HealingWell
Search Close Search
☰

Total Colectomy Part 38

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
1 2 3 45 6 7
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/23/2010 2:53 AM (GMT 0)
Jen, so sorry to hear you will have to go through another surgery. But I guarantee you you will love your hysterectomy. I had one six years ago also done through the abdomen. That was hard to recovery from but not worse than anything you have already gone through. You will love not having your period and cramping every month and no worrying about birth control. I just love it.

I have had so many dang surgeries I have nothing else that can be removed!! Still working through issues with my brother. But I think I always will. Keep having flashbacks of the grave he was laying in. Maybe one day I will be able to get these terrible images out of my skull!!

And also all this talk about Munchausens, I also went through the same thing with a doctor. So sad, but it happens to a lot of us people. Really?? Who would want to fake any of these symptoms. I could find much better things to fake.

Feeling like I am getting the flu, darn!! Hope it does not stay for long. Mom and sick just does not go together!! Have a good weekend everyone. Love you to pieces!
Posted 10/23/2010 5:22 PM (GMT 0)

Sarah, this latest development and false diagnosis break my heart. Is there any way that you could return to Italy to see the specialist there again? Or does the good neuro-urologist know of anyone who you could go to that would allow the surgery to be done? The Munchausen suspicion is obviously ridiculous- you have a permanent catheter...no one makes that kind of thing up! I do hope you are able to have some bladder biopsies done quickly. If those show something, surely they would have to do something to treat it or alleviate your pain. They can't ignore histological findings, and I hope they don't try to.

 

Everyone please pray tons for Lizzie! She is having her seventh surgery on Wednesday, November 17th in Cleveland. During this surgery, Dr. Stocchi will move her stoma to the left side where there are no scars that will interfere with the appliance sticking properly. This is necessary so she won't have any more leaks. A plastic surgeon will also work on the scars on her right side and her midline incision, and he will most likely have to remove quite a bit of scar tissue that has formed internally. This is going to be a very big surgery with a long recovery. Pray for a perfect recovery that is free from infection or complication. Her immune system is shot right now...she has felt like she has the flu on and off for two weeks, and she has had a stomach bug the last three days as well. She says hello and sends her love to you all...her phone took a dip in the washing machine a few weeks ago and the repair guys are still working on it, so if you have been texting or calling her and she hasn't been responding, that's why.

 

I saw my surgeon on Wednesday and my GI on Thursday. Both appointments went well (I love those men!), and they could both see that I am not doing well. I am tolerating fewer and fewer foods and smaller amounts. My mom came with me to my surgeon's, and I am glad that she did. She needed to hear the word "ileostomy" come out of his mouth because she gets very defensive and agitated when I bring it up, but if my surgeon says it, she's more ok with it. My surgeon ordered a defecography and he also wants me to see a general surgeon he knows who is creative with laxative combinations. I am not happy about that step (laxatives make me so sick), but I will do it to cross it off the list. My surgeon said that with my whole system being slow and with my rectal issues, an ileostomy may be the best way to give me some relief. He mentioned a J-pouch, but I told him and my mom that I am not interested in trying any internal pouches because the motility of my small bowel is such a mess. My GI doc ordered a Sitz study to see if that will provide any additional information as to where things are getting hung up, and he vehemently agreed that I am not a candidate for any internal pouch. My dad goofed up with insurance...long story, but the bottom line is that I don't have health insurance at the moment, and I can't have these tests done until the mix-up is straightened out. Not the best timing! I'm 24 and still on my parents' insurance; I'm doing post-baccalaureate school work, but because of my health, I can't take the number of credits required to keep coverage, and I'm not well enough to work a full time job that would provide benefits. Hopefully this can be figured out soon because I need these tests and surgery ASAP.  

 

Much love and many prayers to you all! Just a little something to think about...if you have found someone on here that you really "click" with, try to meet in person someday! You will be amazed at, and blessed by, the instant connection and life-long bond :)

 

Happy weekend!

