TOTAL COLECTOMY PART 35 THREAD 13

I was diagnosed with colonic inertia and am wondering if any of you have tried probiotics? I know that dysbiosis (imbalance of bad bacteria (versus the good kind) in the gut) can cause severe constipation, from all I've learned through the years. But my problem is that probiotics make me even more constipated bc my stools become even more full of mucus (sorry this is gross...). I think that's from the Candida overgrowth that is being killed from the probiotics. So I'm in a vicious cycle... I want to balance my gut flora but can't do it bc it makes me more constipated and sick... has anyone else gone through this? It seems a lot of people don't know about dysbiosis, but it's very real and I've been dealing with it for a long time. I take an herbal fiber/laxative product that helps me go sometimes, but only when my colon is finally full and HAS to empty, then it only empties a little bit. My friend had her colon removed due to colonic inertia and now her small intestine is still affected and she's no better off... I just don't know what to do. I'm sorry for rambling here... anyway, I am glad to have other who understand, though I feel bad you're all going through this, too.

Ugh. It is so sad to read about sick Lizzie is. She's in my prayers still.

4everStuck - I've tried probiotics several times with my colonic inertia and nothing worked.

Hi Stuck - I am sorry to hear of your struggles, but I think you will find that many are going through the same things you are! I had a total colectomy almost three years ago; my surgeon's instructions were to discontinue the probiotics. I have tried them on and off since surgery and I definitely feel worse with them. There are antibiotics, but in my experience, they only help for one round and then you're back to square one. Some of the candida and bad bacteria resources suggest grapefruit seed extract. If I'm remembering correctly, it helps to increase the body's pH, and candida and bad bacteria hate that. Might be worth a shot!

Welcome to the forums!

 

Allie

Shiny, WOW, you ate all of that food at once? You really must be feeling better.....I am very nervous about what to eat, how much, etc. I have been eating mostly bread, mashed potatoes, applesauce, pretzels, soup, and pudding. I did eat some chicken pot pie, but only ate the breading and sauce and one teeny tiny bite of chicken.

always thinking and praying for you Lizzie!

Barb - Congratulations on the toot! Woohoo! Proud of you lady! Please continue to update us on your progress.

Allie - Thanks for keeping us updated about Lizzie. Keeping her in prayer, as always.

Welcome 4ever. The people here have a wealth of knowledget that they share freely. I don't think I would be sane if I hadn't found this forum.

To everybody else - each day I pray for each of you who are having troubles.

Today I'm have troubles myself and would like your opinions and/or advice. My colon doesn't work at all without laxitives. The stool doesn't go far enough so that using a Fleet will help. Today I've been totally miserable with lots of gas and what feels like colon spasms but very low in a place I've never had them before. What makes this even stranger is that I've been on a low residue diet for maybe two weeks. I would appreciate your thoughts. Thanks.

Thursday I see the surgeon for the first time. I guess I better review my medical history and get everything in order.

Val

Figured out today that it is the pasta that caused the blockage the other night. I ate a very small bowl of it just to test it and no more than hour later or so I started having stomach cramps. Started drinking water and massaging and the pain was gone in a couple of minutes.

Also the antidepressant that the doctor gave me is starting to work, I think. Today I noticed I was in a MUCH better mood than I've been in.
I think I caught something though at the doctors office. Cause today I woke up this morning and my stomach was making all kinds of noises, especially the j-pouch. I've had headaches on and off, and I feel nauseas at times. I keep wondering though if it is pouchitis (possible before takedown?) or some kind of stomach bug.

Edit:
Just thought about it but could it actually be dehydration from the other night were I vomited 3 times and didn't replace the water soon? when I went to the doctor yesterday I felt fine in the morning, but it wasn't until after I left the office I started to have a headache.

4ever, welcome...you have found an awesome group of women....

I have colonic inertia too....I also had a pelvic floor dysfunction, anismus, intussusecption, and a rectecele. I had surgery on June 21st....I had a subtotal colectomy, the doctor removed some of the colon, not all of it, and surgery on my rectum. I now have a loop ileostomy to let the connection heal and will have more testing on my rectum in the next couple of months to see if the surgery worked to allow me to have normal bm's again.

Barb, how are you doing?

I am doing okay. This ileostomy has been a challenge...I think I am obsessed about it and this makes it worse....I overthink too much...But, it is soooo nice to not have to spend hours in the bathroom every single day....I truly have been bored stiff with so much time on my hands. LOL I also quit smoking with this surgery, so I am not wasting my time outside smoking or sitting on the toilet 3 to 6 hours everyday. HODAYA, this is definitely quicker than the other way. Even if I need to empty my bag every hour, it is still quicker....takes less than 2 minutes to empty my bag.

