HealingWell
Search Close Search
☰

Total Colectomy Part 38

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
1 23 4 5 6 7
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/12/2010 4:34 PM (GMT 0)

Gilda, I have maintained my weight recently. My weight has always been low, but I'm stable at the moment. I agree, Bolthouse is wonderful! Their strawberry banana makes a great smoothie base, or it's very yummy on its own. The smoothies will help your energy level, and you might want to start taking a liquid multivitamin. Make sure you're getting lots of B vitamins, as those will help your energy. If you're dumping consistently, you're most likely losing the vitamins in food before they have the chance to be absorbed, so supplementing may help you feel better.

 

Biofeedback made me worse. I have a harder time getting any stool out than I did before, and these horrible rectal spasms are stronger and more frequent. My pelvic floor is stuck in full spasm, and the resting muscle tone in my rectum is through the roof. The goal of biofeedback was to get those muscles to relax, but I feel like messing with those muscles just made them tense more. If your diarrhea problem is due to rapid transit through the small bowel, biofeedback will not help you. Biofeedback does help people who are incontinent because it strengthens those sphincter muscles. If your doctors insist that you try it (I hope they don't), ask for a gastric emptying study first. They will have you eat some scrambled eggs with a radioactive isotope and they take pictures at regular intervals (30 minutes - 1 hour) to track it though your system and see how fast/slow things are moving. If that study shows that food is flying through your small bowel, then that is what they need to focus on fixing.

 

Have a great day, everyone!

 

Allie

Posted 10/13/2010 3:24 AM (GMT 0)
Hi Allie,

Thanks so much for your reply. My gastro and colo-rectal surgeon already know that I do have rapid transit. They recently did a gastro-gaffin study (I had to drink a big bottle of this horrible tasting oily stuff called gastro-gaffin (I think). anyway they said it went thru my system very quickly! Really, it is the gastroenterologist at Scripps Alternative Therapy, that suggested the Bio-Feedback. I am not even going to try it. Really, it involves me making a 60 mile RT twice a week and for what? I think I have told many of you on this board that I am seriously considering having an Ostomy done. This won't help the "fast motility" but at least I won't have constant "butt-burn" (sorry for TMI). Really it is a horrible problem because I feel like acid has been poured thru my rectum and this happens several times a day. I can't just take care of the problem with some ointment applied externally because I "burn" internally for up to 40 minutes after going to the bathroom (also I often bleed). My doctor told me that the colon produces a mucous that coats the stool so it is not painful from the stomach acid and bile which is in the small intestine. When one doesn't have a colon they can get this burning with bowel movements. There are many of you who don't have colons; do you get the burn? I think if I had an Ostomy that worked correctly I wouldn't feel things "coming out of me." Does anyone know anything about this awful subject. Thanks in advance for anyone's input.

Allie have a great time with Lizzie. Is she coming to visit you soon?

Gilda
Posted 10/13/2010 1:01 PM (GMT 0)
I had my GI appointment which didn't have the result I hoped for.
I guess I have to be satisfied with the smallest steps.
It is just so frustrating.
The bad thing first: my GI doc won't perform any tests before my in-patient stay since he thinks that this should be done while I am in-patient and by the endocrinologist who can interpret the results.
Also, he does not know the reason for the vein alterations but he doubts the correctness of the finding. However, I know that the finding is right since I have reviewed my older reports from the heart ultrasound and the abdominal ultrasound three 4 months and 14 months ago and when comparing the findigs one can see a significant development, a progressing obstruction of the vein and liver enlargement.
As I insisted and pointed out my new symptoms he agreed in doing another ultrasound when I am in-patient. if the finding was confirmed further claryfing must be done since the most obvious cause, right sided heart failure, is not present.
I also have a pressure pain in the upper epigastrumwhich is not worse with eating and stomach distension and thus, not due to the motility disorder...I wonder if this pain could be related to the cause of the vein obstruction. I know that neuroendocrine tumors of the mediastinum, eg. tumors of the thymus, lung etc and of the pancreas can block and/or compress this vein. And pancreatic neuroendocrine tumors are often associated with MEN syndrome.

The good thing: while last time, he just sent me to the neuroendocrine oncologist saying that he can't deal with this endocrine issue as he did not have enough competence in this subject he is now willing to take care of me together with the endocrinologist when I am in-patient.
He was also quite interested in my phosphorus level since they are consistenly on the upper range of normal or increased and this may be related to an endocrine issue with the parathyroid glands. Parathyroid hormones is sometimes secreted with neuroendocrine tumors, too.
High phosphorus is also seen in kidney/renal problems.

