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Replies to "I am replying to my own post. Currently I believe I am considered a problem patient...."
I just wrote a reply to your first comment.. and again I'm excited to hear you describe your problems, because I have experienced the same thing .. and still am after GB surgery, and have felt so alone. However, sad; because it has been 11 years, and I have no answer yet. FYI, I am 58 now, and was 47 when I had my gallbladder surgery. I had no prior abdominal surgeries, and have not had children.
What really strikes me is the kind of pain you are describing. Mine is a little higher than yours, but very similar.. just to the left of my naval is the center (although now it spreads out to general lower abdominal pain, and also upper left quadrant. But there is that sharp, localized area. Also interesting, is that the biggest aggravating factor for my pain is having a bowel movement. On the rare occasions that I have a "normal" or larger BM (sorry, GI discussions get graphic 🙂 ), it really flares up that pain. The pain is always there, has been for 11 years, it varies in intensity from level 2 (rare) to level 9. I have spent as much as a week in bed/on the couch. Like you, I was very active prior to this, and don't consider myself a "wimp". This pain is bad. I tore my rotator cuff, had that repaired, went through all the rehab – nothing compared to this. And – at least there was an end.
Like you, it feels like there is something "restricting" things, or being pushed, pressed on. I also find pressure on the abdomen helps me "go". In fact, I feel better wearing tight "girdle" support undergarments, and even will take a large ace wrap and wrap it real tight around my abdomen. It feels like I'm supporting my colon.. so I know what you mean. I don't know if I am. I am 5'5" and weigh 95 lbs now, so I am very thin. I've bought various back support things that I wrap really tightly around my abdomen, and that helps. In fact, as I type, I have a heating pad on, over which I wrap this 6" wide velcro strap as tight as I can, because this feels good. This is how I spend all my evenings.
I think ruling out diverticulitis can't hurt, although FYI, diverticulitis isn't supposed to cause pain, only when they get infected and become diverticulosis (I think that is what that other person is talking about). I have significant diverticulitis in my sigmoid colon but Dr. says that is not cause of my pain. I've thought about adhesions like you, but my pain, like yours, started right after the surgery, I think adhesions might take awhile to form. Although you could have some from the past that got aggravated.
Don't feel bad about the reaction you've been getting from the medical community.. I've been getting it for 11 years. I'm a little depressed b/c I just finished up with another round of testing/consults at Mayo, and Dr. is saying it is irritable bowel syndrome. I still think something is wrong. If it is IBS, my bowel has been irritable for 11 years. I've done all the meditation, yoga, deep breathing, all that business. I don't know, maybe if you get really good at meditation it can help, but IMO, it doesn't really help pain that much.
Interesting you bring up the small intestine.I had a motility test, and my small intestine is very slow. Dr. Said , doesn't matter. My colon is supposedly normal. However, I also have SIBO, which according to the literature, is common with slow sm intestine motility, so seems like it does matter! Then he says, well, he doesn't think the SIBO is my problem, because I should have diarrhea. But, according to other centers, and the literature, people with SIBO can have constipation. I'm so frustrated that I came to this supposed #1 GI center in the country and the Dr. doesn't seem to understand this issues more than I do. I think these younger Drs. just learn some "rules" and then can't think outside the box, like you do sometimes. After 11 years, I've done a lot of research (I don't mean to sound like a snob -but I have learned quite a lot.
Like you, initially they kept giving me all kinds of laxatives, blaming everything on constipation. I don't think I was constipated initially, but I do seem to have developed a problem with it. I think all the laxatives made me dependent on them. Geez, one Doc had me doing colonoscopy preps a couple times a month. It didn't change my pain one bit. Just made me miserable and lose more weight.
The only thing that seems different with you, is having the bowel changes before. I would think a doc would find that significant. I agree, it's scary – the medical system these days.
And you do need a patient advocate.. sadly, no such thing exists. you have to be your own. Don't feel bad about being a "problem" patient! I'm sure I'm viewed that way, but it's the only way you'll get help! Turns out, by "problems" are in my small intestine and stomach (I mean the abnormal things on tests), found by endoscopy, and the only reason I had one was b/c I asked for it! The Dr. wasn't even going to do that, and I would have missed the only thing he's treating me for.
So, I know now not to waste my time with a Dr. that doesn't have anything to offer me, or who doesn't know more than me. I do have another idea based on a CT abnormality that the Dr also said "isn't a problem", but fits in with my symptoms, so I'll be taking it to another Dr.
I figure, I have no life anymore b/c of this pain (and now constipation/accidents), so I might as well spend it trying to find a solution. I'm eager to hear what, if anything you find, b/c it might help give me some clues.
It really drives me crazy that they blame so much on constipation. I always knew my pain wasn't related to that, and it isn't now. Being constipated makes me or anyone more uncomfortable, but I have pain when I've had diarrhea for a week. For some reason, they keep giving me that diagnosis. So.. you hang in there.. keep asking for tests and answers.. and if you don't get any… go elsewhere. And, if laxatives help you, take them, but if they don't, throw them out, because like me, it's crazy to think pain that starts immediately after a surgery is caused by constipation. And if you keep taking all that stuff, eventually you will become constipated without it. I know that's what happened to me. Look forward to hearing your progress.
Sorry to hear about your problems. You know your body best. They will never admit to a problem having occurred. When I had my gallbladder surgery via laparoscopy they did something around my belly button, as I have scars. Maybe, bc you had issues around the belly button they had to go a little lower to do the tool where it usually goes in at belly button. Something was definitely affected and perhaps a muscle if it's affecting pressure to eliminate. Just a thought. Wish you well in your continued efforts to seek the truth. I'd try an MRI vs CT bc I think it will show more soft tissue damaged if there is some.
@tennisgolf I personally will never again not get a second opinion from a larger medical center. For me that is Mass General Hospital, generally. If you, I would definitely at least get an opinion in NYC. Which specialty would you be looking for? I had a great gastro who is now in NYC at Columbia (Presbyterian?) but they all seem to have specialities within the overall umbrella of Gastrenology so I don’t know if he would be the right doctor for you. I went to him for Barrett’s Esophagus. I had endoscopes with him and colonoscopies. His name is Dr. Chin Hur.