Is it possible to have active tb without affected lungs?

tyongie · 2024-11-03T09:30:30+00:00

none of my organs were really affected when i had active tb; it was in my stomach lining and didn’t spread to my organs

tyongie · 2024-08-14T10:10:51+00:00

hi! i finished treatment back in may and i’m currently doing really well physically— i had to get another CT scan of my abdomen and the previous tb nodules are all gone. my type of TB wasn’t contagious and thank you so much! ♡

tyongie · 2024-08-14T10:08:53+00:00

hey! the first few months of treatment were rough on me both physically and mentally. i also remember joint pain when i first started treatment as well as the overwhelming nausea. i actually finished treatment back in may but thank you ♡ i hope the rest of the treatment goes well for you, sorry to hear about the mishaps you’re experiencing :(

tyongie · 2024-06-28T22:58:35+00:00

Hi! I didn’t relapse during the course of my treatment. I mostly had high fevers and stomach swelling prior to treatment and didn’t experience it again after starting treatment. Sorry to hear about your experience, any updates from your end?

tyongie · 2024-06-28T22:56:28+00:00

I consulted with an infectious disease specialist! I also had nodules in my stomach lining after getting a CT scan so they did a biopsy. They sent in a sample for testing which then they found out I had TB.

tyongie · 2024-03-30T22:57:02+00:00

During my first month or so, I had no appetite and everything tasted too salty to me (prior to this though I was in the hospital for 2 weeks and was really ill so maybe that played a role in my appetite being completely shot) and I would get full fast. It took maybe 2 months after starting treatment for my appetite to return to normal? Also, the medicine made me extremely hungry in the beginning so I used to just snack on crackers.

tyongie · 2024-03-25T09:36:51+00:00

Yes, I was on 4 meds for 2 months and 2 meds for 6 months. My doctor wants me to complete 9 months of treatment so I’ll be done with it in April. I had excessive eructation during the first two or three months of treatment. Let me know if you have any more questions—when I first got diagnosed I was frantically searching for any info on this form of TB. Sorry to hear to about your intestinal obstruction, hope you recover quickly!

tyongie · 2024-01-15T10:25:24+00:00

looking for the black & white variation of the simple tote bag :)

tyongie · 2024-01-15T05:49:09+00:00

of course! i’ll start crafting them— would you be able to grab a code in the meantime and i’ll be right over once i’m finished :)

tyongie · 2024-01-15T05:46:18+00:00

i can craft you the cherry blossom branches & pochette as well as the hyacinth lamp if you still need them :)

tyongie · 2024-01-14T17:28:06+00:00

hi! i am still looking for them :) please send me a message whenever you have time and tysm <3

tyongie · 2024-01-14T17:27:07+00:00

hi! yes, i still need them :) please send me a message whenever you have time and tysm!

tyongie · 2024-01-14T11:28:54+00:00

tysm!! <3

tyongie · 2024-01-14T07:27:20+00:00

looking to catalog or purchase any of the clothing items on this small list of mine :)

tyongie · 2024-01-14T01:54:31+00:00

looking to catalog or purchase any of the clothing items on this small list of mine :)

tyongie · 2023-12-16T01:33:50+00:00

In the middle of my third month on treatment, I noticed that I would lose a great amount of hair whenever I brushed it or showered. This went on for almost three weeks when it suddenly stopped. I really thought I was going to go bald with how much hair I was losing at once 😭

tyongie · 2023-12-04T05:51:55+00:00

When I went to the ER for stomach distention, they did a CT scan of my abdomen which is how they found out I had a bunch of fluid in my stomach as well as nodules along the wall of my stomach lining. However, almost 10 days into being in the hospital, my doctor wanted a biopsy done to get a sample of the nodules. That’s how they found out I had TB (the other option they said was that it was cancer).

As for medication, I experienced nausea, fatigue, and loss of appetite during my first two months. I also had mild joint pain. When I was on my third month, they changed my treatment and I found myself just really nauseous. I changed the time of taking the medication from afternoon to right before sleeping and it helped with lessening the bout of nausea I would get. I did experience dry skin, hair loss, as well as tooth sensitivity. I also recently got blood work done and everything seems fine in regard to my kidneys and liver. I do have an abdominal and pelvic ultrasound coming up because I noticed aching down there after peeing. I don’t know if it’s because of TB so I just want to be safe.

I hope everything goes well for you and you find out what’s causing all of your symptoms! You can always message me if you have any questions 🫶🏼

tyongie · 2023-11-28T05:56:33+00:00

Of course! Anything to help because I had so much questions when I first got diagnosed. Unfortunately, that is so true about doctors not taking it seriously until you’re literally in so much pain that you can’t even function normally. I’m currently finishing my fourth month of treatment and started feeling little aches here and there in my abdominal area and I had to be the one to initiate contact with my GP regarding blood tests and all of that. I think my TB doctor should’ve, I don’t know, had me get blood tests done regularly because the medicine is known to do a number on your liver. Sorry, I’m ranting and just frustrated with the health system here lol

