Another New Person

• By Chriswife
• Reply 3355372
• September 7, 2012 at 11:03 am
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I wish you were not in this sitution, however you have come to the right place! there are many knowledgable people on this site that have the same issues as you!

I have a colostomy, so I do not have the watery stools like someone with an ileostomy would. I would recommend that you drink alot of fluids (including electrolyte replacement) and eat foods that you like to eat. try the BRAT diet and see if that helps you. Have you talked to your doctor?

Sorry you are having so many problems. It does get easier:)

Kerri

• By amt52
• Reply 3355498
• September 7, 2012 at 11:44 am
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Dear jpn2010, I have no colon and only 5-10% of sm intestine, due to cancer and subsequent adhesions. I can relate to how you are feeling. I had no appetite and wasn't drinking. First thing we tried was Ensure, hi protein 2-3 X day. I could tolerate the chocolate, really cold. I drank a lot of tea and diet coke, watered-down with lots of ice. Nothing was providing adequate nutrients, and eventually I ended up with IV nutrition, "TPN" (total parenteral nutrition). This is a worst-case scenario, but I have adjusted quite well, because now I eat for pleasure only, don't have the pressure of having to eat and drink all day. I sincerely hope you don't have to resort to this. Know the symptoms of dehydrating and malnutrition, including dry mouth and tongue, decreased urinary output, extreme fatigue, dry skin, etc. Sometimes, TPN short term only will perk you up enough to regain appetite and drinking adq. fluids. Wishing and praying for you.

• By tjane
• Reply 3356463
• September 7, 2012 at 5:50 pm
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Welcome JPN I have a colostomy 3/4 of my colon is gone so my stools are very watery. Peanutbutter and marshmellows will help thicken up your stools. I have only tried peanut butter and know from experience that helps to thicken your stools. I have not tried the marshmellows yet. Several people on this site have mentioned the marshmellows. Maybe you can try that and see if it helps you. Most everything is trial and error till you find what works for you. Try a little at a time so you don't get constipated or blocked up. I also had a lot of wattery stools at the beginning. It seems to have slowed down a bit now. It has been about 5 months since my surgery. Do you have a home health nurse to visit you to answer your questions? I am sure others may have better advice for you. Just hang in there you are still healing from your surgery. It takes at least 3 months to start feeling better after surgery.

• By Mare5785
• Reply 3356603
• September 7, 2012 at 6:50 pm
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Welcome JPN,
This site and the wonderful people in here are a GodSend! Use us for any and all questions you have. NO question is stupid. What you had done is a major life changing event... not one that any of us "signed up for". Sorry that you are having to deal with this.

I have had 7 surgeries ending with the ileostomy from Crohn's Disease. My total colon is gone and a great deal of my small intestine... leaving me with Short Gut Syndrome... for the past 26 years. Your body has gone through a major shock and will take time to heal. It will get easier and better as time goes on.... trust us... it will.

I have pasted the link for a description of foods which can help slow down your output and those which cause gas and more output.
http://www.ostomy.org/ostomy_info/pubs/food_ref_card.pdf
I found in the very beginning that rice, potatoes, pasta, spinach, blueberries helped to slow down the output. Especially in the very beginnng... you should keep track of what works for you, as we are all individuals and react differently to foods. Only try one new food item at a time and in small amounts until you know how your body will react to it. Eating too much of these foods can cause a blockage.
An empty bowel will have more gas... Like a "baby".. feed it to keep it quiet. lol Several little meals a day.

You may need the aide of meds to slow down your output if you can not achieve that with foods that you eat. Such as Imodium. I was on codeine for a while and then opium because my bowel output was such high volumn. Prescription Imodium was not strong enough for me.

As we have all suggested, staying hydrated is of upmost importance. Pedialyte has more bang for it's buck vs gatorade..(much higer conentrate) Emergen C makes a product called Electro Mix which is a powder you can mix with water.. a slight lemon/lime flavor to it. It is easy to carry with you as it comes in a little packet. Drink lots of fluid during the day... but try to limit beverages while you are eating. Water is good.... sugary drinks will cause excessive output.

I've put a lot in this post.. sorry.. Just some "key" points that are important. You will find the questions will arise as the days progress and situations present themselves. As you say.. "Where do I begin??" We didn't know what to ask either, in the beginning.. until we knew what we had to deal with.

All feelings are valid... let yourself feel them... Come in here often and find the support, friendship, care, concern and prayers that we give each other.
I am trying to transfer to Windsor, VA for my work.. If I do.. I'd only be 2 hours from you! Is there an Ostomy Support group in your area that you could attend?

