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Boat, How You doin? Any improvement?

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Posted 4/11/2011 3:47 AM (GMT 0)
Hey Boat, Thinking of you. Any resolution of your post op difficulties? Any miracles happening for you? Rosemary
Posted 4/15/2011 11:56 PM (GMT 0)
Not really. Things are still going not so great. I think I am getting hemmorhoids :(

I will be seeing the surgeon sometime this coming week. Me and my parents dont see any point in waiting as it is only getting worse/not improving.

I dont know if he will want to dive right into biofeedback or if he will even consider re-testing anything like anal manometry, defecography, or check for a anastomosis stricture. Are there any standard steps they follow post surgery if things arent going well?
Posted 4/15/2011 11:59 PM (GMT 0)
it sucks because i know stuff is going through me fast. I just get a pressure in my rectum and a little farther up, and then go very little each time, but have many urges. So either my muscles down there arent owrking right and stuff is clamping shut too soon, or there is a stricture only allowing little bits past giving me all those very small frequent bm's. My anl sphinctrs are tight as well. Any kind of indigestible matter I can feel like it is coming out of a straw and it shreds like glass/razors :(
Posted 4/16/2011 1:12 AM (GMT 0)
BOAT,

I feel sooooooo bad for you. I would say you very likely have a stricture at the anastomosis. Insist right now on a gastrograffin enema with NO balloon to keep the gastrograffin in as that may hurt the anastomosis. A slow, low infusion of this water soluble contrast can diagnose stricture in a minute. Unless there is some pressing reason your doc will not do this, tell him you would like it done. These can be dilated, but the fact that they have formed means that that area has turned to scar tissue and is no longer muscular or peristaltic. This is how it was with me anyway. The fact that yours is a rectum to SMALL bowel anastomosis instead of rectum to descending colon anastomosis might be the reason your doc is hedging on the contrast enema xray. I don't know. BUT this does not sound good and I really feel for you. I remember that pressure and being made to wait, the second I saw that xray of the stricture I knew I would end up with an ostomy of some kind. It took me 13 months, 7 hospitals, and 11 surgeons until I got it. I sure hope if this is your problem either it can be dilated AND work or you can get an ileostomy and move on with your life. I will be thinking of you. I can soooooo relate. Keep us posted. Rosemary
Posted 4/16/2011 1:16 AM (GMT 0)
Boat,

WIth my severe anastomosis stricture I was housebound as every time I took a step one of those razor sharp tiny bits of stool came out in my underpants. I felt like I was going to explode and was in horrific pain. I would have 40 little rabbit pellets per hour. On the gastrograffin xray the colon above the anastomosis was severely distended with stool. WIth yours being the small intestine above the anastomosis and your colon gone, I think your doc should dx this sooner than later because the small bowel (to my knowledge) cannot distend as far as a colon can. Bring this up to your parents and your doc then go have a group meeting with your surgeon. Rosemary
Posted 4/16/2011 9:39 PM (GMT 0)
Did your doc recommend checking the anastomosis or did you have to ask him?
Posted 4/17/2011 12:32 AM (GMT 0)
Hi Boat,

I had to INSIST!!! Rosemary
Posted 4/17/2011 3:16 AM (GMT 0)
Boat, I had the gastrograffin enema xray only 25 days after my sigmoid colon was removed. Descending colon hooked to top of rectum and all went fine with the gastrograffin just infused very slowly with no retention balloon. Stricture with built up poop above it very obvious. I KNEW I had it I could tell.

You had your surgery March 17, so you are about a month out. Based on my experience it would be safe for you to do. Ask your doc. Strictures don't just go away. good luck.