 

Allie

Posted 10/23/2010 7:58 PM (GMT 0)
Hi Allie,

I am so glad that you and Lizzie have become such good friends; it is so important to have friends that really understand what you are going thru. I have talked to Lizzie several times (mostly thru texting) and I have found her to be an amazing person! I will definitely keep praying for her! I guess you and I have a lot in common also. I say my GI one day last week and also my surgeon on another day. They are still very hesitant to do an Ileostomy on me and I would have to say today maybe I just need to take a break from thinking about it too much (very overwhelming). In the near future I do want to update everyone thought so I can keep "working on solving my health issues."

Hey, what I wanted to mention is that I have a 19 yr. old son who is covered under our insurance even though he is a PT college student. I guess it depends on your parent's health ins. but we have Health Net. They said as long as he is 100% financially dependent on us, he is covered. Maybe your Dad could ask your ins. co. if that is the case for you also.

Good Luck with everything and I hope you feel well this weekend!

Gilda
Posted 10/24/2010 10:23 AM (GMT 0)
Please pray for me. Tomorrow I will have an ultrasound to recheck the findings.
I contacted a former gastroenterologist of mine whom I have not seen for several years. He was the first GO doc I went to because of my problems and I was still at school, being probably 18years old. My problems started to become very debiltating much earlier but could not find a doc who was willing to investigate and do at least some kind of tests, including colonoscopy etc.
I was glad that he was pretty open, and did those tests. Although they all were pretty normal (beside a long, very loopy colon but that's not considered pathological per se and only a motility doc knows that this can be indicative for a motility problem) he did say that he was sure that I suffered from a real disease and not from a psychological condition, but he doesen't know which condition I could have.

Anyway, I asked him for help again, as I had contacted him two times in the last years and although I was not his patient any more he did help me refering me to other docs/diagnostic clinics (unfortunately, even a very recognized clinic did say that I am anorectic, so it did not help in the end, but he was willing to help).

I treid o explain my difficult situation, and that I am afraid that I won't get any chance by the endocrinologists and to get the ultraosund findings checked; this is pretty obvious, I had to make the exprience with the urologits again.

I can't go to Italy in order to get the bladder issues "solved" as they don't have an excellent urology there. My only option is getting the bladder tissue samples analyzed. I contacted the pathologist in Italy, and each time I read his answer I am so touched and I see the huge difference in treating CIP patients.
His colleague in London specializes on analysis of bladder tissue, and I hope that he interprets the results and compares them with the results of the bowel tissue analysis.

I copied the mail:

Hallo Sarah,
I am extremely busy with many projects and clinical duties, so it's going to be short. I am extremely happy that you find a new doc (Urologist) who is actually taking (good) care of you. That's what a kind and good person like you deserve to try to alleviate your sufference.

I will see a Colleague of Prof. Martin next Sunday at a meeting, so I will remind him your case for Prof Martin.

Now I have to run away,

Take care,
Posted 10/26/2010 4:18 AM (GMT 0)
Hi Everyone, please let me know if you hear anything from Hodaya or Lizzie. I really want to know how they are both doing. I am still not doing well at all. I either have the constant diarrhea, or, I take diflucan or Xifaxan and within a day now I get very constipated and then have to take valium to "get things going again." My doctors say they could maybe do a loop ileostomy and it may be of some help. Both my Gastro and my Surgeon are very noncomittal as to what they think I should do. They both act like getting an ileostomy is such a very last resort but yet they won't tell me why they are so hesitant. to those of you who have had ileostomies; do you feel that your day to day life is horrible? Do you have to stay home all of the time due to problems with the stoma or the bag? I really don't know what to do and I just can't take it anymore!!!!!! I saw my Gastro last week and now he wants me to try "Librax" for a few weeks. Of course I will do it but I need to decide on the Ileostomy by mid-December; may not have good insurance after that! Any more suggestions? Please, is there anyone out there who had a subtotal and then went to an ileostomy and now functions pretty well?

