I'll try to keep this short but 9 years is a lot to cover...
A bit of info to start:
I'm a man, whose symptoms started about 9 years ago, and I just turned 30 in January. I'm from rural East Tennessee about 30 mins outside of Johnson City.
My pain started around my final year of college. One day I had an extremely sharp pain behind my belly button. This pain only really occurred if I tried to move around, stand up straight, or went pee. The pain was excruciating and it would last 3-6 hours. For the next few days, or even weeks after, my urinary tract would be on fire and extremely agitated. Frequency and urgency also became an issue. Pain and irritation were about a 2-4 throughout the day. I only had this happen two or three times my last year of college. Every time I went to the doctor, they didn't find anything.
After graduation, I got a good job at a large company. My symptoms started getting worse and my pain and irritation were nearly constant. My "flare ups" with the extreme belly pain became more frequent (every 4-8 weeks it seemed). Over time, it seemed to me that it was triggered most often by three things.
Day of the surgery comes and I go under. When I come to, my surgeon comes to me and says they repaired the hernia with a mesh (which now causes me some swelling and discomfort, YAY!), gut away some fatty tissue that was connected to my bladder, and removed my appendix because it looked even more enlarged than the scans. While recovering from the surgery, a few days later, they called and told me my appendix tested positive for appendicitis (which they called acute appendicitis, which is apparently pretty rare as they usually just pop all at once). After hearing all this I'm thinking that this must have been what was causing all my pain before.
Younger me, full of hope, spent about a month recovering. My urinary irritation never really went away, which already had me concerned. Eventually, I had another flare up which caused my extremely sharp belly pain. At this point, I had already been struggling to stay focused and give my all at my job. I was getting everything done that I was assigned but I wasn't doing anything more than required. Management noticed this and my employee reviews mentioned this (I still don't get this to be honest. If you want me to do more then assign me more.) Now add job security stress into the equation and my symptoms only seemed to get worse. I'm trying to narrow down whats causing this. I'm eliminating foods from my diet. I tried excluding gluten, dairy, and soy. This didn't help, the pain and flare ups were still there.
Luckily, I was able to talk to my old college boss and get a full time job working from home. This made managing my stress and symptoms a lot easier. I invested in a standing desk (which does seem to help most of the time) and continued trying to find ways to cope with my undiagnosed symptoms. I went to various other urologists and a pelvic floor therapist. The closest I got to an IC diagnoses was at the University of Kentucky where they told me I had chronic inflammation. After spending tens of thousands, and feeling no closer to finding relief, I gave up for a while. Dealt with the flares when they came as best I could.
Eventually, I had one flare too many and went to the ER to try and get some pain relief. There, I was given Ketorolac to treat the pain. Now, it's worth noting that I had been taking Aleve or Ibprofen once maybe twice a day and they didn't really seem to help. Ketorolac however would clear up the severe pain within about 20-30 minutes. It didn't get rid of my irritated urinary tract or general discomfort but it did give me quick pain relief for the worst of it and make me functional when took it. After relying on Ketorolac to knock out my severe pain for about a year, I finally had enough of the flare ups again and started seeing more doctors about 8-9 months ago. I went to see another gastro, whom found an ulcer in my colon, and with my other gastro symptoms decided to diagnose me with Ulcerate Colitis (which I'm now taking medication for along with avoiding trigger foods). Additionally, I went to another urologist whom looked at my charts and said "I think you most likely have IC". He handed me a bunch of info, told me about various possible treatment options. He told me to pick up some Prelief before eating anything acidic and take some Azo to relieve symptoms.
So now I've been trying for about 8 months to cope with IC and feeling that I pretty much have no hope of ever getting better. I've changed what I eat entirely. I eat a very bland diet in order to avoid triggers. I haven't really gone out to eat much at all in years because of how terrible I've felt. Overall, I still feel pretty miserable all the time. I still get severe flare ups. I rely on Ketorolac way more than I should, given it's not meant to be used for long term pain treatment. Honestly though, I'm just tired. Very tired of fighting this and not feeling like I'm getting anywhere. My two remotely comfortable positions are standing and laying down. Sitting is just uncomfortable for me and it stresses me because I'm afraid I'll have another flare up. Even with this, I'm still trying to do more research. I want to find some relief and that's why I joined!
To summarize:
My symptoms:
Thanks! First time I've really written all of this down for someone else to read. It was kind of therapeutic in it's own way.
A bit of info to start:
I'm a man, whose symptoms started about 9 years ago, and I just turned 30 in January. I'm from rural East Tennessee about 30 mins outside of Johnson City.
My pain started around my final year of college. One day I had an extremely sharp pain behind my belly button. This pain only really occurred if I tried to move around, stand up straight, or went pee. The pain was excruciating and it would last 3-6 hours. For the next few days, or even weeks after, my urinary tract would be on fire and extremely agitated. Frequency and urgency also became an issue. Pain and irritation were about a 2-4 throughout the day. I only had this happen two or three times my last year of college. Every time I went to the doctor, they didn't find anything.
After graduation, I got a good job at a large company. My symptoms started getting worse and my pain and irritation were nearly constant. My "flare ups" with the extreme belly pain became more frequent (every 4-8 weeks it seemed). Over time, it seemed to me that it was triggered most often by three things.
- Being very active. Such as being outside mowing and trimming the lawn.