I am afraid that they will do the standard tests and that this won't be enough to rule these issues out, especially as I might have intermittent hormonal hypersecretion and an in-patient stay will only reflect a short period of time.
In addition one cannot exclude that there is still interference with the immune assays caused by the immunoglobulins. The effects from immunoglobulins can sometimes last up to six months. However, I can't wait so long I would drive nuts in the meantime as i continue to get worse with my endocrine issues.
I hope that if my GI doc takes care during in-patient stay and can talk with the endocrinologists the endocrinologist will take me more seriously and will not consoder my symptoms as psychosomatic cagain.

Regarding tthe anwer of the urologist I waited for: Well, thsi was another big frustration. Although he assured me at first that he was allowed to do surgeries his chief doc would not do himself the chief doc suddenly seems to refuse the cystectomy which basically means any surgery at all.
I begin to hate these chief docs since they only see their own reputation. I first wrote to the chief doc and he himself referred me to his neurourologist who is the second "man" in the hierarchy. And now he wants to speak with my urologist...this does not make sense. Moreover I don't have an urologists who takes casre abou me as I could not find someone suitable; I just go into the clinic to have the catheter changed.
In the mail the neurourologist sent me and explained the situation he did not even express his own opinion I had waited for. I guess it is all due to the chief doc, again.

Post Edited (pelztier86) : 10/13/2010 7:06:12 AM (GMT-6)

Posted 10/13/2010 5:10 PM (GMT 0)
I saw my doctor today and it is definitely a parastomal hernia. Boo hoo! He said these are pretty common with temporary loop ileostomies. He did recommend a hernia belt, which I will order ASAP.

He recommended I have the defogram in November and then he said if the rectum looks good, then he will go in and remove the rest of the colon and attach the small intestines to the rectum. WHAT?

I am very upset and have already cried because this is ANOTHER big surgery. The other surgery was just terrible and I can't imagine going through it again. UGH

If the rectum is still not functioning properly, then he said an end ileostomy would be the next step and with this he would attach a piece of mesh around the stoma to reinforce the abdominal wall and hopefully the mesh would prevent a parastomal hernia.

I am not even considering another surgery until the end of May, unless of course I need to have some type of repair for the parastomal hernia. He said he could always go in and place a few stitches around the stoma???? He said there is a chance the intestines can get trapped in the hernia causing a blockage. YIKES! And this obviously signals an emergency.

I may just tell him to leave my inert colon inside of me and make my temporary ileostomy a permanent, end ileostomy.

I am very depressed right now.
Posted 10/13/2010 7:30 PM (GMT 0)
Tracy, i'm so sorry i couldn't call you again... lol i was talking and talking, then realized the line was gone.. my internet was off, i'm not sure why, but i didn't have internet till now and when i don't have internet, the phone is off too!! so i couldn't call.

im so sorry about your dr's appt hon. i can totally understand your upset, another major surgery is the last thing any of us want. one is one too many.. why can't things be easy? but what can happen to the colon if it stays in just sitting in there? what can happen to it over the yrs? i know Rosemary has had it that way for quite a while now and nothing went wrong with it, but it just seems odd to leave a whole big organ inside w/o it being active..? i don't know, but if it's livable and you feel ok, then maybe it's no big deal and better to stay like that than having more major surgery..?

but about the hernia, sounds like it's not so simple to leave the hernia as it is. i really don't know what to tell you, but i guess what ever procedure you'll have, he'd better fix the hernia at that same time. i'm so sorry you're so depressed, hon, but i think that right now you're just too confused with everything that is going on and still so many question marks about so many things.. i would be confused too. right now you need time to think and figure out what's the best and right thing for you to do. i wish i could give you an answer, but i'm just like you, i don't know.

are you supposed to see your dr again some time soon, or are you just waiting for the defecogram on Nov? keep us posted.

Sarah, i'm so sorry for the battle you're having with all these drs sweetie :(  so sorry that a young lady as you should be coping with such hard health issues, instead of living your life, like ppl in your age should. just makes me so sad. all i can say is that you're in my prayers dear and i hope one day things will be better, MUCH better for you!

i'm doing ok, my system is slow, but i manage ok. my vaginal U.S is on the 24th, then i see my gyn on Nov 7th. but i've been told that a recto-vaginal fistulas are the hardest to cure :(((  i don't know, i'm thinking maybe to just not do anything about it. will see after the test. does anyone know what is TRUS test? i've heard it's for diagnosing fistulas, but what is that test and how is it done? thanks for any replies.

cookie, where are you?? how are you doing?? hope everything is ok with you.

Marisa, miss you, hope you're feeling ok.

well, so tired, heading to bed, good morning to y'all.

