Some Advice Please

Edited this incase anyone can help.

Hi, I normally post in the lupus forum but I posted here a while ago about some really bad problems I'm having with constipation and severe pain. I have had a colon transit test done (results showed extremely slow transit) a defecating proctogram (result showed muscle problems of internal and internal anal muscle) and recently had a flexible sigmoidoscopy (which was normal apart from a slight narrowing). I'm waiting to see the consultant for a follow up and what to do next. I was wondering if there were any tests I should be asking for? or anything that would help me in the short term. I'm in extreme pain most of the time, going about 10-14 days without a bowel movement. My stool is always soft though. But lately after having a movement I've been getting pain worse than ever before. I'm generally doubled over and it comes in like pulses of sharp pain on the lower left hand side and extreme pressure in my bottom and pain in what I think is the bones under my bottom??. I also feel the need to go really bad for the next couple of days, although if I do go it's a very small amount. I've been quite ill lately with my lupus and I could really do with some let up from this while I recover. I take tramadol for my lupus already for pain relief. Any help would be gratefully appreciated. I know Keriamom you answered my last post but anyone else with any suggestions also would be good. x x

Sorry to hear of how badly you're feeling. How awful! Have you ever had abdominal surgery - like a c-section when you had your daughter? Or a history of any endometriosis? You sound an awful lot like me, and my entire problem is due to adhesions - scar tissue - on my intestines. All it takes is one band of scar tissue in the wrong place, and yeah, transit time is greatly compromised or stopped altogether with a full obstruction. And yes, it hurts like H-E-double-toothpicks.

Unfortunately, scar tissue (adhesions) are usually only diagnosed on yet more surgery (laparoscopy). Since they are soft tissue, CT scans and MRIs and x-rays usually don't detect it. I'd just about bet money that is your problem. Good luck finding a surgeon to do the surgery though. It's a double-edged sword because more surgery can cause more adhesions to grow, and some people end up in a vicious cycle of surgeries - depends on the surgeon. With as much pain as you're experiencing, you just might be able to convince a surgeon to take a peek via laparoscopy.

Been there, done that too many times to count. I've been very lucky to be with a great surgeon for many years now, so I'm in pain management and we just wait as long as possible before going back in again. So far, I've gone over a year since my last surgery, and hope to never have another one! The only way I'll go back to surgery is if I have a 100% bowel obstruction. Looks like I got sidetracked off your question - sorry!

Anyway, bring the topic of adhesions up with your doc and see what happens. Bowel adhesions can really wreak havoc on a person - just like you're experiencing.

OMG! I am appalled that with your surgical history, your doc hasn't even considered adhesions. The more you tell me, the more I'm convinced that's what is causing your problems. Also, having a documented history of adhesions from your surgery 3 years ago shows you're prone to them. They don't actually "remove" adhesions - they cut them to release whatever they're attached to - and when they attach to bowels, you bet they can cause intermittent, or partial bowel obstruction. Yes, if they are on your sigmoid colon way deep down in your pelvis, sex is about impossible. Having a BM, as you well know, can be excrutiating. Before your next appointment, gather as many of the written surgical reports as you can get your hands on, particularly the one from 3 years ago that documented the presence of adhesions and make sure your gastro doc gets a copy of them. No wonder he noted a "narrowing" on your flex sig procedure. Hellooo! Adhesions are just like having rubber bands wrapped around your internal organs.

Adhesions are a normal part of healing, and anyone who has ever had surgery will have them - just like getting a scar on your skin with a cut. Most people never have a problem or even feel their presence. In other people, adhesions continue forming even without any obvious injury or inflammation present. I'm one of those people, and am now on the 75 mcg fentanyl patch with 10 mg hydrocodone for breakthrough pain, and phenergan for the nausea and vomiting. I haven't been able to eat normally in years and stay pretty much on a liquid diet. Yeah, I'm the Smoothie Queen. You can maintain good nutrition with a liquid diet, but it sure does get boring. I can't use fiber for regularity - anything that bulks up in my intestines is just too painful.

You aren't alone! Get your documents together and present your case. Hopefully a quick out-patient lap will get you better. {{{{hugs}}}}

You are so very welcome! I didn't realize you were in the UK so I'm not familiar with how "ownership" of medical records goes there. In the US, everything except the doctor's notes belongs to the patient. I definitely think the adhesions angle is worth pursuing in your case, and if you can, try to get referred to a general surgeon and not a gynecologist for the surgery. A gyn will generally just deal with the area around the female organs, but a general surgeon will check everything in your abdomen. In the meantime, you might try going on a mostly liquid diet and see if that helps your symptoms a bit. I can't wait to hear back from you after your next visit!