Daily painful abdomen

[TerriC]

I agree with comments above that you need to be seeing a CF GI doctor. They are the best at diagnosing and treating any type of GI issues. My daughter is 24 and has been dealing with the same problems for most of her life. The problem did start to become worse once she was in college and still to this day is fine in the morning and can be in complete pain by dinner time with a huge distended stomach. She has been hospitalized this past year about 4 times - the first time she was in for 2 weeks doing a complete clean out - (ng tube filling her up with golytely - 38 litres - a new hospital record) and she did not get completely clean. She takes golytely every day once in the morning and once at night along with mineral oil at night as well. She also takes a pill (sorry can't remember the name -that helps with emptying her stomach a little quicker). She was originally diagnosed with DIOS which is common in CF but we now know that along with DIOSshe alsohas intususeption (very rare in anyone over 2 years old and present in only about 1% of CF'rs.) This has truly been a very tough year as the pain associated with this is severe and require morphine once it starts. It can only be diagnosed by ultra sound while the attack is occuring so it can be very difficult to recognize. We are trying to figure out a way to control it and are doing several things including changing her diet to try and find out which foods may trigger an attack. We are also seeing a natureopath totry and get an outside opinion and some advice on diet. It's nice to finally know what the problem is but because there are so few people that have this problem we are practising trial and error to try and control it. Even our CF GI Doc. is at a bit of a loss as this is really unusual in adults. Courtneydid have meconium illies as a baby and we're pretty surethis also plays a big part in the problem. Anyone else have any other suggestions...we are completely open to trying just about anything.
Terri

 

[Printer]

TerriC:

Based upon my experience, and I hope LilLab will jump in here, if I were you I would google Steven D. Freedman, MD, PhD. He is at the Beth Israel Deaconess Medical Center in Boston. He is a GI CF Researcher. He is a regular presenter at the CFF Conferences. He only sees CF Adult pancreatitic patients and only on Fridays.

Bill

 

[Aboveallislove]

Thanks Terri. I'm so sorry to hear our your daughter's problems. But I really appreciate the advise. They did test for intususeption during his second ER visit. He also had a DIOS diagnosis about a year ago with go-lightly (sp?) and the CF enima. Not alot came out and I think they thought that mean it was blocked but an xray showed cleared which made me think again it was just building up on the walls and not a ton of stool. Will be seeing if I can get a ped CF GI consult, but I think we've got a good plan now that I'm pretty sure we've figured out what's going on.

 

[Swallowtail66]

I have tried it all...literally...right down to medicines for other diseases that cause loose stools. I have had numerous bouts of those fecal bricks and suffered the indignities of having to have the emergency room get them out with HOURS of enemas. I often looked 6 months pregnant. In January I saw another doctor and asked him to pretend I didn't have CF and to look for something else. He did a barium study and found a tortuous sigmoid colon. July 6th, the surgeon removed 1 foot of my sigmoid colon. I have continued taking my Amitiza, which previously helped, but did not cure, and now I can't stay out of the bathroom. I am ready to back off the meds and see if I can do this on my own. I don't know if years of constipation lead to the redundancy of the colonor if I was born this way. I am just happy to have it gone. What a blessing. There can be more wrong with you than CF and sometimes the docs get tunnel vision and only see CF. I will be very careful and protect my new length of colon, but what a joy to feel like I am not constipated every moment of my life!!!

 

[Aboveallislove]

Thanks. We actually already had a barium enia study to look for structural problems and no issues. But appreciate the thoughts. Hope you continue to feel better and can ack off meds.

 

[rheamc]

I too saw Dr Freedman in Boston and agree with Bill. He is great! It was a relief to finally meet a doctor who understood what I had. I am on Miralax everday and I cant' believe I didn't know about it sooner. Bill, if you ever hear of Dr Freedman speaking anywhere I would be interested in hearing him. I live close enough to Boston that I would definitely drive to hear him speak. Patty

 

[TreasureGoddess]

Please ask the CF GI doc about adding amitiza to the med plan. It's been a life saver for my kiddo. It helps pull liquid into the digestive tract and doesn't act as a laxative, but does help move things along. I second the idea to talk with a CF GI specialist for sure!

 

[LittleLab4CF]

Indeed I will chime in here. Sometimes you just have to go see the best of the best. Dr. Freedman was head of Beth Israel’s Pancreatic Center, and may still be. I think he saw so many older adults with confirmed idiopathic pancreatitis that consistently showed to be late diagnosed CF that he had to join in the research. I don’t know if they still do this, but after responding via email to the Pancreatic Clinic, I got a call from a very competent associate who had a few more questions, the appointment was made and I was off to Boston with my wife.
I was immediately diagnosed with severe idiopathic pancreatitis. I had only seen maybe 18 GI docs multiple times, including the Mayo Clinic in Scottsdale AZ. over twenty odd years. All needing to apply for a refund on their medical educations compared to Dr. Freedman. My wife of then 20 years was there to credibly insure alcohol was not on the possible list of causes of my pancreatitis. With a new record for bad on my pancreatic function test, he suggested I may have CF. Like a bolt from the sky fifty one years of darkness was lifted. Looking back on it, an outsider would be confused to see me tickled to have a diagnosis of CF, but a life of uncountable tests, MRI, CT scans, I had seen a doctor, of one variety or another an average of once a week for years, and though I was still sick, I was able to tune into what could be done, and what was a waste of my time. Dr. Freedman is sure to make you feel better by just seeing you. He is a true healer, there isn’t any magic or voodoo, it is a connection that will be made, if only his genuine understanding how horrible it is to be in medical limbo. Printer gave you the information to contact Dr. Freedman. He does this when in his judgment, and I concur you need more than what a really good doctor can resolve. We don’t wave his name around casually some problems just won’t be resolved by anyone less than Dr. Steven Freedman.