Post-op Progress and Challenges - Week 5

The one with the ADA Rail.....?

Well, folks, it's been 5 weeks since my ileostomy reversal and we're thinking of moving my "bedroom" back upstairs. For the past year and a half, my bed has resided in the middle of my den. Due to the layout of my house, all bedrooms are upstairs and, since my emergency surgery back in Dec. 2010, I've had real problems getting up and down the stairs......so, to make things easier on me, my dear hubby relocated our bedroom to the middle of our downstairs den. Now I am sure you are wondering "Well, what's that got to do with an ADA-approved toilet?" And the short answer is that my upstairs bathroom is in dire need of a higher toilet with rails......I have one of these gems in my downstairs half bath; and believe me it has been a LIFESAVER the past few months; so before I move back upstairs a higher toilet will be one of the first things on my shopping list!

And, speaking of the loo......

I now have a dry erase board on my bathroom wall! In order to track all my recent bathroom visits, it has become necessary for me to install a dry erase board, complete with a set of colored markers, to record each and every trip to the loo! The top of the "Magic Board" reads "Welcome to Pooville!" I tried to embed a photo of said board into this blog but I haven't found a way to make it work. So, for now, let's use our imagination......

Here's my latest updates at the 5 week mark, post-op!

1. And the doc says.....

I went to my colorectal surgeon on Monday for my second follow up. Still progressing well, healing wise. My stoma site went through a metamorphosis, of sorts, this week as it shed its "skin" and now all that remains is a newly pink round spot about the size of a dime! Hard to believe that just 5 weeks ago that site served as my lifeline between "doing" and "pooing!" It still seems SO strange, at times, NOT having "Old Faithful" there to check on....to remind me that I've been given a second chance at LIFE.....but you know, now that little scar serves as an anchor. An anchor that holds me to reality......an anchor that reminds me how it once held me steady and securely so that I could become stable, and heal, and accept, and BECOME.......

At any rate, things on the abdominal front are wonderfully normal. The trips to the bathroom, however, are another story.

We are still having problems finding some sort of a combination of fiber, meds, etc. that will slow down the bm's. I am STILL going about 16 times per day.....thus the reason for the dry erase board ;).....and it is really wearing me down. A LOT of this activity occurs between midnight and 7am.....so I am up most of the night, every night. I grab sleep when I can during the day; but needless to say this is wreaking havoc on my internal clock. Since my last update, I have added Metamucil pills - 9 per day - to my daily regimen. I also tried adding Imodium along WITH the Lomotil.....and that actually made things WORSE. Then, on Monday, the doc added something called "Cholestrymine" to my daily cocktail. This is marketed as a cholesterol medicine, but one of its lovely side effects is constipation....well, for a normal person anyway. I won't be taking this stuff for too long because 1) it doesn't work. 2) It has the consistency and texture of pure dirt. The directions say "stir vigorously!: but let's look at this from a logical point of view.....when you stir DIRT vigorously and then stop, what happens? The dirt immediately starts to settle back down to the bottom of the glass. Same with this stuff. Then, when you try and swallow it, it gets caught in the back of your throat and starts to expand. So in order to get it down, it's like one cup of water to one swallow of "dirt." No thank you! If I should require this in the future it will be much easier, and cheaper, just to go and dig some dirt out of the backyard and then mix it with some water. Nuff' said.

The only thing left to try is the narcotic called "tincture of Opium." I haven't said "yes" to it yet; but I probably will after my Cholestryamine experience. My mom says that this "tincture" is what they used to use in the old medication called Paregoric......they used to give this a lot to babies for extreme colic and such when I was little. I hate to even go this route....but if it will give me just a little bit of relief for a few weeks, perhaps the bm's will start to lessen as my rectum learns to hold more and the small intestine learns to hold more water. Patience. It can take up to a year for this to happen. A year. Not a lifetime.

2. Diet

Let the berries begin! :)

I added a few more raspberries and strawberries to my fruit list this week; along with a peeled honey crisp apple and a banana! Oh it was soooo good to be able to be a little "seedy" again......with fruits, that is ;)

I've been eating a lot of fish the past couple of weeks. Especially salmon. Not real experimental on the veggie front yet.....a few green beans, small serving of potatoes. Another thing I really miss is salad. Not brave enough to try salad yet......it may add a couple of trips a day to the loo. All in "doo" time.......

