Nov 25, 2010
25 November 2010
This is my first entry on MedHelp, a website I have been secretly visiting for the last year. I have had one medical problem after another for the last year, which has pretty much set me back mentally and physically.
To give a list of my diagnosed problems, to date:
1 August 2009: emergency cholesystechtomy; necrotic gall bladder, both infected and full of stones; according to my surgeon, in the 17 years he has been operating, he had never seen anything like it
Late January 2010 (forgot the date): incisional umbilical hernia repair (from lap chole, due to having to extend the umbilical port because of the size of my gall bladder)
3 May 2010: emergency ERCP and sphictorectomy
Late July 2010: endoscopy and diagnosis of chronic gastritis
Until 1 August 2009, I have never had surgery, nor had ever had anything worse than the occasional sinus infection or the passing flu. Therefore, for me to have had three surgeries within a year, and to now be facing chonic problems (which I will list later) is a bit of a surprise and mental let down. Oddly enough, though, I spent today chronicaling my current list of medical ailments because I 1) have a tendency of forgetting all of them when I go to the doctor, and 2) because I have been going to the doctors without a definitive cure since July, and my syptoms keep getting worse, I wanted to compile a list and compare it to various illnesses and diseases in the hopes that it would aide my doctors in looking in the right direction. Yes, I am impatient to an extent, but I'm not trying to rush my doctors nor diagnose myself; I'm, more or less, trying to lessen the feeling that we're all flailing around in the dark, waiting to hit something, and - when we do - praying that it wasn't the good china.
So, here is the list of all of my current symptoms. These are not given in any specific order; I basically wrote them down as I thought of them. I will say, though, that the weight gain, abdominal pain, and neck pain are my three biggest concerns; I'm adding the neck pain to my list of concerns because I'm beginning to think that this is all coming back to my thyroid.
* epigastric pain - not consistently localized, but it is more constant on the right. The pain has pretty much become constant now, and will go around to my back (center) and up underneath my shoulder blades when a severe "attack" or episode is occurring.
* feeling of a knot or ball slightly left of center and slightly lower than the epigastric region of my abdomen
* the epigastric pain will drift down the front of my right side - this is hard to describe, but I can only come up with it being a hollow sort of pain, or a cross between cramping and sharp. This pain does come and go and I haven't figured out what triggers it.
* abdominal itchiness - predominately center in the epigastric region, but it does drift to my cholesystechtomy incisions and down the sides of my navel (where I'm pretty sure the mesh was added during the hernia surgery)
* nausea - this is pretty much constant, but it is only rarely that it has actually gone to the point of feeling like I will vomit. I cannot stand to vomit, so, thankfully, I've been able to talk myself out of vomiting the times that I feel like I will; however, the constant nauseousness is bothering me. Lately, it has been getting worse after I eat or when I sit down to eat something.
* extreme amounts of gas - and it is always loud. My doctor put me on Levaquin last week because my white blood cell count was going up and down, but staying constant in the infection range; she couldn't figure out what is infected - as I had an abdominal CT and ultrasound, neither showing indications of inflammation or infections - but was concerned there is one. Since I have been on the Levaquin, my gas hasn't been too noxious smelling; however, before taking it, my gas literally smelled like something in my body is rotting. Which is strange, considering my next symptom...
* loss of appetite or not feeling hungry - I have been eating because I am on Percocet, Levaquin and Phenegren; however, I'd just as soon not. I may get a craving for something, but when I actually sit down to eat it, I don't want it. As of today, the only thing I can eat and either not get grossed out or feel nauseous during or afterwards is Pop-Tarts.
