BOAT, HOW ARE YOU?

Hi Boat,

Just wondering how you are? Have not heard from you in so long. How did your recovery go?

Rosemary

Boat,

Have your surgeon do a gastrograffin enema xray. Be sure they use a thin foley catheter with NO balloon when they administer this rectally. You MIGHT be getting a stricture (narrowing) at the anastomosis. (NOT saying that you are, but saying that this needs to be ruled out.) I got a severe one and this is around the time frame that it set in, at about 2 and a half weeks. Hope this is not the case but needs to be ruled out. I too was fine for the first 2 weeks.

If you did not have pelvic floor issues prior to the surgery and you did not as all your tests ruled them out, then I highly doubt that you developed any or that any were made by the surgery as the surgery involved colon removal ABOVE the level of the pelvic floor, levator ani muscle complex. Do verify this with your surgeon just to be sure. My surgery was done low in the pelvis and my levator ani became scarred, but I think yours was higher up.

Those internal pouches are successful in some people and not in others. Others will chime in I am sure. you will know more after you see your surgeon, but do get the gastrograffin enema xray. BEST WISHES and let us know how you do.

Rosemary

Thanks janie. Does mirilax bloat you at all? All I can remember of mirilax is how drinking it would just make me feel more bloated and uncomfortable. IS that any different with no colon I guess? How much do you take daily and when?

What do they do if it is a stricture at the site? WOuld they just dilate it, and is it permanent?

Post Edited (boatnerj) : 4/3/2011 4:44:56 PM (GMT-6)

did the balloon help? Sounds like you may need a total colectomy

Rosemary,

No, my doctor never did mention a stricture to mean.  To both of you, I still have to get it fixed, but I have been suffering a lot, so I still have an appt. with my local GI doc here on April 20th to get scheduled for a diltation.  Takes forever to get appts. here in southern IL, but I did have an appt. with an actual colo-rectal surgeon next Monday, April 11th to discuss my case b/c I really think I need another opinion, and from an actual surgeon that specialized in this, and do all the appropriate tests on me.

2009-Diagnosed with IBS after years of battling with constipation

2010- Colon inertia confirmed after transit study

2/03/11- Laprascopic left hemicolectomy to remove kink I had

Now have a Stricture

Still sturggling with trapped gas and constipation

yes boat. as Janie said, she had those bumps on the road, but she found a way to deal with it and she's happy. there were others who had bumps like these, but found a way to deal with them. hope it all works out for you too.

Most likely that is the case. I know I am jumping way ahead but how long do surgeons generally wait before considering going for the bag if the IRA isnt working. I have a month for things to get better, then if things havent improved well start the physical therapy/biofeedback weekly. I am assuming I will have another month follow up after we start that to see if there is any progress. I only have 5 months until med school kicks into gear :(

Boat,
Sorry I posted and ran, but life is busy now!! LOL

I couldn't take miralax before my colectomy; it bloated me and made me run to the bathroom constantly with just drips of liquid coming out at a time. Never helped me at all. I was amazed that it really helped after surgery. I was desperate and decided to try it and thankfully it's been a miracle drug.

One other thing that helped was prune juice....it just didn't seem to totally clean me out the way miralax does though.

I take it 2x a day....as soon as I wake up in the morning I take a dose (17 grams), and then I go several times in the next hour and a half or so, and then I take it again after dinner. Sometimes I go several times after dinner, but if we're out and I take it late at night, then I just go much more in the morning.

One other thing I do, but is really crazy....I take a lomotil during the day if I'm at work if I want to eat during the day. If I don't take one, I'll go little bits all day, or I'll feel like I have to go and can't. I think my small intestine is also a little slow, but my biggest thing is that the stool gets to the rectum and without the push of miralax just sits there. Basically the miralax keeps things going, but when it's not convenient to run to the bathroom I take a lomotil to hold things for a few hours. Crazy, but it's what works for me. Not perfect by any means, but manageable.

We were on a cruise a couple weeks ago, and I have to admit, cruising isn't what it used to be. I can't eat all meals without being very uncomfortable. Things just don't go through me the way they should. I usually eat a small breakfast and then not again until dinner if we're in a port. On the ship I ate a small lunch a few times, but I never felt great after eating that much. A couple days I had to give myself an enema in the afternoon after lunch.

Like I said, not perfect, but on normal days when not on vacation, travelling, etc. it's manageable.

Good luck, and I hope things get better soon!!