3. Exercise

I am up to about 70 minutes per day on the treadmill. I am hoping that this will eventually help with the swelling.....so far I haven't seen a lot of benefit with the fluid retention; but I know it is helping me to remain limber and helping with stress and emotion so that I don't bite my loved ones' heads off on those days when I am feeling especially tired and/or frustrated. What with my sleep patterns being so "off" right now, I find myself on the "cranky wagon" more times than I care to admit......a good workout helps.....I can take my frustrations out on the likes of LMFAO and Lady Ga Ga...... "I'm sexy and I know it........I work out!" (or not!;))

4. Challenges

As you have probably surmised, I continue to struggle with the fluid retention from my hospital stay. If this continues, I will likely explore a new PCP to see if we can get to the bottom of the reason I am still retaining so much fluid 5 weeks post-op. Perhaps it is just my system recovering from the trauma of surgery......but I would like to have my kidney function checked, just in case.

5. Progress

As stated earlier, I am thinking of moving my bedroom from the den back upstairs...which means that I am fairly certain I can make it up and down the stairs again with minimal difficulty. On the bm front, still NO ACCIDENTS! My reversal, to date, has been remarkably quiet and successful. I thank God daily for my ability to recover and to remain hopeful and receptive during this adjustment period.

And, to all of YOU....

You guys have no idea how much you "give back" to me......how appreciated and accepted I feel with you.......how you encourage me with your words and brighten my days with your humor and presence. How you help me to look for the logic in situations, at times, when I can't get past the overwhelming "feelings".......

THANK YOU ALL SO MUCH!

You're the best! :)

Blessings-

Darla :)

Hahaha, Darla would love to see that board... 'cause I like that shite stuff! Lolol. I know there are people who could show you how to put it on. Try admin so it's not on your profile. So if you can, I would appreciate you showing me too. Toodleloo for now. Well done! Hope all your trips get less and less. Xxxmooxa xxxxxxx :D

Mooza - How are you? Haven't you been in the hospital? What happened? Are you ok now? Sending love and prayers your way! Darla

I used opium tincture while going through chemo. It was the only successful remedy for the diarrhea issues I was having. I was a bit concerned about using opium, but it had very little impact other than firming up my output. After chemo, kicking wasn't too bad. Some insomnia, but that's about it. Good luck to you, Darla. God bless, Dave.

Dave - Thanks so much for sharing your opium experience with me. You know, for most people and many doctors, the minute they know you are on a narcotic, you are automatically classified as a drug addict/substance abuser....no matter the legitimate medical reason behind using something like this to calm down a very overactive small bowel/shortened rectum post-reversal problem such as mine. Glad you can understand how draining the constant diarrhea can be...I've tried just about everything else and nothing works. So I am going to give it a go and see what happens. I am sorry, though, that you had to go through all that bad chemo for a time. Thanks so much for the well wishes, too! Blessings :) Darla

Living with Your Ostomy | Hollister

Hi Darla, it's so nice to read your updates. You seem to be doing really well, apart from your fluid retention, and I'm sure that will be sorted very soon. I'm constant in my prayers for your progress, and that goes for all the other ostomies on here. It's so good to hear from you, sending my loving thoughts and the sunshine and rainbows to reside over you. Take care, Ambies. ..x

I keep track with an old-style blackboard I salvaged from the dump, and I check off as watery, soft, hard, and just right. All week they have been just right, but still several times a day, but getting less and less. My doctor says at this rate, I will be getting more regular each week, so I won't be watching for the nearest bathroom when I go out. This week, I started cross-country skiing again, and I'm making 12km a day in just over 1 hour. I'm glad you are doing so well with your recovery also and hope everything continues to heal. You have been a big help for me as I am recovering along with you. Stephen

