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Getting a PHD in ME
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Getting a PHD in ME

Medical history:Was in good health and had quit drinking 10 years prior to onset of symptoms...2 years ago I had an abdominal x-ray revealing a giant bladder diverticulum with total urinary retention of 2300 ml. My bladder neck was also sealed shut with muscle mass and I had developed sepsis. After bladder neck surgery, diverticulectomy, and surgical reattachment of left ureter I kept developing multiple infections from pseudomonis?? to c-difficil. This seemed to come under control but urodynamics tests showed neurogenic bladder and bladder floor muscle confusion which has caused chronic urinary retention and the need to post void catheterize. Approximately 3 months later I developed severe bowel cramping and rectal bleeding. After colonoscopy I was diagnosed with IBS,
spastic colon, and fissures in lower bowel. Dietary restrictions and medication seemed to help but cramping was still sometimes severe. Approximately 4 monthslater I began experiencing difficulty swallowing and severe upper gi cramping. Endoscopy showed growth in upper 1/3rd of  esophagus(severe h-pylori nfection),ulcers and GERD diagnosis. Medication and more dietary restrictions seemed to help but still experienced bouts of severe upper GI cramping. Approximately 2months later I was back in the hospital and gall bladder tests showed sludging so they removed the gall bladder. 2 months later they suspected gluten intolerance to wheat even though test was negative for Celiac which led to more dietary restrictions. 4 months later I had 2 episodes of pancreatitis inside of 45 days. MRCP showed nothing abnormal although ERCP showed pancreatic scarring and dysfunctional pancreatic sphincter. A sphincterotomy was performed and stent implanted, diagnosis chronic pancreatitis. This seemed to help for about a month than constant rectal bleeding, 5 cases of pyelnephritis???, unbearable cramping Bladder/Bowel/Upper GI, constant nausea, severe reflux pain, and the newest symptom low blood sugars at least every 2 to 3 days(last episode 42 blood sugar count)over 3 month period. All of  this has also led to 2 nervous breakdowns, 1 suicide attempt, and diagnosed bipolar. Set for another bladder surgery on Feb. 20th to cut loose left ureter and reimplant surgically again in hopes to stop recurring kidney infections.

Relevant Medications: Bentyl PRN, Nexium 20 mg 2 times daily, Macrobid once daily, Percocet 10/325 prn, Trazadone 100 mg in evening, Remron 15 mg in evening, Hydrocortisone suppositories prn

Questions: What pain medication would you recommend(percocet and lortab 10s have not worked)?
Could this all be related somehow being I was in good health until this onset of symptoms and bladder floor confusion shown in urodynamics??
Should I request full intestinal pill camera investigation being the diverticulum protruded into abdominal cavity just 1 cm under right kidney?
Any additional treatments you would suggest?
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3 Comments Post a Comment
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Avatar_f_tn
Dear Confused,
Son, you have been through the mill, I've been where you are with other health issues, and it's a dark place, to be sure.  BUT there may be hope for you!  I know a little bit about H. pylori, which they said you have.  It is rather hard to get rid of, hard to determine if it's gone.  But get this, that bacteria when active can cause just about every single problem you've had!  Let me go backwards.

Your pancreas and gallbladder problems can be created by an H. pylori ulcer that develops in whatever likely place, which a duodenal ulcer can continue to erupt and spread into those adjacent organs, which the pancreas and the gallbladder are next door, and specifically cause lots of junk from H. pylori in the gallbladder.  And so, since you had a growth in your esophagus from H. pylori, well, you see where I'm going.  H. pylori ulcers in the stomach can also cause bloody stool, and this bacteria has been connected to bladder ulcers, which makes me think of how yours got clogged up.

When you described your first surgeries and how they catheterized you only after a problem developed, my understanding of your procedure is they're supposed to do that directly after the surgery as a routine procedure!  The point of that is, you should go to a notable hospital gastro group near to where you are, preferably in a university setting, and have them go about testing you for H. pylori and no matter what treating you for H. pylori, whether or not you've been tested and treated before.  As you can already see, IF this is indeed H. pylori doing all this to you, that bacteria can be lethal.

As for you having a nervous breakdown, I know ALL about that, I've had quite a few, and I've been taking tranquilizers this time for almost 15 years, a car wreck gave me panic disorder.  But to me the best tranquilizer is the standard Valium.  My understanding on pain killers is Diaudid (hydromorphone) might help since Percocet (oxycodone) did not.  Anything that has a morphine name on it ought to do it.  I might add that according to several sources, if you have H. pylori, you can eat foods with flavanoids in them, which have been shown to slow or stop the growth of H. pylori, which includes things like cranberries, apples, and onions, and I've also read that red wine and brocholi sprouts are good for that infection, too.  That stuff won't cure you, but sure would be nice to start easing up what I think are ulcers in several key places in your body.

Now, this is not to say that you don't have some sort of blood poisoning from the original surgery, whereupon you wind up with septicaemia as bacteria spreading to other parts of the body, causing inflammation of abdominal cavity organs.  And could be you had other fistulas, which could have cross- contaminated other parts of the abdomen with the sepsis you developed from the original stagnant urine.  It's just the moment I read H. pylori, and I made sure what I was thinking was so, I felt this was the best tentative diagnosis for everything that has happened to you.  By going to a larger and better hospital, they will at least try to get to the bottom of this significant cascade of symptoms.  I mean, you donl't go from a blocked bladder to practically losing every abdominal organ you have!

