TOTAL COLECTOMY PART 28

Rosemary

I had to go almost three years in which my weight continously dropped. I had to force myself to eat to maintain my weight. "Luckily" I have also had thyroid problems so my metabolism is slow. That's why I once stopped dropping, reaching 44 kg. Then after my last surgery I lost additional weight and I reached my lowest weight I have ever had.

I didn't get nutritional support since I was accused of having an eating disorder, anorexia. They didn't want to "support" this disorder even when one doc finally looked at my blood work and my previous tests and said that there was something abnormal (that didn't fit an eating disorder, that I needed parenteral nutrition for a while, that I didn't have anorexia. But the hospital where I should have the the parenteral nutrition refused to do so since the docs there again thought I suffered from anorexia.

I finally begged for an ileostomy and removal of the residual colon but my surgeons refused. They finally thought that I have an eating disorder since the surgery didn't work in the supposed way. I had to go to Italy to get my diagnosis of CIP. Then I came back and my surgeons finally changed their mind and believed that I still suffered terribly from this condition.

Since my rectum is also paralyzed and I could feel this I begged for an ileostomy. They originally wanted to do an temporary ileostomy. That'w why the left a long rectal stump whoch could be reconnected to the small bowel. But that's no option for me which prove right after the surgery. The rectal stump still makes problems and I have a small bowel that does not work properly either. With a diseased small bowel an ileostomy is definitely better than an ileorectal anastomosis which is more likely to slow things down when you already have motility issues with your small bowel.

Pelztier,

Good Lord! I just scrolled up and saw your story. Geeze Louise! Some doctors world over will put the blame on psychiatric diagnoses of patients when the patients know all along that their issues are physical. You are still lucky to be alive. We on this board, have somehow GOT to write a book when we are all as well as we can be. It would educate the medical world and medical consumer world. WHere do you live that you had to travel to Italy for diagnosis of CIP?

We must have strong bodies. I thought 7 months with no food and no TPN was bad, but you lasted 3 years, WE were meant to do something important in the future or we would not still be here.

Hang in.

Rosemary

Hi Amey,

No I don't have to do the baby food, it was just a quick dinner by choice. Still a bit chicken about adding much roughage......would never catch me eating a salad Sorry....so glad that all passed for you, must have been horrible. My favorite lunch is egg on a biscuit from Dunkin Donuts WHen I am on the cruises I go on I eat much better, still bland, but better. Rosemary

No word from Jen,

Can the moderator email her and ask how she is? Or is that against forum rules? We're all concerned. Last we knew she was in pain and going back to the surgeon relatively soon post-op. No word from her husband either. Rosemary

Rosemary

I live in Germany which is a desert when it comesto motility disorders. I know you wouldn't belive it but that's the case.

Connie, you must be scared.. you've been through a lot. Did you take anything that would cause watery stools? I do think you should see your doctor and see if they may have a solution to this issue. Otherwise... I'm glad you are feeling good after all you have been through!

Lizzie, good job on eating the ice cream! You need the calories to keep up strength... I sure hope you avoid the flu.. you don't need to be ill again!

Jen, what happened!?? I'm thinking something must have been wrong since you have not posted yet. Please let us know.. we are worried!

Shmuel, if you are still reading, I hope you're okay! We don't know why surgery was canceled, but we miss you and hope you're doing alright!

Rosemary, thank goodness the baby food was by choice! I couldn't imagine having to eat baby food! Going on cruises, I so enjoy the food, but I have a feeling I will not be able to eat like I did all the previous cruises, that makes me a little sad! I really enjoy a good steak and salad not to mention desserts!

Amey, I can tell you must enjoy exercising! I still can't believe you ran 3 miles so soon after your surgery! I have been exercising everyday, and can now run a slow 1 mile. I'll blame it on my age! Again, I am soooooo happy that we got to chat via email, and I'll be keeping your phone close by - just in case I need it! I really feel as calm as I can be before my surgery..

Hodaya, how are you doing sweetie?

Judy, Christy, Janie, Tracy - thinking of you always!

Hi lizzie,

WOW! I should have had YOUR pelvic therapist prior to my original 2006 surgery. I may have had some non-surgical muscle issue. I am going to print your post and keep it just for my own learning. You really are learning a lot from this PT person. Glad your flu is better. I am real worried about Jen and I posted that I wondered if the moderator could contact her through email. I thought her husband might post for her if she's in trouble. Hope the 1/2 inch of your remaining colon isn't adding to your outlet issues. Between all of us we will learn enough to write a book to educate even docs. This outlet stuff is VERY complex.

Pelz,

GERMANY, your kidding! They are a leading nation in so much technology, unfortunately not the kind you needed.

Hi Connie,

Welcome. You and I haven't "met." I was misdiagnosed with a sigmoidocele when in actuality it was just a loop of small intestine that descended into the space between my rectum and vagina only after I'd passed the contrast on a defecogram in 2006. I obviously didn't know the scan had been misread by a resident radiologist, work not co-checked by her supervisor, 3 colorectal surgeons wrongly opined that I needed my sigmoid colon removed (they said it shut off the top of my rectum when I went to have a bowel move and gave me incomplete rectal emptying). I did not have many of the muscle tests Lizzie describes. The surgeons I had when they opened me saw I had no sigmoid redundancy, removed it anyway, raised my bladder that was not prolapsing, did other unconsented procedures unrelated to presenting symptom, then did not follow up when my colon narrowed in to only 4 millimeter diameter (so could not pass poop) and I could not eat for 7 months due to recurring adhesion small bowel obstructions. Saw 11 docs nationwide over 13 months before one removed scar tissue from my small intestine then did a permanent ileostomy. I've been (so far so good 2+ years now) and on major cruises. One being a world cruise. SO that's my story. Your story is amazing! I'm so glad you made it. You are even pooping the "old way" . Hope you can fine tune it. Hope you stay well. What a LOT you went through.

