests on him and discovered he had Crohn's disease too. I hope you get better!!!!
elaa Member
You may have vascular compressions like Mals syndrome or Nutcracker syndrome. Join these fb groups. You have a lot of information there. Sending hugs