Prayers and Blessings for your healing.
Mare

• By Mare5785
• Reply 3356637 · In reply to 3355498 by amt52
• September 7, 2012 at 7:00 pm
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Amt... So glad to hear that you still eat food for pleasure!!! My dad, years ago, was the first patient in VT to have the procedure of TPN administered. It came from the Space program. You are right, temporary basis, it would be a boost for malnutrition. They put 25 lbs on my dad before he had his surgery. He went from 250 lbs to 120 in way less than a year. They thought he had pancreatic cancer.. then diagnosed Crohn's. Long before dr's really knew how to diagnose it.

I would never give up food! I would be like you. : ) One thing I did forget to mention in my earlier post was the importance of chewing... chew..chew..chew.. Can't chew enough. For us who do not absorb well, we need to start that digestion immediately when it enters our digestive system. Smaller bits are better for absorbing in the small intestine.. as it's not in there very long. Anything we can do to help that along is a plus. People always make fun of me when they see me dice veggies and my cooking.. and I tell them.. "This is where my digestion starts.. right here on the cutting board." Helps with the chewing.. Sometimes my jaw would ache from chewing so much. but... thankful for God's grace, that I was still here and able to eat!

God Bless

• By cab1942
• Reply 3356790
• September 7, 2012 at 8:09 pm
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Welcome JPN. You certainly have had a full plate of problems to deal with. You seem to be a strong willed person so I think you will get through this. I have a colostomy so I don't have the watery stool and dehydration issues. But there are many ileostamates on this site and they will happily share information. You have found a very freindly site. We are like a big extended family and love to have you be a part of it.

Carolyn

• By Bana57
• Reply 3357025
• September 7, 2012 at 9:55 pm
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Welcome JPN, I have been in your boat and it is not an easy one, but you must drink, drink, and drink somemore, I have had my ileostomy almost 2 years now and it is still watery and empty alot but my apetite has come back and I still have alot of foods that I can not process without alot of cramping. But you have found a great site and it all depends on the individual person. I have found that I had to accept the fact that I have cancer and have to live with this pouch and once I got over that things seem to roll along but stay strong, stay healthy and keep us informed. We are all here for you and everyone else. God Bless

• By amt52
• Reply 3357111 · In reply to 3356637 by Mare5785
• September 7, 2012 at 10:33 pm
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Mare, How fascinating about your dad! We are blessed that medical science has advanced so much. I worried that chemotherapy would be the death of me. But because of all the people who had it before me, they have it down to a fine art. First you get IV steroid and anti-nausea, that is effective for up to 3 days-it wasn't THAT bad. I also participated in a clinical trial of an oral chemo drug; maybe it will help someone down the road. Just finished watching Stand Up To Cancer special on tv. What a great show this is-had me in tears more than once!

• By Mare5785
• Reply 3357385
• September 8, 2012 at 1:28 am
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(((((((AMT))))))) Yes.. being in clinical studies does help our future. I have been in many... way back when as a teenager. Long before some of the drugs today were actually being administered to patients.. I went through the double blind studies for flagyl (hated the stuff, I had every side effect known to it.. It was obvious I had the "real stuff" ) 5ASA, sulfa and a few others.. I don't remember all the names.
The one GREAT thing about being on the flagyl was... they were using this at the time (1983) for cervical/ovarian cancer and thought maybe it would be good for Crohn's so I opted to go on the study. I had to sign papers that I would practice birth control during that time, as the meds are known to be gene altering and getting pregnant while taking it was not an option. I complied with their demands and laughed.. "I've not used birth control in 7years.. I don't think I need to now, but will as you have asked me to.." I ended up having to go off the study because I became to ill to remain on it.. You have to be a "little bit sick" and not "a lot sick"... I waited the 30 days after discontinuing the drug and then got off the birth control.. WELL.. within two months, I was pregnant!!!
I thank GOD for flagyl, cause I know, my son is my "miracle child", a true gift from God.. What the flagyl did for the uterus/ovaries as a cancer fighting agent seemed to have "cleaned my clock" and allowed for my son to enter the world!!!! All the doctors called Ethan their miracle child!!
I've swallowed radio active isotopes.... my dad participated in studies as well. It's the only way we can make progress is to take part in them. It helps our own future and hopefully helps others.

The one good thing about being pregnant was.. I felt the best I had felt in years.. The additional prednisone that our bodies make during pregnancy kept my crohn's disease in check. One dr told me.."Mary, I think you should spend the rest of your life being pregnant!!!!" lol. This was easy for him to say.. he was a doctor and could afford to have many kids.. he had 7!!!

God works in mysterious way that we have not clue of...
God bless you amt and your part in giving to the future for medicine and those who will benefit from the outcomes of such studies.