Posted 10/13/2010 10:45 PM (GMT 0)
Hi Hodaya,

How is your new job going? Do you have any problems with your health now that make working very difficult for you? I am still considering an Ostomy; actually for insurance purposes I have to decide within the next couple of weeks! I haven't mentioned this problem much but when I take meds to "slow my system down" I tend to end up with stomach pain and constipation. Today I am in pretty bad pain and when that happens all I can do is take 10 mg of valium, then eventually I can go to the bathroom. I either have one problem or the other! Rarely do I get a break. I would really like to know if you still are feeling pretty good; do you feel like th Ostomy helped you alot? Also, can you explain (or anyone for that matter) what a fistula is. Another problem I have had ever since the April 2009 SubTotal Colectomy is some sort of "leakage" that comes out on my low back (just above the butt crack). Whatever is leaking out is clear (seems like water) and has no smell. Usually I leak out about 3 Tbsps of this a day! So darn annoying and all 3 doctors I have asked say, they don't know what that could be and not to worry about it! Easy for them to say, isn't it! Has anyone had anything like this happen to them?

Gilda
Posted 10/14/2010 12:31 AM (GMT 0)
Peltzier, my hernia pales in comparison to your health dilemma. GRRRR Seems like there has to be a doctor that will take care of you and fix you. There are doctors here is the USA that are strictly diagnostic doctors and they take complex cases and try to figure out a diagnoses. I would assume there are not many doctors like that though.

Hodaya, I assume the colon can remain inside without causing any problems as long as colonoscopies are done routinely????? I am so angry because I thought I would have all the time in the world with the temp ileostomy....now I am faced with another surgery sooner than I wanted.

And of course, my mom thinks I should just get the colon removed, have the ileostomy taken down, and have the small intestine hooked up to the rectum. Of course, she said only if the defogram shows that my rectum is cured????

Hilda, living with this stoma is much better than being a slave to the bathroom. I spend 90% less time in the bathroom now and this includes changing my bag. As far as the leaky spot above your butt....did you google it to see if you get any hits?
Posted 10/14/2010 4:52 PM (GMT 0)

Hi Tracy,

Sooooooo sorry to hear of your peristomal hernia.  Yes these can lead to bowel kinks and obstruction.  When you have that defecogram, if he says your rectum now works, get the test on DVD and 4 copies, call me (I should be home Jan 5), then I can give you the names of pelvic radiology experts around the world to send this too.  The last thing you would need is a rehook of small intestine to a rectum that does not really work.  There is much more involved than anorectal angles looking good, and absence of rectocele's etc.  There is some mechanical thing with muscles and nerves called a "push to force."  I don't really understand it, but a pelvic radiology expert in Italy does understand it.  If you do not have the "push to force," or you have it and it is mis-directed, you would still not be able to go rectally.  With all I've learned, the U.S. is NOT the leader in this type of diagnosis  (even with docs like most of you have with all good intent.)

So wear that stoma belt for now and good luck.

Gilda,  rapid transit with an ileostomy would mean changing your bag very often as much watery rapid output would break down the barrier sooner than the "average" ileostomate and would necessitate often changes.  Even if you use an Eakin seal this would be an issue.  If you  did not change the bag frequently you would get peristomal skin burns, which if not controlled, can affect the adherence of the appliance.  BUT, it would solve the issue of butt burn.  Severe butt burn over the long term might do damage to your internal tissues.  How could it not.  I really feel for you.  But with proper amounts of bag changes and good equipment seals and peristomal burn powder or paste this would be a do-able option for you.  Good luck making what I understand is a very serious decision.

Good internet connect day at sea today.  Each day is not like that.  Will check in when I can.  Blessings to all of you.  Pray for me I stay healthy.  I have a long way to go .  AND the friend I was supposed to do the first part of this trip with had 2 family crises on night prior to us leaving, so I'm on the QM2 alone.  So far so good.  AND arrangements have been made for a friend from England to do the overland London, Paris, Rome part with me until I connect with the West Coast Africa ship to Capetown where another friend will meet me via flight.  So a bit of last minute business to tend to and some stress though nobody's fault.  But I have danced and am attempting to relax and not catch anything all at once.  So, here's hoping for all of us.