Have to say, Darla, I want opium. Where and how do I get it? ARGGGGGGGGGGGGGGGGGG....... Now, your problem. Yes, I had only 3 reversals, but I had only small bowel sewn back to the rectum stump. I'm sorry to say, I went 4 years like that and it didn't change the frequency. Just had a stricture I couldn't fix near the rectum and had my whole proctectomy thing done. Worst thing I ever did, but I could not handle 4th reversal. Just wouldn't work and I'm just too old to go through that shite EVA AGAIN. Hey, Begzy, yes, I've been out of the hospital for 2 weeks. We chatted via mail, yeah? OMG, where have I been? In morphine heaven. I don't come on that much 'cause I forget, but I'm here right now. It's Sunday, 12:30 PM, lunchtime, so it's like Saturday night in the USA. LOL, woohooo! Don't worry, everyone, Sunday should happen for you all. The sky didn't fall, but the sun is out and I wish I could escape the house (JAIL). I have found I have no, none, nudddaaa feeling on my midline scar or around it. Now, beware of too many ops. Imagine if a guy was touching my belly, I wouldn't even know. WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA :P Gotta go, got some friends popping in and I think I should take the booze and hide it. If I can't, why should they? I'm just a lovely Aussie gal---Shelia. LOL. If I can't, you shan't. Oh, the pain. Forgot how shitty it is. Toodles, all y'all. That's for you, Begzy. Y'all. Hahahahahah. I have Sunday madness going on. XXXXX

Steve - Glad I am not the only one who resides in Pooville! ;) I put a pic of my dry erase board in my profile photos! ;) I hear ya on the watching for the nearest bathroom when you go out....that is the first thing I check out, no matter where I am! Man, I commend you on the cross-country skiing adventure....sounds like a lot of work, but a lot of fun, too! Please keep me posted on your healing process....we are both doing well and have much to be thankful for! :) Take care. Darla

Ambies - Thank you so much for your continued support and prayers.....I am doing well, all in all, and I am sure all the little tweaks will work themselves out in due time. It is still pretty early....only 5.5 weeks out, and I am already on the treadmill over an hour a day so I would say I am making progress! Hope everything is well with you....you really brighten my days and lift my spirits! :) Darla

I'm doing okay, Darla. I'm just having some problems with food because of adhesions. My stoma does silly tricks and goes into hiding, then food can't get through, so I'm waiting to see a dietitian. My stoma's not new to me; we have been together a long time, but I still have my problems from time to time. I'm a bit like Mooza, always in trouble lol, but thank you for asking. I'm getting there, just taking some working out. You take care, lots of love. Ambies. x

Hi Darla! I'm going this Friday to have my ileostomy reversed, so reading your experiences helps me know what to expect. I was supposed to go back to work on April 1st, but I know that is not going to happen because it may take a while to have normal bowel movements, so I'll take whatever time I need. Keep up the healing and the positive attitude. Mary Jayne

Well hello Mary Jayne - nice to meet you and thank you for stopping by my little recovery corner. I am glad that you find my info helpful and I wish you the best of luck this Friday as you go and have your ileostomy reversed! I know it's a little unnerving for all of us....I almost talked myself out of it several times but I am ultimately glad that I moved forward and had it done! We are trying to tweak my frequent BM's at present...having no large intestine kinda puts a different spin on things than those who have some large bowel left...most of my ostomates who have had reversals in the past few weeks have already resumed almost normal or normal BM's.....hopefully you will follow in their footsteps! I will agree, though, that April 1 is a bit too soon to plan to return to work...best to take all the time you need to heal and get stronger so that you are able to knock 'em dead when you do return! :) I read some of your other posts and see that you have already had some recent surgery; so it's really great that you can go ahead with this reversal so soon after your other procedures! I will definitely keep you in my thoughts and prayers.....please keep me posted on your recovery and your progress! Blessings! Darla

Great to see you still remaining positive, Mary Jane! You'll be in my prayers and thoughts this Friday. May everything go according to plan. So do take good care, Colm.

Hi there, Darla. Just wondering how your bathroom visits are progressing? I do hope your new medications are beginning to take effect! Stay positive... your positive attitude is infectious here! Take good care, Colm.

