TOTAL COLECTOMY PART 19

You so have your hands full and a vacation sounds like the PERFECT solution LOL!!  I also have four small dogs and one cat - thankfully the dogs don't shed!!

I wish you all the best Friday and please keep us posted.

LIZZIE - Loved your story!!  Coffee is for sure something you aquire a taste for - I LOVE it and can't remember a time I didn't enjoy it.  I do like tea too (sweetened), however, I'd rather drink my water - not to mention it doesn't have the calories as sweet tea.

INFO ON ME - I had my upper endoscope last week which revealed gastritis and inflamation in the stomach - I return to the GI in three weeks to discuss a small bowel transit.  In the meantime I'm taking Protonex twice a day along with Reglan twice a day.  I've been taking the Protonex once a day for over a year now and increasing it, along with adding the Reglan seems to be making minimal difference.  Hopefully by the time of my appointment they will be working much better.

GOOD NEWS - I returned to my PC today for my blood work results.  For the most part all was good, especially my electrolytes.  I'm a little low on iron, however, she indicated it could be due to the gastritis and inflamation.  My cholesterol was a bit high and she recommended a dietary supplement and will redo my blood work in six months.  So, all in all, I'm very pleased with the outcome of the results.

I hope everyone else is doing good or better.

Hi Angie -  Boy, we sure do sound a lot alike.  I've also had a bleeding ulcer.  It sounds like the only difference between the two of us is I've never had a hyenal (sp) hernia.  I hope better news for you too, especially answers.  My recent upper endoscope revealed gastritis and inflamation - no ulcer or the hpylori this time around.  Glad the pain meds are working as long as you remember to take them.  Oh, by far the MiraLAX has been my lifesaver.  I also take it twice a day.  I wouldn't recommend the fiber at all - I think I mentioned in an earlier post that it actually has the opposite effect for us colectomy people, or at least that's what I've heard from others. 

Believe me, never in a million years would I have believe I'd be talking to people about pooping.  For goodness sakes, I never could poop anywhere but home (when I was lucky enough to poop my once a month poop).  I'm so thankful for this thread and the compassionate people who can understand and relate to the same situation.

I also didn't think I could have/get IBS after the colectomy, but apparently the small bowel can get irritable as well.  My entire digestive system seems to be jacked up as well - same as you - from the top to the bottom of my internal hemorrhoids.  I'm hoping when I return to the GI at the end of the month they will do a small bowel transit study (it was mentioned) - they ONLY test I didn't have prior to the colectomy.   

Don't get too worked up over the scope - maybe things will turn out for the good (think positive).  You're right about them expecting us to starve - you'd think they would want to perform this procedure in the AM vs the PM - mine wasn't until 2:00 in the afternoon.

So, when is your scope?  Yes, please keep us posted!!

Hi all,

I can't remember if I've done a recent update, so here goes. I had my hernia surgery on the 29th. This incision is a bit longer than last time (about six inches long) and is kind of like half a c-section scar. I was hoping to go back to work on Monday, but I've been having some problems with a seroma that needs to be drained. Doc told me it's from doing too much and that I needed to lay down more. Okay, okay, I get the picture. He wouldn't release me until the 26th, by which time I should be totally stir crazy.

I went ahead and rescheduled my defecography for the 20th. I figured that I might as well do it while I'm off. I hate driving in the Bay Area, so hubby is going to take the day off to take me.

Speaking of hubby, he was in a car accident on the 24th. He was going 55 down one of our country roads and some dumb lady pulled out in front of him from a cross street where she had a stop sign. He said the funniest things was that she looked right at him before pulling out. Duh! He slammed on the brakes and steered to avoid hitting her in the driver's door. He suceeded in causing less damage to her, but in the process totalled our car. It has $15,000 in damage. He was driving a 2006 Toyota Corolla (our first Toyota) and I must say we were both pleased with the way it handled a high speed accident. It crumpled where it was supposed to and both drivers escaped serious injuries. He is having some neck, hip, shoulder, neck and back pain; but it's mostly soft tissue injuries and he's going to PT to help with that. Oh...and the woman that he hit....had no driver's license.

Lastly, our son that has Crohn's was recently diagnosed with ankylosing spondylitis. He has been having strange back/hip/butt pain since he was 18, and in the back of my mind I was thinking AS. Well when it started up again, our doctor sent him for an MRI which confirmed the AS. My husband was diagnosed with the same thing at the same age (21). Mike was immediately started on Humira at his first doctor's visit with the rheumatologist. I just wish those types of drugs were around when my husband was diagnosed.

Robin

Thanks for the reply. I'm trying to be good. I'm just have a hard time being a couch potatoe. I didn't know that there were so many judge shows on tv now.