Rosemary

Posted 10/14/2010 6:12 PM (GMT 0)
Gilda, my new job is really nice compared to the old one and i really like it and the ppl there are really nice. i'm sooo glad i found this job and it's so close to my home, it's just great :)

about my health, with the ileo i feel so much better and it's much easier to function now - this is as close to perfect as it could be for me, compared to the last 17 miserable yrs!!! i couldn't ask for better than this, really. i honestly do feel great and w/o the ostomy i could never have a life - bottom line, the ostomy def gave me a new life, one that i'm truly SO grateful for.

about the fistula, i'm still not really sure what that is. it was first created just 2 mons before my colectomy last yr. it was one morning when i was straining to have a bm that i felt a stabing pain, but the pain wasn't in one spot, it felt like a needle was launched from my rectum straight to my bladder and it was VERY painful. i thought it was just a one time thing, but the next morning it happened again :( as painful as the day before. that's when my fistula was created and i know for sure that if i had the colectomy just few months earlier, this wouldn't have happened.

a fistula, as far as i understand it (don't know much about it myself yet) is like a canal created in the intestines. it can be created either in the large/small intestine, between the intestines's loops and other locations of the intestines. mine is placed between my rectum and vagina (or maybe even the bladder is also involved too - dunno) and it's called a recto-vaginal fistula. this canal is actually an openning/a passage for secretions to go through one area to another, like the stools can go into the vagina and the opposite - the vaginal secretions including blood of the period can go into the rectum - that's what has been going on with me lately. it has nothing to do with the surgeries i had - just the opposite - only b/c i didn't have the colectomy on time, i developed this fistula. SOOOOO frustrated with my drs for prolonging my colectomy, there was no point in that, but yet they just prolonged things and now i'm paying for that.

the leakage you're describing sounds like a pilonidal sinus to me, BUT..... i of course can't be sure of anything. i dont know much about those either, even less than i know about fistulas. maybe the stuff that's coming out of it is not inflammatory and that's why your drs think it's better to leave it alone..? i dont know. but i suggest you make sure if it really is a pilonidal sinus and what you should do about it. i hope it's nothing major.

Gilda, i truly believe an ostomy can give you a much better qualitiy of life. it did me, i don't regret it for even a second, i love it!

i'm just so sorry you have to be so stressed b/c of the insurance issue and have to make a decision out of stress. i hope things work out best with what ever you decide to do. (((hugs)))

Tracy, i'm so sorry for all that.. did you schedule a defecogram yet? oh honey, i can totally understand your anger and frustration. i hope you're ok. love ya lots!!! oh and i really enjoyed SO much talking to you too :))))) keep us posted about the defogram.
Posted 10/14/2010 9:24 PM (GMT 0)
Gilda, i've just learned that a fistula can be in any part of the body, not just the intestines. saw some pics of it in google images.. WOW......
Posted 10/14/2010 10:33 PM (GMT 0)
Hi Everyone and thanks so much for your input! My doctor's office just called me and said that if i really feel that I am "wasting away" (I told them I am extremely weak and can hardly consume more than 500 calories/day) that probably they will admit me to the hospital for IV feedings. My doctor said he cannot explain all of my symptoms but thinks that I "might" be better off with an illeostomy. To me it seems logical that a person without a colon would have major problems with diarrhea but most of you on this board don't; just the opposite actually! I know that I kind of had a different problem then most of you in the beginning; because I was never officially diagnosed with "colonic inertia." The only thing that was confirmed twice was that my Transverse Colon (middle part of colon) was extra long and very twisted. They would have liked just removing this section but said that re-establishing blood flow would be very tricky if not impossible. Also, my surgeon at that time (April 2009) felt that probably my whole system was slow, so taking out the entire colon wouldn't be a big issue. Now, I am really, really scared and unsure of what to do! I am going to see the surgeon at 10:45 tomorrow morning and he said if he feels it necessary he will have to admitted to the hospital for IV feeding. He said he wants to talk to me about having an Illeostomy. Hodaya I am so glad that you are doing so much better; that's encouraging! Rosemary, you do have a point about fast output now = fast output after illeostomy. the only promising thing is; I can slow things down with Vicodin and Lomotil but then I really "slow down" and get low pelvic pain. Maybe with an illeostomy I could slow down the output with meds but not have the low pelvic pain? I would just hope i wouldn't start getting pain at the stoma! Does this happen often?

Hey, has anyone heard anything from/about Lizzie? I am worried about her!

Gilda
Posted 10/15/2010 12:34 AM (GMT 0)
Hodaya, I may not even have the defogram...I NEVER want to go back to the way I used to live. EVER, EVER, EVER.....I am leaning toward NOT having the takedown and asking my doctor to repair my hernia and then give me an end ileostomy.