Mare

• By herbsgal70
• Reply 3357733
• September 8, 2012 at 8:37 am
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jpn - Welcome to our ostomy "family" - I am dealing with a 9 month old ileostomy and have had my share of trials and errors adjusting to what will be my "Buddy" for the rest of my life (I am 80, and will not have any further elective surgery). I am getting to be known as the "Depends Queen" as I advocate wearing one to bed every night in case of a night-time breakthrough. If this hasn't happened to you, you are one of the lucky ones. The new Depends for Women is very comfortable - not like the old paper ones - and keep any mess that might happen during the night fully contained. The few times this has happened to me it has saved me from having to change bed linen - to say nothing of not grossing out my husband! You will read some real horror stories about that in our posts here.

Please keep posting here - and ask about anything you may find troubling, or looking for an answer to be more comfortable with something. There is nothing to embarassing, gross, or puzzling that we haven't all heard before - everyone here is caring, ready for answers, and informative from their trials and tribulations from living with an ostomy of any kind - as you will see, if one of our own here is in trouble, we also have what amounts to a prayer chain!

Hugs from Marge

• By Mare5785
• Reply 3357877
• September 8, 2012 at 9:39 am
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Hi Marge!

Thanks for reiterating that all question are valid and worth asking!! We can't stress that enough.

You know.. I do believe that Depends should be paying you a salary for being a terrific sales lady!!! : ) I DID pick up a package the other day in the store. I was going to see my sister-in-law and would be spending the night... and thought.. what a great time to try them out! As it was, she cancelled on me so I didn't try them that night. She just lost her husband this April and is still not wanting people at the house... and backed out after thinking too much about it.

I actually picked up the Depends that are adjustable..The were 1/2 the price. I could not understand why that would be. I think when I'm done typing this, I'm going to to upstairs and put a depends on my pillow, so that tonight.. I WILL remember to try them.

Blessings for a health day!

• By dollyme (Inactive)
• Reply 3357941
• September 8, 2012 at 10:05 am
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JPN2010, oh my goodness you poor baby I am so sorry for all the pain and suffering. I have a colostomy but mine is nothing compared to what you and all the other sweethearts who have replied back to you. Everyone has given you first hand information to help you. I can pray for you and ask our Lord to help you and heal you. Glad you came to this site it is a safe place and a loving place for all of us to get some answers, and have shoulders to cry on. We rejoyce when there is good news we even have some laughter.
Welcome to this site and God Bless you. It will get better for you.
Dolly

• By amt52
• Reply 3357995 · In reply to 3357385 by Mare5785
• September 8, 2012 at 10:23 am
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Mare, What a wonderful story, that led to your son Ethan! They used Flagyl as an ulcer treatment as well. (It was tetracycline, pepto bismol and flagyl.) Flagyl made me sicker each time I took it: horrible nausea, vomiting, metallic taste. Now I call it an allergy, never want to have it again. And because of this 'wicked' drug, you were able to have your son. Life is so amazing. I had my two beautiful daughters when I was age 37 & 38. Was diagnosed with stage IV colon cancer at age 56. So blessed to be healthy while they were growing. Volunteered at school, Girl Scout leader for 10 years. They have paid it forward a hundredfold! Thanks so much for your support.

• By tjane
• Reply 3358299
• September 8, 2012 at 12:04 pm
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Mare was wondering after your son was born did your Crohns get worse? I felt great while I was pregnant but after words watch out. My Chrons raised its ugly head a few months after birth. My intestines perferrated and I got perintinitis. Ended up with a colostomy when I woke up. I was in the hospital over a month. I was able to get a reversal six months later. Four days after the revesal I peforated again and had an iliostomy for 6 mo months. Tried for another reversal and it worked that time. This last colostomy is permanate and was not an emergency. Much better way to go. I also hated the Flagyl and only took it a few times because I would get so sick. I was put on alot of prednisone during that time and now have osteoarthritis and osteoperosis. My surgery was also around 1983. I also had the TPN I had lost alot of weighed and was 86lbs and the TPN helped me put on some weight. I am now 107 and doing well. Since this last colostomy I have not had symptoms of Chrons. :)

• By herbsgal70
• Reply 3358363
• September 8, 2012 at 12:25 pm
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Hi mare - did you get the pull-up panties when you got the Depends? They have a great new one called Depends for Women - they are about $12 for 10 of them, but I get 4 or 5 nights wear out of one, if I don't have any leaks. They are form-fitting, cloth-like, and pretty peach color, to boot! You can wear them under jeans, or whatever, if you want extra protection when you are traveling , or just out and about. I will not go to bed, whether at home, or on the road, without pulling them on over my underpants - I try to wear an old pair of underpants in case I have an accident while sleeping I can just throw both the panties and Depends away, shower, re-apply everything, and go back to sleep if it is not too near morning. Good luck - sounds like you got the old-fashioned diaper type, and not the pull-up panties. Am I right? Hugs from Marge

