Rosemary, need advice!

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frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 7/1/2011 6:12 PM (GMT -6)   
Rosemary, I am at my wits end!  I am getting tired of feeling sick and nauseous all the time.  As you have read in my earlier posts, I have been through a lot the past month.  Well, this past week I have been trying to keep track of my progress, and I keep on getting sick most nights.  It is like the more food I put in me as the day goes by, I get to feeling sicker and sicker.  Either one I get sick and nauseous; gas does not move downwards; instead, it comes upwards.  I get excessive burping and almost feel like I am going to puke.  It is like I am going to, but I don't.  I am glad I don't!  Also, I get heartburn.  I start to feel a little bit better after I hit some kind of rough spot in my bowels, and finally I start letting out gas.  It is like 50/50.  But also at the same time, I can't poop either.  I get urges here and there, but it is either hard to do or seldom.  Like today, I got an urge this morning, got a little out.  Then, later, around lunchtime, it was like a bird dropping.  I just sucked it up and did an enema.  However, here I am again tonight, excessive burping, nauseous, bloated, and feel like I am going to puke until I get over this rough spot, so things can hopefully start moving downwards again.  It is like things just always want to stay bottled up inside me.  I can't take this anymore!!!!!!  I just really thought my symptoms I had before with CI would improve after my surgery, but I just keep on getting sick and sick!  I called the doctor's office again today, and got my appt. bumped up to Wed.; instead of Thurs., but I am just starting to think that I want things done pronto.  It is just sooo frustrating!  On my 3rd hospital stay, like I mentioned, they did not do that much; just an enema and mag citrate bottom; KUB, which the doctor said looked fine.  In the meantime, the nurse told me I need to a suppistory every morning to retrain my bowels, but this nauseous and excessive burping is what gets me, too.  I feel like something is stuck in there for awhile before things move downwards.   
 
I did have a defecogram before original surgery on June 2nd, which was fine, so that is why the doctor doesn't get all my symptoms.  However, before my 2nd hospital stay, my rectum did narrow and they ended up dilating it, and as you know, I thought I was going to end up with an ileo because they thought I had a leakage anastomsis due to all the blood, but I didn't, just some blood vessel bursted!  So, they just dilated my rectum, thinking I would be fine due to fine defecogram.  Still haven't had the anal manometry, which isn't until July 18th, but I just can't take this nauseous and constipation anymore.  I really have no life!!!  I feel like a couple my friends I just let down because I can't do anything b/c I just feel sick about every night.  I feel like I can't go out to eat (I feel like when I am nauseous,too that can't even take big sips of water), hang out with my friends, just getting weaker and weaker.  Do you think they need to another scope on me?  Gastrograffin?  CT with contrast like they did on my second hospital stay? (which was torture to get all the liquid down with as much nauseous as I already had at the time)  I just don't get all my symptoms.  I just feel like crying all the time; I am depressed, and I just want to be better.  In my mind, I just feel like I wish they did the ileo on me in the second surgery, so I would heal a little more, and get stronger.  However, right now I am not sure I want to go through another surgery!  I am not sure what I want!  To be better!  I have put up with too much for too long!  What should I tell my doctor when I see him?  Demand what?  Any advice is appreciated!!!!!!  I need help!!!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/1/2011 7:14 PM (GMT -6)   
Dear Hurt,

My original issue was not CI, in fact my system was fast and I was healthy as a horse. What happened with me is very different. In 2005 I had what was diagnosed at the time as a sigmoidocele. That means on a defecogram it was labeled that my sigmoid colon came down between my rectum and my vagina thus narrowing my rectum from the outside when I pushed to have a bowel move. 3 colorectal surgeons opined that I needed sigmoid colon removed. The one I went to also did a bladder lift I did not need, took out my healthy ovaries, hung my vagina off my back bone though it was not prolapsing and fixed a rectocele nobody felt on exam. I did not consent to all of this and would not have. The sigmoid resection turned out to be done wrong, thus the closing in of the rectum and scarring that ran along the colon. THEN due to all the surgery my small intestines scarred shut and I was unable to eat without small bowel obstruction for 7 months. FINALLY got someone to cut adhesions off the small intestine and do an ileostomy.