My life is so much better with the ileostomy.
Posted 10/15/2010 8:44 AM (GMT 0)
Tracy, i totally agree with you, i don't see any point in going back to the way it was, for neither of us - the ileostomy gave us a whole new life, why go back...?? every dr i see, whether it's my family dr, the gyn, my surgeon, keep asking me if i want to close my stoma, but like you said, and i'm totally with you - NEVER EVER!
Posted 10/15/2010 10:26 PM (GMT 0)
Boy I just had a very discourging appointment wtih my colo-rectal surgeon. As I think i told you, I had written him an email 2 days ago telling him how weak I feel most of the time and how I have to "fight" to maintain a weight of 104 pounds. He said to come to his office and he would probably have me admitted to the hospital for IV feedings and he would "talk" to me about a possible illiostomy. I went to see him this a.m. and he just wanted to admit me and then within a couple of days do the illiostomy. When I started asking questions about how exactly this surgery would help me, he seemed to get angry! He said, you wrote me an email saying you have no quality of life and can't go on anymore living this way. Now I am telling you to have an illeostomy and you are not sure. I said, "I just want to know how you think it will improve my life" since my problem seems to be fast output so therefore I would still have fast output, just into a bag. He said, "so what?" I said, will the bag fill up quickly and be very obvious to others around me? He said, you just tuck the bag into your pants! I said, I remember seeing a guy (worked with him) who often had this big bulge kind of at his beltline, I thought it was a tumor. It turns out the guy had an illeostomy and it was the full bag I was seeing! The doctor said well we have bigger bags now! That doesn't make any sense to me; how is a bigger bag going to be less obvious?! Anyway, he seemed to think that I was really wasting his time; he seemed angry at me! He has never treated me like this before. He is the head of surgery at Scripps Hospital and has a very good reputation but said he basically doesn't know what to do about my case except to try an ostomy. Then I told him that another GI I saw about 1 yr. ago suggested doing the defogram (or whatever it's called) and the small bowel manometry test. He said, "I don't know anything about those kinds of tests but why don't you go see him?" I feel very depressed. This doctor has always been great but today he seemed to just want to get me out of his life!

Gilda
Posted 10/16/2010 1:17 AM (GMT 0)
Gilda, I am so sorry your doctor treated you like that....can you go see another colorectal doctor? I actually saw 3 before I chose one and I am very happy with him.

Hodaya, I forgot to tell you this...when I saw my Doctor Wednesday, he stuck his finger into my stoma.....OMG, I almost passed out because I thought it would hurt....BUT, it did not hurt at all. I actually felt nothing....

Have you ate bananas? I ate a banana yesterday and clumps of banana came out of my stoma???? I made sure to chew each bite thoroughly too, but it still clumped up. Is this normal? It scared me and I may try to stick with baby food pureed bananas from now on.

I also bought some canned peaches and pears to snack on, but I am now having 2nd thoughts and am nervous to try them.

I ate the banana yesterday and some chocolate candy bars, and then this morning had waterfall diarrhea. I had to take immodium to slow down the output...UGH...never thought I would suffer from diarrhea. ****

Have you had your b12 checked? Because I had my levels checked twice and the 1st time it was just over the normal limit, but the level from Monday showed it was low. I went back to the doctor due to severe all over body itching. She said the itching could indicate a liver problem, but she also thinks the low b12 could cause this itching. So, she did more blood work and I have to get b12 injections every week.
Posted 10/16/2010 9:43 AM (GMT 0)
Sorry, Gilda, but I have to say something to you. I agree that your doc did not treat you very well and just did not answer your questions properly.
However, I think he is right in some way: you say you have no quality of life, you can't do nothing, you struggle with bowel movements very day (either too little or too many bowel movements) etc.
So WHY worrying about a possibly filled up bag when it can improve your quality of life by releasing you from the dictature of your bowel movements? Sure, it can be that due to your quick transit you have to change the bag often or empty it more times than others. However, most folks with an ileo due to chron's etc also have rapid transit and have this "problem" AND they are glad that the running bowel movements just go into the bag.
Moreover there is the option to slow things down with an ileo when you risk to lose too much water, electrolytes etc. I know that you don#t tolerate this at the moment BUT I assume that this could change with an ileo since you might have some rectal outlet issues being heaviliy aggravated by the narcotics (they increase the spincter and rectal tone, decrease sensation etc)

I am sorry, I am probably very emotinal when it comes to this issue since I fought so hard to get my ileo and I still have numerous (bowel, bladder and other) problems BUT I am so glad I finally succeeded in getting one.
I have a permanent bladder catheter that drains the urine directly through the abdominal wall into a bag which I have to wear around the lag - 24hours a day. This bag fills very quickly since your urine output is generally much more than your stomal output and the bag is smaller than an ileo bag. Soemtimes, I have to empty it every 30 minutes, sometimes I can go for 2 hours without emptying, but this is only managable at home when it does not matter that much how heavy the bag becomes. When I am not at home and have to walk then I can't do this as walking becomes difficult and I have to prevent the bag from sliding down the leg.
Moreover the more the bag fills the more there is the risk of leaking. Urine stomas/bags tend to leak much more than fecal stomas do, in general.