• By lilymyiley
• Reply 3358674
• September 8, 2012 at 2:28 pm
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Hello JPN and welcome to this site.
I have an ileostomy. Lily was "born" on May 14 this year. My recovery when I was discharged from the hospital was a bit rough. I had more pain, and nausea than I did when I was in the hospital.
You may notice that your output changes day to day. It will take about 6 weeks or more for it to settle down and even then it will not be predictable. Sometimes mine is copious and watery and other times it will be like paste. I would recommend Immodium to help reduce your output and keep you from getting dehydrated. You must drink, drink, drink and then drink some more. Stay away from tea (unless it is herbal) as it has caffeine which is a diuretic. May soft drinks also have caffeine in them. Fizzy drinks tend to make your stoma more active as they create gas in your intestine and your stoma will "pass gas" lots.
Also stay away from drinks that have a high sugar load (regular gatorade) as the sugar pulls fluid into your intestine and will create more watery output.
For nutritional support I used Ensure Plus. It comes in tins and you can freeze them. I liked the chocolate and I would eat it like ice cream. It was actually quite yummy. Make sure you don't get the kind with fibre in it.
I hope some of this information helps. Please take it easy on yourself and know that day by day you will be feeling a little bit better. I know that sometimes it seems like an uphill battle.
Now....go get a drink!

• By S-Mile
• Reply 3358897
• September 8, 2012 at 4:10 pm
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Hello JPN and welcome! I have an ileostomy also and I remember in the beginning that I experienced a lot of watery stool as well. I would encourage you if you are using the roll up velcro type seal to always press it good and tight. I somehow didn't do it once and I can tell you, it has never happened since! Be sure to protect your mattress as well. Your output should come to some sort of normalcy soon as you get back to eating regularly. I was so happy that I could finally eat anything I wanted after my surgery but in smaller portions and like Mare says, chew, chew, chew! This is so important as a food blockage is no fun. Watch out for gristle in meat, mushrooms and various other hard to digest foods. I love mushrooms and when I want to include them, I chop them up finely before adding them to my recipes, remembering to chew well even then. Things should quiet down for you soon and I pray God's blessings as you recover and get thru this learning curve. After nearly three years for me, I have come to accept this as my new normal but it took awhile. So be kind to yourself and have patience. Let us know how you're doing and put your two cents in when you've got the time. So many kind and wonderful people here with a lot of good advice with indoctrination by fire!

• By Mare5785
• Reply 3359225 · In reply to 3358299 by tjane
• September 8, 2012 at 6:42 pm
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hello tjane.... YES... my crohn's got extremely worse afterwards. By day 3 when I was home after his birth, I was so sick and weak, I could barely pick him up to breast feed. My husband at the time would have to bring him over and place him in my arms as I could not pick him up. It was devastating, as during my pregnancy.. all the additional steroids your body produces made me feel wonerful.
They tried to get it under control over the next year but nothing worked.. eventually ending in a total blockage and my ileostomy.

@Marge... I think I goofed.. Yup.. I did buy the "old diaper" type.. : ( I don't think the grocery store had the newer ones. I will have to check. Nothing I can do now.. I already opened the package. I go ahead and try these anyway then search for the other ones.

@ S-mile.... SOOOOO right.. chew..chew..chew.. It will take some time to adjust, accept and live with the ""new normal", but it will happen!

Keep posting and asking questions.... You'll get there.. and you WILL feel good about yourself.

prayers

• By herbsgal70
• Reply 3359231
• September 8, 2012 at 6:47 pm
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Hi JPN - welcome to the "Inspire family" site. As I have told others, I sleep at night with Depends Pull-up panties over an old pairof underpants - if I should have an accidental breakthrough at night it is fully contained, and I don't have to worry about my bedding, or You didn't say if you were male or female, but if you are a female, I have found a new Depends for Women, that is slim, close-fitting, and a pretty peach color. They are about $12 for 10 of them, but I get about 4 or 5 nights wear out of one if I have no accidents. Little price to pay for a feeling of security. Someone just suggested I should be a spokeswoman for Depends - but they have been my savior! Hugs from Marge

• By jpn2010
• Reply 3359634
• September 8, 2012 at 10:25 pm
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Wow! Thank you everyone for all of your kind words and advice. I too was given TPN in the hospital after my surgery. I am praying I do not reach a point where I have to go back on that. Between the TPN and other fluids being pumped in, I ended up with severe edema. I then received several treatments of lasixs to help reduce the fluid. At first it didn't seem to have much effect, but as soon as I got home from the hospital, I ended up losing 18 lbs. within 4 days. I am not a big person - just 5 ft. tall, but I now weigh 88 lbs. Thank you again to each of you for your different suggestions. I will try various things and let you know how things are going.
Judy (jpn2010)