I had chronic appendicitis the entire time. - IBS Network

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I had chronic appendicitis the entire time.

9 Replies

I was “diagnosed” with ibs for a while now.

I had an exploratory laparoscopy for endometriosis back in August, and a small amount was found and excised. 2 months later I was in and out of the hospital due to chronic RLQ pain. The first few times appendicitis was expected. I was sent home when my CT scan appeared normal. I then went to my primary care doctor. They insisted I go back. Again, was sent home blaming my symptoms on endometriosis/ibs.

The first overnight stay the doctor thought I was seeking drugs. She tried sending me home but I refused. My mother told her she was afraid something bad would happen to me (due to my pain) which was misinterpreted by the nurse as me hurting myself. This lead to me being held for psychiatric observation, they tried to force me to go to a psych ward, and I was not treated for my pain. The gynecologist who performed my first surgery came in after hours and demanded that I got a HIDA scan. This showed I had cholecystitis. The doctor still showed no concern so I had to fight to get discharged psychiatrically and was easily discharged medically.

The day I was sent home I went to a different hospital and got my gallbladder taken out. I felt okay for a few days. I ended up going back to the ER due to the RLQ pain.

I was told by doctors at the new hospital that it was all in my head, that the pain was from a past trauma. They did a colonoscopy (taking the bowel prep gave me horrible pain and my vision started to blacken during the prep— it is dangerous to take any type of laxative if you have appendicitis) and it was clear. The GI doctor just wanted to be rid of me and said it must be muscular problems because he gently pushed on my abdomen when I was laying down then had me to a half sit up and JABBED me. Because it hurt worse when he JABBED ME he said I needed trigger point injections. I refused this.

During this stay, the first doctor I saw said that I had nothing wrong with me and that young women with abdominal pain are a headache for doctors. He came back shortly after telling me my WBC was raised. I was given IV antibiotics after a CT scan then another CT was taken after seeing the GI doctor as I was not convinced he was right. The CT showed that my appendix shrunk. I was told that they “didn’t know what this meant.” I demanded to see a new surgeon.

The surgeon came in and said he didn’t think it was my appendix but agreed to take it out alongside my gynecologist to check for more possible endometriosis. I just had this surgery two weeks ago. I just got the pathology report this morning. It showed that I had appendicitis this entire time.

I am appalled at how I was treated. I had to research what was wrong and demand to get proper treatment. I was in the ER multiple times with textbook appendicitis symptoms and no one believed that it was my appendix solely based on how it looked on the CT scan.

Thanks to me, I am healthy and no longer in pain. I no longer have IBS symptoms. I no longer have a low grade fever. I will never doubt myself ever again.

I can’t believe it took them this long to take care of me properly.

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9 Replies
Lisahelen profile image
Lisahelen

Goodness! What a time you have had of it. Lets hope that your health continues to improve now.

Drs dont like us consulting dr google but sometimes needs must. Our health is important to us and having this facility available (if we can sort the wheat from the chaf, )makes it an invaluable source of self help.

in reply toLisahelen

Yes I am feeling better and better as the days go on. I’m actually about to have my degree in biochemistry and have read many scientific peer reviewed journal articles about “odd” cases of appendicitis and many cases matched what happened to me. Thanks to the access of these articles through my university I was able to figure out what was wrong. It’s been a real journey! We are our own best advocates when it comes to our health and knowing something is wrong.

I literally had my gallbladder removed at 18. My mom was told they went ahead and took my appendix at that time. Then I was diagnosed with severe endometriosis after my son was born. Had a few surgeries. Then at around 36 while trying to get pregnant they said I had a cyst and I had to have a complete hysterectomy. I was devastated. This whole time I kept going to the doctor with RLQ and RUQ abdomen pain. Endometriosis laparoscopy surgery, then cyst removal, then fertility shots that ended in hysterectomy from Gyn oncologist. Aside from that my GI doc became my friend as well. Lots of GI tests. I was told I had scar tissue, IBS and even celiac disease. Well at 42 I found out the whole time I had chronic appendicitis and had emergency appendectomy. It was awful. All those tests. Come to find out at 44 I had a bad blood clot to my liver (portal vein blood clot) I was emergently sent to hospital. It was crazy. They got records from my old GI doc since I went to a university hospital and it had been there 20 years! Never found with all my tests. Due to blood flow blocked to my liver half of my liver is now atrophied. All those years of being told I was just fat when I was in fact average and wore size 6-8 and I had IBS and celiac. Now I only have a partially functioning liver. I also was never able to have another child. I did have endometriosis. They tried to say the cyst may be cancer. I begged them to leave anything they could and they took everything! I bet if they had found my appendicitis and blood clot with the thousands of tests I had my life would be so different. I did have some orthopedic surgeries but to date I’ve had over 30 surgeries. I think mostly because they couldn’t figure out why I was hurting. I went to university hospital and they found everything immediately. Your story just really touched me. I didn’t realize that was a thing with my appendix. I kept telling them my appendix was gone and with more CT’s and X-rays than I could count they never found my appendix or questioned it. I’m glad you questioned yours. Mine problems lasted decades and have caused irreversible damage.

in reply toHopeful-Tinkerbell

I’m so sorry this happened to you. Seems like doctors don’t take our pain seriously. If they’d listen to their patients things like this wouldn’t happen. I hope you’re okay, as okay as you can be, considering your circumstances.

Paulaj66 profile image
Paulaj66

That’s awful. Glad you’re out of pain though x

alicemarsh profile image
alicemarsh

Wow what a truamatic time - I am so glad you got it sorted in the end it must have been awful - hope you are feeling a lot better now.

Momofboys12 profile image
Momofboys12

I feel like I’m going through the exact same thing right now!! LRQ pain that no one can figure out!! They say appendix looks fine on the CT and my blood work is normal so it can’t be appendicitis...I finally have a surgery scheduled this month for a diagnostic laparoscopy. In a previous surgery it was in the op report that my appendix was surgically absent, but on my CT last month they say it’s there and normal!! Really hoping this surgeon can find it and take it out!!!

Moko23 profile image
Moko23 in reply toMomofboys12

Hey, how did it go?

Momofboys12 profile image
Momofboys12

I’m just curious, did the pathology actually state appendicitis? Mine said the appendix had mild reactive hyperplasia of lymphoid aggregates.

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