I can't wear shorts in the public because everyone would see the bag. i myself would not mind that much about this but people tend to react strangely so I avoid this when it is possible but not at all costs. Even when I don't wear shorts the filled up bag is very visible under the cloths. BUT there are worse issues. This does not determine how I look at my self and when there is someone who can't deal with this issue which is minor for me then I just know that she/he won't deal with me actual big issues.
At some point one has to decide which and who are most important in ones life.
Posted 10/16/2010 2:06 PM (GMT 0)
Good morning everyone! Why is it that I can never sleep in when I can? I just dont get it. I have been up since six this morning and cant go back to sleep. I think I will get out and go for a walk. Anyways, I am slowly getting back to my usual self. My story has been in the media a lot and it has been very exhausting. And I do not think it is going to end anytime soon. But it is good to talk about what has happened to my family, it helps me heal I guess. That or all the medication is working!!

Gilda, your doctor was being a jerk! He should understand that this is a huge decision and he needs to answer all your questions so you can make a right decision. My doctor was always great to sit with me and talk and answer all my questions so I knew what I was getting myself into. I know it is so hard to go see a new doctor cuz then you have to start all over. I hope you can make a choice on what is right for you and be comforted to know that you are doing the right thing.

As for me, I am feeling pretty good. Still take Miralax and papaya enzyme to help me go. Still stay away from a lot of foods that tend to get people in trouble. No fruit, veggies, most meat, hot dogs,...........you know all the good stuff. But I am used to it by now. I just love when people ask me, well what do you eat?? Its weird cuz all the stuff you are suppossed to eat, we should not eat.

Well, I am going to head out for a walk since sleeping is out of the question. Love you all!!
Posted 10/16/2010 3:06 PM (GMT 0)
Very impressing...
retyped this from the video:

Interview with GOD

I dreamt I had an interview with GOD.
So would you like to interview me God asked.
“If you have the time”, I said.
GOD smiled. “My time is eternity. What questions do you have in mind for me?”
“What surprises you most about humankind?”
GOD answered:
“That they get bored with childhood,
They rush to grow up and then long to be children again.
That they lose their health to make money
And then lose their money to restore their health.
That by thinking anxiously about the future
They forget the present
Such that they live neither the present nor the future.
That they live as if they will never die
And die as though they had never lived.”
GODS hand took mine and we were silent for awhile.
And then I asked:
“As a parent, what are some of life’s lessons you want your children to learn?”
“To learn they cannot make anyone love them.
All they can do is let themselves be loved.
“To learn that it is not good to compare themselves to others.
To learn to forgive by practicing forgiveness.
To learn that it only takes a few seconds to open profound wounds in those they love
and it can take many years to heal them.
“To learn that a rich person is not who has the most
But is one who needs the least.
To learn that there are people who love them dearly
But simply do not yet know how to express or show their feelings.
To learn that two people can look at the same thing
And see it differently.
To learn that it is not enough to forgive one another
But they must also forgive themselves.”
“Thank you for your time”, I said humbly. “
“Is there anything else you’d like your children to know?”
GOD smiled and said…
“Just know that I am here.”
“Always.”
Posted 10/16/2010 3:36 PM (GMT 0)
Gilda, I can attest that I could care less about the bulge of the bag. I thought I would be real secretive and embarrassed about the bag, but I am not. My quality of life is so much better and I wish I would have had gotten it sooner.

I have had issues with the bag filling up quickly, but it has not interfered with my life at all, this includes my job of being a bus driver. I just go to the restroom at each school and empty my bag if necessary. No big deal at all. Yesterday, I had ileostomy diarrhea and worked 12 hours....I just made sure to empty my bag when I was near a bathroom.

I understand the unknown is very scary, but having a bag is nothing like I thought it would be. In my mind, I assumed it would be like having a foley catheter, which I had to wear for 4 weeks, and I hated every minute of it.....BUT, as Peltzier has described, it is nothing like that. I can now go hours without even thinking about the bag or feeling it. It is great.

I am no longer a slave to the bathroom.

Peltzier, I am so sorry for your health issues. I will pray for a doctor to come along that can help you.
Posted 10/16/2010 3:46 PM (GMT 0)

gilda,

this guy sounds like a jerk.  be glad you saw this side of him prior to surgery.  go elsewhere.  the thick and thin of the effluent is easier to manipulate with a stoma, correctly made stoma, that is.  if too thick, drink caffeine , and grape juice, eat cocolate, drink tea.  the bigger bags means you have more time between emptying.

in one post you said they had you drink gastrograffin.  this contrast has major laxative properties.  your already fast transit was likely sped up.  you are with some docs who don't know.  that is why they are being ugly to you.  what they would like to say is "i'm sorry, i really don't know what to advise you."  so they get defensive instead and put the onus of the decision on you.  then if it does not work they can blame you.  I only know this because of the road i went down.

find a doc who is more tecnical than political.  best of luck, rosemary out to sea

Posted 10/16/2010 5:46 PM (GMT 0)
Hi Peltz,

good perspective you shared on your earlier post.  As long as bag or bags are working, what others think really does have to take a back seat.  I for one will be very thankful if I never get any adhesion reobstruction and that my one bag does keep working.   Somehow I missed that you had two bags.  I'm sorry about this but your many health issues are beyond my comprehension but am glad you have a handle on them and wish you the best in communicating them to your docs and finding one that does understand.