YOU are so young I wanted this to work for you big time. BUT you will find a way. You are very methodical and I can tell are going to be a super doctor maybe BECAUSE of this experience. Don't mean to say that I'm glad this is happening, NO WAY, would I ever mean that, BUT you will really have a gift many other docs don't, you will be able to RELATE to patients with problems. AND understand what they feel like. I want so much for all to work out for you one way or another. Let me know how you do, OK? Am thinking of you. Rosemary
Posted 4/17/2011 10:37 AM (GMT 0)
baot, i'm so sorry to hear all this. my drs didn't want to check the anastomosis either. only after i went to the surgeon and told him "do me an ileostomy", then he sent me to do the test. my anastomosis was fine. it's just my anismus and slow small intestine. hope things work out for you soon. meet your surgoen and insist on having the test. good luck!
Posted 4/19/2011 7:44 PM (GMT 0)
So Boat, did you insist yet? Rosemary
Posted 4/24/2011 12:20 AM (GMT 0)
He checked the site and it was wide open (went up my bum with a scope). I also had a defecography and everything looked fine. No enterocele, intusseption, and only a very tiny anterior bulge. It took me many pushes and lots of straining to get it out though, and I couldnt even feel it in there. They had to ask me "if thats all I can get out" because when I first stopped there was apparently still about half left so I had to keep pushing. I had "near-complete" evacuation. I am guessing my rectum just doesnt sense it well, and I just cant push it out very effectively (though we cant figure out why).

I am starting physical therapy and will see him again in a month. I mentioned the ileostomy if this doesnt work and we cant manage me symptomatically, and he said he didnt want to put me through that, and didnt think it should come to that, but also didnt say no if it does so I will have to ask him more directly next time if things still are bad.
Posted 4/24/2011 12:22 AM (GMT 0)
I am just so sick of the bloat. That first week was amazing. No bloat at all and enjoyed food every meal again. Did the ileostomy get rid of most of your bloat?
Posted 4/24/2011 1:37 AM (GMT 0)
Hi Boat,

Good to hear from you and that you were tested and checked out.

Here are my thoughts:

1. What did this defecography say about your anorectal angle?

As I remember your pre-op defecogram, your angle was around 90 degrees for continence, then the angle widened for evacuation likely to around 130-145, then angled again for continence at 90. This is how it SHOULD go. This means that prior to surgery your puborectalis muscle relaxed and allowed the rectum to straighten for defecation, then the puborectalis muscle tightend again to angle the rectum for continence.

So this is why I am asking you what the anorectal angle did on this post-op defecogram. Let me know.

2. If on this post op defecogram your anorectal angle stayed at 90 degrees the whole time, even when you were pushing, then you have either developed "non-relaxation of the puborectalis muscle" that is what physical therapy is for

OR the surgery somehow injured the nerve which controls the puborectalis muscle, thus no longer allowing the puborectalis muscle to relax and tighten.

OR the surgery scarred the levator ani muscle to which the puborectalis is attached in which case physical therapy and even a botox shot into the puborectalis muscle end plates would do no good. THis is what happened to me.

3. Are you bloated now because you are not able to pass sufficient amounts of stool now like you could immediately post-surgery? This is what it sounds like. Correct me if I'm wrong.

4. Hate to tell you this, but even with my ileostomy, even though (so far thank god it is working) I still am bloated! My surgeon told me the other day that it could be due to my pre-existing IBS. IBS (Irritable Bowel Syndrome) only affects the colon! As I have an ileostomy I am not using my colon. I could not quite wrap my head around his explanation, but he is a surgeon and GI docs have more knowledge of the function of the GI system, so am not criticizing him, but I was a bit surprised at his answer. Then he said he thought maybe I had sensitive nerve endings in my small intestine. To my knowledge the small intestine does not have nerve endings that is why we can touch our stoma (or people can even injure their stomas) and we don't know it as there are no nerve endings. So I'm still trying to figure out my bloat issue. Don't forget I have TON of scar tissue in me from the disaster surgery that lead to me needing the life saving lysis of small bowel adhesions and the ileostomy, so I may have some left over adhesion not obstructing me, but maybe causing me bloat? In my case, who knows?

