diagnosed with a lazy colon and a lazy large intestine

For years I was told that I had irritable bowel syndrome. In 2000 I was diagnosed with a lazy colon and a lazy large intestine. I was told that it was hereditary. Years of suffering later in 2004 I was diagnosed with cervical and uterine cancer. I thought that this was the problem and that it was resolved after my hysterectomy. I kept my ovaries in case I wanted to have another child of my own through a Sara get mother. In 2007 I started having really bad abdominal pains. I was going through a divorce and just blamed it on stress. In 2010 the pain was unbearable. I would swell up like I was 9 months pregnant every time I ate. No matter what it was or how much I ate. I went through every test every set of bloodwork and nothing showed up. After a couple of emergency room visits in late 2011 and everything showing just fine my doctor ordered a HIDA scan. The scan showed that my gallbladder was functioning at 3% level. So I had emergency gallbladder removal in april 2012. August 2012 I was having bad sore throats and was treated 4 times in two months for strep. Finally I saw an ENT who did a nose scope and bloodwork and told me I had mono and severe CFS. I Was told the only thing I could do was rest and let my body heal. I would have good days then bad days. Now, today I have had another episode, went to dr, ER and CAT SCAN bloodwork and urine are all normal. I called the gastro doctor to schedule an open screening colonscopy as I am only 35 and no dr will recommend one. I convinced my OBGYN to write a referral to do the colonoscopy as a preventative screening so my insurance would pay for it under the healthcare reform act as I do not have the $1500 deductible. I have been on all liquids for two weeks now as eating ANY THING hurts and I swell up to where my skin feels like it is going to burst. I have a horrible metal taste in my mouth, feel as though I have the flu, can't keep my eyes open because I'm so tired and it feels like someone has kicked me repeatedly in my stomach and all down my sides, my bones hurt and my muscles feel like I have been working out at the gym nonstop for a month and my hips hurt and are tender. But yet the CAT scan, my blood work, and urine were perfect at the ER last Wednesday. I pray they actually find something on the 6th so at least I know what is causing this all. Its depressing and something has got to give!!! A friend told me she has crohn's and that her cat scans and blood work missed hers. Do any of my symptoms sound familiar? I'm needing support and after years of pains and mid-diagnosis I'm praying for answers.

A couple of things sound familiar.

But first, I can tell you that the Emergency Room isn't a good place to try and get a diagnosis. Read the posts on here and you'll see what I mean. Most ER doctors couldn't spell Crohn's, never mind diagnose it. Crohn's doesn't show up well on normal blood work, other than some inflammation markers. You need to find a good GI that will do the right tests to find out what is going on. If the GI you have now isn't doing that, then find a new one. Doctors are like shoes, you've got to find one that fits you. The wrong one will just make you miserable.

So, the not being able to eat, and only tolerating liquids really sounds like the flare ups I've had. The inflammation in the gut swells up the intestine and makes it difficult or impossible for material to pass. Eating anything will trigger strong pain. Liquids often work, but there are times that even they'll cause problems.

The overall body aches and pains also sound quite familiar. Joint pain can be pretty common, especially in the larger joints. Hip, knee, shoulder and back pain are all common, at least for me.

Avoid the ER if you can. They'll just treat symptoms, if you are lucky. They won't really be able to do an accurate diagnosis if you do have Crohn's. You do need to find a good GI doctor, and a good general practitioner that will help you out.

Also, if eating solid foods cause pain, switching to liquids is a good idea. Just make sure you are getting proper nutrition. Last time I had a flare up, it took me about 6 weeks of liquids, plus a round of strong antibiotics to get things straightened out.

Hang in there...

I was sort of like you where I had been diagnosed with IBS and then years later found to have gynecological problems, in which the hysterectomy was going to give me my life back. Instead, I became sicker after the hysterectomy.

My ovaries were removed during mine and I went on HRT. Have you had any testing to see if your ovaries are functioning? It's not unusual for them to stop functioning after a hysterectomy due to trauma. I've known several women with some of your issues (not all) who had to go back and have their ovaries removed post-hysterectomy and go on HRT.

Hysterectomies can cause scarring and adhesions (I know personally) which can cause pain and other symptoms. I had one adhesion that made it where I couldn't stretch upwards. It was removed during colon surgery years later.

All that aside, it sounds like the colonoscopy is your next logical step, considering all the abdominal pain you're having. I hope you can find some answers. -Joy

Post Edited (JaSanne) : 7/30/2014 8:09:29 AM (GMT-6)

sounds like mast cell disorder/disease (not cancer) if it is not something else. These disorders are thought to be rare but they really are not....they are just hard to detect because they dont show up in regular blood work. The blood work needed is very time sensitive and most labs dont do them right. Most Drs. dont recognize it because it can effect every organ in the body. The organs where the immune system is most present such as the gut, seem to have the most symptoms because that is where more mast cells are found. They hang out there and dont work properly. Its like being chronically allergic to yourself, having the flu, achy bones- arthritis like symptoms in smaller bones, nauseous, malabsorbtion, bleeding issues, skin rash, constant swelling- non-pitting. The swelling is bad when you feel like your ligaments are ripping. Swoosh- massive diarrhea comes with stabbing pains. Afraid to eat ever again. fatigue hits like a hot wind. brain fog steals all your thoughts except those of despair.
How do you feel when you take antihistamines?
The kinds of drs who know something about this are rare. Usually a very smart allergist or a neurologist who deals with POTS, dysautonomia and is holistic.
Im not saying this is what you have but it is just another idea based on what you described. I sure hope you find out what it is.

After looking looking at my labs from the ER last week I have no idea why they did not tell me this but my WBC was high, my absolute lymphs were 4.40my absolute esophilis (?) were high and there was urobilirobin in my urine. All signs of a biliary tract issue or IDB. I learned that mono and CFS are secondary immune issues to Crohn's which is a IBD. HOPEFULLY they can tell me more after Wednesday. My FH and I are getting married in 56 days and I am so nervous as to my health and if I can even continue the planning. This unknown illness is depressing and costly and we have decided of they do not find anything Wednesday that after I am on his insurance and have two insurances that we will seek treatment out of town because I have no faith in drs on my area. Where is the best gastrointestinal institute? Something has to be done because this illness is making me depressed. I used to ex cerise and be very active now all I want to do is sleep or sit around and be lazy because I do not feel well.