TOTAL COLECTOMY PART 24

Hodaya,

Today is a better day emotionally, though I am still going to the bathroom a couple of times after anything I eat:( Just praying the c diff isn't back.  I took my samples to my hometown lab this afternoon & asked how long for the results they said not until Wed.  That is totally why I don't do ANYTHING with the medical profession in my area, they are so incompitent.  My GI had the results in 12 hours the first time; very frustrating.  But I really didn't want to stay up where my GI was until I had 3 samples because of the 3 hour drive.

Anyway, I hope you are doing well and I can't wait until you finally get a date for your surgery so you will be able to feel good.

BTW have you talked with Amanda at all on FB? Was just wondering how she is doing and if she is feeling at least a little better.  Am always praying that the angels will surround her and help to heal her; she has been through soooooo much and really deserves to feel good for once.

Janie, 25 times - OUCH - what have you been eating? You might want to really keep a close eye on what you are eating to see if there is a correlation to the frequency.  Thanks for the kind words and support, it REALLY helped .

Hugs and love,

Judy

Tracy,

Yes I'm supposed to use precautions when I'm around people, mainly good hand washing,etc; but I'm not staying at home this time.  I already have a FULL week planned with 2 days of meeting colleagues for lesson planning because I'm going to teach 2nd grade instead of 1st grade next year; 1 day out to lunch with 2 college friends who are in town from Florida; 1 day with an appt with my kinesiologist, 2 days I'm going to start tutoring a little boy in reading starting this week, and I'm ending the week with an annual Corona Party all day on Friday .  So, I REALLY hope that I don't have it again because then it's back to the antibiotics and not too much fun on Friday; although I really can't drink much anyway because it causes too much D.

Janie, So sorry you have to wait until the 14th, that's such a ways away, but perhaps keeping the food journal will help some.  Gosh, I seriously don't know what I would do if peanutbutter gave me D, I practically live on the stuff.  I hope that things will get better for you.

Lizzie, I will be saying some extra prayers for you girl.  I know this is a big week.  You will be in my thoughts as you girls always are:)

Peace and prayers,

Judy

Janie, I live in Georgia..where do you live?

Lizzie, I think when you have a loop illeostomy, that some of the poop gets  caught in the loop and goes the other way, to the rectum...I am just surprised you can get it out. I am extremely happy that you can though...just seems weird that your rectum would start working all of a sudden. I am just trying to understand...so, you had the temporary loop illestomy in April??? But didn't have a rectal bm until July 4th? Right? So, in between April and July 4th, did you have an "urge" to go? Did you have any mucus come out of the rectum before July 4th?

Do you think it would be worth a try for me to have a temporary loop illeostomy? Because I have researched alot and been on many message boards just reading others comments, complaints, etc. and it seems like MOST, but NOT ALL people are okay with their illeostomy...maybe 75% are good and 25% absolutely hate it. But, there aren't many, less than 2%, that have colonic inertia or anismus...most have colitis or chrohn's or cancer. I also read about stomas that retract like yours and there is a procedure that your doctor can do to fix it. Wow, I know I have asked you a ton of questions, but, I just want to understand your situation, and also would like to tell my doctor details to see what he has to say.

Okay, I have written enough...sorry to be so long winded! T

This this perfectly normal and nothing at all to worry about. Let me explain.♦ You have a loop ileostomy which was formed in this way. The surgeon made a hole in your abdomen and pulled through a loop of ileum and then put a plastic rod under this loop to stop it from sliding back into your abdomen, He then cut half way through your loop of ileum (which is why it is called a loop ileostomy) and sewed the cut edges to the skin of your abdomen around the hole he made. Your plastic rod was pulled out after a few days once things had healed and the loop shouldn't disappear right inside your abdomen. You therefore have two openings in your stoma - upstream and downstream. Normally stool comes out of the upstream one and into your pouch, but, especially at night when you may be lying on the pouch or the stool pancakes around the stoma, some of the stool may get into the downstream opening and so out of you in the old, conventional way. Wind can also pass from one opening to the other (strictly each opening is, in itself a stoma) and so escape the conventional way.

The reason your surgeon made a loop ileostomy is that it can be removed very easily in simple surgery. These loop ileostomies are made to protect where the surgeon has rejoined the colon after removing a section which was damaged form cancer or diverticular pouches which burst as the colon heals less well to itself than the ileum does, or to protect a new j-pouch until it has healed and has shown to be leak free after testing with a water based contract fluid (Often called a barium enema but there is no barium in this water based contrast at all - it contains iodine which is also radio-opaque - shows up on X-rays)

I hope this explains it for you!

BW

Terry

Tracy-

They have told me that it is normal for me to pass some stool/mucous since I do have a diverting loop ileostomy. I have had my first urge and BM at the end of May, but they increased in June and July. I now have urges daily, but only pass stool about 1-2 times a week and I cannot believe I can get it out either. I do not know why some of my rectum was removed, that is just what the surgeon/pelvic floor specialist told me when she did a protosigmoidoscopy when I was there two weeks ago in Cleveland. I think you were the one wondering if I saw a pelvic floor specialst and I did and she was the one who did such an extensive exam. Her name is Massarat Zutshi and that is purely her specialty. Prior to the ileostomy I never had urges and could not even pass liquid.