Gilda
Posted 10/26/2010 9:34 AM (GMT 0)
Gilda, no...having the ileostomy is not bad at all. I work 8 or more hours everyday as a school bus driver. Sex with my hubby is great, I walk up to 3 miles everyday, can eat a variety of foods, and sleep most of the night...only getting up once to empty my bag.
Posted 10/26/2010 11:20 AM (GMT 0)
Gilda,

I know Hodaya pretty well and she had such issues with constipation and pelvic floor problems after the colectomy that she went to a loop ileostomy - i think she tried all sorts for about a year before deciding on a bag - and yes she is doing very well now.

As for Lizzie she has had multiple complications and the last i heard they were putting bag the bag again only on the other side.

I also had an ileostomy and i cant say how much my life changed for hte better...i had a reversal about four weeks ago and i am now dealing with going from one extreme to the other - mainly being constipated actually and then taking prune juice and going the other way - so i may too have to revert to the bag again if things dont settle within the next six months or so.

i dont know how you have had the colectomy though.

Posted 10/26/2010 11:45 AM (GMT 0)
Gilda,
I just thought of something my doctor gave me immediately after surgery. I had diarrhea for the first couple months before things just sort of stopped. I took a powder that started with a "K"...it was sort of like metamucil but even stronger. It definitely stopped the diarrhea...anyone know the name of the stuff I'm talking about? Maybe you've tried it, just a thought! (Maybe Konsyl?)

Janie
Posted 10/26/2010 4:20 PM (GMT 0)
I bet it is Konsyl....it is stronger than metamucil. But it is hard to get down because it does not stir well. YUCK....but, every gastro doc and colorectal doc that I have seen has recommended konsyl as the fiber of choice. For some reason though, I could not tolerate any fiber before the ileostomy, not even small amounts that are added to cereals. Now I can tolerate small amounts of fiber. This is why I say I can eat more foods now with the ileostomy than I could before. My doctor even told me to eat the metamucil wafers when my output is too watery.

Gilda, you never respond to anything that I tell you on here, but, I feel that I have made the best decision for my situation and rectal problems. Having the bag is not so bad and is nothing like I imagined it would be. My life was pretty unbearable before surgery and now, I am living again. Me and my hubby been going out on dates, I have been a much better mom to my kids because I am mobile now.
Posted 10/26/2010 6:12 PM (GMT 0)
hey all

Gilda, i answered you on runningrd's thread just not too long ago...
Posted 10/27/2010 1:35 AM (GMT 0)
Hey all....

I need to catch up, but Allie summed it up well and I am still dealing with the flu and stomach bug and vomiting. I am thankfully holding my wt for surgery so far, but who knows. I need ALL your numbers please that keep in touch with me. I still have a few glitches with my ohone but if you could email to [email protected] or fb them to me or however, PLEASE send me your numbers.

Posted 10/27/2010 9:52 AM (GMT 0)
Lizzie good luck in your seventh surgery - you really deserve a break now...

Its nice if some of you live near each other - wish i had someone to hitch up with in the UK - but no one on here and Allie, it must be terrible to think you cant get surgery cause of your lack of insurance and stuff...cant begin to know how that must be frustrating and scary for you and others..

Posted 10/27/2010 6:27 PM (GMT 0)
Hey gals, just ckeckin in. It has been so cold here. It even snowed yesterday. I dont know how much longer I can keep living here. I keep saying I am just staying for my mom so when she goes I think I will be moving to greener pastures!!

I have also been dealing with this dang flu bug that is going around. For some reason, I think it sticks with us longer and with a vengence. Just another benefit to being us, I guess!!

On the positive side, my Christmas shopping is done! Yeah! I just decided to go one Saturday and get it all done. First time I have ever done that. And I have to say its a huge stress relief.

