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Have cystic fibrosis. Pancreas and kidney transplant done. Having frequent bowel movement. What's going on?

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General & Family Physician
Practicing since : 2005
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I HAVE CF AND HAVE HAD A PANCREAS AND KIDNEY TRANSPLANT. MY ABDOMEN HURTS, I HAVE NO DESIRE TO EAT AND I AM HAVIING 4 OR FIVE BOWEL MOVEMENTS A DAY THAT ARE XXXXXXX IN COLOR. I AM SCARED! I JUST TURNED 50 WHICH IS OLD FOR A CF PATIENT. THEY USUALLY DIE AROUND 33 YRS OLD. WHAT IS MY LIFE EXPECTANCY? ALTHOUGH I EAT VERY LITTLE MY ABDOMEN IS SWOLLEN UP. WHAT COULD BE GOING ON?
Posted Sat, 24 Nov 2012 in Digestion and Bowels
 
 
Answered by Dr. Prasad 12 hours later
Hi,

Thanks for the query.

I understand your concerns. The symptoms can be hurting; I hope the following answer helps you.

Cystic fibrosis (CF), a disease of mucous and sweat glands causes multiple symptoms involving the alimentary canal. Though you've had the pancreas transplanted, I am not sure how much enzymes the new pancreas is able to secrete and whether or not it is able to digest the food you consume.

Enzymes produced by the pancreas, liver and gall bladder acts on the food consumed and aids in faster digestion. In the absence of enzyme or if they are low, one can experience indigestion and abdominal bloating immediately after food. Multiple stools in a day can also be part of the same syndrome. I would also not be wrong if I assume the abdominal pain also to be due to this lack of enough enzymes.

One way to know is by using digestive enzyme supplements (pills or syrups) especially pancreatic lipase. You should feel better with it. Discuss with your treating doctor and he/she can prescribe a suitable brand.

Regarding life expectancy, I understand you been suffering a lot; dealing with CF with 2 major transplants is hard. However currently there are no available calculators to calculate life expectancy. Since you are able to live this long, I do not find any reasons to complete a century with God's help. Amen...

Hope I could be of some help. Do write back if you have any queries.

Best Wishes
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Follow-up: Have cystic fibrosis. Pancreas and kidney transplant done. Having frequent bowel movement. What's going on? 39 hours later
Thank you doctor,
That was an interesting answer and I will ask my doctor about the enzyme supplements. They want to sart me on Creon. I really do not know what that is, and I am reluctant to taking even more medication. What do you think?

Also, does CF cause skin and scalp/hair problems? I can't imagine this is related but over the past three years my thick waist length hair has been "disappearing" for a lack of a better word. I have not had it cut in three yearss either, because I want to so0ve the mystery. I have had many tests and it is not trichitillomania (sp?) and it is not lice or ring worm. The docters think something odd is going on with my CF or my weak immune system. The hair has wrapped itself around and around my head. even across my face and a thick, hardened mucus covers it layer by layer. Like cement. The hair turns very fine and flesh colored on my face. The only bald spot is where the biopsy was done. And the dr. forgot to take out a big stitch and skin and a knot grew over it! The tests came back fairly normal with some unidentified granules noted. My hair does feel kind of XXXXXXX sometimes Could this be scabies? Or is my skin just growing over my hair. Do I need to shave it?

Please advise. I have stumped many dermatologists. How can I solve the matter. I want my hair back please.

It used to hurt a lot and give me migraines. Now it seems it is stating to loosen a bit. I'm sick of wearing bandanas and headbands The only remedies that have helped at all are sea salt water, XXXXXXX cider vinegar and Lemon Grass shampoo. Is this anything you have heard of. My Doc sugessted Morgellon's but I do not see fibers or anything like that. Also my skin has circular patterns of white patches, that when scrubbed with hot, sea salt water real hidden long hair. This is so bizarre. I feel like a freak! Please help! XXXXXXX
 
 
Answered by Dr. Prasad 12 hours later
Dear XXXXXXX

Thanks again for writing back.

I am pleased to know that my previous answer was useful to you. Creon is pancreatic lipase supplement - exactly the stuff that I was talking about. I think you should try it.

You also have written in detail about hair issues. Honestly as a General Physician I do not handle many patients with skin and hair problems; therefore ideally a dermatologist with good experience may have been the apt person to respond to you. But since I cannot pass it on to my colleagues here, I shall try to address the problem. Please write back to a dermatologist if you are not satisfied.

Cystic fibrosis doesn't affect skin / hair except for increasing sweat salinity. Therefore it is very, very unlikely that CF is in anyway responsible. A normal skin biopsy rules out infection or immunological conditions. Hence the possibility of "Telogen effluvium" needs to be considered. Here early entry hair into telogen phase results in thinning and shredding of hair. It gets rectified as the causative insults are treated.
Hormonal changes associated with perimenopause / menopause may be responsible for other hair changes.

You may try shaving unwanted hair and use biotin tables. Minoxidil solution can also be helpful if you are losing plenty of hair. In addition plenty of root vegetables, fruits and destressing measures - physical exercise, yoga and transcendental meditation have beneficial effects.

Hope this information suffices. Write back for further assistance.
Please close this discussion if you have no follow up.

Cheers!!!!
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Follow-up: Have cystic fibrosis. Pancreas and kidney transplant done. Having frequent bowel movement. What's going on? 8 hours later
Thanks again Doctor,
You have at least given me some direction to explore with the hair problem. I am not losing hair though. It just keeps looping around the head and neck and is like cemented to the scalp with hard mucus or sebum. Sometimes I can loosen it up and put on a headband. But mostly it looks like I've had my hair teased and sprayed into a bee hive kind of hair do!!!

CAN YOU RECOMMEND A GOOD TRICHOLOGIST TO DEFER TO? THE DERMATOLOGISTS HAVE NOT BEEN OF MUCH HELP AND I CANNOT FIND A SCALP AND HAIR SPECIALIST IN CHICOLAND. What do you guess the unidentified granules are that showed up in my test? I have seen many websites with people describing this exact condition. I hate to think of it, but with my weak immune system, I would be a possible candidate for scabies, right?

I will close this discussion after I hear back from you. You have been most helpful.

Sincerest thanks, XXXXXXX
 
 
Answered by Dr. Prasad 13 hours later
Dear XXXXXXX

Welcome again.

1. From the outset, I don’t believe looping of hair or getting cemented to the skin is caused by hair problems. Perhaps crusting skin / scalp is entrapping the hair strands and giving it the appearance of ‘bunch of looped hair’. Aging, telogen effluvium and changes in the hormones could be causing hair thinning and colour changes though.
Try good antidandruff shampoo regularly. That should keep the hairs free of flakes.

Occasionally infected skin, sweat and sebaceous glands may secrete sticky particles giving rise to similar concerns.

Without a clinical examination, I am unable to relate your symptoms to any other medical conditions. Other dermatologist / trichologist on this forum may be able to comment more.

2. Though low immunity state can cause scabies infection, the symptoms you report are unheard of in scabies infection.

3. Unidentified granules found in a skin biopsy cannot explain your symptoms. These granular particles could be anything from normal body cells, modified cells, protein particles / deposits to abnormal cells of inflammation, etc.

4. Unfortunately my experience is restricted here. I am as much knowledgeable as you with regards to finding the right specialist at Chicago. Perhaps you should contact your primary care doctor; he/she can refer to an experienced dermatologist / trichologist better than I can.
Advanced Center of Trichology located at ‘8745 W Higgins Rd # 130, Chicago, IL’ is what I could find on Google.

Hope this information suffices.

Good luck!!!
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