I’m at my wits end. I would cry non-stop except that I just don’t have the energy. Every now and then, the frustration really gets me and I let out a few tears. Three times… three miserable times! I have been admitted into the hospital in less than a year. The first time was really rough, I went through major surgery, my surgeon went through my small bowl three times, I was in the hospital for two weeks… but I thought I was cured. For 7-8 months I felt wonderful! I had energy I was able to go to the bathroom like normal. Life was feeling great, I had no idea what being without pain was like!
Then it came back, started off small… I kept thinking that it was just a fluke – that I needed to just be better with my diet again because I was going off track. Then a few weeks went by and I was bloated up bad. I couldn’t go to the bathroom. Enema’s and other things the doctor made me take just wouldn’t work. Even if I did go, it was bad the very next day. My X-rays showed I had no water or air in my bowels again!
Admitted for the second time, to be put through the ringer with everything that the doctor could think of the clear me out. It was torture! Can you imagine having lost all control of your bowels with an IV in your right arm and you are right handed!? I begged to be let out the next day because I couldn’t sleep or eat and I couldn’t drink another laxative without spewing my guts out.
Not to long after, I go to see my doctor because my stomach is so bloated that everyone notices. The nurse sees how pale I am. The doctor notices my pain. I’m doubled over, no matter what I do nothing makes me feel better. I’m sweating and my pulse and blood pressure are high. He admits me to the hospital… again. This all happens even though I have been taking stool softeners and Miralax every night.
More tests…. more torture. The Gastro doctor on call for the weekend is a complete jerk. He comes in, acting like I’m just a liar about everything and I need to eat more fiber. He thinks this because I have already been in the hospital for a day and haven’t been fed any real food… plus I had pain killers so I’m not crying in pain as much so I guess I just don’t seem sick to him and he doesn’t care.
As soon as he leaves I break down into sobs. Like I haven’t been told that all my life. As if I don’t have a diet plan with fiber and other healthier things.. He is the reason I gave up on doctors for so long. He is the kind of doctor that prevent me from being able to be open and talk normal with a doctor. He is the reason I lost all trust.
My PCP is a wonderful doctor and I hate myself for not being to talk to him well, because he listens and for that I’m grateful.
Jerk doctor runs a test on me anyway. Then comes back to tell me everything seems normal and I don’t have any signs of an IBD. Thanks doc, glad I don’t have that but you forget that I still have a problem. The only tests to have shown anything weird is my Albumin levels were VERY low, this puzzled my PCP doctor. The jerk doctor acts like it is no big deal and that I just don’t eat right. (Um… I eat plenty and I love my meat!) Then my thyroid was a little low. PCP plans to run more blood again in clinic, plus he already ran the test to show I was not malnourished.
My PCP comes in and doesn’t really have more reason to hold on to me but he seems hesitant to let me go. He tells me he will let me go home if I eat a full meal and have no problems. I eat the meal and say I’m good.
It hurt to eat it, but I don’t puke.
I need rest. I keep having bathroom trouble because of all the things they made me drink for the tests. I don’t get to sleep because I’m up all night running to the bathroom. I send a message to my boss that I’m going to be out until Wednesday.
Next day, I’m awake at 8am despite not sleeping all that well. I get up and feel okay just sore and I ache a bit. I don’t feel hungry though, not for a long time. One o’clock comes and I think I need to probably try to eat. I get dressed and go to get some chicken or something easy enough on the tummy, then drive to my grandparents to talk with them while I eat.
The pain starts. That burning ache that just gnaws at my stomach. It is small at times but always there, then it gets really painful for a short bit before going dull again. I can hardly sit up and I don’t want anything to touch my stomach. I’m miserable.
I do the things that jerk doctor tells me. I eat even more fiber (getting fiber one bars and such) and I start to drink a tablespoon of olive oil after I eat a meal. All day no urge to go to the bathroom until 11:15pm. I feel a strong urge but once I get to the bathroom, not much comes out and I still have a feeling of needing to go.
I will give it time. I will try, but I can’t help but feel lost and depressed and on the verge of giving up.
Am I doomed to live with this constant pain? I know it is nothing like the severe pain that many people have. That compared to people with a horrible diseases I can still function most of my daily life. However, though the pain remains dull most of the time, I will have bad episodes like that Friday and there is nothing to be done. No one cares and the longer I go without trying to do something about it, the more likely I’m going to have more episodes like that closer and closer together.
This pain, it makes me mean. It makes me not care about my job as much. It makes me so tired that when I get home I don’t have the energy for anything else but to take a shower and go to bed. It makes me depressed and weepy. Yeah, I can go to work. Yeah, I can still eat most of my food. Yeah, I can have good days, but can you really call this a life? When it takes all of me to be able to just get through my job. When waking up every morning gets harder and harder because I don’t look forward to pretending to be okay, to deal with my pain and to be surrounded by people who just don’t care?
So yeah, I’m at my wits end and I have no idea what to do anymore. I’m sorry for the completely depressing post.