[Millerquest]

Please advise - I was diagnosed with Chronic Pancreatitis in January and subsequently spent four months in hospital following an endoscopy, perforation and GI Bleed causing me to spend four months in hospital.
Five months on and I am still not able to eat solids without very acute pain in the upper adbominal area which radiates into my back.
My current symptoms are:
- Occasional blood in stool
- For two days now I have had a swollen and cracked tongue with red spots
- Acute pain when I eat soft solids (the pain starts within minutes and last for up to two hours)
- Discomfort if I try to eat - as though I have already had a heavy meal and the food is having trouble going down - this is now happening with my liquid food supliment
- Abdominal Pain and nausea (constantly) I occasionally bring up a lot of bile
- Normal or runny stool which is pale in colour and difficult to flush although a recent x-ray shows that there is a lot of blockage (constipation) in the intestines
- Constant tiredness - & loss of ten kilos since my admission into hospital in January.
My current medication is:
Creon - Elemental and Ensure (Liquid food suppliments) - Lanzaprasol - Senna - Morphine and Thiamine
Please help - I have two consultants who just seem to be boasting about whose ideas/treament is better whilst I am the one suffering.

[bushg]

wow, do you still have your gall bladder this sounds like a lot of symptoms that I had when mine needed removed.

I copied the ones that you and I shared

Acute pain when I eat soft solids (the pain starts within minutes and last for up to two hours)
- Discomfort if I try to eat - as though I have already had a heavy meal and the food is having trouble going down - this is now happening with my liquid food supliment
- Abdominal Pain and nausea (constantly) I occasionally bring up a lot of bile
- Normal or runny stool which is pale in colour and difficult to flush although a recent x-ray shows that there is a lot of blockage (constipation) in the intestines
- Constant tiredness - & loss of ten kilos since my admission into hospital in January.

[danielnoahsmommy]

Please contact you doc. Something wrong is going on.

[danielnoahsmommy]

Please contact you doc. Something wrong is going on.

[Choux]

How old are you?

[Millerquest]

Choux - Hi, and thanks for your interest - I am 43 years of age and have had the abdominal problems for a total of 3 years but since January of this year it has been much worse
Regards

[Millerquest]

Thanks for your reply Danielnoahsmommy - I have been back to the doctor a few times recently. Each time I am givne a letter to take to the hospital and each time I am admitted, given IV glucose and told I am dehydrated or lacking in something. I am then discharged from hospital and within days I am back to square one.
I am constantly told that I have baffled the top pancreas and gastro team but that unwanted record isn't helping me to get better.
My doctor at my GP surgery is really understanding but there is only so much she can do - she has referred me to my local pain team to see if I can at least get some ease with the pain.

[bushg]

Do you still have your Gall bladder?

[Millerquest]

Bushg - Hi & and thank you for your answer. No, I haven't had my gall bladder removed. I have been checked for gallstones and none were found. As I have had acute and chronic pancreatitis, the doctor has not done many other tests. What tests were performed to indicate that the problem was with your bladder? If my bladder is not functioning properly and causing all of these symptoms I would be somewhat at ease because I have been been worried that it may be something uncurable.
Thanks again

[bushg]

I was admitted in the er but this was after a few years of pain. I know blood work and an ultra sound was performed and later on another ultra sound was performed but mine was really diseased with many stones.

Could you possibly have a stone blocked in the bile duct? Do you have to have stones for it to be diseased? Maybe you have had some stones and passed them... I was told that was where most of the pain came from was my body trying to pass them?
Does your family have a history of having Gall bladders removed? It can be heridatiry<sp

My boss was in serious condition a few years back because hers was so diseased that it caused an infection. They had a real hard time determining what was wrong with her , thankfully her daughetr was a RN and pushed them hard. SHe was in the hosptial for about a week before they found out it was her gallbladder.

I can tell you that My family has suffered some very unusual disease/problems that has taxed doctors many times. I have learned much through a son that has been through medical trauma as well as a niece. I have learned to check and recheck. Because if a disease is in early stages then it may not be caught.

I would ask for test to be run again to make sure that gb is not the problem. I don't know if your liver enzymes would be off but that is a question that you could ask?

I will ask my boss if she can remember what types of test theu ran.. problem is she suffered head trauma this year and has lost some of her memory. I will also call my niece and ask her some questions. She had stones in her bile duct as well as in the gallbladdder.

Do your arm have pain radiate up your right arm that goes into your shoulder ?
I believe that the light colored stool is from bile being in the stool because when I had my surgery that cleared up after a few weeks.
I will post more after I talk to the others. Also we have a nurse on here that can discuss this with you maybe she will stop in.

