Is it Diverticulitis or IBS?

How do people research doctors anyway? I do it by: Education, Hospital, word of mouth and online articles (such as ProPublica's Surgeon Scorecard). ProPublica is terrific. Provides thorough details on why and how they rate surgeons. The Scorecard is only for MEDICARE PATIENTS FOR about 6 COMMON SURGERIES (KNEE REPLACEMENT, GALLBLADDER, HIP, SPINE etc.). They use Medicare data based on sample size of 17,000 surgeries. This was excellent for my research on TKR. But the data is only for 2009-2013. I do wish they would perform their studies again.

Also when it is said Gallbladder surgery can be affected by prior abdominal surgeries - does that include vaginal child birth (probably not), Hysterectomy/Oopherectomy?, Abdominoplasty? I am interested in scar tissue or adhesions from these former procedures.

And when surgery reports say "No Complications" - what does that include? During gallbladder, if a small intestine is nicked or touched - is that a complication if nothing serious results? I guess we don't discuss ophthalmology in this forum but .... Following Cataract surgery on one eye, if pupil in new eye is a bit larger than the other eye, is that a complication? If the eye lid now has a very slight droop, is that a complication? If there is a tiny indentation (not quite a scar) by the brow where I assume a tool was used, is that one? Surgeons says no. I say yes. What does one do? Call in the FBI? or live with it if it is nominal (which means perfection seems not to be a goal)?
There are no simple answers, are there?

@tennisgolf Thanks for the info on ProPublica, I had not heard of that before. I generally check healthgrades and vitals but only find them credible if there are numerous reviews. Locally there is a yearly edition of a magazine that names doctors that many people have voted best. These days I rarely use local doctors though but I also ask friends and family about doctors in Boston.

You ask some intriguing questions to which I have no answers.
JK

You are correct... there are NO simple answers usually... but second opinions should be a must for almost any surgery, except emergency,..... I live in a University Town in Iowa.. but my background as a professor has taught me that a review of literature (Read a lot from credible sources) and Opinions are part of that review is necessary to find even the way to attack a problem. Science is ever-changing but I believe in Science that has been Peer Reviewed. When I go to my local clinic... which is very large... maybe 75 physicians ... I get my second opinion from the Mayo Clinic.. but places like the Cleveland Clinic... or Boston General... or John Hopkins...or M.D. Anderson in Houston.... are certainly credible ... I like Mayo (Rochester) because they have a whole different approach to "time spent with the patient".... Mayo generally pays their physicians in a manner that is not so competitive, it was explained to me...but Mayo has its own Medical School etc... Even when your local doctor suspects something... get a referral to Mayo... that works best initially... Mayo even has an Emergency Room... Good Luck...

I am replying to my own post. Currently I believe I am considered a problem patient. I have asked several times for a CT Scan and think I am getting it next week. First they need to take (another) blood test. IS THAT A TYPICAL REQUIREMENT? My Laparoscopic Gallbladder surgery was 8 weeks ago and I have complained over and over about pain in lower left abdomen (~ 3 inches left and 1 inch down from belly button). During GB surgery a naval hernia was fixed (although it never bothered me and did not know I had one). My incisions are fine; no fever; no weight loss, so nausea - so my surgeon says "You are fine." BUT I A NOT FINE. Could that surgery have caused problem in small intestine? colon? strangulated organ? could there have been scar tissue from prior surgeries (30 and 35 years ago - total hysterectomy/oopherectomy or abdominoplasty) that suddenly cause a problem? Since surgery I have met with GB surgeon, internist, and gastro. (he wants me to take more laxatives to make passage easier). All have different ideas. But I am thinking Diverticulitis or adhesions. It hurts every day. BMs have been totally unusual in appearance and varied for 7 months. When I strain for BM, I find if I push my hand hard against my belly, it helps relieve pressure and soreness so I can strain effectively. I told my surgeon 1 wk. post op that I could not "push" as well. No comment. Sometimes they do not listen.
I wonder if he has delayed the CT Scan for a reason? Perhaps so more time passes since surgery so it does not reflect on the surgery? As you see, I have become untrusting, disgruntled and am annoying my medical professionals with my questions. I feel disgusted. GB is supposed to be an easy surgery. Overall I am and have been a healthy, active, and engaged "senior". I had TKR 7 months ago (my second one) and that has been quite good - still working a bit on leg exercise.
For a year I have had a dental abscess (not painful or problematic at all - but Prosthodontist wants it fixed) - am in the midst of dental implant - so my poor system is being taxed. Anyway, I just feel medical folks are stalling. I need a patient advocate. Time may be of the essence. Any comments (pro or con) are welcome. Thank you. (Also, if CT scan indicates I need surgery, I do not think I should have the same young surgeon do it. I should go to a BIG hospital in nearby N.Y. City. What do you think?)