Hope you find some better help, hope someone can correctly diagnose any central health problem, and hope you get better pain control.  And I will say this, this has been going on TOO LONG, for crying out loud, and for gosh sakes I hope SOMEBODY will take pity on you and straighten you right out.  I had almost a year of cancer treatments recently, and I had the most patient, sympathetic, responsive, and expert doc I've ever had, and even tho I was gonna surely die with THREE cancers in one place, two of them the most aggressive you can have, I'm still here and I've only cried twice this week!  
GG
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Avatar_m_tn
Wow! Should I call you Dr. House.TY! Just under 2 years of pulling my hair out and finally someone who sounds like they have more than ounce of sense. I just might get out of this thing with some hair left. By the way with all the knowledge speak do you work in medicine or as it sounds did you just get your PHD in you.... and the big C I commend your valiant battle.

I would like to clarify a little about my doc.'s. My family physician is a great guy, family freind, this is just a little out of his league. My Urologist is ranked in the top ten for surgeries of this type in the U.S.(reconstructive bladder surgery). He is at the University of Indianapolis and has been saying all along that he wished IU could provide a better and more thorough examination over a prolonged period of time but I am 3 hours away and this makes it difficult to drive the distance every other week.

Here's where the ball was dropped. He had my case forwarded to the IU gastroenterology dept and scheduled an appt. with them. When I went up to see him for the first time I made the mistake of forgetting to bring my colonoscopy, endoscopy, and other local hospital records. Up to this point only the bladder problems had been done by IU. Second mistake I shared a lot of my crazy past, drug use, running, funning, sexing, and boozing. Thinking complete honesty with this guy may shine a better lite on the situation for him. After listening to my past history he looked at me like I was crazy, stated that without my medical records, as far as my recount of all the other problems, and I'll quote him "He would consider what I had told him with a large grain of salt" they did some blood work diagnosed me with Vit. D deficiency and prescribed the vitamin along with 50mg amitriptyline, sent me on my way, and did not even schedule a follow up.

Of course after basically being called a nutjob I refused to return to see him or anyone in the IU gastroenterology Dept. So I have been left with good Dr.'s locally but not the expertise nor equipment necessary to deal with and properly diagnose my problems. However, armed with your information I think I will swallow my pride. Take my med. records up when I go Feb. 20 for my other bladder surgery request a different GI doc and let the Pros get to work. This will also provide a little self satisfaction that this other GI doc. will hear about whats going on and see that he clearly missed the boat in a case that could prove to be the most fascinating descimation of the human body by a simple H-Pylori infection. I know H-Pylori is not a simple infection but I am sure you get the gist of it.

I will also let you know that I have set back and trusted the docs to do all the work but now have started aggressively advocating for myself. Just last night I sent out 20 emails with my story to some of the biggest and baddest GI hosp's out there. Mayo in Rochester, The Cleveland Clinic, and Duke University just to name a few. I have also joined just about every med. website out there. I am not going to lay back and let these doctors kill me.

I will say Dr. House that so far you have provided the best possible route and if nothing else a great direction to head off in. I can honestly say that I can now see a light at the end of the tunnel and am not running from it for fear it will be a train.

By the way I am from NC originally as well Statesville to be exact. Is there a way we can start a more open dialogue without publishing to much personal info. to everyone here. This is not an attempt to flirt I promise for I am truly a happily married man. Simply looking to extend the friendship branch and who knows next time me and the family head down to NC to see my folks we could all meet.

Again I truly feel blessed that you caught my post and responded I am finally hopeful and pray other responses can can continue to provide the same type of enlightenment that you have enlightening.
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Avatar_f_tn
Hey there,
Glad I gave you some hope.  As for social sorts of things, I must apologize and pass, for I am one wrecked-up person, husband and I are older and both have bad backs, and it's all I can do to get over to see my folks and they live in the same town!  But It's nice to feel appreciated.  I thought your story about telling your new gastro doc your entire life's history was so funny.  Sounds like me, I CANNOT shut up.

Nope, I'm not a doc, maybe just an M.S. in ME like you.  I did study nursing and worked in a couple nursing homes for a while, but I am by no means edu-bi-cated in the land of medicine.  I post in gastro on account of I have IBS, a medication tore up my guts... and I post in neuro on account of I fractured my back in three places in a car wreck.  So, like you, when you deal with a particular medical issue for months, years, eternity, you learn stuff.  And since there's barely anything better I like to do than help people, here I is.  Altho I must say, dogs are my best friends, decor my best diversion, husband is my passion, and my work was as writer and editor on newspapers.  Yes, I can talk up a storm.

Well, son, let us hope someone will do a few repeat and new tests, especially on the H. pylori thing, altho could be a REAL doc will cross that off the list right away.  But I wonder, might be an H. pylori website for all the lost souls who congregate on Sundays to howl about their miseries.  I like it that you're giving this thing another big push.  By the by, anyone on these boards can message anyone on these boards, just click on a person's name and you'll find a place to send a message.  Occasionally I'll get a few, even long after posts, with a memorable one by a fellow in India who had just gotten married and he'd had this chronic awful condition (don't recall what), and I figured it out, and he gave me such a kind thank you.  Let us know how things progress here, tho, as stuff develops and hopefully improves for you.  GG
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