You're right managing the effluent flow is sooooo much easier with an ileo as certain things thicken and certain things thin.

Loved your interview with God.   So true.  I just think of and know many people who do not have the perspective we on this forum have to each of our own degrees.

I'm currently on a ship wtih 3,000 people and so far able to dance and eat and have a working ileostomy.  The tragedy of falling into the wrong medical hands that lead me to need the ostomy does loom in my mind, but on rereading your post to Gilda you have helped me immensely to enjoy the now and be thankful someone was able to do something to keep me alive.  Thanks, Rosemary

Posted 10/16/2010 8:26 PM (GMT 0)
Rosemary,

Problem is that my urine bag is not working very well/I still have huge problems with my bladder due to chronic infection and pain. my bladder and urethra have become totally useless and a bug problem. one cannot have a permanent bladder catheter for more than a couple of years since this increase the risk for bladder cancer. usually, it is not a long-term solution.
that's why i struggle with my catheter - not emotionally but physically and if a bag does not provide adequate relief then you have a harder time to accept the d the issues of changing etc.
everyone tells me that something has to be done since my risk for chronic kidney infection and subsequent reanl failure increases with time passing by and still having the catheter. I am permanently on antibiotics and thus, I might not even feel a chronic infection in my kidneys which can cause vast damage nonetheless.

Don't kow how to describe my situation...so many problems...can't concentrate on one issue..and can't find a doc who is willing and capable to take care about at least ONE of these issues. Feel as if I have no perspective at all. Further education? not really. Partnerhip? Does not even know how this could work and if there was a male who could deal with all these issues. And most important quality of life? Not really existent when everything will stay the same from now. I am not able to do anything which is not related to medical issues. I used to draw and was pretty good in it. I was able to get lost in good books. I feel as If I have lost some parts of my personality due to the chronic disease - not so much due to the disease itself but also due to the lack of caring by the docs and the constant battle with them which drains you emotionally so much and leaves no place for other thoughts or intellectual things.
Posted 10/16/2010 10:26 PM (GMT 0)
Hi all I haven't been on here in quite awhile.   I have another major surgery coming up on November 8th.  I have to have a hysterectomy which will be an open abdominal procedure due to all the previous abdominal surgeries.

I will have my OBGYN plus another general surgeon that specializes in removing other organs from the uterus.  They feel like my intestines have possibly fused to my uterus.  I had an ablation and D&C on August 13th and have nothing but major problems since.  I am in constant pain and have ended up in the emergency room a couple of times.

They told me that I might have to have a temporary ileostomy if things are a mess when they get in there.  They told me that this is a high risk surgery and of course I am scared to death.  They are doing it at North Carolina Baptist Hospital so they will have access to all the specialists if they run into problems during surgery. 

I really hate this because I have been doing so well with the colectomy surgery.  I am able to go to the bathroom 3-6 times a day with no problems and everything just works great, now this problem. 

Jen

C-Section 1998

C-Section 2000

Abdominoplasty with hernia repair 2002

Gall bladder 2005

Total Colectomy  October 26, 2009

Emergency Exploratory surgery November 17, 2009

Alablation and D&C August 13, 2010

Scheduled TAH 11/8/10

Posted 10/17/2010 10:09 AM (GMT 0)
You girls are busy posting!

Next week at this time I'll be on MY cruise! Little one compared to Rosemary's! I'll be going on a 7 night Caribbean cruise, and the following day home, I get the pleasure of doing ANOTHER bowel prep! ugh! This Thursday is my pre-op appointment for my surgery that will be on Nov. 2nd. I'm planning to be home that night - but they most likely will end up keeping me for 24-48 hrs.

Peltz. loved the interview with God.. thanks for sharing. You have so much going on, I just want you to know I think of everyone here often when I say my prayers!

Gilda, your doctor was a jerk! I don't understand how they can be so great one day and a jerk the next! I totally understand why you would question him, what I don't understand is WHY he didn't realize you'd have questions regarding such a drastic surgery! Hard to think you have this surgery for horrible constipation, because you can't go.. and than end up with the runs all day! It makes me glad I didn't have the entire colon out, but makes me wonder why they can't check the small intestines for this rapid transit before people do have the whole thing out...