Well, better get back to work. Love you all
Posted 10/27/2010 6:55 PM (GMT 0)
Allie,

I have just found an article dealing with CIPO and surgery in which end ileostomy seems to be the most promising treatment and leads to reduction of symptoms. Reconnection/ileorectal anastomosis causes reoccurrance of obstructive symptoms.

http://journals.lww.com/jpgn/Fulltext/2005/09001/Surgery_for_Pediatric_Patients_With_Chronic.30.aspx

Post Edited (pelztier86) : 10/27/2010 4:39:18 PM (GMT-6)

Posted 10/28/2010 3:30 AM (GMT 0)
Hi Tracy (answers4me, right?) I am so sorry if you feel that I never respond to your suggestions; I totally appreciate you taking the time to help me find answers. I really have tried to respond to you a couple of times; I don't know where my "posts" went! Anyway your life sounds really good these days; I would be thrilled to be able to do all of the things you say you can now do. Please remind me again (I live on drugs; they cloud my thinking), so you have a subtotal colectomy or an ileostomy?

Also, I wanted to ask this of everyone to whom this applies: "If you currently have an Ileostomy and it is working (you feel the best you have in a long time); why would you consider getting it reversed? also, if you had trouble before with a SubTotal Colectomy, then go to an Ileostomy, why would a doctor do a "take-down?" wouldn't you just end up with the same problems and have to ultimately have to go back to an Ileostomy? Some people seem content living with an Ileo; others will do anything to go back to a subtotal colectomy. can someone explain why this is the case?

Thanks,
Gilda
Posted 10/28/2010 3:53 AM (GMT 0)
One other thing, even tho I mostly speak of my "fast motility" and things going thru too quickly; more and more I am having days of pain due to constipation. this would probably never happen if I didn't take Lomotil or vicodin to slow things down but it seems to be an "all or nothing situation for me!" What I mean is; if I take enough medicine to stop the diarrhea then by the next day i go thru several hours of pain due to what feels like a blockage. the only thing that seems to help is taking 2 valiums; then after a while i can "go" again but the diarrhea starts up again! I am going to see a "motility specialist" tomorrow and this is very difficult for me. I am absolutely exhausted and I have to drive myself plus just the emotional aspect of seeing yet another doctor is overwhelming! Both my surgeon and regular GI think I am crazy to be bothering with this; they say there is nothing wrong with my system based on what they have seen from doing 2 CAT scans and 2 different types of gastro gaffin tests (one was an enema, the other a small bowel follow-thru where I had to drink the gastro-gaffin contrast. they may be correct in saying that seeing this motility specialist is a waste of my time but they also seem to be very hesitant to perform an ileostomy on me. Also, my surgeon only wants to do a "loop ileo" so I can have it reversed later. I have suffered with these types of problems for over 30 years now; had a colon resection, then had all but 2" of the colon removed. I can't imagine ever choosing to have a reversal done if this Ileostomy would give me relief and I could get of from the numerous drugs I have to take daily!

Keep the suggestions coming and thanks for your support! I truly hope that you are all doing at least a little better each day!

Gilda
Posted 10/28/2010 9:58 AM (GMT 0)
Hi Gilda

good questions.... I think i am correct in saying that most people go into having a colectomy with ileorectal anastamosis only.  However some of us (like me) have to have a temp ileo for one reason or another - mine was because of previous surgery (i had a sigmoid resection) and the tissue goes a bit 'grissley' as i was told - so they dont want a leak going on and needs time to heal. 

I understand what you are saying 'if life is so great why have a reversal'  that is true.  But someone in my situ doesnt know what life is like without a bag hence the reversal - it is obvioulsy better to live wihtout an appliance on your side isnt it.  However it doesnt always work out e.g. the issue of constipation could still be there or incontinence on the other hand.  We are all so diff but i know a few girls who are doing fine after their colectomy - well actually a couple - one i know on facebook. 

So no i dont know why anyone would go back and forth.. i dont think they would do that. Hodaya had the colectomy and it didnt work out and now she has the loop ileostomy and is much better - she wont get it reversed. 