BUT with you having CI, which I hear can then move into the small bowel once the colon is removed, or still linger in the rectum which is tecnically part of the colon, your issues could be some sort of inertia especially in the rectum. I would ask for ALL of the tests you mention in your last paragraph, then depending on these just flat out ask your surgeon for an ileostomy. I hope all your surgeries were done laporoscopically so you won't have adhesion issues. I think once you say you want an ileostomy at your young age, you will get the attention of your surgeon. That is what Hodaya did and it worked.

BEST Wishes and I really sympathize with you. Rosemary

PS Hurt, the really bad thing about my saga is upon review of the original scan upon which the surgery was based, I did not have the sigmoidocele (internal prolapse of sigmoid colon) in the first place! though in surgery it had to have been seen my sigmoid colon was not redundant, AND surgeons removed it anyway, then did not send it to the lab. I am dealing with this legally, but I am how I am and have my ileo for life. God willing with all my scar tissue it will keep working. BUT, By rights, I should not have gone the road I did. BAD KARMA, huh?

Post Edited (esoR) : 7/1/2011 7:19:28 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/1/2011 11:29 PM (GMT -6)   
i didn't have your problem, so im not sure of any answers about that, but i do want to suggest protonix, it's great for heartburn and such. I took it for a long time while i was on immuran and 6mp, cause they gave me such bad heartburn, and kept the sickness that the phenogren wasn't keeping at bay go away. It's expensive though if you dont have insurance
hope you feel better!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 7/2/2011 8:38 AM (GMT -6)   
Thanks for the advice Rosemary!  I knew you had a different problem, but you are just very knowledge about things.  Plus, I get frustrated very easily now because I have suffered for sooo long.  Hopefully, I can put my foot down at my appt. on Wed. and tell the doctor how I have been feeling!!!  And with my surgeries, I guess I never thought about adhesions too much.  The surgery I had in Feb. was laproscopically, but the two I had here in June I was cut.  The surgeon said he would have had a hard time doing it laproscopically, I guess, when they did my left hemicolectomy in Feb. that was uneeded (didn't know at the time before joining this site that removing the whole colon is the only cure for CI); guess that is what I get for dealing with local docs.  I just hope everything works out!  Tired of the daily enemas now and laxatives that I think still don't help much.  Maybe some more testing will reveal things; I am just scared to plain out ask for ileostomy if all else keeps failng.  I don't know why; I am like after reading stories on here how people feel sooo much better, but I am still just scared!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/2/2011 11:31 PM (GMT -6)   
Dear Hurt,

Yep once they cut you open you can never have lap because they may accidentally nick a small bowel due to not being able to see through all the adhesions. Even if you are not bothered by the adhesions they are there esp from a vertical incision.

You are not the only one who had partial colectomy done then they found out you needed the whole thing out. There have been many on here where they did incomplete testing and would take the whole colon out for CI but neglect to test the person's pelvic floor so they would hook the small intestine to the top of the rectum and expect it to work. THEN when it did not, THEN the docs tested the pelvic floor and would say oh, by the way you have pelvic floor issues. Then they would do PT and Botox and none of it would work. Then the person has the ileostomy. Those that are lucky that works, but the more surgery, the more scarring and some of us scar more than others. Poor Lizzie went down a bad road. Had the ileostomy, stoma did not work, then she had all these internal pouches that did not work, then had redo's then back to the ileo. Now her guts are so scarred in she is on and off feeding tubes and TPN. Sad story. I pray for her nightly and daily.

There is this article called Physiological testing of the colon, rectum and anus by Bruce Orkin, MD. I am pretty sure that is the title. ANd it tells in only 2 pages ALL of the tests that are supposed to be done for constipation before ANY surgery is done. He is at George Washington Univ. Med Center and I think is one of the few colorectal docs who seems to have a handle on this whole constipation thing....the full range of things that could be wrong. MUscles nerves the whole deal. I know there are more docs with this knowledge out there, but he is the only one I have found. Though for me, too, too late. Google his article, I think it is back to being free. At one time they charged 99 cents but that is worth it.

Thanks for the compliment of me being knowledgeable, wish I had known all I know now back when making surgical decision in 2006 or would not have gone the route I went. I even put together my own law suit after the fact. Took me two years to learn the anatomy and integrate all the records, but I did it. I used to be a school teacher and a grant researcher so I was used to doing research, but no patient would think to take two years off and learn how to read radiology scans, or send their scan to pelvic radiologists around the world for rereads, people just don't do that, though in many cases they should. I beat myself up over that endlessly, but patients trust radiologists to read scans correctly and docs to not remove sigmoid colons if when they get in there there is no issue with it. We all trust. Hence the suit. Won't undo anything but will help me pay for my $8,000 per year health insurance now that medicare is dumping me. So, anyone going into any treatment for difficulty with taking a good bowel move, I could tell them what tests they need and how to go about making sure their defecogram scan is correctly read.