Hugs,
Janie

Post Edited (Janiepain) : 4/4/2011 7:32:21 PM (GMT-6)

Oh, Boat, others with IRA surgeries have gone this route hard to get out the liquid stool produced by Miralax. They have also had the rectal pressure issues. Prior to surgery your pelvic floor was just fine. I don't understand what happened. To put my case together for the suit, I had to get about a half dozen medical books and literally educate myself about nerves that connect with the colon, small intestine, rectum, levator ani, puborectalis, etc, etc. It is soooo highly complex. It sounds as if anything done to any part of the body can throw other things off. No patient would know this. That is why my original hysterectomy should never have been done as there was no disease. BUT it was this surgery that started all my gut stuff. The body is so highly complex. I think even the best docs don't fully understand as it seems to me it is beyond comprehension in many ways. When an ileostomy is new, the output is LOTS and frequent. With your timeline it seems like if this needs to be done, it should be done within the time frame you mention. BUT this is for life. If by trying more conservative measures will save you from this permanent state (ileostomy), you might want to consider the reapplication process (NOT an easy thing).. I had my original sigmoid resection in a rush to get back to work, then NEVER was able to return. So put your health above your career. Easier said than done. I feel for you. We are all with you. Rosemary

Boat, so sorry the miralax didtn't work. I did have to take it for about 2-3 days before it really started working, but I understand how miserable it is trying to get the liquid out....are you still able to go in the middle of the night, or are you just not going much at all?

I agree with Rosemary. Getting an ileostomy sounds like such a great solution when you're feeling miserable and can't go, but really think it through. After doing alot of research I believe I could deal with one if I absolutely have to, but I'd try anything and everything before doing that. As Rosemary has said, living with an ileostomy presents a totally different set of issues.

I wish you the best. So sorry you're having troubles. I know I had just high hopes for my surgery and while things are ok,. I never thought I'd have to live on miralax and continue to do enemas....but it IS better than before surgery.

Janie

I guess thats where we differ in our approaches to what is acceptable. I do not see having to use mirilax and fiber and such just to have "sub par" bowels movements as living. I need to be able to be active, feel good, and have energy, not constantly have to run back and forth to the bathroom just to have very incomplete bowel movements, along with anal burning, rectal pressure, etc. If I could control how and when I emptied my bag, along with feeling good for the first time, then it is a no brainer.

The doctors I used a year or two ago in the army had me do biofeedback just in case there was an issue there but it didnt help, so I dont have very high hopes for another go with it. :(

You seem fairly happy with your ostomy as do many other people. The only thing most people dont like is psychologicaly related, and I would have no problems with an ostomy if it comes to that.

Boat,

So you were in the Army and now you are heading for medical school. You sound like a really nice person with high aspirations for a fulfilling life. And that you shall have. You have the right attitude.

I know, living to manipulate bowel moves grows OLD, REAL FAST!!!!!!!!!!! However, this is what drove me to the sigmoid resection, which then lead to all the complications then finally to the ileostomy to save my life. Your fate not as dramatic, however, there are some things you should know. This COULD just be me as all our bodies are different. BUT, even with an ileostomy, you STILL have to manipulate what and when you eat and drink to a certain degree.

These are my examples:
1. If I get too hungy, I output TONS of bile, we are not just talking multiple trips to empty bags of clear yellow liquid, we are talking if a piece of bread does not slow me down, I have to go for the immodium. If I take too much within 2 hours of eating anything, I get this seriously dense effluent that it then takes TONS of tea and grape juice to break down. Quantity and timing is everything with me.
2. I have had 2 food obstructions on mashed potato. No kink and no narrowing showed on even the most advance imaging tests. Tea and grape juice finally passed that but it was a rough 10 hours.
3. Those of us without colons if we ever get the Norovirus with vomiting and diarrhea we have to get an IV or we will dehydrate.
3. Sugar, chocolate, alcohol, and caffeine are real GO foods. Bananas, rice, applesauce (with pectin), and toast are "stop" foods.
4. Some people have had issues with bag leaks and skin allergies/yeast, etc around the stoma, not me but some others.
5. Some on here have gotten peristomal hernia's, others have had blockages, others have been just fine and would not trade their ostomies for anything.

I would not go back to being gut injured and in need of an ostomy, BUT I would go back to my original issue where it took me 2-4 hours every a.m. to finish bowel moves WITH all my colon and rectum and small bowel all intact. I would have just worked part time and enjoyed the afternoons and evenings. You are much younger so I totally see why you want to just be on with your life. But, I did just want to tell you that no matter what any of us on here do, there are always issues of some sort to deal with. It's just a matter of trade off. Not meaning to sound bleak nor to tell you what to do. Just presenting the facts as they are with me.

Just meaning to shed some light. I will keep my fingers crossed for you that you are maybe just having a bit of a set back. That would be the best, but time will tell. I am sure you will make the right decision for yourself the best that can be done. Keep us posted. Rosemary

Hi Boat,

Others who had CIP or slow colons will respond. I did not, so cannot comment on that part of your question. BUT, your experiment worked to prove that your small intestine in and of itself has great transit. 1 to 2 hours small bowel transit is great.

Why is your surgeon reluctant to do a small gastrograffin enema xray to check for sticture at the anastomosis? I had one only 25 days after my op and nothing awful happened. As long as they do not use barium you will be fine. Gastrograffin is water soluble and also acts as a laxative enema, so not only would it show stricture if there was one, but you could get comfortable.

Yes, bloat is from backed up poop and gas. I would get on your surgeon for diagnosis as your symptoms seem to be lasting and are bothering you. Rooting for you, Rosemary