[Millerquest]

Bushg - Thanks for your reply - When I first went into hospital this year tests were done and Pancreatitis was diagnosed, although my scan did also show that my liver, stomach and pancreas were inflamed. The inflammation cleared up after I was given IV antibiotics for a week. There is no history of gall bladder problems in the familiy and I have one cousin with problems with his pancreas. His however, is alcohol related, but I don't drink alcohol at all. Many members of my cousins have diabetes and my doctor monitors my sugar levels in case I should become diabetic.
I have had a total of five endoscopies and three ERCPs and the only significant thing I can think of at the moment is that most of those tests and scans I have had done shows that the bile duct is always fully dilated. The doctors can find no reason for this and further tests on the bile duct are not planned as far as I know. I have had a stent put in near the pancreas but it became blocked and was removed. I have also had a pexus block performed (a procedure to deaden the nerve near the stomach) to reduce the symptoms of pain and nausea but this did not work.
Thank you once again - your suggestions have caused me to think of some important questions to ask my consultant on my next appointment which is only a week away.
Regards & Keep well

[bushg]

In the am I will try to get in touch with my niece. Write your questions down so that you do not forget anything.

[inthebox]

Please advise - I was diagnosed with Chronic Pancreatitis in January and subsequently spent four months in hospital following an endoscopy, perforation and GI Bleed causing me to spend four months in hospital.
Five months on and I am still not able to eat solids without very acute pain in the upper adbominal area which radiates into my back.
My current symptoms are:
- Occasional blood in stool
- For two days now I have had a swollen and cracked tongue with red spots
- Acute pain when I eat soft solids (the pain starts within minutes and last for up to two hours)
- Discomfort if I try to eat - as though I have already had a a heavy meal and the food is having trouble going down - this is now happening with my liquid food supliment
- Abdominal Pain and nausea (constantly) I occasionally bring up alot of bile
- Normal or runny stool which is pale in colour and difficult to flush although a recent x-ray shows that there is alot of blockage (constipation) in the intestines
- Constant tiredness - & loss of ten kilos since my admission into hospital in January.
My current medication is:
Creon - Elemental and Ensure (Liquid food suppliments) - Lanzaprasol - Senna - Morphine and Thiamine
Please help - I have two consultants who just seem to be boasting about whose ideas/treament is better whilst I am the one suffering.

Have you had your triglycerides checked? > 500 can put you at risk for pancreatitis.

I am assuming with CTs of the abdomen, a pseudocyst or pancreatic abscess has been ruled out.

Cystic fibrosis can cause recurrent pancreatitis but you would also have lung problems also.

Have they checked you for H Pylori? This is an infection that can cause ulcers.

Have you had a colonoscopy to check why you have such irregular bowel movements?
It can also tell if crohn's or ulcerative colitis may be an issue.

Have you been checked for a high calcium [ kidney stones also ] ?
Have you been checked for hyperparathyroidism? Multiple Edocrine Neoplasia 1?

Often morphine can slow GI activity and cause constipation.

Are you on phenergan or reglan/metoclopramide for nausea?

Do you smoke? See below:

Hereditary Pancreatitis - The National Pancreas Foundation

[Millerquest]

Thank you for contacting me - No, I don't drink or smoke. I have not had any triglyceride check as far as I know.
The CTs that I have had have not shown any cysts or abscesses.
I have, however, been tested for the heli-bug on numerous occasions and each time the results have come back positive but my consultant says that as I do not have an ulcer the helicobacter bug is not of any major concern. They have tried to give me the triple therapy to get rid of the heli-bug using other anti-biotics as I am allergic to Erythromycin and Penicilin, so they have given up.

I do not have any lung problems, the only problem I have with breathing is when I try to eat solids (and more recently even When I take my Ensure) as the pain radiates very badly into the back. The pain is not so bad when I have my Elemental drink.

I had a flexi done (colonoscopy?) in April this year because I have been passing blood in my stool, but this procedure did not show where the bleeding may be coming from and the surgeon requested that I have a test which goes higher up the colon but this was not mentioned again as the bleeding when I open my bowels is not as frequent as before.
When I next see my consultant or GP I will ask about my calcium.
I have not been checked for hyerparathyroidism.

I am very concerned that after 3 separate x-rays/scans of the abdomen on different occasions showing that I had blockages (constipation) in colon/intestines, that nothing has been done about it. This was first noticed before I was put on morphine for pain relief.

For the anti-sickness, I am on metoclopramide, Cyclizine and Ondansetron hydrochloride and I am on Amitriptyline at night.