- Eating poorly and having bad gas. (I've always had gastro issues, sensitive tummy)
- Sitting for extended periods of time.
Day of the surgery comes and I go under. When I come to, my surgeon comes to me and says they repaired the hernia with a mesh (which now causes me some swelling and discomfort, YAY!), gut away some fatty tissue that was connected to my bladder, and removed my appendix because it looked even more enlarged than the scans. While recovering from the surgery, a few days later, they called and told me my appendix tested positive for appendicitis (which they called acute appendicitis, which is apparently pretty rare as they usually just pop all at once). After hearing all this I'm thinking that this must have been what was causing all my pain before.
Younger me, full of hope, spent about a month recovering. My urinary irritation never really went away, which already had me concerned. Eventually, I had another flare up which caused my extremely sharp belly pain. At this point, I had already been struggling to stay focused and give my all at my job. I was getting everything done that I was assigned but I wasn't doing anything more than required. Management noticed this and my employee reviews mentioned this (I still don't get this to be honest. If you want me to do more then assign me more.) Now add job security stress into the equation and my symptoms only seemed to get worse. I'm trying to narrow down whats causing this. I'm eliminating foods from my diet. I tried excluding gluten, dairy, and soy. This didn't help, the pain and flare ups were still there.
Luckily, I was able to talk to my old college boss and get a full time job working from home. This made managing my stress and symptoms a lot easier. I invested in a standing desk (which does seem to help most of the time) and continued trying to find ways to cope with my undiagnosed symptoms. I went to various other urologists and a pelvic floor therapist. The closest I got to an IC diagnoses was at the University of Kentucky where they told me I had chronic inflammation. After spending tens of thousands, and feeling no closer to finding relief, I gave up for a while. Dealt with the flares when they came as best I could.
Eventually, I had one flare too many and went to the ER to try and get some pain relief. There, I was given Ketorolac to treat the pain. Now, it's worth noting that I had been taking Aleve or Ibprofen once maybe twice a day and they didn't really seem to help. Ketorolac however would clear up the severe pain within about 20-30 minutes. It didn't get rid of my irritated urinary tract or general discomfort but it did give me quick pain relief for the worst of it and make me functional when took it. After relying on Ketorolac to knock out my severe pain for about a year, I finally had enough of the flare ups again and started seeing more doctors about 8-9 months ago. I went to see another gastro, whom found an ulcer in my colon, and with my other gastro symptoms decided to diagnose me with Ulcerate Colitis (which I'm now taking medication for along with avoiding trigger foods). Additionally, I went to another urologist whom looked at my charts and said "I think you most likely have IC". He handed me a bunch of info, told me about various possible treatment options. He told me to pick up some Prelief before eating anything acidic and take some Azo to relieve symptoms.
So now I've been trying for about 8 months to cope with IC and feeling that I pretty much have no hope of ever getting better. I've changed what I eat entirely. I eat a very bland diet in order to avoid triggers. I haven't really gone out to eat much at all in years because of how terrible I've felt. Overall, I still feel pretty miserable all the time. I still get severe flare ups. I rely on Ketorolac way more than I should, given it's not meant to be used for long term pain treatment. Honestly though, I'm just tired. Very tired of fighting this and not feeling like I'm getting anywhere. My two remotely comfortable positions are standing and laying down. Sitting is just uncomfortable for me and it stresses me because I'm afraid I'll have another flare up. Even with this, I'm still trying to do more research. I want to find some relief and that's why I joined!
To summarize:
My symptoms:
- Occasional really sharp belly pain behind my belly button. Excruciating when I try to stand up all the way or when I pee. Feels like someone is yanking on the back of my belly button.
- Constant urinary irritation, pain, discomfort. Especially after physical activity or sexual activity.
- Sore abdomen, could be from standing could be from this. I don't know but I can't sit for any length of time without being even more discomfort or causing I flare up it feels like.
- Urgency and frequency
- Gastro issues like gas, frequent trips for #2 visits (2-3 a day which is normal for my UC diagnosis and this medication I'm on).
- General lack of focus and depression from my other symptoms.
- Medications and supplements: Azo, Prelief, Lactaid, Saw Palmetto, Probiotic, and Mesalamine (for Ulcerative Colitis management)
- Distractions: I try to distract myself as much as possible from the reality that is my pained existence. This includes sports, TV, film, and especially games with my friends and family (be it digital or board based). At this point, distractions from reality are the only things keeping my sanity in tact.
- Walking: I try to walk as much as I feel able to do without my symptoms getting significantly worse.
- Drinking lots of water: I refill my bottle probably 5-6 times a day.
- IC diet: I've been on it for about 8 month but unfortunately it hasn't really helped with the general discomfort. I do think it's helped prevent more flare ups though.
- Research what else I should get tested for to verify it's IC and make sure it's not one of these many other possible conditions I keep reading about people finding they have after an IC misdiagnosis.
- Find something else to help with the pain besides Ketorolac. This means researching to find better doctors whom treat specifically IC and/or finding a pain management specialist. Either I don't know how to properly search for medical help or East TN is as dead a zone as I fear it is for medicine.
- Find support from people whom suffer from similar problems I have. Which is why I'm here!
Thanks! First time I've really written all of this down for someone else to read. It was kind of therapeutic in it's own way.
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