Hey Colm - I was just thinking about you earlier this morning! How are you doing? Everything still progressing on the recovery front? I am doing a little better with the bathroom visits. I finally got the script for Tincture of Opium...man that one is soooo expensive.....my copay is $80 USD per month but the true cost of the medication is $1284 USD per month. Insurance pays the rest....thank God! Otherwise, I would have to go without that one! Anyways, between the Opium, Lomotil, and 9 fiber pills per day, I have gotten the BM's down to 10-12 per day on average. Not ideal, but better than 16-18 per day! They tell me that as the rectum learns to hold more and the small intestine learns to absorb more water, that the BM's will decrease to about 7 per day...but that can take up to a year. :-0 A year...but not a lifetime! Let me know how you are doing. Darla

Thank you Darla and Colm. I'm starting on my starvation liquid diet today and antibiotics tomorrow. I appreciate your prayers to help me get through my fourth surgery which scares the hell out of me. My faith is helping to keep me positive and hopefully this time I'll be fixed once and for all. Mary Jayne

Mary Jayne - Don't you just hate the starvation liquid days....and it's those days that you see EVERY good restaurant commercial on TV and get cravings for anything and everything you cannot eat! I know that when I did mine a few weeks ago, it seemed like my hubby was eating especially good foods for those couple of days and I was shouting NOT FAIR! LOL ;) I don't know where I would be without my faith, either, so I know what you mean about keeping positive...it does help to know that our Father is watching over us and keeping us cradled closely during our times of need. :) We'll be believing that this will be the LAST surgery for you and that everything will go smoothly and successfully....and that your recovery period will follow the same path! Darla

Wow, it's great to see you remain so wonderfully positive, Darla!! You are an inspiration! Thankfully, I'm not doing too badly at all. I have had a few days of constipation, but after plenty of walking and water, I got back to 'normal' again. I'll be in to see my surgeon on Tuesday, my first visit after surgery. My stoma wound has finally closed over and has a decent-sized scab over it now and needs no dressing. So, I'm not doing too badly at all and always looking forward! Here's wishing you a wonderful weekend and, of course, a very Happy St. Patrick's Day for tomorrow. Do take good care of yourself, Colm.

Hey Colm - It will be interesting to see what your surgeon says on Tuesday since it is your first time back post-reversal. Glad your stoma has calmed down...mine is just a little scar now, the scab has fallen off and it looks like a little round gunshot wound, about the size of a dime. I was able to go to a movie and dinner yesterday and sit through the movie without a potty break....hey that is progress! :) Don't forget your green today lest you get pinched! Talk to you soon and keep me posted! Darla

PS to Colm - A good guy friend of mine used to have a little Irish crush on me due to my strawberry blonde hair and green eyes....he thought I was an Irish lass! ;) When he discovered I wasn't, he stopped crushing....or at least I think he has! ;) Have a great St. Patty's Day.....the Burger Kings in our area are offering green ketchup today! And of course there is an abundance of green beer everywhere! And a parade! Darla

Darla, my son who is 8 weeks old had to have his large intestine completely removed and now has an ileostomy. The doctors said they will be able to reverse it. I'm really nervous because nothing ever goes the way it is supposed to. I have been reading your stories and I'm hoping my son has a good outcome like you have had.

Jak1974 - Wow! I will certainly keep you and your son in my thoughts and prayers! As for having a reversal later on....yes, it is possible and it is also possible to live a life relatively free from complications afterwards. It has been almost 10 months since my reversal now and I am doing very well! I am still adjusting to variations in diet and slowly adding things back to the can eat list, taking vitamin supplements in liquid form and eating as much fiber as I can along with taking my Metamucil pills daily. I also take Lomotil and Tincture of Opium daily to slow down the BM's. But, it is a small price to pay in the big scheme of things. :) I am so incredibly blessed! Your son will have a good life...with, or without, the bag; as he has you to love him....teach him....guide and support him as he grows up to be a stellar adult. After all he has already been through, he may very well develop the qualities of acceptance, kindness, tolerance, compassion, and empathy towards his mentors and peers as his little life molds and deepens over the years. It is so exciting to think about what the future holds for this special little guy whose life has already been given back, in a sense, to this great big world! Please keep me posted on how he is doing. I will hold him close in my prayers and in my heart. Darla