The reason why they do a 'loop' is because it is easier than opening you up again as you are all joined up inside.  i take it you had a colectomy?  Then it is easier to just pull out a loop of sm bowel rather than open you up to take the end of your intestine which is attached to hte rectum.  hope i have explained and you are better informed.  Also it is best to have the whole bowel out and not leave any behind (with colonic inertia that is).

sorry for long reply x

Posted 10/28/2010 1:14 PM (GMT 0)

Gilda,

Still thinking of you and everyone else.  Extremely fast check in from Italy. Your constipation from taking slow down stuff I think would also happen with an ileostomy.  I experienced it already on vacation.  BAD mistake I made one day in paris having caffeine European coffee.  I put out bag after bag of bile juice.  I was terrified.  I ate pretzels and applesause, did no good, so I took an immodium, did no good, so I took another immodium and ate another applesauce.  Then the issue stopped.  BUT Then nothing came out.  I was in no pain and did not technically have a blockage, but there was poop in me NOT coming out.  That night I was on an overnight train.  THANK GOD I carry grape juice with me when I travel.  I had to down 3 grape juices and a ton of hot tea.  THEN The THICKEST effluent I have ever seen came out into my bag.  I had a hard time getting it down and out the end of the bag.  It was like formed soft stool that would come out of a normal persons rectum.  I finally got it cleared.  Then a tiny bit of the diarrhea started again.  I took one immodium only and no solid food.  Then I went to sleep on the overnight train from Paris to Rome.  When I awoke in the morning I was fine.  So, even with an ileostomy, it is a balancing act.  BUT if you have a pelvic floor issue and get a stoma nothing is wrong with and don't get adhesions, you can manage an episode like I did on an over night train.  We are now on ship and I am eating more normally and drinking ONLY DECAF so as not to even start a diarrhea episode.  Rosemary

Posted 10/28/2010 5:11 PM (GMT 0)
Gilda,
I can so relate to you. Because of my pelvic floor issues, I take miralax which give me very loose stools. If I'm going to eat during the day, I take a lomotil to slow things down, but then I need miralax to get things started back. If I take nothing and eat, stool gets to my rectum and I have horrible rectal pressure, so I have to take miralax, but then with the miralax comes constant running to the bathroom. It really is a balancing act. I'll be interested in hearing what your specialist says.

Janie
Posted 10/28/2010 8:38 PM (GMT 0)
I've been suffering with this for a while, as well as ibs, and I am in constant pain.

Constant cramp in my lower left colon not relieved by a movement as well the outlet problem.

I was hoping to speak to a surgeon and opt for a ostomy, hoping to get my life back. I'm only 20.

I just had a few questions...

1. Can I opt to skip Biofeedback and go for the surgery right away? I've been told it has low success rates.
3. Can the surgeon deny my wishes?
4. If I got an ostomy, would my colon be removed? Im in constant lower left pain which I believe caused my problems in the first place. It was my beginning symptom. Im hoping they will.

I just really want life back and don't want to be in all of this pain anymore.

I'm off to crawl into bed now and try and fall asleep lol. Thanks for listening and any advice.

-Andrew
Posted 10/29/2010 8:35 AM (GMT 0)
hi Andrew and welcome!

sorry to hear about your problem :( it's def not an easy thing to live with and there's no cure for it. an outlet disorder can really ruin ones quality of life and cause a lot of problems in the long run, not to mention the damage to the pelvic floor with time (from my own experience). i've heard of ppl who have normal transit time, but "just" an outlet disorder and had a loop colostomy done w/o taking any part of their colon out. someone from a different forum gave me this link: [email protected]. i didn't really read much of it, but saw that some of the ppl there had the surgery done just for anismus, so you'd may want to check it out. were you diagnosed with anismus? have you had the anorectal manometry test? defecography?

you're right, biofeedback doesn't do much - many ppl i spoke with who had it said it didn't do anything to them, including me.