@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.
JK

OH MY... there is someone else!! I really hope you see this as it has been a couple of weeks since your post. Although, you may not be happy hearing from me - I have had a similar experience.. s/p Gallbladder surgery - no, you are not crazy!!!!!!!!!!! (although get ready to be told to see a psychiatrist 🙂 ). There are some things you said that sound very similar to my experience. First, let me say that I think there is a lot that the medical community does not understand, especially in the GI world. If you have a "standard" problem, that goes as it should, you will be okay - gallbladder issue, polyp, Chron's or one of the main diseases, Cancer.. this sounds bad, I'd rather have a diagnosis with an answer! But - anything "off the beaten path", it's very hard to find anyone interested. Tests, surgeries, those make money.

I was healthy and very active - professional career, did triathlons, 1/2 marathons, full life, until the GB issues and what was supposed to be a 'simple' surgery. Right after, I developed severe abdominal pain. Also on my L side - main locus is at umbilical area, it is very localized and sharp. The surgeon was no help. I was fine, according to her. The internist I was seeing said I was constipated, and take Miralax. That didn't help,in fact, in made me feel worse. The only difference with me was that my pain was severe. I would be curled up in a ball and crying. Finally 8 months later she referred me to GI Dr. I had a +hematocrit (blood in stool) and had colonoscopy/endoscopy the next day. Dx was Gastritis, and I was given proton pump inhibitors. I was never really told where the bleeding was from - I suppose the stomach?

11 years later.. the pain is still here. What really strikes me is what you describe for relieving it - pressure/pushing on it! I feel so strange, but this makes it feel better - I actually lie on my stomach on top of towel rolls, tennis balls, foam rolls to put more pressure on it Hasn't made it go away, of course. I totally "get' what you mean about it feeling like a muscle spasm almost, but deeper. I've had multiple diagnoses. For a time, they even tried treating it has a musculoskeletal problem, I've had many trigger point injections, months of physical therapy without relief. I always thought it was "deeper". And I also have GI issues, constipation, diarrhea, nausea. But for a decade, no change in the sharp mid gut pain. I've had hernia surgery/incision repair, a hysterectomy. No change, in fact, it's gotten worse over the years.

I just had a work up at the Mayo Clinic. My colonoscopy was normal (I've had 3). I do have significant diverticulitis, but that is not painful unless they get infected (so they say), otherwise that is normal. I had an endoscopy and have bile refluxing into my stomach, with inflammation; and SIBO. He thinks this is "normal" and sent me to a dietician who didn't even know what SIBO was, let alone the diet one is supposed to be on.

So, I have some more info, and now I will look for a Dr. who specializes in SIBO. So far, there seems to be a center a Johns Hopkins, unless anyone reads this and has any suggestions. I'm also going to pursue what can be done about the reflux, because it hardly seems "normal" to me, and the burning in my stomach area tells me it isn't either.