There is a young man named Boat on here that may be about your age. He was accepted to medical school but had colonic inertia BUT he even had all the right pelvic floor and rectal tests and transit tests and so on. He was VERY on top of everything! Of course heading into medicine himself, the guy had it all together. Well, they removed his colon, hooked his small intestine to the top of his rectum and he was great for about a week or two. Then he fell into trouble and they are trying PT and he is looking for Botox shot in puborectalis muscle and considering ileostomy. He too just wants to get on with life however it has to be done. I wish he would post as he and you would be able to be good support for each other both being young men and having similar issues.

Anyway, praying for all of us. The ileo is not the end of the world. I got mine then did more travel than I've done in my life time. Not saying it's easy, and I have some other health issues not yet diagnosed with some vertigo, etc, but I am 55. So if you get the ileo you will do OK after you get the hang of the appliances and such. Being young I know it is not an easy decision, but your peers that are worth being friends with will like you whether you have a bag or not, it just becomes part of who you are. Thoughts are with you Kyle. If I sound like a mother I probably am old enough to be your mother. Rosemary

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 7/3/2011 1:03 PM (GMT -6)   
Rosemary,
Thank you for your kind words of advice!  Yes, I did have a vertical incision!  As for boat, I have seen a few of his posts and read them.  It is just soo funny, how all of us, think we are gradually get better each coming day, but yet, have setbacks.  I think the doctor is baffled b/c I had, I guess, an ok, defecography before my surgery; however, I never did have the anal manometry, and the some other tests you mentioned before my surgery.  Also, I just keep wondering why, especially after my 1st hospital stay, why my rectum, narrowed, shut down.  The human body is a complex thing!  Suppositories are just not cutting it anymore; I have to use enemas!  Also, do you know how much luck people have physical therapy or biofeedback?  I feel like I have read several posts on here, like you mentioned, once a person has had surgery, the PT does not work very well, and they have to go for the ileostomy.  I just want to eat and poop normally!  Is that too much to ask?  Like I have said, I am about ready to flat out ask for a temp. ileostomy b/c I just can't keep on getting weaker and weaker; no life; crying!  A couple of my friends are like, no, don't do it; retrain your body, and yes, I want to try, but I want to live as well!  Yes, I will def. look up that article, as I want to some research, and I going to ask several questions at my appt. this Wed.  I need to stop being mr. nice, and be a little more forceful!  I mean I won't be mean; but I got to these things done to get me better!!!!
 
P.S. I know you must be really frustrated about the whole insurance thing right now!  Believe me, I keep on worrying about all my bills, too; with everything I have been through this year!  For one, I did not have the greatest insurance.  Thank god for tests and the procedure I had in Feb.; I got accepted for the financial assistance to help me.  But now, I am trying to live off of COBRA for a few months, even though my insurance, still does not help that much, because I got let go from my job right before my surgery date on June 2nd.  I just try to keep on telling myself that everything will work at the end!  I will keep praying for you! 

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/3/2011 7:51 PM (GMT -6)   
Thanks Kyle. I do not know of anyone who had the Physical Therapy or the botox shot work for their rectal function once they have had surgery. Once one has had surgery, from all I have learned, I think muscles and nerves that control them have been damaged or altered. Scar tissue also plays a huge role in the pelvis.

Physical Therapists and docs with the botox shots mean well, but they are treating people who have had surgeries the same way they would treat someone who never had a surgery and simply had an abnormally tight puborectalis muscle and needed to learn to relax it. Certainly this could happen in SOME post surgical cases, but it did not in mine nor anyone else I have read about.

If you go for the ileostomy, once you exhaust all other possibilities, if I were you I would go for the permanent end ileostomy, not a temporary loop ileostomy.

Here are the reasons:

1. Loop ileo's are harder to cover with the appliance because there is a poop loop and a mucous loop.

2. Loop ileo's are also more apt to form peristomal hernias. this is what happened to Tracy and her doc even said that loops were more apt to form peristomal hernias. That is why she had to have yet more surgery, get the hernia fixed and get the loop made into an end ileo. They also removed her colon and did a tummy tuck. As you know she is having a bad time with complications.