* neck pain - I've actually had this for a long time and always chalked it up to the wrong pillow or sleeping "stupid". When it went away after my cholesystechtomy, I thought it was a side effect of that. However, it has recently come back, and I now know it is not related to the chole or because of my pillow (because it did go away and for the fact that I bought an excellent pillow designed for stomach and side sleepers). The pain tends to be in my lower cervical verterbrae, and it extends around the sides of my neck. It also radiates to the top of my shoulders - in the back region of the space between my clavicle and scapula - and also makes my upper lumbar vertabrae feel as if I need to "pop" them (when I try to do the latter, nothing happens). I also feel like there is some sort of swelling at the base of my neck, kind of best described in the region of where my neck and shoulders meet in the center. This isn't painful, but it really feels like it is squashing my trachea from the inside, making it feel funny in my throat and rather nauseous. I'm still swallowing fine, nor have I developed a raspy voice. Because I do smoke (less than a pack a day, normally, although it has increased as a direct result of all of the stress I'm going through because of this list and because I cannot work out to release the pent up stress), I do have a cough, but I realized a few months ago that it has nothing to do with my lungs. I've always thought it was because I feel like I have post-nasal drip, but I'm questioning that now.
* extreme fatigue and lethargy. This has become so bad that I can literally fall asleep at my desk at work, despite wanting to do my work. It just comes on for no reason. I also come home from work most days and take a nap. I'm pretty sure that fatigue is my body's way of telling me something is wrong, as it almost incapacitated me prior to ending up in the ER for my chole, and then showed back up again around the time that my umbilical region started to feel strange (leading me back to the surgeon who discovered the incisional hernia). Because there was no infection with the hernia, it is strange that I became so fatigued with it, therefore leading me to conclude that my body uses fatigue as a warning sign. Thus, I cannot say if it is a true symptom of a problem or if it is my body's reaction.
* night sweats - I've noticed that they are worse around the time of my menstrual cycle (especially the week before), but they are not strictly limited to that time. Some of them have been so bad that it has soaked my sheets.
* chills - these come about only when I have been sleeping on my back and upon waking up. They do not feel like flu or fever chills; instead, they feel as if my internal core body temperature has dropped. I will shiver with them, but it never does a thing towards warming me up. In addition, they make me feel as if it is colder outside than it really is.
* irregular or non-existent bowel movements - I have never been one to have a bowel movement every day; however, I am now down to only one or two bowel movements a week. My gastrointerologist suggest increasing my fiber intake, which I have. However, I told her that I make sure to eat a well-balanced diet and that I was already taking in more than the daily recommended value of fiber to little effect. Since my diet is horrible right now, I switched to taking Fiber Choice fiber supplements which, too, have had little effect. I have to take them for several days in order for them to produce a bowel movement. Laxatives and stool softeners have also have no effect. When I am able to have a bowel movement, I am not able to fully clear my bowels, which is usually why I end up having to go again the next day. But it is typically one week from that second day that I will have my next bowel movement. This has been going on for a few weeks now, and was a problem even when I was eating more than just Pop-Tarts; therefore, there is no correlation between my bowel frequency and how much I eat.
* When I can actually have a bowel movement, I get started as normal, but have to quickly resort to mashing my stomach, massaging my left side (descending colon region), or rocking back and forth (so my chest rests on my upper thighs and then moving backwards so my back is touching the toilet tank). If I did not do this, I would not be able to finish my business; I've found that no amount of forcing or straining will cause anything to move otherwise.
* After my chole, I typically had excessive diahrrea. Thankfully, this side-effect began tapering off as I learned what I could and could not eat. Every so often, it would come back, but I always was able to tell it was a side-effect from the chole. As of late, though, while my stools have been formed, they have been flat or ribbon-like. They also come out in short strands. After my chole, my stools were typically orange or yellow-ish, eventually moving to just orange tinged. They are now dark (but not black). They also always sink to the bottom of the toilet and basically mass together - sometimes to the point of clogging the toilet.
(I will add here as an aside that there are times when I'm glad that I'm still single and that the anonymity of the internet is worth praising...and this is one of those times. :D )
* Almost no bowel sounds. Previously, when lying on my back, my stomach and intestines would make all kinds of gurgling and bubbling sounds. As of about 2 months ago, the sounds changed into a sort of squelch or squeek and almost sounded painful (even though they weren't...they weren't comfortable, but they never hurt). And, as of about 2 weeks ago, the sounds have completely stopped. In fact, I might get my stomach to "grumble" (the noise one's stomach makes when hungry) once or twice a week.
