My 27 year old son has a progresive illness. Symptoms: chronic daily diarrhea (12 X a day), excessive wt gain, chronic nausea, vomiting, chronic severe abd pain worsened by sitting and bending, intermittent bloody bm (negative hemorrhoids). GI symptoms are excerbated by eating, extremely limited diet. Not lactose intolerant or allergic to milk. Ingestion of dairy products causes severe vomiting and diarrhea; over 24 hours. Must stop eating for 24 hours prior to MD appointments to avoid diarrhea. 7+ years. Testosterone level is low and creatinine slightly elevated. Neg workup; colonoscopy, biopsies, upper GI series/small bowel follow through ("Cecum and ileocecal junction in the right flank region. Otherwise nl small bowel series" 9-28-06), CT of the abdomen ("Nl except for spleen uppermost limits of normal in size" 10-11-06) and pelvis, MRI of the brain and pituitary ("fullness of the pituitary extending to the medial aspect of the left cavernous sinus of uncertain significance" 4-6-07), barium enema, neg stool cultures.
Various medications for IBS have all failed. Meds: 6 Imodium daily, pain medications, and anti-nausea. Psych eval to r/o psych cause neg. Rx(s) did not work. Was outgoing, gym daily, worked full time. Childhood asthma, pneumonia, bronchitis. Steroids and antibiotics often.
On 3-23 seen in a local ER-hematuria. Hematuria increasing. To see urologis. Been to Emory, Cleveland Clinic in Florida, Shands and many local physicians.
Do you have any idea as to where else we can go to attempt obtaining a diagnosis? Do these symptoms combined suggest anything to you? I am aware that you do not diagnose but if you even have a suggestion for his PCP to follow up on that would be extremely helpful. We are looking for hope and help anywhere and everywhere. I cannot express how much this frightens me and how it hurts to watch him suffering. Thank you.
There has clearly been a comprehensive evaluation, which would rule out many of the major GI disorders.
Sending the stool off for culture and analysis can be done to exclude infections or malabsorption.
I would also obtain blood tests to exclude celiac disease.
There are some newer treatments for irritable bowel disease, such as pro-biotics and Rifaximin.
These options can be discussed with your personal physician. I would also consider another GI opinion at a major academic medical center.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patients education only. Please see your personal physician for further evaluation of your individual case.
Please thoroughly study adhesions. Doctors are reluctant to discuss this possibilty since adhesions are foremost known as an iatrogenic disorder. However, inflammation/infection can also cause adhesion formation. Since adhesions do not show up on standard medical tests such as x-rays, scans, etc., the patient often wanders from doctor to doctor for years on end hoping for an answer to their pain and suffering. My daughter suffered (needlessly) for 14 years before I finally learned she was suffering from adhesions. I have written her story in the hopes to promote awareness about the illness. (Doctors: Bound By Secrecy? Victims: Bound By Pain!) I am also attacked by the "IHRT" a so-called ARD 'group' who is livid that I tout the German doctor, Dr. Daniel Kruschinski, who was able to save my daughter's life and restore her to complete health! Best to you, Karen
Thank you for that information, that is one thing he has not been checked for. I had hoped a general surgeon that he saw would perform a laparaoscopy to look for that the physician refused. How do I contact Dr. Kruschinski?
ALL IBS treatments have failed including probiotics. All labs for ova, parasites and infection have been negative. Does this in illness in any way suggest pancreatic involvement to you? Two nontreating physicians (non GI physicians) have suggested that perhaps this could be fatty tumors in the pancreas. As a GI specialist does that make sense to you as far as investigating for that?
You can contact Dr. Kruschinski via his website www.****.com. There's also a long list of prior patients listed there whom you can contact who can share with you their own stories. The things that jumped out at me when I read your posting are things that my daughter dealt with: chronic nausea & vomiting, pain, and difficulty bending. Adhesions restrict movement. Many women who have/had adhesions complain of having problems sitting, bending, nausea, vomiting, back pain, migraines, etc.
It is unfortunate that many doctors do not mention the possibility of adhesions to their patients who present with abdominal pain, nausea and vomiting. My daughter was repeatedly told to "deal with her illness and accept it" (she was originally diagnosed with Crohn's)....yet, I had a nagging feeling inside that she had been misdiagnosed and that the doctors DID NOT get it when it came to her pain and suffering. We feel very fortunate that she lived through the many years of suffering because Dr. Kruschinski found that her entire small and large bowel were encased in adhesions. Her horrid episodes of pain were bowel obstructions (a life-threatening emergency), yet ER doc's and her own specialists sent her away, leaving her to suffer.
Keep fighting for your son. An ill person cannot find the help they need. Thank God he has YOU! Karen
P.S. Don't pay a bit of attention to the slander that is on the Internet by the "IHRT".....they all know that Dr. Kruschinski is beating the odds against this illness, thus they try to destroy him. They beat at the wind. Also, there are personal stories listed at www.adhesions.de, just click on message board and look for personal stories.
I am a 44 year old male who had all the syptoms as your son started about when I was early 30's. I was a competitive bodybuilder for 5 years and was always able to cut weight for contest. After those competitive years I still went to the gym,rollerblade, cycling, and moutain biking were other activities on a weekly basis, I notice I was gaining uncontrollable weight, mainly water weight around my waste and legs as active as I was. After sex I would almost vomit, milk, meat became very difficult to eat, my stomach became destended, like a beer gut, I don't drink. After years of being told to cut back my sodium intake I had an adema episode were I went over 300lbs and could not sit down or walk. End result was Menetriers desease a rare pre cancerous desease. I had total stomach removal after trying a clinical trial here is a very good link.
