Do I have systemic scleroderma?

[Candidam]

I am a female, 29 yrs old. My history is complicated, but I am hoping you can offer some suggestion. I have severe reflux, and chronic pancreatitis(not a drinker)for over 7 years. 4 bouts with the pancreas were severe enough for hospitalization. My gallbladder was removed just before the first bout of pancreatitis, probably causing the first case. Gastro said the gallbladder was extremely "sick" and the ducts were full of sludge. He indicated I had a 25% pancreatic enzyme deficiency and ordered Viokase 6 tablets with every meal. My diarrhea improved, but I had very little appetite and no improvement in the reflux or pain. Tried 4 different enzymes. I have had repeated scopes, cat scans, HIDAA scans, ERCPs, CF gene..all point to chronic pancreatitis. Also had a sphincterotomy and the pain was gone for 3 weeks, then returned. My radioisotope test showed a 210 minute clearance of food from my esophagus, yet the duodenal mamometry study to measure contractions was normal. My latest pancreatic function study shows "marked"  insuffiency. 7 day stool study showed "gross" fat malabsorption. So, even with the fancy tests and 7 years of suffering, I still know nothing about my condition, its progression and probable outcome. I have lost 29 pounds in the last three months. I am in severe pain and can't eat, which seems to bother no one but me. Doc has me on Ultram for pain (as I do not want to get addicted to narcotics), Lipram, Nexium, phenergan, estraderm (hysterectomy). Any idea what would cause this at my age? The slow digestion makes me "unviable" at the pain clinic. What now?

[Candidam]

Cont.. sorry. I forgot to mention the following:

I have had a negative reaction to Reglan and cannot take Propulsid since it off the market.  I also have had a negative ANA test, negative Lupus test, and negative Cystic Fibrosis test.  My other medical problems are a congenital Ventricular Septal Defect, Interstitial Cystitis of the bladder, Hysterectomy do to "unexplained" mass amounts of scar tissue without proven Endometriosis, and Scoliosis. I do see a therapist because of the chronic nature of these problems.  Someone please offer a suggestion for this pain.  If I take pain medicine that effectively treats it, then I will become addicted as there is no cure for chronic pancreatitis.  Also, most narcotics slow down digestion and I can not have that so the pain clinic was of no help.  Honestly I am at the end of my rope here....How much longer will this last and will it eventually kill me or turn into pancreatic cancer?

[AnnaM]

You mentioned that you had a Hysterectomy due to Endro. I had this too. When I had my GB removed the Gen Surg said  had extreme amount of adhesions possibly due to Hyester & the 2 lazers they did on me previous for Endro.

I still have pain in my LRQ; that's where ahdesions were found. According to my research, adhesions can cause alot of pain. If you go in & remove them, more can form, but sometimes it DOES relieve the pain.

My suggestion is try to find a doctor that is compassionate about pain. After getting nowhere with 2 GP's, a Neuro, & a Gastro,I ended up going BACK to my Ob/Gyn & discussing these pains with her. I have found the worse treatment in the ER. I went 3x for severe pain (before GB was removed), and all each time they were wrong. Dx were anxiety, GERD & "Go to your GP- We don't know what's wrong."

I do not have GERD; I was tested & it was ruled out. I also could not tolerate Prilosec when they thought I had GERD.

Like I said, don't give p, keep searching for a doctor that will LISTEN to you. My former GP's tooks weeks to get tests ordered & then weeks to get results.
The Gen Surg my Ob/Gyn sent me too, got a CT run within 24 hours & had the results immediatly.
Another thing I've noticed that works esp after what youhave been through, is when you DO go into see a doctor when you are in this amount of pain, BE EXTREME and over elaborate your pain symptoms. The squeeky wheel. No one should have to suffer like this and just be given narcotics and sent away.
Keep us posted as to what happens. I am interested in this.
Anna  

[Candidam]

I know for sure that the lower right side pains I have are related to adhesions.  My GYN says it is a catch-22: if they go and cut them out, then they may grow back even worse. BUT, having said that, I usually make it about 6 months pain free after they cut the adhesions (done twice now).  The thing about the LRQ that scares me is that it is affecting my bowel habits and has caused "psuedo-obstructions" 3 times now that require a tube to drain my intestines.  I can't live this way for the rest of my life.  The pain is absolutely UNBEARABLE!! Also, the surgeon did not remove my appendix during the hystorectomy and there has been some speculation about "chronic appendicitis", but no one seems too concerned about following up on that.

On the story of my pancreas and reflux...I have been seen at a very famous research facility for this so I supposedly have the "best" doc in the region. Yet, I am still in constant upper, right-sided pain that travels to the back under my shoulders and spreads to my collarbone and neck area.  It is unrelenting, 10 on the scale after eating even liquids, and never goes below a 4 during non-eating times.  I am losing massive amounts of weight and literally can not eat more than my 5 year old eats in a day.  No fat intake, no coffee, no smoking, no alcohol, gluten free, lactose free=none of these has worked for me, LOL!  I take Lipram enzymes for fat malabsorption and nexium for reflux. Pain medicine is Ultram. Nausea medicine is phenergan. Can't take anything stronger than Ultram because it causes my bowels to slow down and I get obstructed. I am wondering if the endometriosis could have reached the pancreas and is the culprit for me repeatedly "blocked by scars" bile ducts. I just want someone to help me. I can't work because of the nausea, pain, and weakness due to malnutrition but I can't get Soc Sec because chronic pancreatitis is not one of there approved disabilities. I have two children and a husband that I am sure would love to have me at least at half capacity.

[AnnaM]

I just talked with a gal at work whose husband experienced the same thing you are going thru. He had these same pains for 2 years. Had every test also. Then when he was paying softball, as he tried to dive into third base, he fell on his stomach & got this terrible pain in the LRQ. Tey rushed him to the ER. After doing all their tests(again) they wanted to do a colostomy (where they out a tube w/ a bag for your BM). He refused. Another doctor was brought in & they decided to do a explorator scope. That's when they saw his appendix was "disintergrating." That's the word she used to tell me. After he had his appendix removed, the pain was gone. It's been 20 years since that happened.

I, too, wonder about "chronic appendicitis." I mean, if the appendix is SO hard to diagnose, and the patient seems to be having the pains there & everything else has been ruled out, then why don't they just remove it???

I still think my pain is due to "chronic appendicitis." And my theory is: I have so many adhesions (visible during GB surgery..SO visible they couldn't even SEE my appendix). I just wonder if these adhesios could wall off the appendix? When the appendix becomes inflammed, that's maybe when the pain starts. And because these Doctors readily admit they don't know what causes appendicitis, whose to say this can't happen?

I wish you luck; Please let me know what happens.
Anna