3. Also there is the danger that poop will slide down the wrong end of the loop and end up going to the rectum. This was what my own surgeon said (that is why he did the end ileo on me as we knew mine would be permanent). Also someone on here named Gilda had a loop ileo and the poop slid down the wrong part of the loop and ended up in her rectum. To my knowledge, she did not have any rectal issues so she just pooped it out, but it stung, plus it defeated the purpose of having an ileostomy. She then had to have another surgery and have it converted to an end ileo.

I sounds to me like both you and Boat are going to end up needing permanent end ileostomies just from what I know. There is no M.D. after my name, I am just going by what I have learned and from what others on here have posted. If others know of success from the PT or Botox or have had other experiences I hope they jump in here and provide you with their views or info. BUT, this is the info I have to offer you.

Good luck Wednesday. Bring this info and the article and all your other questions with you. Go in with a list. If possible bring another person with you to serve as an additional pair of ears. You could also send your list of questions ahead to the doc by fax then call and be sure that he will receive them and have time to read them before seeing you. This will give him some lead time as appt times are extremely rushed. It is almost impossible to cover what you need to in 15 minutes. THEN at that the doc is usually double booked. That means he is supposed to be seeing you at the same time he is supposed to be seeing another person. They do put even the best of docs on these ridiculous schedules. Ah, modern american medicine, don't you love it!

Good luck, Rosemary

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 7/5/2011 6:58 AM (GMT -6)   
Thanks Rosemary, getting everything ready for my appt. tomorrow.  I will keep up posted on everything.  Truly am tired of living this way! 

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/5/2011 11:29 AM (GMT -6)   
Hi Kyle,

I was up all night with horrid stomach cramps. NO vomiting, no ileostomy diarrhea, no small bowel obstruction (like I had lots of before my lysis of adhesions and ileostomy needed due to damages of the prior surgery) but SCARED. I faxed my ileo doc my symptoms and am going down for a nap. Stoma output is normal and I can drink and eat though not have much hunger. BUT, it is scary when you have underlying issues to have what most people would likely toss off as a little bug or maybe just a bad gas attack. Did you know that if you ever get the 24-hour stomach flu you have to get IV's or you will dehydrate (if you are colonless or not using your colon). Except for those with slow small intestines, this is the code to live by. Sure hope I'm not even heading for that. Just gas and tired would be fine with me.

Good luck at the appointment. Did you see that Tracy has to have emergency surgery today. I forgot if I saw you on that thread. Think I did now that I remember. That poor girl. I sure hope she ends up OK. She must be really scared. She has a great family. She is a real great person, very carefree, confident, and a real can-do type of person from what I have gathered in our phone conversations. She seemed to be going into this surgery with very little fear, more just like, yeah, let's get this op over with so I can get on with life. I think that is what we are all about. Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2011 12:04 PM (GMT -6)   
Kyle, Let us know how the appt goes. Rosemary

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 7/6/2011 8:26 PM (GMT -6)   
Hi Rosemary,
Just posted on the colon inertia page.  I did come in with a list of questions, and my progress today for him.  Plan is right now to repeat some tests, an upper gi series this Friday with gastrograffin, not barium, so that is good!  Then, July 15th, a repeat defogram, and then 18th, do the anal manometry test, and follow-up with the doctor that day.  They think I really have a problem with my anal sphincter muscles-I guess paradoxical contractions-not contracting and relaxing right.  Really wish I had this test and biofeedback before surgery, so maybe now, I wouldn't be having problems.  Even if everything comes back okay, biofeedback is still key right now.  I am very tired tonight, and I am getting tired of traveling to see the surgeon.  He is 3 hours away for me!  So, I am going to bed now!  Good night!
 
P.S.  How are you feeling?  Are feeling any better?

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2011 9:29 PM (GMT -6)   
Hi Kyle,

Yeah paradoxical sphincter contraction is one thing that CAN be helped with biofeedback. SO maybe this will help. This would be great! Glad you are having the gastrograffin for upper GI as barium for an upper GI can be severely constipating. Not what you want.

I ended up having diversion colitis (the unused colon gives out blood and mucous causing cramping) it is much better today, but I am going to follow up with my surgeon for possible steroid enema treatments as I don't want to go around bleeding rectally and having this get worse or have these spells off and on. Has been a rough few days.

I will look at your other post. Thanks. Have a good night of sleep. Rosemary
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