Colon inertia part 2

Kyle..... i'm reallly praying everything goes well for you from now on!! as i said, i know nothing about those supplements, i never took them. you don't have to eat much, but just to get some boost from those supplements won't hurt. you can try and if any of those give you grief, try a different type. i just want you to be well!! you deserve to finally be well and start living your life. REST and HEAL and keep us posted!

oh no Kyle.... i hate hearing this. but please don't get too discouraged. first, i hope they can figure out the reason why it's happening and are able to fix it. but i just want to say that even if you still need laxatives, that's still ok, as long as they work. some of the girls here who had this surgery for CI and they still need miralax to go. difference is that now after surgery it works great for them, while before surgery it didn't. if laxatives helped me after the colectomy, i wouldn't have gone the ileostomy route, but every lax i tried helped for about 3 weeks and then stopped till nothing helped anymore, so i had no choice, but many of the girls keep taking miralax and they are more than 2 yrs post op and it still works the same for them, they don't have to increase the dose, cuz the small intestine usually doesn't adapt to lax's like the colon does.

good luck! hope everything works out!

actually most of us (if not all of us) with CI also have a pelvic floor dysfunction to some degree. with CI the rectum usually is also affected. but as you know, everyone is different and for some that the pelvic issues are not too bad, the colectomy works fine and for some it doesn't.

yes, the defecography i did before the colectomy was relatively normal, but in my manometry test i couldn't expel the baloon (all 3 manometries). but we have to give it a try with the anastomosis. obviously it didn't work for me. some of the other girls here who's defecography also wasnt perfect and they also couldn't expel the baloon, it works fine for them with miralax. i think the problem with me is that my small intestine is abnormally slow and their small intestine has better motility than mine. but im not sure (why miralax didn't work for me) just my thoughts.

what kind of problems are you having with your staples?

Kyle, ask your dr for a repeated manometry, defecography and a scope to check whether the anastomosis narrowed (but if i'm not mistaken, they've already checked the anastomosis, am i right?) anyways, it's not like those tests are totally accurate. expelling the barium on the defecogram is not the same as what really happens in daily life. i had 4 defecograms and it was always easier to expel the barium than expelling real stools, so from my experience it's not really accurate. the test can demonstrate the internal structure of the rectum and all, but functionally, it doesn't show the reality of what really happens with the real thing in real life. but it's worth it to see whether it's anismus or anything else that can cause problems with defecation.

mean time, try miralax. remeber tho it takes few days to start kicking in. let us know how things progress.

OMG Kyle, what in the world? Please keep us updated. You need to start feeling better!

Kyle - I still have to take Milk of Magnesia every night and only go in the morning.  I'm not feeling like I'm really emptying completely but I still feel better than before the surgery. 

I don't go back to the doctor until 8/8 now because I had to postpone my July appointment.  they scheduled me during my vacation and I'll be out of town.  I'm not really willing to give my vacation time for an appt. unless it gets bad.  I would like to go in sooner but he will be on vacation. 

Keep your chin up -

nanci

Kyle - Hope you're hanging in there alright!
Nanci - when is your next follow-up appointment? I wonder if he will have some more suggestions for you instead of the MOM.

As for me, I still had not heard anything from Duke about my referral for a second opinion, so I contacted my motility dr's office (the doctor who is referring me) and I just got an email back from her assistant that said the doctor would like a "copy of all of my records to review to determine if she can assist" me, and that the records will be reviewed on Monday, and then they would call the assistant back if they "would like to proceed with scheduling".

Is this normal? I was already stressed out about this to begin with but now I have to wait to see if they will even SEE me. But does this mean that if they do decide they can "Assist" me, then it likely means they would do the surgery for me? I mean, it's a colorectal surgeon, they wouldn't say they could help me, just to have me go all the way there and then say, Oh...no, I don't want to do the surgery on you. Right?

I have just been feeling SO terrible for the past month or so. Every day that goes by just makes me more frustrated and I just want to get my second opinion and have a plan, I am just exhausted.

I'm not sure if yo have heard, but I think Kyle is back in the hospital.  I received a text from him last night stating that his bottom wasn't working and he was burping a lot so he went back in. 

 

I haven't heard again (I don't have a texting plan so I didn't reply). 