Celiac disease is a gluten intolerance. The villi in the intestine, which stand up like fingers are flattened and everything you eat leaves your body. You do not retain any nutrition. Anemia, is a symptom and so are other things you mentioned. There are several blood tests, but you still must be eating gluten, (wheat, bran, rye, barley etc.) They also can take a biopsy of your small intestine during an upper endoscopy. The endoscopy is going to give you the better answer, because some who have used the blood tests have came back negative. There are also, people who can not eat gluten (wheat,bran,rye, barley etc.) and do not have celiac disease. Columbia Presb.Hospital, NYC has a Celiac disease center. Dr. Peter Green. You can research on internet.
After you stop eating gluten, the intestine villi repair themselves. You just are on a restricted gluten free diet.
There are some people who never get diagnosed correctly, but stop eating anything that has gluten and feel better. Good luck.
Thank you for that information. Interestingly my son lifted weights daily at the gym. He did not compete but was lifting upwards of 450 lbs when he started getting ill. I will check out the website. Again, thank you.
Thank you for that information. Celiac disease has been ruled out by biopsy and blood tests. Whatever this is seems to mimic a number of diseases. I will (hopefully that is possible) contact Dr. Green or someone at Colombia Hospital to see if they have any additional ideas.
I could have written your story myself. FIVE months- terible ride side pain. Dr gave me meds to clear the duodenal ulcer. I was diagnosed with Gastritis. The gastitis is painful - no meds help. I wonder what ALL the options are??? no one seems to know.. I see a GI dr. but maybe I need a second opinion. Hope things goe better for you
I would strongly suggest a second opinion since it does not seem that the regimen is present regimen is working. If you are female might also try a GYN doctor. I had an ovarian cyst on my right side that was painful. It ruptured and that was beyond painful. If you have not had any scans to rule that out, perhaps that might help. Thank you for your input. Hope you find answers also and things return to normal for you.
So sorry you are not finding any answers.
I have adhesions too and they sure seem like it is a possibility.
Also you added the weight lifting. Has anyone checked for hernias?
Please do not look for Dr. K mentioned above as I had surgery by him and found out I was experimented on as well as the daughter of the woman above. Daughter is not well and she is trying to hawk a book.
If your son has a hernia or any blunt admnal injury, prior abdominal surgery or an abdominal infection you would be at higher risk for adhesions and thier related disorders.
Try the International Adhesion society or the uk adhesions society, IHRT or ardchat for information about this condition.
Best wishes in your search for help
You might be interested in seeking some information in the following
web sites for persons with chronic abdominal/pelvic pain and
problems. There is a wealth of information for you to help you become an informed consumer and the best advocate
you can be for your child.
International Adhesions Society
and the CAPPS web site.
Another great web site is:
Also, contrary to any one else's opinion, IHRT contains a wealth of information that will alert you to things, Dr.'s and offers of interventions that are NOT in the best interest of person with gastrointestinal issues!!! (Thus Karen Stewards "warnings" about IHRT - which is the same premise of the wizard on the Wizard in Oz,
" DO NOT PAY ATTENTION TO THAT MAN BEHIND THE CURTAIN!"
This web site will help so that you do not make mistakes in seeking medical intervention for your child. Lots of lessons in this site that will spare you a lot of wasted time and energy.
Complex Abdomino-Pelvic & Pain Syndrome
Welcome to the International Society for Complex Abdomino-Pelvic & Pain Syndrome. (ISCAPPS).
Irritable bowel syndrome
You will find that any contact with Dr. Kruschinski in Germany is no longer viable as he has been reprimanded by the German Medical Board and German Government Court system for performing "experimental surgeries" on all of the patients listed in his "patient contact" list in his web site, as well as false claims of doing "clinical" studies of these same surgeries, and creating false documents associated with his "practice" of medicine.
EVERYTHING found in the "Endogyn" web site and is not factual, instead, it is filled with false reports and claims and equates to a bogus web site that wastes peoples time and energy! Karen Steward is aware of his current inability to produce anything for patients, why she continues to respond to suffering people is to sell her book, this is her way of "getting her foot in the door ' to sell her book! (The book is no longer valid in it's contents surrounding Kruschinski!)
Currently Dr. Kruschinski is being investigated for crimes against humanity, fraud, tax evasion, and owing lots of money to lots of people, stealing cars, and being drunk and disorderly in public as well as for harassment of former patients as well as exploitation of the same.
My words mean nothing in all of this, however, you will not be able to secure anything from Dr. Kruschinski, including honest and professional contact with him, but he might ask for money from you, so beware of that. Karen Steward (helpforadhesions's) has been associated with Dr. Kruschinski and is aware of these scams against vulnerable patients.
The good news is that no matter who says what about Kruschinski, people cannot secure a surgery with him any longer and are thus safe from that end of Karen Stewards claims and offers of assistance to patients she harvests to him. Kruschinski no longer has a practice in any medical facility anywhere in the world, all that exists are words and pictures in a web site in which he doesn't participate in any longer. Karen Steward is sending you on a wild goose chance...follow her advice and you will soon find these words to be true.
So sorry that the destructive bullies came on here. My daughter IS well after our trip to Germany, thanks to the brilliance of Dr. Kruschinski. I am not trying to "hawk" a book;
rather there are some people who are simply angry that I wrote the book. Lastly, Dr. Kruschinski is still very much in practice. You can contact him, as well as many of his
past patients. Karen
Hi Annie..whew had to wade thru the "Dr. K" fight to get here, but I just wanted to toss out my standard "have they checked for C Diff", if you follow thru with Doc Kevin's advice on stool sampling. You mentioned frequent antibiotics. Also, false negatives can occur if stool test isnt done 10-14 days after last dose. Just my two cents, and best of luck to your son.
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