BUT a GOOD sign for you Boat is that immediately post-op when you felt well and stool was passing well and you were hungry, eating, and not bloating, sounds to me like if you can get that stool passing again, however you need to do it, you may likely not have bloating forever.

Hope this answer makes sense. Ask me for questions or clarifications and I will be glad to get back to you. Remember there is no MD in back of my name, I just have a WHOLE lot of experience and knowledge I gained from having to see 11 top surgeons nationwide prior to getting my gut damage fixed the best that could be done with the ileostomy. So I have absorbed some info along the way.

If you could not really feel the contrast in your rectum for this post-op defecogram, did they think that you had some mega rectum issue from all those years of constipation or did some nerves in your rectum get damaged? I think they had ruled out mega rectum prior to your surgery?

How far up is you anastomosis? If it is very far up and you have like 6-8 inches of rectum then you likely have no nerve damage. If they put the anastomosis far down, then nerve damage could be cause of your issues. Yet that would not explain the success you had immediately post-op. Takes 2 weeks for scarring to manifest, .........wow wish I could figure this out for you.

Glad the doc was not totally closed to the idea of ileostomy if you need it as you do need something that works. AND you would do fine with an ileo. They are manageable after you get the hang of it. But do try the PT then if that does not work ask to be put deep under general and try a botox shot into the end plates of the puborectalis muscle and the levator ani. The body has to be totally unconscious so this muscle can be stretched and injected. I learned this from one of the top docs in America, the one who saved my life. He is great! Retired now, but very knowledgable. He was I think HOPING I was not scarred and that this shot would work. It did not for me. But, if it was just "non-relaxation of the puborectalis" supposedly it would have worked.

Rosemary
Posted 4/24/2011 1:42 AM (GMT 0)
Boat,

I just had one more thought. Did your doc use EEA staples at the anastomosis? This among (other things in my case) induced scarring in the walls of my anastomosis. So with yours I was thinking, even if your anastomosis is wide open, are the walls of that joined area still muscular or are they now turned to scar tissue like mine did?

Did he blow in air to see if that area distended when he scoped you? This is how he would be able to tell if it was still muscular at the join and had not turned to scar tissue. If the walls of the join turn to scar tissue they are no longer peristaltic and poop just sort of moves down to the point of the join, drops through the join, then is able to be moved peristaltically by the rectum below the join.

Rosemary

Post Edited (esoR) : 4/23/2011 7:46:07 PM (GMT-6)

Posted 4/24/2011 2:25 AM (GMT 0)
Boat, I have had my ileostomy for 10 months and 90% of my bloat is GONE. I feel better than ever.

I hope that you are still in very early days and can come out of this though. Hang in there, Tracy
Posted 4/24/2011 4:37 AM (GMT 0)
Boat,
I'm so sorry you're still having issues. I totally understand, I had the same issue after my colectomy, but I had about 3 good months before I stopped going again. Like you I had the rectal issues....I could feel it and had pressure..horrible pressure. I used enemas at first and drank prune juice. Both things helped, but I didn't want to live like that. I was considering ileostomy when I started taking miralax 2x a day and it's been a miracle drug for me. I know it doesn't work for everyone, and before surgery it never worked for me, but luckily it has worked since I don't have the colon. I still have to do an occasional enema, but it's so much better than when I had the rectal pressure. Give it a try if you haven't already. It took a couple days for it to work for me, so if it doesn't work the first couple days, give it a little longer.

Good luck!

Janie
Posted 4/24/2011 6:46 AM (GMT 0)
boat, i'm so sorry. but maybe you can manage like Janie with miralax or any other laxative. i know right now laxative sounds like a dirty word, cuz you were obviously hoping (like the rest of us) you won't have to hear that word ever again. i was actually dreaming i will need immdium and such after the colectomy. i actually WANTED to be in that situation that i need immodium. but i was so wrong, cuz my small intestine is so slow that even now with my ileostomy i still need lots of prune juice to make the stools out. as long as i take prune and pear juice, and keep my meals small, then i'm ok. but if your small bowel is ok and not slow, you shouldn't have issues with bloat at all.
Posted 4/24/2011 9:14 PM (GMT 0)
o you mean I shouldnt have bloat with an ileostomy if my small bowel is fine, or I shouldnt have bloat at all now? All the stuff moves through me fairly fast and is coming out of me in tiny little bits by about 2-3 hours after eating it. It just gets stuck at the end :(
Posted 4/24/2011 9:24 PM (GMT 0)
i do remember he blew air into me when he checked it and said things looked fine
Posted 4/24/2011 11:11 PM (GMT 0)
Hi Boat,