i had my colon removed due to slow transit constipation, but i also have anismus, so even after the colecotmy i still suffered severe constipation + my small intestine is slow. i had an ileostomy done last July and feel SO much better since. the outlet disorder + having a slow small intestine made me extremely miserable with pain, discomfort and obstructions. the ileostomy bypasses the outlet disorder, so even tho i have a slow small intestine, it is much easier to manage now when at least the outlet disorder is out of the way.

you didn't mention having any more tests, except for the zits marker test. have you had colonoscopy to rule out anything else? i think a barium enema is also neccesary to rule out any narrowing of the intestines or a tumour than can block the passage. after all the above mentioned is ruled out, and your colon transit time is normal, then i believe a loop (temporary) colostomy can give you much relief.

i hope you find a surgeon to help you. best wishes and keep us posted.
Posted 10/30/2010 1:20 AM (GMT 0)
I miss all of you guys....i am going through some pretty hard times right now with oh the flu, had to withdraw from pain meds through the same way as last and get on the soboxone. This is to try and get better pain relief. Its been a very hard couple days and just some personal stuff really taking a toll on my body. I have been puking for over a week or taking in about 700 calories and its just been a struggle. Surgery is fast approaching and i am getting very nervous. I still need you girls numbers. Mine is 616-446-4914 if you just want to text or call. Praying for you all.
Posted 10/31/2010 12:13 AM (GMT 0)

2b ColonFree said...
hi Andrew and welcome!

sorry to hear about your problem :( it's def not an easy thing to live with and there's no cure for it. an outlet disorder can really ruin ones quality of life and cause a lot of problems in the long run, not to mention the damage to the pelvic floor with time (from my own experience). i've heard of ppl who have normal transit time, but "just" an outlet disorder and had a loop colostomy done w/o taking any part of their colon out. someone from a different forum gave me this link: [email protected]. i didn't really read much of it, but saw that some of the ppl there had the surgery done just for anismus, so you'd may want to check it out. were you diagnosed with anismus? have you had the anorectal manometry test? defecography?

you're right, biofeedback doesn't do much - many ppl i spoke with who had it said it didn't do anything to them, including me.

i had my colon removed due to slow transit constipation, but i also have anismus, so even after the colecotmy i still suffered severe constipation + my small intestine is slow. i had an ileostomy done last July and feel SO much better since. the outlet disorder + having a slow small intestine made me extremely miserable with pain, discomfort and obstructions. the ileostomy bypasses the outlet disorder, so even tho i have a slow small intestine, it is much easier to manage now when at least the outlet disorder is out of the way.

you didn't mention having any more tests, except for the zits marker test. have you had colonoscopy to rule out anything else? i think a barium enema is also neccesary to rule out any narrowing of the intestines or a tumour than can block the passage. after all the above mentioned is ruled out, and your colon transit time is normal, then i believe a loop (temporary) colostomy can give you much relief.

i hope you find a surgeon to help you. best wishes and keep us posted.

Thank you so much for your kind words and support. My GI is referring me to a surgeon in the upcoming weeks for a consult.

Would it be wrong of me to bring up the option of an ostomy? Would they look at me and laugh?

- Andrew
Posted 10/31/2010 12:15 AM (GMT 0)
Oh, and btw... I did have a colonoscopy to rule out anything serious, and everything showed up normal except for the fact that my sigmoid colon is "fairly long and redundant"... The Gastro told me that was common though.

Thanks again.
Posted 10/31/2010 4:42 PM (GMT 0)
Life, it wouldn't be wrong of you - what's the purpose of your gi sending you to a surgeon anyway...? if he's sending you to a surgeon, then he thinks you need a surgical solution and since there's no surgery to fix the puborectalis (the muscle that causes the anismus), the only surgical option left to your situation is a temp colostomy, unless they're considering a resection..?

whatever you do, ask for more than 1-2 opinions.
✚ New Topic ✚ Reply
1234567