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We still don't what it is

Hello all, thanks for taking time to read my story, I hope someone will be able to advice me on what to do.
I am female and 27years old. I have had a lot of struggle with my health starting from year 2003. No much care was given after I lost my dad in 2006. I ended up in the orphanage that worsen things. There were times I was beaten and starved from being sick. I always had stomach problems and most time they just give me antacids. Fast forward to 2014 I ended up in China, my first week I had food poisoning, I was in the hospital for about 10days with tons of I.V. I kept having stomach issues and visits to the ER, I told them it was ulcer since that was what I was told in Nigeria. January 2016, I had a ruptured ovarian cyst and need a laparoscopy, unfortunately for me I never knew I was prone to adhesions, I have a second surgery in November same year.
By this time I was already diagnosed with PCOS and I already had endometriosis and I was asthmatic. Schooling was unbearable, I was mostly uninterested in life my then boyfriend (now we're married). I really lack word to appreciate what he has being doing and is still doing for me. He made sure to stay with me in the hospital and help with translations and all.. I have some endoscopy and colonscopy. Then in April 2018, I had a very horrible pain and we went back to the ER, after the IV we back to the dorm but I was in so much pain still after wating a pcs of sandwhich, this was about 2am when we went back to a different hospital this time. The doctor asked where was hurting and I pointed he told me to take a deep breathe and after poking an area a bit I thought I had died. A lot of test were carried out and at the end of the day an emergency cholecystectomy was carried out.
It was hard adapting to the new way of life without a gall bladder. In 2020, I notice eating was a serious issue for me and I was almost always full and in pain. My husband took me to the hospital again and this time in Nigeria, the doctor was effortlessly dismissive of me because I wasn't crying (I have a high pain threshold and rarely show pain), this led to a bit of confrontation between my husband and the doctor because he gave me some pain killers and said I should go home while my husband was asking for blood work and other detailed test, finally he booked me for all. The x-ray had a fault, even we could tell but they asked me to go home and and come back on Tuesday (this was a Saturday). We took pictures of the xray and sent to my Chinese doctors and another Nigerian doctor friend, by the time she could see it I was trying to eat and oh the night didn't end well. We rushed back to the hospital by 2am and I was sedate because of the state I was in. The next morning the general surgeon came and after evaluating the xray, turns out I had intestinal obstruction due to adhesions. Unfortunately again, the nurse ''forgot'' to administer omeprazole and by the time I got home my stomach was in a really shape, we started a 4weeks treatment for gastritis. By the next year 2021, I was in really bad pains, I could not pee or sleep or move properly. We saw some doctors and one said I had anxiety issues and the pain was in my head. We went to a different hospital in a different city and after some investigations, turns out I had pelvic adhesion and I had the 5th surgery in May of 2021.
Since that surgery I have not been doing well, I don't eat or sleep properly by 2022 my eat and lifestyle had changed, I was losing weight but gradually, I had more endoscopy but nothing was seen. They said I had dyspepsia and was given meds for it but even with the meds I was not find. I would have chronic heartburns for days, bad bloating and constipation, they say it was endobelly and later said I had IBS but some of my symptoms didn't fit with IBS. We went to a different hospital by now I was living on Complan and fluids only but I was still loosing weight. So much they were worried I had stomach or Colon cancer. I had Cancer screenings done and more endoscopies. They later said it was my anatomy and they don't know what is wrong with me, a few suggested adhesions again due to my history but I just getting worse and I am in really bad pain whenever I drink anything, I lost about 10kg from March till now. I am just on 100mg Tramadol, sleepless nights, a lot of pain, sometimes I am confused. I don't know what is happening to me and I am not getting any feedback either. Please if anyone knows or has an idea of what is happening to me kindly help me. I am really tired and frustrate but I am trying to hang on. Sorry for the typos and long read. Thank you so much. There's so much I can't put down in writing but I am at the verge of a 6th surgery... Please help!

  1. Wow. I'm so sorry for all your pain. Where are you living and receiving care? Are you still in Nigeria? I looked up the side effects of Tramadol, and according to all the websites I consulted, it could be causing you the feeling of confusion. This medication has a lengthy list of side effects, so I think if I were in your shoes, I'd read those. I can understand why you feel so tired and frustrated. That must be exhausting. Sadly, we can't offer medical advice here since we are not professionally trained physicians. I think I would keep consulting other doctors. It sounds like right now your treatment is a bit hit-and-miss. And maybe someone with a bit more experience with health issues like yours will chime in with other possible medicinal paths. I just wanted to let you know that I read your story, and I can feel your pain through your words. Please stay persistent in your efforts to seek answers. Also, please stay in touch and let us know any updates you receive. I'll be thinking of you and sending positive vibes your way. Air Hugs to you! Stay resilient!--Traci, UC-IBD Team Member

    1. I am in Abuja, Nigeria but at home. I am not receiving any form of medical care at the moment. Yeah, I read up on the side effects of tramadol but I don't know what else to switch to. Thank you so so much. This means a lot to me. 🤗

  2. I'm so sorry you are going through all of this. At the moment what symptoms are you experiencing. You say pain. Where is your pain. In your abdomen? And if so where? Are you bleeding when you have a bowel movement? Do you vomit or have nausea? Also, when you can eat, what are you eating? What part of the world are you in at the moment? Do you have access to a Gastroenterologist that has experience with IBD? -Elizabeth (team member)

    1. Thank you so much. I have was diagnosed with Chronic Pelvic pain in my right lower abdomen (this one barely ever gets better). The ones persistently bothering me is the upper abdomen, the lower right and left abdomen to my spine and my rib cage. I get nauseated a lot but I use avomine to not throw up. I bleed but I just assume its the hemorrhoids. Mostly Complan, fluids like plain teas or Salad without dressing so basically try to chew on vegetables like carrot. I am in Nigeria, Abuja. No, the last gastro I saw said I am complex and that I should see a surgeon due to my history with adhesions.

    2. If you are bleeding and it is fresh blood you can definitely have ulcerations in your lower colon. I had this personally. It is so important you get this taken care of with proper treatment. I know you are doing what you can. My heart goes out to you. Have you had colonoscopy with biopsy? Also, raw veggies is a big no. It will cause pain to digest. If you have veggies make sure they are cooked/steamed. It is easier to digest. I would stay away from salads while you are flaring and in pain. The fiber will aggravate your intestines. -Elizabeth (team member)

  3. I have treated ulcers. I had endoscopies but no biopsy even after requesting one. Alright, Noted. Thank you.

    1. You are welcome. I hope this gets resolved soon and you get relief. Sending strength your way, Elizabeth (team member)

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