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

Hey there ladies. Thanks for caring!

Well the first week or so went great. I was going 1-2 times after each meal and once or twice at night and felt great, no bloating or anything. BUT, the past 4 or 5 days havent been so good. I have been having the same amount of urges after each meal, but now when I go it feels very weak and incomplete and I have to strain (but still dont get a lot out even if it is liquid). I am also now going like 3-4 times at night and they are larger since stuff just builds up during the day. I am really hoping this is just a bump in the road and not some rectal/evacuation problem we missed. I actually have my follow up with the surgeon tommorow so well see what he says

I know this is getting a little ahead of myself but if there is some kind of rectal or pelvic problem is an ileostomy the only solution, or would a j pouch/restorative proctolectomy work since it removes the rectum??



Trying to keep my hopes up :(

Post Edited (boatnerj) : 4/3/2011 3:52:19 PM (GMT-6)

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

Boat,

Don't get too discouraged yet, and even if you have pelvic floor issues, which I ended up having, there are things that can help, I take miralax 2X a day and for almost 2 years it's kept things moving. Initially I was good for 3 months, but then things almost stopped....I felt horrible and couldn't go even though I could feel it was in my rectum. Miralax has been a miracle drug, and even though it makes me go several times after taking it, it's much better than not being able to go at all.....but don't get discouraged yet. It takes awhile for our system to realize it's been totally changed!!

Good luck,
Janie

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)

OMG, after reading this post.  I had a gastrograffin enema done after I had my laprascopic left hemicolectomy.  It was found I have a stricture.  They did the balloon on me during the procedure.  Of course, I have still been taking laxatives daily, since post-op, and I am meeting with a colo-rectal surgeon to get all the appropriate tests.  And boat, for now, I know that is what they what to do with me is a colonoscopy with dilatation to balloon it up.  Also, I still don't know what miralax is like without a colon, but I know it bloats me!!!

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

Yes, what they did for my stricture was to dilate it with a balloon. remember I had my colon in me and it was being used. My sigmoid colon had been removed and the descending was joined to the top of my rectum. So that was where my stricture was at that join. Two balloon dilations did get the colon to its correct diameter. BUT what had happened was that because my sigmoid resection had been done wrong, blood supply to the ends of the joined colon had been compromised. So what I ended up with after the dilations was a colon anastomosis area that was the right diameter from the dilations, but the wall of the colon had turned to scar tissue and that part of my colon could no longer push stool along as it was no longer muscular tissue.

Am not sure how this would work with small intestine hooked to top of rectum as in your case Boat. Keep in mind that my pelvic surgeons also did 6 other procedures for issues I did not have, many non-consented, my case being not the norm in medicine. So my blood supply to my whole pelvis was severely compromised thus leading to much scarring and ischemia (lack of blood flow) to the ends of my colon that were joined. Do remember that my case was very different.

Strictures can form even if all is done correctly and if the doc does an excellent job. Sometimes it can be just one of those things. Just out of curiosity, did your surgeon mention this risk to you?

Miralax always bloated me prior to going down the road I went. BUT in retrospect, I wish I had just kept my original guts and put up with the Miralax bloat, but it was nasty; I remember that well.

Good luck Boat and hurtboy, Rosemary

Janie good to hear from you.

Rosemary,

Saw the surgeon. He says I am only two weeks out of surgery and my body will continue to have some ups and downs for about another month before we should try to take any action or explore any thing further. He says for now just increase fruit and vegetable intake and try some metamucil or miralax in the morning. If things are still going the same in a month when I see him we will try sending me to a pelvic floor specialist to see if they can help relax things and possibly look for strictures or anything.

Have any of you gals heard of people having bumps like this at first and then things gradually get better?

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.

Hi Boat,

Maybe what is making your surgeon wait on possible complication diagnosis is the fact that you are still moving your bowels with the bigger moves coming at night. So it's not like you have totally stopped as with what happened with me due to my stricture. Hopefully this is just a bump in the road as others have said.

Interesting that with the larger moves coming at night, maybe means something positional is happening? As after you are lying down, then the night bm's are larger. Just something to mention to have him think about.