So, I have no answers, but some unsolicited advice/comments. 1. I was perfectly normal GI-wise (except for gallbladder symptoms) until I had this surgery. 2.Seems clear to me that this is a result of the surgery (not suggesting the surgeon did anything wrong, maybe it was just happens sometimes, but no doctore will ever "go there", they must think you are going to sue or something. 3. You won't get anywhere with the surgeon - not the same one. Once the surgery is done, they are done. 4. You will have to be assertive, seek out and ask for help, and do it. 5. DO NOT accept "you have to live with this", if a doctor can't help you, or doesn't seem interested, or says you have irritable bowel syndrome (i.e. they don't know), move on. I've lost 10 years of my life. Things worsened to the point where I couldn't work. I have trouble eating, lost a lot of weight, and am tired and weak all the time. I've decided I have to keep going on my quest to try to find an answer to what is causing my pain, because living like this sucks.

There must be other people like you and I out there. I don't know. Yes, see a GI doctor, but you'll have to find one who will listen to you and take your problems seriously. I'm wondering, since you say your stool may smell like "iron", have you have it tested for blood? Do you have black , tarry stools? I did, but never saw blood in my stool since my bleeding was from upper GI tract.

Intuitively, it seems to me that when they do these laparoscopic surgeries, who knows what can happen when they put all those cannulas in. On the other hand, if you were having stool changes 6 months ago, maybe something was starting then.

I'm curious to hear about your story and how it unfolds, because you are the first person I've "met" who has described this kind of pain that feels better by putting pressure on it.

You need a colonoscopy for that diagnosis, it's the only way they can see it. Also, diverticulitis is not considered a "problem" in the sense that it is painful, or a GI problem. It is only when the little pouches get infected and become diverticulosis that it is a 'medical problem' they will do anything about.

Hi TennisGolf

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.

@elle1233 , Diverticulitis is the word for when the pouches become inflamed and infected. I have had so many times I cannot count.. diet doesn't keep it from happening. Since the bad bout I had a couple of years ago.. which I did not have the classic symptom that time of left side pain; it was throughout my lower abdomen... I have been tender in my lower abdomen. The pain gets very bad when I get a gassy stomach. Nothing helps the gas and I was told after my last surgery at the Mayo in Jacksonville that no medication will help rid me of the gas.. but I still try the meds for it. Sometimes it helps a little. Walking, heating pad and massages help. With me pressing on any part of my lower abdomen hurts.

I actually thought when I had the bout of diverticulitis it maybe was adhesions from my hysterectomy or maybe a fissure. I had a pelvic exam to make sure and then a MRI... which the pockets showed up and inflammation. So yes it clearly shows on an MRI. Thickening also showed and I had a colonoscopy to check that out and there was no cancer. Instead of the couple of pockets I now have them throughout my colon and more likely to get diverticulitis. Thankfully I have not had another bout for a while.

So far no SIBO or auto immune disease. I have to go to the Mayo for all my upper abdomen, stomach, and esophagus issues. My local GI doctor is very good, but he says they changed me so much during the last surgery that he is not comfortable handling it. He still looks after my lower abdomen. I think soon he will retire.. he is in he mid or late 50s, but I think he will retire early and I will probably have the Mayo handle it all if they will. I am only 5 hours away, but hate the drive.

@elle1233 - your pain story sounds very similar to mine. Before GB symptoms and surgery I did not have any GI problems. Since then there has always been something, on and off. There was reflux, treated with PPIs, and also specific pain that could not be identified. Years passed like this until pain became very severe, especially after meals. I did the same thing- curled up, heating pad, screaming.
At the same time I was diagnosed with collagenous colitis, autoimmune. This was a different entity and was treated on and off.
I had every test known to man, more than once. Eventually these tests were reviewed by a new GI who found evidence that I had compression of celiac artery by a ligament, median arcuate ligament. This causes severe abdominal pain, especially after meals- like angina of the heart. After a confirming CT angiogram I had surgery to release the ligament. This is called Median Arcuate Ligament Syndrome- MALS. There is a MALS group on Connect too.
I also feel like I have lost 10+ years of my life from a combination of the celiac artery compression as well as an inadequately treated autoimmune illness.
As you see, abdominal pain can have unexpected causes. Keep looking!