I have colorectal cancer and problems with my ileostomy and watery stools...helpppppppp

On Nov 16, 2012 5:09 AM ajp1228 wrote:

Oh, I hope there was nothing major wrong and that you're ok now!  Mother has been back on her Vitamin D capsules for a few months now - she took them before all of this started.  I've been trying to take them, too, for the past 2-3 years (although I forgot about them all that time I was staying with her); they say it's good for women's bone health.  Mother has been on B12 shots for several months, after I talked them into checking her levels one of the times she was hospitalized for dehydration when she had the ileostomy.  I had read that the ileostomies keep B12 from being absorbed properly and that deficiencies are common.  She didn't eat a lot of meat before this, anyway, so she could have already had low levels.  We do the shots at home - the home health nurses had been teaching me and then supervising me until this month.  The nurse released Mother from home health last month, so last week I gave her the shot all on my own. 

She's doing much better now, finally eating a little better although not as much as she should yet at mealtime.  She's been snacking more, though, on peanut butter, apples, cookies, and raisins.  She's gained some strength now and has been able to get out some.  We've been out to eat a few times, so she's tried a few different foods and they've been tasting good, or at least ok.  Her favorite is still the bbq sandwich with the Tennessee Whiskey flavor bbq sauce...lol...and she also really likes a chicken salad sandwich from a local place, the Hot Dog Hut.  I wish she could think of something she'd like to have at home which she could fix for herself; she's still too dependent on me for meals.  We went to the grocery store today, but she didn't get anything different except for a couple of potatoes to bake.  She wasn't interested in the canned soup and said nothing in the frozen food section looked good to her.  However, I don't think she looked much; she was getting a little tired by the time we got to the frozen section.  But the last time I looked I didn't see much that looked interesting.  I guess we'll try another grocery store which is smaller; maybe she won't be as tired and they may also have something different in the frozen section. 

She had a CAT scan last week and saw the doctor this week.  He said everything looked good - except they found a "tiny" spot in her lungs which they want to keep an eye on.  Normally, evidently, they wouldn't be concerned about it; but because she's considered "high risk," her doctor wants her to have another scan in February to make sure it isn't growing.  At least this scan will just be of the chest and she won't have to drink the barium junk like she did for the intestinal part of the scan last week.  We were a little worried that the "banana smoothies" with the barium would make her sick and that she couldn't drink much of it; but she did ok and was able to drink one of the big bottles, which was a lot for her.

Mother is still mildly anemic.  He asked her about taking Geritol in applesauce, but she tried that back when she was still having the stomach problems and it made her sick, so she won't take it again.  Then he suggested raisins, which she has been eating, so maybe she'll gradually get better from that.  I might have to try to encourage her to eat more iron-rich foods, if she will try them.

Please let me know how you are; I really hope you didn't have a setback.  Maybe you just had a touch of a bug.  Mother had a mild tummy ache a few weeks ago and I think also took a Zofran for mild nausea, but she was ok the next day.  We think she might have had a touch of a mild bug or something.  Also, I hope the supplements help you feel better.  If you don't think the B12 is helping, you might want to ask about the shots; I've heard the tablets often aren't well absorbed.  I've also heard that the sublingual tablets, which dissolve under the tongue, are absorbed much better than the regular tablets.

Hi!  Well, I went to the Dr. and he sent me for blood work, urinalysis and a CT scan.  No blockage was found, thank goodness.  He sent me home and said to stick with only liquids for the rest of the day and to not take any of my new meds.  The next day he had the nurse call me to see how I was doing.  She called me in some Levsin and told me to gradually try soft foods.  I didn't start the Levsin until Saturday afternoon but it helped.  By Sunday I was back to eating solid foods and having no spasms.

Went back to see Dr. on Wednesday and he has the same suspicions that I do - all or some of these new meds are the culprit.  He said if you look each one of them up they all list GI trouble as a possible side effect.  So, he doesn't want me to take any of them right now and wants to see me again in 3 weeks.

See, I felt real uneasy when my family Dr. was prescribing all these things but took them anyway.  I had planned to tell my surgeon about them the next time I went anyway.  The day that I did go see him and was having the spasms (and he got to witness it) I told him about the meds.  And, I told him that from now on, I don't want to be prescribed anything without all three Drs. (family Dr, surgeon, and onc) being consulted and on the same page.

BUT...  Get this - I also saw my Oncologist this past week, right before I went back to the surgeon, and he said he couldn't imagine how the meds would bother me!  ????!!!  Well, I'm sticking to what my GI surgeon tells me, right?

Oh, by the way, when I went for the CT scan, what they gave me to drink is totally different now!  They said they just started using it about 2 months ago.  It isn't the chalky stuff anymore!!  It is clear and tastless and they can mix it with a soft drink!!  So much easier!!!!

That episode of spasms lasted close to 6 days...  The surgeon called it a set-back and a big hit.  Especially since we don't really know exactly what caused it.  

My nerves are shot.  The part time job has really turned into part time, as I have yet to be able to make all 3 days in a week.  And when I do make it, I'm all stressed out when I am having one of those days where I am back and forth to the bathroom.