Tracy, oh my.. theses surgeries just don't seem to end for any of us! I don't know anyone in my personal life who has had as many surgeries as we all have, crazy! I can tell yo one thing, since my resection, my bowels DO move - more than ever before! I was sooooo constipated and it usually was a week or more of having no BM's and than I'd end up doing some type of enema, but since the surgery - I go one or 2 times a day (amazing!). I don't go a lot, or as much as I think I should.. (my 8 yr old goes more), but I do have to go almost everyday (and no longer using Miralax!). HOWEVER, I get the urge but boy.. it is still so hard to get it out of the rectum! I most usually still need a fleet (sometimes not) but I still always have to strain and have to push around the anus and on the perineum area to empty. I'm hoping my next surgery will help - but the dr. isn't making any promises. I really recovered from the last major surgery so great, but each one is so different.

Hodaya, so glad to hear that your new job is going well! Regarding the recto-vaginal fistula I have read some on this and there is another board I use to post to, and occasionally visit - that had many women who had this issue. It's called hystersisters. Look under the topic of Pelvic issues, you should find some additional info on it.

Rosemary, I leave next week for my cruise, excited! We return home on a Sunday, and the following day - I need to do a bowel prep! I guess that is one good way of getting empty after a cruise!

Jen, I can understand your apprehension on facing yet another major surgery! You too should check the hystersisters site, if you haven't already. I had my hysterectomy done March 2009, and KEPT my ovaries. I love not having my monthly friend.. :) At the time I had that surgery, I also had my first pelvic reconstruction surgery.. plus a bladder sling. It was over 8 hours in the OR, and by far - my hardest of all surgeries so I really can't tell you my experience, since it was so much more than one procedure. I have a few friends however, that had just hysterectomies and bounced back amazingly, and hope you do! My uro-gyn is a top doctor, and he would always attempt a lap instead of open, and my last surgery he did - was a lap, not open.. and all went well. There is always a chance it would have to be open because of scar tissue.. I have had 4 major - open procedures before, so thankfully - my last was still able to be laparscopic.

Marisa, glad the counseling is helping you, what a stressful situation! I can't even imagine.. (hugs)

Allie and Lizzie, hope you both are having a ball together!

Janie & Judy.. miss you both!

Know I'm forgetting a few that haven't checked in recently.. hello everyone!
Posted 10/17/2010 2:49 PM (GMT 0)
Gilda, this dr is a jerk, that is no way to talk to a paitient! unfortunately, i've had my share with rude drs and was going out of drs offices crying so many times, including my current drs. you find yourself a new dr, one that will treat you with respect and give you the care you need. you deserve at least that!

as to the guy with the bulge, i guess he was just too lazy to go empty on time lol. we just empty before it gets too noticable. no probs with that at all. as you know, i've already started going to work again and i don't have problems with ppl noticing it as long as i empty on time.

i know how heartbreaking it is when you feel so bad and need your dr's help, but he treats you like.... i know how it feels :(((( you go and find yourself a better dr. these ppl shouldn't be drs!!!

Tracy.... OMG!!!! i CANNOT imagine ANYONE sticking his finger IN MY STOMEE!!!!!!! OUCH!!!! so help me G-D, i will never let any dr/nurse or anyone else ever ever do that! poor girl, how horrible!! it also seems scary to me, like when he sticks his finger, the stoma may just sink into the abdomen.... whether i'm making sense or not, i just have the most horrible thoughts.

i dont dare trying bananas, those will surely cause me a blockage. i did try canned fruits, but they make me extremely gassy :( bananas slow you down, so i think it's normal for it to clump up. bananas are not for me, that's for sure. my B12 is fine, cuz of my system is SOOOO slow, i don't have probs with absorbtion, my blood tests are good. at least there's yet a plus in having a slow system, huh? sorry you need the B12 injections tho, but i think you still may slow down with time, for some ppl it just takes longer to slow down, but it only means your smalls are normal and not abnormally slow like mine.

Sarah, the intervew with G-D is beautiful and so true!! loved it!! as i said to Gilda, i can so relate to how you feel about drs that don't care..... as i said, i've had my share of experience of this over the last 17 yrs, not as much as you, but i did. it's devestating.

Rosemary, you are so right about the drs behaviour. so sad but true. that's what my dr kept telling me after i asked for the ileostomy, he just made sure to always remind me that i asked for it. drs make me sick.

Marisa, good to hear from you and i'm glad you're doing well.

Jen, best of luck to you! hope nothing goes wrong, including bowels issues.

Jenise, have a great time before surgery. thanks for the info about that board, i'll check it out. check in when you're back from your cruise.
✚ New Topic ✚ Reply
1234567