 

I also talked to my doctor because I am still only going with the MOM.  I take it at night and go in the morning.  I also added prune juice in the day and it makes my stomach very loud but that's about it.  I'll continue drinking it and hope it begins to make a difference.  I just got home from Cape Cod about twenty minutes ago (almost midnight now).  Anyway, I told my doctor about not going more than the once from the MOM.  I also told him about the uncontrollable burping (just happens without warning) and not passing gas.  He said continue the MOM and try and deal with it as long as possible.  Hodaya, you already know the last option and I'm not ready for that yet.  For that reason I will deal with this for as long as I can before taking that final route.  He said when I see him in August (8/8) we can discuss seeing the physical therapist if the problem continues. 

 

I am scheduled for my back-to-work physical (drug test) tomorrow and pending results, return to work next Friday (7/1).

 

Well, time for my MOM. 

 

xoxo

Thanks Hodaya - It was cold and rainy for two of the three days but the first day was beautiful. It's been unusually cold and rainy here in the New England(the very most northeastern US states) states. Hopefully this week will be better so we aren't cooped up in the house. This week Ron installed kitchen cabinets - alone since they were too heavy for me. We also had a new roof put on since the old one is nearly as old as me and in very bad shape. Fortunately we had put away money (and already paid for some) before we knew about the surgery or else we'd be putting everything off and risking damage to the house - the roof was so bad and missing a lot of shingles.

When I spoke with the doctor on Thursday he reminded me that when we discussed the surgery he told me that it was not a miracle surgery and that there are still people who have problems afterward and have to go on for further surgery or have to just deal with it by taking MOM or miralax. He said if my rectum is still not working at it's best that it will still be a problem. He told me that he could send me to the physical therapist if it's still a problem in August. I know the problems are the same as Kyle's.

I have only been drinking about 4 oz. at a time (twice daily) and MOM at night. I'll add a scoop of miralax in the morning to see how it goes but I don't want to do it all at once. I am also going to start a food journal to see if I can tell what any gas causing foods may be. I can't think of any foods that are typically gassy but who knows...

Lot's of thunder and lighting right now - feels like it's rocking the house. elisabeth has a party to go to starting with mini-golf in the dark (neon or somethng-indoors luckily) then to the ice cream then sleepover at the friend's house. We had the long drive (2.5 hrs) to pick up Haley with a 2 hr. ceremony then a 2.5 hour drive home. This was a leadership camp to do with politics and government so it wasn't a regular summer camp. I am glad I can sit or stand at work because there was way too much sitting for me.

Hodaya, I hope your sister's (and family) visit is going well.

Have a great day!

MARY - great to finally catch up with you on the phone - remember, any other questions, call or e-mail.

Kyle

I posted in the thread where you asked about miralax....just wanted to say that you may have to give the miralax a few days to kick in...don't get discouraged if you don't go right away. Also, if you need to do enemas, empty the fleet out of the little bottle and just use warm water. I do that if I need instant relief. Sounds like we all have the same rectal issues...it really is a pain in the butt!!!

I hope the miralax works.....

Hugs,
Janie

Kyle - yes, I am dealing with the same issues as you are.  I took Gas-X for the first time yesterday because I couldn't stop the (unwelcome and usually without warning) burping.  It comes like a huge hiccup-belch.  I always thought my grandmother was being rude because she does it (she's almost 90 and she says she can do anything in her house).  She had colon cancer and hd about 18" removed from her colon.  This was nearly ten years ago and she is still doing it.  She told me her doctor said she needs to let it out that way to avoid built up gas.  So, I guess if it has happened to her for ten years, there may not be a quick, easy answer. 

 

I am taking 2 TBSP of Milk of Magnesia at night and go in the morning and sometimes in the middle of the night (around 2am).  In the morning, a scoop of Miralax in my coffee.  There is no taste and it doesn't bother me.  I've added about 8oz. of prune juice around lunch and sometimes another around dinner.  If you don't like it, don't sip - drink it all at once.  It seems to have made a difference and I often have a bm in the afternoon and if I'm lucky, another one in the evening.  This was just yesterday that I started going after adding the miralax and the juice.  It was the first day I felt like I was starting to feel a little better. 

 

My doctor said deal with it, or else...  I really don't want an ileostomy so I am making it work with the addition of the things mentioned above.  I rarely pass gas from below, just burping.  I am afraid I'll be doing that at work.  They just happen, even if I am talking and they just happen without warning. 

 

My doctor also reminded me that this was not a miracle surgery and there was always the possibility of a dysfunctional rectum.  He also recommended the physical therapy ( I had a vision of lifting weights with my butt - lol) if this persists when I see him in August.  He did tell me that the surgery doesn't always fix it 100%.  Keep in mind, this didn't happen overnight and we can't expect it to be perfect overnight. 