* In addition to the sounds stopping, it feels as if movement has stopped down there as well.
* Every time I fall asleep on my back, I wake up having to urinate - and not just a normal amount. I wouldn't normally notice this except for the fact that I'm drinking more sodas and tea versus water (because the thought of drinking plain water makes me nauseous), which should cause my urine to be more concentrated that normal; yet, it is only a normal color when I do this whole sleeping on my back thing. While I urinate throughout the day, it is always faintly yellow, faintly yellow-green, and almost always clear; when I sleep on my back, it is actually only a bit more yellow, but still not as concentrated as it should be. I mention this strictly because I have a 5mm kidney stone lodged in between the lobes of my left kideny. It has been there for a few months and doesn't hurt (occassionally I may get a twinge, but I was told that it isn't the stone), but I can't help but think that there is something wrong - especially since, when I developed it, I was consuming almost only water throughout the day.
* EXCESSIVE weight gain and almost complete inability to lose it. While I've never been a toothpick (5'7" and will stay steady between 145-150 whether I work out or not), I have never been fat. My frame has always been described as athletic and I always carried my weight in my thighs, buttock and hips. When I weighed in for the chole, I was beyond floored to see that I was 200 pounds. I knew I had gained weight, but I had no idea that it had been 50 pounds. Because I couldn't work out much between the recovery from the chole and the hernia surgery, I wasn't too surprised to find that I was 202 when I weighed in for that surgery. Once I recovered, and regained my energy, I started working out again. When I weighed myself in late April, I found that I was only down to 197. But, when I ended up back in the ER the next week because of pain (thinking my gall bladder had grown back, only to find out the CBD was blocked and dilated to 12), I figured that was the culprit. So, three days after the ERCP, I was back in the gym. In June/July, I was down to 190, and in August, I was at 187. Late July/early August is when the fatigue set back in, but I didn't completely lose my energy to work out until September. So, imagine my surprise when, two weeks ago, I weight in again at 202. And then, a week later at a separate doctor's appointment, wearing lighter clothes than the week before, I weighed in at 206! I'm pretty sure I'm up to, if not over, 210 right now. And I'm not eating much of anything! Granted, I am not working out, but I do still force myself to go to my two dance classes for one hour each every week...so there is a small amount of physical activty. I should be losing something, but it only seems to be my sanity at this point.
* Joint pain. While I do have diagnosed chondromalcia in my knees and have dislocated my left elbow and thrown my right elbow out numerous times while playing softball (the knees being a result of softball and years of running), they normally do not all hurt at one time. They are also - minus my left elbow - never affected by the weather (cold or when the temperature goes up and down), so there is no precedence for them starting to hurt now that the temperatures are dropping. In addition, I have never had any shoulder socket pain before, and when all of the joints that normally hurt here and there starting hurting at the same time and then brought my shoulder sockets into the game, I instantly knew that this was a symptom of something.
* I also get numbness and/or tingling in my arms. While I get it in my legs and feet, it is more often than not the result of liking to fold myself up into a pretzel shape when I sit. The numbness in my arms, hands and fingers comes on, predominately, when I sleep. Since I sleep on my stomach, I stuff my arms under my pillow. I have been doing this for years and will only wake up with numbness when I have slept on it wrong. Lately, though, only a few minutes after placing my hands under my pillow does the tingling start. It also happens when I lie on my back on my couch and raise my arms over my head, regardless of if I lie on them or not.
* thining hair. This, too, has been happening for year. It's nothing drastic and is really only noticable to me and my stylist. The area that you can see the thinning (if I point it out; I style my hair to hide it) is above my forehead. Because I spent time on active duty in the military, I thought it was from pulling my hair back every day. However, when my hair started to thicken up following the ERCP, I was quick to notice the difference. Lately, though, I've noticed more hair coming out in the shower, in addition to being left behind in my brush and comb. I wouldn't have paid much attention to this in all honesty, unless my stylist had not asked me at my appointment yesterday if I had noticed my hair thinning out again. Apparently she was able to notice it immediately, strictly from just running her hands through my hair. I now know it is a problem.