I had some spots and swelling of the tongue and yesterday was told by my GP that it is thrush (I think that if the thrush has been there for a while, it could have travelled, as I do have discomfort when swallowing) - I have started taking some medicine - my GP said that I appear run down and she noticed that the sides of my mouth are grey instead of a pinky colour which she has asked me to come back to her about.
I hope I have covered all you mentioned - Thanks once again for your help

[inthebox]

You had a flexible sigmoidoscopy which evaluates the left side, or the last 2 feet of your colon. A normal flex sig cannot exclude colon problems beyond 2 feet, that is why a colonoscopy [ the whole colon, 6 feet ] was suggested; and it should be done.

Amitriptyline may contribute/ cause constipation.

With your weight loss and fatty stools [ steatorrhea ] you may not be absorbing vitamins ADEK; although perleche / angular chelitis is associated with b vitamin, iron, or niacin deficiency.

A propton pump inhibitor [ prilosec, nexium etc ] + bismouth + tetracycline + flagyl will treat H Pylori. It is a whole lot of pills, but it avoids amoxicillin [ related to penicillin ] and biaxin [ related to erythromycin ] which you are / may be allergic / intolerant of.


They have capsule endoscopy Wireless Capsule Endoscopy that will "view" the entire GI tract, but a limiting factor may be that you are chronically constipated.

[Millerquest]

Thank you - at my next appointment I will mention the colonoscopy - I had so many tests of various types in a short space of time, it is possible that it was simply overlooked. They used a fleet prep which was very effective when I had the flexi so hopefully it will adequate.
The proton pump treatment does contain a lot of medication but it will be definitely worth it - I will have to word this as something to try in a convincing way, as my consultant can be quite abrupt and dismissive at times.
I didn't know about the capsule endoscopy - I will ask for this when another exploratory endoscopy is planned. Hopefully, this will be used as I had a big GI bleed when my stent was removed this year, causing me to worry about plans/mention of any invasive treatments.
My son has a G6PD Deficiency and my doctors say it is not necessary to test me for it as it is only carried by women (I have read that some doctors say otherwise). If women can in fact have the condition, and I had G6PD, would it be in any way a contributing factor of my now ongoing symptoms? This is just a thought.
Thanks once again

[cpjoshi1947]

To me it appears that you are suffering from Chronic Gastritis and Reflux Oesophagitis. There also may be ulceration in your gasric part( Gastric ulcer.)
Following should help-

1. Eat small meals. Avoid heavy, fried, oily diets. No fast food.
2. Take 150 ml of milk and 4 tabs of digene(Antacid) to relieve pain.
3. Cont. Lansoprazole 30 mg twice a day before food. Stop morphine if being taken.
4. Stop all Non Veg food for 6months. Increase roughage in food . Green vegetables and fruits.

[inthebox]

Thank you - at my next appointment I wil mention the colonoscopy - I had so many tests of various types in a short space of time, it is possible that it was simply overlooked. They used a fleet prep which was very effective when I had the flexi so hopefully it will adequate.
The proton pump treatment does contain alot of medication but it will be definitely worth it - I will have to word this as something to try in a convincing way, as my consultant can be quite abrupt and dismissive at times.
I didn't know about the capsule endoscopy - I will ask for this when another exploratory endoscopy is planned. Hopefully, this will be used as I had a big GI bleed when my stent was removed this year, causing me to worry about plans/mention of any invasive treatments.
My son has a G6PD Deficiency and my doctors say it is not necessary to test me for it as it is only carried by women (I have read that some doctors say otherwise). If women can in fact have the condition, and I had G6PD, would it be in any way a contributing factor of my now ongoing symptoms? This is just a thought.
Thanks once again

Not exactly. G6pd helps reduce oxidative stress, and it is X-linked, so heterozygote females are carriers. Certain medications can cause oxidative stress and people that are g6pd deficient, may have hemolytic anemia - destructionof their red cells. Medications include sulfa, chloroquine , cipro , macrobid and foods such as fava beans.

[Millerquest]

Hi CPJoshi1947 - Thank you for your reply, however, at the present time I am unable to consume anything other than sips of Supplimentary Drinks prescribed by my Consultant and GP or water. Before being admitted to hospital I was only eating vegetables, and have been on Lansoprazole 30mg for 3 years now. I am unable to eat solids as the pain is too great and it is either triggering off my pancreas or there is something else quite wrong - with the pain I am usually sick also. The pain is bad even if I don't eat solids - its constant and increases if I drink or attempt anything solid (such as mashed potatoes which is sloppy in consistency, steamed & puréed fruits/veg or soft cereal with skimmed/semi-skimmed milk) - My medical team & pain team have resorted to me using Morphine after having tried the following at different stages: Pethadin, Tramadol, diclophenac and Paracetamol (please excuse spelling errors).
Thanks again - once the pain subsides my diet with definitely be low fat and mostly vegetarian although I would likek to include fish.

[Millerquest]

Thanks in the box it was just a thought. I suppose because the condition has gone on for so long and getting worse, I am clutching at straws somewhat.