At first you had no bloat when all was passing well. So I think if you have to get the ileostomy and it works, then you should go back to having no bloat. If the area distended when he blew the air in, then all should be well with the join.

I am having this bad pressure feeling just above my stoma and bloat, though so far all working OK with ileostomy. BUT, my surgeon said IBS, IBS is only in the colon which I am not using. OY! Anyway, I read in the Phoenix Magazine (for ostomates) that that can be the sign of an adhesion in the area of the stoma. But this feels like it is in the skin layer. I am going to try and take off about 10 lbs and see if that will help. I have gained 36 since the stoma was made and only needed to gain 26 to come up to my former normal. Am praying I can get this feeling gone. Seems like once we get into something, it snowballs. The trick is to hold things at bay the best we can I guess. So as long as poop is passing I am going to try and ignore my bloat. BUT it's not easy. All resolves when I lie down. No peristomal hernia. BUT the lady in the Phoenix magazine, who was told by a doc that it could be adehsions, her pressure went away when she lay down. Scary.

I wish you the best Boat. Frustrating is the word. Rosemary
Posted 4/24/2011 11:23 PM (GMT 0)
funny thing is the day I had the defecography, it was a double contrast, so I had to drink some barium as well. After I passed all the barium I drank, I had much larger and easier (though still watery) bowel movements the rest of the day and felt perfectly fine. Bloating went away, and I felt good most of the next day as well (but started having weaker and incomplete stools again so it started to build back up). Dont know if the barium did something to temporarily make it easier to go or what but I felt great.
Posted 4/25/2011 2:17 AM (GMT 0)
Boat,

This could be VERY significant! Tell your surgeon and also run this by a GI doc that the barium drink made things good for you that day. I think barium thickens stool. I know people with colons can get really constipated from it, but with just your small intestine, maybe it thickened it just enough to give it some momentum. Maybe what you need is a bit of a thickener then some Miralax or Sorbitol. The sorbitol, fake sweetner, was something I was never told of back when I was all together. That would have done the trick for me with my colon as I had no transit issue. When I mess with Sorbitol having only the use of my small intestine I get all this watery diarrhea. The fact that this incomplete stool passing and resultant bloating seems to come and go is very significant. You would NOT want an ileostomy if by taking something that simulates the action of the barium could cure your issue.

Rosemary
Posted 4/25/2011 2:21 AM (GMT 0)
Boat, if it is at the very end that things get hung up, then that is outlet obstruction. As you were fine in that department prior to surgery, it seems odd you would have developed it. Maybe the PT will do some good. Mention the Botox shot too.

Oh, yeah, how low down did your doc do the anastomosis? The lower it is made, the more apt you are to have that outlet obstruction issue. Rosemary
Posted 4/25/2011 2:07 PM (GMT 0)
the barium didnt thicken it up. The barium itself was actually really hard to get out. Once it was all out though I started having larger very watery stools. Before the barium even water was hard to get out though, so I dont know if the procedure itself somehow temporarily relaxed my anus or opened up my rectum more (allowing me to have easier larger moevements).
Posted 4/25/2011 2:09 PM (GMT 0)
I think my rectum is becoming insesnsitive to the prescence of stool as well. I cant feel it ever, I dont get the urge anymore, and it is just a pressure and pain. When I get that and go to the toilet I can squeeze out some stool. If I try and ignore it I will sometimes have little leaks :(
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