I have the feeling that my surgeon thinks I should just hold off on trying to work.  He didn't actually say that but said I shouldn't rush things as I still have a good year of healing yet to do.  SS Disability turned me down, or course, and I'm in the appeal process.  I finally contacted a lawyer to help me with it.  I'm adding my mental state as a factor, which I have a long history of depression and anxiety and it's just worse now.  Especially now because now it's Christmas...  My Daddy spent last Christmas in the hospital and died on the 29th.

Oh, I'm so sorry your having such a rough time emotionally.  I hope you and your Daddy both are Christians and that you have the promise of seeing him again in Heaven.  I lost my dad in March of 2010 but he was 94 years old and had a good life up until he got sick about 5 weeks before he passed away.  He was out of his head during most of that time and I don't think he was suffering much, so I am just thankful for the life he had.  It was time to let him go and visit his family who were already in Heaven.

Medicine can cause all kinds of problems, especially when you're on multiple meds.  It's good that you're going off of them for awhile.  Mother was prescribed Lopressor (sp?) because her potassium got way off when she was dehydrated in the hospital, causing her heart rate to get way too fast.  Her primary care doctor gave us a new prescription for it, and no one mentioned anything about getting her off of it.  I asked her doctor about it last week, and she said she can now gradually reduce the dosage and monitor her blood pressure and heart rate to make sure she doesn't still need it.  Mother is having anxiety issues now, and I looked up that medicine again and saw that anxiety was a possible side effect of it.  The doctor said she didn't know anything about it's being a side effect and also said Mother is taking a very low dose of the med.  I don't know if the med is causing the problems or if it's just stress-related to all that she's been through, but I'm glad she's getting off the medicine if she doesn't need it.  By the way, she is taking another med now for the anxiety and it's helping.

I hope you are feeling better now and that you are able to work a little more through the holidays.  I'm sure working and staying busy would help you cope better with the memory of your dad.  They say the first year is always the hardest, and you've got your illness on top of that.  You have good reason to be moody, but you've got to fight it and find reasons to be thankful.  First, you can be thankful that you are in the recovery phase from the cancer treatments and that you're continuing to heal.  :)

On May 07, 2012 2:41 PM retirednurse111 wrote:

On May 07, 2012 4:39 AM ajp1228 wrote:

My mother had surgery on 2/22 and is having the same problems with her bags.  Her stoma is very flat and is located straight out from her belly button.  We've tried several different things; some worked sometimes but not others.  We are having somewhat better luck this past week with Coloplast convex one-piece bags and the Coloplast Moldable Rings as the paste.  I think the rings are about the same material as the strip paste you can also buy, but I seem to be having better luck with the rings.  I don't leave them as rings; I roll it out between my hands into a long roll and then reshape it into a ring and put it around the hole in the bag.  I try to get the paste fairly even around the bag but maybe a little thicker in the places where it usually leaks.  Then we have one of the store-bought rice sock things which I microwave for 2 minutes and then put on her bag for about 15 minutes.  Someone told us that the key to getting it to stick is to get it warm.  We are still inconsistent with wearing time; we sometimes have to change it after a few hours and then finally one will stick for a few days.

I've tried Marathon Liquid Skin Protectant on the red skin around her stoma, and that has seemed to help some, although we've not used it long enough to be sure how well it will work. 

Be sure to change the bag as soon as you notice a leak or if you start to itch or burn around the stoma.  Any itchng or burnng means stool is leaking under it. 

Her doctors finally put her on Immodium to slow down the liquid stool, and it seems to help a little.  The info we have says cooked apples, applesauce, cheese, potatoes, and bread are some of the things that help thicken the stool.  We noticed recently after she ate a chicken tender salad that the stool was liquid that night, probably from all the lettuce.

Thanks for responding!  I too have found that the coloplast convex one piece works the best....I also use the belt.

The paste works the best for me....dont be afraid to use too much.....it just retracts away.

I am now making it about 3 days at a time,  sometimes an occasional leak.  I eat almost everything I want, but havent tried corn yet and its killing me.

I take Lomotil and generic fiber Metacmucil caps (12 a day) and a prescription for Colostipol, and now the diarrhea is only in the early to late evenings.

Best of luck to your Mother.....these are trying times, but have her pray to St. Peregrine, Jesus and Mary...they will pull her thru it!!

Love Fran

Do noteat the corn!!  Ask your dietician or someone who is helping you with dietary needs.  I was in the hospital because of critically low sodium levels and no adrenal glands, so I was in for a few days to keep me from circulatory collapse and death.  Down the hall from me was a gentleman who was also dying to eat corn and did; he ended up with a severe blockage which ended him in the hospital.  Don't know his outcome, but I'm sure you don't want to go to the hospital!!! (sometimes it requires surgery).  I have a double-loop ileostomy and was told not to eat corn as it doesn't get digested (into little pieces), but stays hole which will accumulate to cause a blockage and no output.  Hopefully you have not tried corn yet.