I was in rough shape so the surgery was not easy for me....I was in the hospital almost a month. I could not get well, but some of that time I had the NG trying to clear the obstruction. I believe after the surgery ( mine was open) I was in an additional 7 days and returned with 2 days with an abscess. I have heard the reversal if I have one is easier but I am not holding my breath. I have never been in the length of time they have told me I am going to be in. My stoma was very retracted this morning....I just want my skin back...I want to just wash my belly and not worry about having to put tape and bags all over it. My pelvic floor specialist told me that there is no explanation, but those with a TC/ileo for constipation are at a much higher rish for obstruction that those who have it removed for cancer, crohns, or UC. This was disheartning, but I will eat baby food for the rest of my life in order to rid of this bag. You may do wonderfully with it and I am truly curious to see how things go......and what your doctor says.

Thankf for all the well wishes for this week. I am so so so nervous.

Lizzie 

Hi! I am so glad I found you guys on the web today! I can identify with you and your struggles with poop problems!! I have been suffering with chronic constipation since 2005. I was finally diagnosed with anismus in 2007. My quality of life has been severely effected. I have been questioning whether an ileostomy would improve it!? I know nothing about ostomies, but I am deperately looking for something to help!!! I'll try and give you a summary of all that I have been through (It is hard because it has been 4 years and it has been complex, as I know many of you can relate!) I was diagnosed back in the late 90's with Interstistial Cystitis - IC. I learned to manage the symptoms with herbs, diet, and acceptance. In 2005 I started having difficulty with having a BM. In the fall of 2005 I had sugery on a thombrosed hemmorroid. That was the end of me being able to have a "normal" bowel movement. After the sugery I could not go!! Like those of you have expressed in your posts. The rectum would not open! I could not get diarhea out, a fart out, or even the water out, after an enema, without manually opening the rectum! It was like it was paralyzed. I ended up in the hospital with a bowel obstruction. The doctor I had at the time did not quite understand what I was talking about! He was thinking constipation as in - hard stool, you need fibre. I was sent to a specialist. I had a fissure that would not heal. He thought that the problem. I ended up having surgery. They found I also had a fistula. The doctor then started treating me for Levator Ani Syndrome. They used Eletrical Galvanized Stimulation as a form of treatment. Still I was not able to have a BM without manual assistant. I was also having extreme pelvic pain daily and I had difficulty walking. The pain was so bad that they put me on oxycodone. I was unable to work! I spent the next year and a half years going to specialists and no one could help me. In 2007, desperate for a diagnosis and treatment, I made the decision to go to the Mayo Clinic in Rochester, MN. Now I live in Canada, where health care is free, but they could not help me! We do not have health insurance, so the Mayo was going to cost $$$. My husband and I (we have 3 children) decided to sell our house and downsize inorder to have the money to pay for the Mayo (Plus, due to me not working financially we were feeling the strain). That was one of the best decisions I ever made! (Even though I am still having a lot of problems, I am a lot better than before I went). In July 2007, the doctor there finally diagnosed me with Anismus (he called it Pelvic Floor dyssynergia) and some nerve ending damage (from the surgery in 2005). When they did the manometry I could not expel the ballon at all even with the full amount of weights added. I went back in September to the Mayo to the Evacuation Disorder Clinic and received 2 weeks of Biofeedback and Balloon therapy. The results were very good - not 100% - but like I said I was a lot better than I was before I went. I was now able to fart (without assistance)!!! The extreme daily pelvic, hip, lower back, etc. pain lessened. The muscles had learned to relax. I no longer needed the oxycodone. I could now walk without limping. As for the bowel movements, well the rectum was starting to learn to relax during defication. It was a little more responsive to stool in the lower colon. I started have some "normal" bowel movements. But most importantly I was glad not to be in such constant pain and be able to walk!!!! After returning home from the Mayo I returned to work, thinking that things would continue improving, but..... after two months of work I started having severe diarhea attacks that did not want to expel on there own. This continued and I needed to leave work once again! I decide to give the Mayo treatment a try once more! We moved/downsized again!! This time to my parents house, and I went back to the Mayo for another week of treatment. This time there were not any more improvements. The chronic diarhea was complicating the treatment. The doctor thought maybe I was suffering IBS-D. The doctor told me to learn about IBS management and try making dietary changes. Dietary changes did not seem to make a difference. Trust me I tried! I went on the exclusion diet, etc. and nothing! The doctor put me on amytiptaline. There have been improvements in the diarrhea. I am now having more solid stools but I can not expel them without assistance. This leads me back to the Anismus. The doctor said this may be as good as it gets especially since there is some nerve damage. Now, I am unsure as to what I should do. I am grateful not to be as bad as I was, to be able to walk, to not be in constant pain and have some pain free hours, etc. but my life is still anything but "normal" and is severly effected by this. I am unable to return to work due to the unpredicatability of "attacks" (need to have a Bm but rectum resisting and needing assistance), the pain that comes afterward, the bloating and abdominal discomfort, etc. My social life is greatly effected by this. I do not go out a lot and I miss many events for the same above reason. It is expecially hard because I do miss out on many of my childrens' activities! Do I accept that this is my life and make the best of it, or do I continue to look for something that will improve it? Is an ostomy an option? My doctor is hesitant. He is not sure if it will help or possibly make things worse (especially with my history or pelvic floor dysfunction and Intersistial Cystitis). Do you guys have any thoughts, advice, etc.?? I would appreciate hearing from you!

Thank you!

Jan

Jan

Tracy,

I live in NY so we start school very late; the kids start the 9th of Sept and we start the 8th although I have to go the 2nd & 3rd for conference days.  But we also don't finish until the last week in June.  The c diff made me extremely sick the first time but I've been on antibiotics for it for so long that I don't feel too bad now; plus I am still on pain meds for my kidney so that helps.

Hodaya, the c diff's actual name is Clostridium Difficile.  Ask your dr about it as a precaution after your surgery.

Have a good week,

Judy