 

I wish I had better news for you or better options but as anyone on here who has had the surgery has mentioned, we still have issues.  Have you tried Reglan?  It's a motility drug that I had through my PICC but also a pill prescription that I took for my first two weeks at home.  It's for motility - assists with the peristalsis and also helps with nausea.  Maybe ask him about it. 

 

Hodaya, Thanks for the weather wish.  We are going to have a car full this time - my girls and one friend and the cats (in a carrier), plus my husband.  Poor guy with all girls in the car.  Sunshine here tomorrow for the first time in ages.  I think it has been cold and rainy fo about 80% of the days since I went off work mid-may. 

 

All of you have a great day! 

 

nanci

Good morning,

It killed me all day yesterday.  I could not get on the internet.  We had nasty, nasty storms on Sat. night, that caused a power outage for awhile, then the cable and internet was down all day yesterday.  During the middle of the night, I thought lightining was going to come through the house and strike me on my bed.  The thunder and lightening was horrible!

Thanks for all your suggestions everyone!  Yesterday, I wasn't too proud of it b/c yes, I am like, geesh, I thought I would not be wanting laxatives after this procedure, I picked up suppositories, enemas, and more miralax.  Yesterday I had to used a suppository a couple times to relieve the pressure in my rectum because I had to go potty, but couldn't get it out.  At one point yesterday, I concentrated real hard standing up thinking about a bowel movement and fart, and then let out a small stool.  Better than nothing!

Also, I started my miralax Sat. night.  I drank a dose Sat. night, Sun morning, and last night.  I mixed it with some my fav. kool-aid crystal light to give it some flavor after breakfast and before bed.  Last night, I noticed I leaked a little stool in my underwear (whoops!).  I though about it in the middle of the night I had to go, but I wasn't sure.  However, I have woke up here this morning and moved a little bit, then I did let a stool by myself.  I still feel a little rumbling right now, prob. could let out some more, but I was proud of myself for doing that much this morning.  I am still a few days, and like you said Nanci, I can't expect miracles over night.  I just wish I could!!! 

I did right away keep track of things I am eating again Sat. night, laxatives I use, and how I am doing with my progress to report to the doctor any changes in my behavior.  Also, I really do what to keep track of that food right now b/c I just know Sat. night something was not right with about ready to puke up my supper.  Heartburn is still an issue, but yesterday it was not as bad as it had been in a few days.  I just hope all these things are temporarily, and I will get over it.  My body has been through a lot this month.  All the hospital stays, 2 surgeries in a weeks time.  My poor tummy!!!!  So, everyone, let's hope for the best that I will overcome everything, and things won't get soo bad that I still can't manage that I would need an ileostomy.  I know that wouldn't be the end of the world, but I really don't want to go through another surgery either. 

Hodaya, loved your story about the gas.  I know it wasn't good you were in the er, but I noticed that one day last week after I drank some juice.  I felt horrible.  It is sad though b/c I have always enjoyed some of those fibrous foods and whole grains, but I don't eat them, and haven't for awhile just due to CI and now just because of surgery.  We did buy some vegetables yesterday, but it was cooked, frozen carrots, on the approved list.  I can tell you one vegetable that does sound horrible to me right now is broccoli, just thought of all that gas in me; I could feel myself explode.  Plus, right now, when I am having problems trying to get farts still out right now. 

I love all ya guys, and let's keep praying that each and everyday will get a little better, and a little better.  My goals this week, keep up with the miralax, try to walk a little more and do things.  Not over-exert myself, do something, take a break or little nap, do something again to gain some strength back and start some movement out of my bottom. 

Hodaya, thanks for the words of encouragement. You are right, I just need to be patient. It's Monday...according to the email the surgeon should be looking over my records today and then she will contact my doctor's office if they decide to proceed with scheduling. I am anxious today, just hoping they decide to take my case. I mean, it's not like I'm a totally off the wall or difficult case and I've already been offered surgery at the neighboring major teaching hospital. So I am hoping they will decide to help me. I have already decided on and made my peace with surgery, just want to find a place and a surgeon I am comfortable with and get on with it, so I can feel better and have some kind of a life again.

I am going out of town this weekend and I've been stressing out and trying to plan which laxatives to take and when/how to take them. I hope someday I can go on vacation and actually ENJOY the vacation!