Hope we hear from JEN!

Rosemary

Connie - I had a sub-total colectomy in 2001.  They left about 6-8 inches of my colon which connected to my rectum. For years I believed that this remaining portion of my colon was causing constipation.  The doctors disagreed.  Finally, after 8 years and several surgeries later I am happy to report that my small intestines is attached to my rectum and the entire large has been removed.  For the first time in over a decade, I am laxative free.  I am not sure if your colon is causing your problem.  However, in my experience, a dysfunctioning colon can cause a lot more difficulties than doctors realize.

Just my 2-cents.

Lizzy - Thank you for eating ice cream.  Now get up off the couch and make another bowl! :o)

Jen, where for art thou?

Janie - isn't Miralax more expensive than prune juice?  Now that it is over-the-counter, insurance companies will not cover it.

BTW, has anyone else had insomnia after surgery? My dr put me on Ambien, but that had CRAZY side effects. I only took if for 2 days.  I am super tired but I just lay in bed counting sheep. I took 3 grams of Melatonin tonight and 2 Tylenol PM and I am still sitting here wishing I could rest. 

hi everyone, it's so strange.... i posted something couple days ago and i don't see it here.. anyways...... still no word from Jen???? i'm so worried too, you're all right, it's not like her not to post. i hope we here something soon. i'll probably won't be able to check in till it's your saturday morning, so i won't be able to know. pelz, poor thing, you've been through a lot. it's so unfortunate that in your country they're not aware of the severity of motility probs and how it affects ppl's lives. i remember there was another young girl from Germany here, her name is dana alberstein. if you look back of the total colectomy threads you may find her posts. she also reported how all of her drs said she just have an eating disorder and that they refuse to help her. i was so sad for her. she posted maybe few mons ago again and still the same, didn't find a dr to help her. where did you have your surgery? i wish there was a way you two could be in touch, so maybe you could give her some advice what to do or reffer her to one of your drs. maybe if we can find one of her posts there's an email address there. i'll try later. 45 kg is still so low for 170 cm height, i hope you keep gaining some more and keep improving. i eat a soft diet and can manage with that, but if i eat solids, i'm in trouble. i guess you couldn't have a bm even with a soft diet? i'm glad you can at least eat some by mouth and the surgery finally gave you some relief. i hope you keep improving. Jenise, thanks for asking about me honey! i'm trying to hang in there. not sure what it's gonna be. i'm so scared of laxatives at this point and as far as the soft diet works, i guess i rather stick to it.... well maybe till the next crisis. Amey, no i didn't talk to my dr about antidepressants.. gosh i'm sooooooo scared of these meds too!! i don't know, i'm trying to just snap out of it by my self, maybe it's just a stage and i'll make through it. i still cry, but hope it'll get better. Lizzie, glad the fever is gone. hope you get better soon and that you manage to solve the pelvic issues with your pt. you said a prob with you muscle tone, do you mean that now it's too weak? i mean too weak to push? Janie, i'm glad you're able to have relief with the miralax. i guess i'm not ready yet. Rosemary, thinking of you, hope your legal work is progressing well and you're feeling good. connie, if it's just a one time thing, then maybe it's nothing to be concerned about . but if it repeats it self, then you'll obviously won't be able to ignore it. i tend to believe its a one time thing, even some kind of a bug can cause this. i hope it never repeats it self again! as for me.. i'm still the same, maybe slowing down a bit more lately :( just praying we'll all be well someday!

Hodaya......Good to hear from you. No not to weak,, actually when I was researching last night rectal dysnnergia (sp?) is another name for anismus, so my anismus is back to a certain degree, but is not yet where I was when I had the obstruction and biofeedback did nothing. She said when i try and bear down my internal/external sphincter tighten and almost suck in. I have therapy twice a week and exercises to do at home to try and train my brain again to engage stomach from diaphragm and push my finger away allowing the pelvic floor to open up. I hope with time I will be able to get my rectal muscles to act properly again (50/50 so far on biofeedback), but my therapist is great. She uses baloon therapy, the EMG probe and I can see what all three muscles are doing, and she does manual stretching of the muscles and work manually.

Janie and Rosemary, I wish you could have my PT, she is wonderful and even called me when i was in the hospital. I pay 10 dollar co-pay and she usually has me back there for 75-90 min. Her and my surgeon keepp in close contact and I emailed him and he said for now to try the biofeedback and we will reevaluate in Jan or whenever I see him.....3 mo from last visit and about the time my PT knew I was not making any progress even after rhe botox injections. So only time will tell. We have some amazing biofeedback therapist here in Michigan. She is close, but if I had to I would go to Univ of Mich where she did her training and they have a whole mess of therapist solely for our issues. She did not seem to think the stringy stool was normal for me....she said what that shows is muscle compression while trying to evacuate and therefore not getting  complete emptiness without laxatives.

Jen........SOOOOOO worried? If your hubby can update us or anyone that would be great. We love you......

Lizzie

Amey,

My insurance covers miralax for me, even though it's over the counter. I just need a prescription. I just called for a refill last night, so I'll see how much it is. I know a large bottle at Walgreens (which is smaller than the large bottle I get with prescription) is $19.99. I'd rather take prune juice but it just made me tied to the house for hours after I took it. I think I may try diluting it like you suggested. It's just so hard when you work to start trying new remedies because if they work too well you're in trouble and if they don't work, you're miserable all day!

Pelz,

MY WORD! That poor girl....... and I thought understanding of all this gut stuff wasn't good here in the states......I pray for her and you. Rosemary