Living in California, I'm pretty sure that she didn't have a license because she's not here legally. We live out in the country (main agricultural area of the state) and this is the time of year when the farmworkers come looking for work. She was young (in her 20's) so I'm sure inexperience may have played a role as well.

Actually, the Humira they started Michael on is also used to treat severe Crohn's. We're hoping that if he does well on it that they might try stopping his 6MP to see how he does. I just always get nervous when his dosages are played with because that's usually when he'll start having flares.

How have you been doing? Feeling any better?

Robin

You're right, it sounds like the Protonix isn't doing a good job for you. Did they mention if you have reflux? The reason I ask is that if they did, you can try elevating the head of your bed to see if that helps. My husband has Barret's esophagus and that's we had to do. You can't just add extra pillows. We bought two cinder blocks and put them under the legs of the bed. They also make wedge pillows.

So a small bowel transit is done with a breath hydrogen test I see. We do those at our office. It's a long test. You pretty much have t stay around all day long. The good news is that you can get the results the same day; or at least at our office anyway.

Please keep me posted on how everything goes.

Hi all.....just checking in to see how everyone is doing. I feel like its been pretty quiet. Irish I am so happy to hear your husnabd is ok and the other girl for that matter.....I hope all continues to get better for you and you whole family. I hope your recovery goes by fast for you....I know its hard to be a couch potatoe, but you need to let your body heal.

Robin- Hope your feeling better.....I would seeif there is another med they think might be better for you. I am glad though that there was not any ulcers and I hope the inflammation continues to improve. I cannot remember why you are taking Miralax, but I am glad I am not the only one.

As for me, I too, have good days and bad days. When I am up and working on my feet all day I find that my bowels are not as cooperative. I have to take Miralax one to two times a day on those days. I think it also has something to do with the stress of my job. We have had a lot of kids relapse and put on hospess since I have been back and a lot of new kids with cancer. It is a bittersweet job, but at times it gets to me emotionally. Also, I am still having dizzy spells and now my hair is falling out and a lot. I do not know what is causing either of these. I just try and take it day by day.

Thanks for the updates.

Lizzie

Thanks for the info on the small bowel transit.  An all day affair doesn't sound like much fun.  So, what do they actually do throughout the day?

LIZZIE - Thanks for your thoughts!!  I take the MiraLAX because my bowel movements slowed down tremendously about six months post-op.  After several tests and a few CAT scans to rule anything out the surgeon believes I now have a lazy small intestine.  I'm just happy the MiraLAX is doing the job.

RESA - So happy to hear your appointment went well!!!  That is such wonderful news!!!

ANGIE - So sorry to hear your news.  Forgive me for sounding stupid but what is the Nissan Fundoplycation wrap for?  Better yet, what does the surgeon think is causing it?  I think it's a bit insane myself - and I think enough is NOW.  I'd sure be asking the surgeon why this is continuing to happen.

HAPPY BELATED MOTHER'S DAY to all the mothers here!!  I hope your day was blessed!!!!!

Hi Mimi,

I am so sorry to hear of you troubles.  I had a total colectomy which they did laparscopically.  I do not have a pouch (bag).  You did not say where you live but perhaps there is a Medical school/hospital that you can go to or a university hospital.  Don't give up...where do you live and are you young or middle aged...Many people have successfully used Miralax or Lactulose which helps in moving the bowels.  If that is available in your country it may be worth a try..

Good luck

Phyllis

I have been told I have a rectocele, but I'm not sure what an enterocele is!  I also have slow transit (123 out of 124 markers left in colon) and pelvic floor dysfunction.  I'm starting biofeedback on Thursday for the pelvic floor dysfunction and then will most likely have surgery (STARR procedure) for the rectocele.  My doctor said the surgery might help, but because of the slow transit test, it may not...but he suggests I have it first for two reasons; it MAY help and I may not need colon surgery, but also because even if I have to have the colon surgery, this needs to be fixed.

I'll run and read about an enterocele...I wonder if the STARR procedure is for that, too?

Thanks for the good thoughts and prayers. 

I'm glad you're not still dizzy, but I wonder why your hair is falling out?  Is this common?  Unlike you, I don't have alot of extra hair .  I'm sorry for asking, but how long ago was your surgery?  I try to keep track of names, but I'm not doing a great job.  Have you had problems with diarrhea?  That's what scares me the most; so much of our lives revolves around socializing, going to dinner, trips with friends, and I'm so afraid I won't be able to go out and eat anymore! LOL  The way I am now, I don't poop even after taking laxatives, so the thought of diarrhea seems so unreal, but my doctor says its a real possibility.

I haven't heard much about the surgery to repair the rectocele; only the brochure the doctor gave me, and what I've read on the internet.  I'm sure it can't hurt to have it, but I'm not real optomistic that it will solve my problem.

Thanks for any information.  I so wish this was over!!!