* Edema - ankles and feet. While it is nothing major, they are swollen and, especially my feet, are starting to hurt.
* Abdominal swelling. Whether related to the weight gain or from water retention, I have no idea. All I know is that my torso has almost doubled in thickness in the past few months and, for the first time in my life, my stomach sticks out and forms into rolls when I sit down. The worst part is the fact that it feels like a shelf has formed underneath my ribcage, so that any time I sit down normally (straight back, feet flat on the floor), my ribcage and bra cut into it and exacerbate the pain.
Some things to add to this:
* I have a history of depression. While it has always been diagnosed as the result of a chemical imbalance, I'm beginning to wonder if it is - and always has been - an underlying symptom of something else. Especially since it has become worse with my ongoing problems - I have become almost incorrigable with my irritability; even I can't stand myself.
* I have had a few hemorrhoids in the past, but they were always attributed to weight lifting or cycling. Now I'm not so sure.
* I have had two abnomal pap smears, but they were 11 years ago. I doubt it is any relation.
* I do have a history of heavy periods, though. I was on birth control pills, which reduced their heaviness. However, with recent studies showing a possible link between the increase of birth control prescriptions in the early and mid part of the 20th century, and the increase in breast cancer cases by the end of the 20th century, I decided to quit taking them. Plus, I'm not sexually active and have always had regular periods, so I figured a day or two of cramps each month was far better than increasing my risk of breast cancer. Again, heavy periods may not be related, but I feel I must mention them because it is in the abdominal region.
Also of note: I have had my blood tested for just about everything through my normal physician. My thyroid always comes back normal, but the most recent test did show a BUN/creatine ration of 6:1, almost non-existent bilirubin levels in my blood (it actually said <0.1% on the read out), and small ketones in my urine.
What I am looking for at this point are the following:
1) What is the liklihood of me having a thyroid condition? I match almost every single hypothyroid symptom, but every time I am tested for it, I don't show the signs of it in my blood.
2) Any clue what sort of abdominal issue I am having? I know that my symptoms are the closest with IBS and adhesions, but I also see some linkages with other intestinal problems.
3) My GI doctor keeps saying this is all gastritis and keeps changing my medicine. However, recently I realized that the slight burning sensation that I got in my stomach - a pain that I really didn't notice because it wasn't much of anything - was what the gastritis is. When I had the endoscopy earlier this year, I had gone to the GI doctor because I gave her all of the symptoms above and she wanted to check my stomach out. It just so happened that as I was working my way through two heartburn medicines to find one that worked - noting that this took about two weeks - the pains stopped; therefore, I thought that the pains were gastritis and that they were treated by Prilosec. When I went back to the GI doctor as the pain returned, we both believed it was because the Prilosec stopped working. So she switched me to Nexium...which has done nothing to relieve the pain and simply adds to my nausea. Yet, a few days ago, I quit taking the Nexium for a few days, because I was tired of the extra nausea. When I woke up one morning, I noticed my stomach was burning slightly. So, I took the Nexium and about an hour later, it was gone. But the other abdominal pain was still around. Therefore, for the last four months, my GI doctor has been thinking my symptoms are gastritis when they are most evidently not. My question here is if there is any chance that these acid blockers are making me worse? I'm pretty sure the weaker stuff worked - like Zantac - but since I was being led to believe that all of the pain was gastritis and it didn't go away with the Zantac, that I needed the stronger stuff like she suggested. Now that I realize that the annoying burning sensation that comes up every so often is what the gastritis is, and that no matter how much of it I take, I will still hurt like the dickens everywhere else...I wonder if I should quit taking it. This one is a difficult problem for me to figure out.
Thanks for reading this and I hope to have much more positive ones in the future!