Best wishes, Rosemary

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,

I hear your concern re: your time frame. I think you said that your surgeon left the full length of your rectum. Can you find out? The reason that this is important to know is that in a low anterior resection, even if there is no stricture, there is a tendency to have smaller more fragmented bowel moves. I know this is not your case from previous discussions, but ask just to rule out. Most injury to nerves or muscles happens when the surgery is performed very low in the pelvis. As I remember yours was going to be higher up.

Any surgery can throw things off, so do the PT and see what happens. If that does not work, there are Botox injections given into the end plates of the puborectalis muscle if it cannot relax as well as into the levator ani muscle. I do not in any way see how what happened to me could be happening to you, but I just wanted to throw some ideas out for you to ask your surgeon about. If you have to try the botox be sure they put you completely out with general anesthesia, not just light sedation. This is not just for comfort, but if you need this and you are not totally asleep, then it does not stand as good a chance of working because your whole body tone needs to be completely relaxed. My ileo surgeon is extremely experienced and this was what he told me.

Would hate to think of you having to have the bag, but your goal is to get something functional where you can proceed with your life, so you will do what you have to do. As long as you are doing some good moves at whatever time of the day or night, then likely all will be well with time. I am rooting for you and am in your corner.

You also have just passed the most important test you will ever take in medical school and I mean this from the heart. You have been a patient, you are right now anyway experiencing a set back and you know what it is like. You have just experienced what will make you an excellent doctor....first hand experience at what it is like to have a health issue and a surgery. Sincerely, Rosemary

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)

Yeah I tried the miralax last night and it was really hard to get the liquid stuff out :(

Scared to try it again :(

Do surgeons have to wait a certain amount of time before deciding an ileostomy is the next step? Hopefully in 3-4 months if things are still bad even after a month or two of biofeedback he would be willing to go for the ileo (dont feel like messing with botox or anything like that) since that would still leave me time to be able to go to med school. I really dont want to have to wait and re-apply, as I know I would not be able to handle the course load feeling this way. I dont even know if I will be able to hold a temporary job this summer if things stay this way (having several urges each hour but only getting out very small amounts, rectal pressure, etc).

Post Edited (boatnerj) : 4/5/2011 10:30:20 AM (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

I dont think anything was harmed during surgery, I think just half a lifetime of constipation causes strain and stress on the pelvic floor and it essentialy atrophies and also the muscles no longer coordinate like they should and is very hard if not impossible to get back to perfectly working.

The surgeon also said since they are one time tests they dont guarantee anything, and you may have just used the muscles right during the test when 9/10 other times your muscles wont cooperate correctly.

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

Boat,

You are right about all those tests being a one-time snap shot so to speak. I wonder why docs don't have us re-do them multiple times then for even more accurate assessment. Oh, lordy. Well, good input on your part. What Janie said is true. With an ileostomy you have to get the right appliance, then there are skin issue factors for some, finding just the right adhesives and skin barrier protectants, plus the equipment expenses are ongoing and you are so young. This is where the head swirl can come in, so one day at a time. So maybe keep up the Miralax for a few days, I don't know. Ask your doc. Rosemary

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.

you're right boat, many of us here are very happy with our ostomies, considering the altenatives. it's the best quality of life that we can get and it's truly not so bad at all. i do hope things work out for you, but if they don't, you know there's always a "way out".

---

Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

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

Did the bag help with the bloating? The bloating is back since things arent flowing right again.

Setbacks like this make me paranoid and worry I have something like CIP. :(

DId a little experiment today though. Ate red bell pepper woth lunch, then spinach with dinner. 1-2 hours after lunch I was having very small incomplete urges and going very little, but when I looked down I could see the red pepper in the toilet. 1-2 hours after dinner I could see undigested spinach AND red pepper. so I know that stuff is getting to the rectum, it is just sitting there and mixing :(

Is there any possibility that my small intestine may get progressivley worse if we dont do anything like an ileostomy if biofeedback does not work? For those of you who had ileostomies around a year after your failed colectomy with IRA, do you feel it made your small intestines any worse off, or were they fine after the ileo?

Post Edited (boatnerj) : 4/6/2011 6:15:59 PM (GMT-6)

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