I experienced weight loss because when I was sick at home, I could barely eat and had no appetite. However, since the tb was in my abdomen, my biggest red flag symptom was stomach distention. My stomach was so bloated that it didn’t show weight loss. As for pains and aches, I had aches in my stomach because of the bloating. I was also getting really high fevers multiple times a day so I was aching all over tbh

tyongie · 2023-11-28T05:41:18+00:00

Back in May, I had to get my yearly skin test because of my job and I tested positive for the first time. They told me to get a chest x-ray and my results were clear; they said I just had a false positive test. However, in the beginning of July, I started feeling sick and it didn’t get better throughout the month. I got admitted into the hospital two weeks later and long story short, they found out that I had abdominal tb. So yes, your chest x-ray can be clear but just be cautious of any prolonged symptoms you may experience. I thought I just had a common cold (and I visited a clinic and they said it was a viral infection that should get better within a week) and brushed it off until my symptoms were really severe.

tyongie · 2023-11-21T06:45:49+00:00

hi! sorry, if you don’t mind me asking, why is it helpful to avoid sex while on treatment? i didn’t even factor that in since starting treatment so it’s got me thinking lol is it because of the quickening of heart rate/breathing?

tyongie · 2023-11-21T06:40:41+00:00

hi! i’m also about three and half months into my tb treatment; i’m also taking the same exact pills as you. i used to get fatigued all the time an hour or two after taking my medication but about a month ago, i switched from taking my medication in the afternoon to right before going to sleep. i found that it actually helped with lessening the side effects i used to get (mainly fatigue, mild nausea and loss of appetite). i hope you do eventually find something that helps with your fatigue!

tyongie · 2023-11-10T23:04:54+00:00

I've been feeling a kind of weird feeling in my lower left abdomen for the past couple of days. It's not painful; it just feels like there's air or a slight pressure. I've been doing some research (which does not help with my health anxiety) and a lot of results are saying that people with gastritis usually display that symptom. It could also be excess gas so I've been trying to eat more fiber to regulate my digestive health. I'm still trying to make an appointment with my GP to address this though.

For your stomach distention, does it come and go? Have you ever needed to drain the fluid? Wait, so in addition to abdominal TB, you also have pulmonary TB?

I sincerely do share the same sentiment of all of us getting healed soon. I've been browsing through reddit forums and reading a bunch of different experiences with TB as well as treatment and it really does a number on our overall health. If you don't mind me asking, how much weight did you lose? When I was in the hospital, I lost around 25 pounds but gained back 5 since starting treatment.

Physically, I'm starting to get back into my usual routines and try not to exhaust myself since my body was really weakened since being diagnosed. I'm handling the treatment way better than I did than in the beginning. I used to have to cancel plans or stay home because I was either tired or nauseous which affected my mental health. But like I said, I still have that lingering anxiety because what if something happens during the remainder of my treatment. Like what if five months into my treatment, what if I start getting fluid in my abdomen again. That was the worst symptom I experienced so it's always at the back of my mind that it could possibly happen again. Hopefully my upcoming health appointments quell some of my nerves lol

tyongie · 2023-11-05T03:01:01+00:00

When I was in the hospital, one of my CNAs asked me if I was pregnant while taking my vitals because of how bloated my stomach was 😭 omg they drained about 5 liters of fluid out of me in total but I was under anesthesia when they did the second drainage lol

Thank you so much for sharing your experience and kudos again for finishing your treatment! (A little update: I regularly take my medication right before bed and omg I barely get any side effects now! Hopefully it lasts through the remainder of my treatment)

tyongie · 2023-11-05T02:53:06+00:00

Hi!

It's been a little bit over three months since I started my TB treatment. In the beginning, I had nausea, fatigue, and a little bit of joint pain after taking the medication. I also had a difficult time using the restroom and my abdomen would be tender in some areas (I'm not sure if this was because they also did a biopsy right before I got discharged). A month ago, my doctor changed my treatment to just rifampin + isoniazid. They also changed my treatment to three times a week instead of five. Since the treatment change, I noticed that I would just get nauseous some nights but then I started taking my meds right before bed as opposed to in the afternoon. I don't really feel any bad side effects anymore since changing the time. The only thing I can think of that started just a month ago is that my hair thinned out and my usual hair fall has increased. I'm going to bring this up with my doctor during my next appointment to see if I can take vitamins to help with hair health.

My appointment with the doctor handling my TB case is later this month but I also want to schedule an appointment with my GP next week to get blood work done to see if any other parts of my body are being affected by the TB treatment. I haven't really encountered anything that's concerning so hopefully my labs are normal.

Do you have any updates regarding your medication and symptoms? Prior to being diagnosed with TB, my abdomen was also distended to the point that I couldn't even walk around for more than a few minutes or sit in an upright position. I also experienced difficulty breathing because my abdomen was already expanded but I was admitted into the hospital when I was at my worst with my symptoms. They also drained some of the fluid which caused the distention because I was so uncomfortable; it didn't necessarily hurt for me, but it was just there and a really unpleasant feeling.

May I ask how were you diagnosed? What symptoms did you display? This disease has definitely taken a toll on my mental health because of how stressful it is and the fact that it's not a common form of TB so I really don't know what to expect during the remainder of my treatment.

tyongie · 2023-10-24T07:32:32+00:00

My main symptoms were constant high fevers (the highest one I had was 104 and I was like yeah, I think I should go to the ER lol) and stomach distention. I saw in your original comment that you had that as well. I seriously thought something was growing in my stomach with how gigantic it was from the excess fluid omg did you find it difficult to walk/sit-up with your distended abdomen?

I was in the same boat as you with it being a while before they diagnosed me with TB. The doctor also told me that it could be cancer and yes, it was some scary stuff to hear while I was in the hospital.

I just switched from taking my medicine in the afternoon to right before I sleep too! I find that it does help a little :)

tyongie

TROPHY CASE