I am not as spooked by my stoma now either. I sprung a leak the other night and called Rosemary freaking out. She calmed me down and gave me some instructions.....my husband helped me change the bag. He basically did everything while I cleaned around the stoma and prepped the skin for the bag...it was hilarious actually because I turned to face my husband so he could measure the stoma and he said, "okay, okay, quit pointing that thing at me". HEEHEE It was soooo funny. But the stoma behaved and it did not poop at all during this bag change. I told my husband my stomee must be shy with him in the room....

My stomach is still sore and the skin around the stoma is still swollen and quite sore. I need to not let the bag get too heavy, because the heavy bag pulls down on my skin around the stoma and it makes it even more sore. So, I have been trying to tuck the bag in my clothes to give it some support and then empty it when 1/3 full. I will try the belt when my stomach is less
sore.

Feeling better everyday. I have been eating small, frequent meals everyday and my weight seems to be going back up...I lost 15 pounds of pure water weight and it didn't look so good.
UGH My diet consists of toast, pretzels, soup, crackers, small amounts of chicken, potatoes, pudding....I am pretty much eating the same things everyday. I won't try new foods for another month or so.

So, there is an update on my recovery....Tracy

Hi everyone.  I'm back home finally.  I've been at Cleveland Clinic and my ileostomy surgery went well.  I'm feeling stronger each day. 

 

The hardest part of it all, is that I have alot of wounds that they left open instead of stapling and they're supposed to heal from the inside out.  I have a wound vacuum to help speed up the process.  It's attached to me and changed twice a week by a home health nurse.  It's very painful and the worst pain that I've had thru all 4 of my surgeries.

 

The tube that I did have coming out of my abdomen before surgery, was full of infection and stool around it.  It was good that I had surgery when I had it.

 

It has been difficult getting used to having an ostomy, but I imagine that I'll be comfortable with it in time.  I know that my stomach has gone down a lot and I feel better.  I get nauseous once in awhile, but I think that's normal with these surgeries.

 

I have the movie "Blind Side" from Netflix and am going to try and watch it today.  It may be difficult because all I want to do is sleep.  You don't get much sleep in the hospital.

 

butterfly

Lori,

SO GOOD to hear from you.  I've been so worried.  I spoke with Lizzie the other day, and I thought I remembered your last name, and told her what I thought it was, and she said "Yes, that's it".  I called Cleveland Clinic and they said you weren't there!  This was last Sunday or Monday.  Anyway, so glad to see that you're home and on the mend.  I knew you'd make it through surgery fine, but it's still nice to hear that you did.  I know you have a long recovery ahead with everything you've been through, and I wish you the best!

Janie

Butterfly, so glad to hear from you. I, too, just got the ileostomy June 21st, and it has been difficult, but, getting better everyday. So glad you had surgery when you did....is the infection the reason why you they left your wound open? OUCH! How long will it take that to heal? Is the vacuum causing you pain? Hope you are on good pain meds. I bet your ileostomy will be a breeze to handle compared to the leg bag.

Hodaya, I still have abdominal pain, so, I am not sure exactly how I am feeling. I have had some gas pains, but that is also getting better....and the stoma farts, ALOT, and this is awesome because I couldn't fart before surgery....I can also burp, where I couldn't before surgery. So, these 2 acts alone already make me feel so much better. It is just so nice to not have to worry about pooping....I mean, my life still revolves around pooping because of the stoma and I am still worrying about what to eat, etc to balance out the output, but, I can see down the road a couple of months out, and I can see myself living a NORMAL life. I truly can...So, I think I made the right decision having the ileostomy!

Hi Ladies,

 

So great to hear from everyone...all this good recovery news is wonderful!

 

Some good news about Lizzie, too!! She did have a reaction to the new pain meds, so she is now back on the original ones. They finally started TPN last night, and (huge praise!) she has bowel sounds again!!! They pulled the NG tube earlier today, and they are slowly re-introducing food. If everything goes well, they will let her go home on Sunday!! How's that for an Independence Day?! Keep the prayers going that she continues to head in the right direction- for decreased pain, and that her bowel would continue to function as it should!

 

Love to all!

 

Allie  

Prayers to Lizzie, especially if they send her home. BUT super news for now. Thanks for the update Allie. Big group prayer for her.

Rosemary