Jpouch and bleeding ????

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Jackie_0mg
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Date Joined Sep 2011
Total Posts : 427
   Posted 2/12/2012 6:40 PM (GMT -6)   
so last week i started bleeding is that normal?! im extremmly scared until i have my doctors visit im thinking since i still have my rectum so there is potential for the UC to still be there im wondering if the doctor will have me take medicine or do the bag thing again! im preparing my self for the worse which will be the permanate ostomy bag but im hoping its not nessacary and it will be a glitch !
UC for 6 1/2 years
had colon removed Oct.10,2011 a laproscopic incession w/ ileo loop (2 surgeries in 1) , temp. stoma named mr. wiggles. January 23rd 2012 reversal :) birthday jan.25th best present was getting better health!

suebear
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Date Joined Feb 2006
Total Posts : 5409
   Posted 2/12/2012 7:34 PM (GMT -6)   
How is it that you have a jpouch and a rectum? Most jpouchers do not have a rectum but have 2cm of rectal cuff.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

Somedude
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Date Joined Jul 2011
Total Posts : 3393
   Posted 2/12/2012 7:55 PM (GMT -6)   
suebear said...
How is it that you have a jpouch and a rectum? Most jpouchers do not have a rectum but have 2cm of rectal cuff.

Sue


maybe shes bleeding from the cuff, is that possible?

or maybe the stitches...?

Post Edited (Somedude) : 2/12/2012 5:58:38 PM (GMT-7)


Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 2/13/2012 10:19 AM (GMT -6)   
Call the doctor
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

blueglass
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Date Joined Dec 2010
Total Posts : 3073
   Posted 2/13/2012 10:22 AM (GMT -6)   
I second UC wife. See if you can have your surgeon look at it. I would imagine there could be a lot of reasons that are more minor --- no need to jump to a permanent ileo just yet.

But please be careful. You have been doing a lot of things that could tear stitches or healing skin.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/13/2012 10:27 AM (GMT -6)   
Yep, see your doc. What Blue said so true. Any of these surgeries need time to heal no matter what your age. Good luck. Don't ignore this bleed. Sincerely, Rosemary

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 2/13/2012 2:04 PM (GMT -6)   
How much bleeding? I get a tiny bit in the toilet paper from time to time if I strain too hard to go or my skin is really irritated and my surgeon's nurse said not to worry about that but to be more careful not to push too much, etc. if its anything more than that, I would call your doctor ASAP. They will be ever to ask you questions about your symptoms over the phone and either reassure you or get you in to be seen.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Step 2 10/20/2011, Step 3 1/24/12
http://life-takes-guts.blogspot.com/

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 2/13/2012 3:46 PM (GMT -6)   
i called the doctor i guess they are going to monotor the bleeding i say im having half a teaspoon of blood! im worried but maybe its a minor thing.

ddd45
Veteran Member


Date Joined Mar 2009
Total Posts : 569
   Posted 2/14/2012 10:24 AM (GMT -6)   
you could have cuffitis, inflammation of the remaining rectal cuff. It is  treatable with suppositories- hydrocort or canasa. Don't know who you are following  up with post surgery.. but sometimes GI docs are better than the surgeons after the surgery is completed.

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 2/15/2012 2:09 AM (GMT -6)   
someone said i should try Herbs !!?? does that work
UC for 6 1/2 years
had colon removed Oct.10,2011 a laproscopic incession w/ ileo loop (2 surgeries in 1) , temp. stoma named mr. wiggles. January 23rd 2012 reversal :) birthday jan.25th best present was getting better health!

Marsky
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Date Joined Jul 2007
Total Posts : 1955
   Posted 2/15/2012 7:19 AM (GMT -6)   
I promised myself not to respond to your topics Jackie but dang here I am - I'll allow another ostomate to respond about your herbs question. But my fingers are itching for this reply - personally I think you need to pay attention to what your body is telling you - ie, no sex, no zip lining, no dancing, no partying in dance clubs. Take 1 month to heal, still walk - that's always recommended but the above activities IMHO, happened much too soon, after major surgery. At the very least, do you want to risk a hernia? Which would require corrective surgery? Me, I've always avoided more surgery, but at this pace, you are asking for trouble. I'm sorry, I know someone has to say this, so it looks like it's going to be me. As always, I wish you well but promise me you'll think about taking 1 month to cease all of your usual physical activities? Be a post-op-patient, not a wild girl (for now). Okay, I'm done.

I mean all of this in the kindest way possible but in a motherly way, because well I am a mother of two daughters, not much older than you are (21 and 24) and I've survived two major intestinal surgeries.

Post Edited (Marsky) : 2/15/2012 5:25:23 AM (GMT-7)


esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/15/2012 1:53 PM (GMT -6)   
Marsky and Jackie,

Yep, I wanted to say the same thing. I did so in abbreviated form above but Marsky, you really spelled it out nicely. And yes Jackie we mean this in the KINDEST way! We WANT you to be well as you want to be well. It is likely harder for young people to "be post-op patients for a month" than it is for us people who are older than you. But I second Marsky's motion. Take care of you right now Jackie. You have the rest of your life to do all the good things that are open to you. BUT you need to rest now to recover well in order to do them. Make sense?

Best wishes, Rosemary (It's the maternal instinct in me and the former teacher of young people in me making me get into this again; just like Marsky I can't help myself! We care!)

Marsky
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Date Joined Jul 2007
Total Posts : 1955
   Posted 2/15/2012 4:55 PM (GMT -6)   
Thanks Rosemary, not to gang up on you Jackie but on some level I hope it comforts you that we do care and that you have a few extra mothers to go around. We just want the best for you and as Rosemary stated, when you're older it's much easier to heal slowly and not be very active. I know this much be very difficult for you, you sound like the type that doesn't sit still normally and it's probably killing you to rest and take it easy. What I most want to convey is for you to pay attention to what your body is trying to tell you and it's saying - slow down. Time for all that later.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg, twice daily + Probiotic: Renew Life/Ultimate Flora/Critical Care/80 Billion daily

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 2/16/2012 2:46 AM (GMT -6)   
huh i hate when i write something thought i posted it and it doesnt go through lol but ....as i thought i wrote:
thank you i definetly appreciate espicially the mother instinct in you all to know that you all care so much makes me feel some connection :) and MS.Marsky :) dont ever hessitate to say anything wether its good or bad i love all kind of feed back today i did some thinking on why im being so active and i realized during the last surgery i THOUGHT i had a ceziur and i thought i was in the process of dying i was just freaking out really and after that experince i felt like WHOA you just never know and i want to make sure i have a fun adventours life and i know i am an impulsive person (sometimes is not good) but life seems so precious at this point of my life wchich is good this might sound silly but all of the things actions im making now i use to not be able to make sober i NEVER went out dancing unless i was "under the influnce" now im able to make judgementwith a clear mind and have fun!!!!! its been the best felling i have ever had and a lot of people fail to realize that including my mother. im not saying just cus i thought i was going to die im elgible to act out and silly but in a way its an uncounsious thing that makes me act and me simply enjoying it gives me a LOT ofjoy in my heart and i know for myself i need to calm down some but its like my spirit/ soul wont let me im always trying to DO SOMETHING wchich isnt normally like me ...welll it is just not this kind of live in the moment type stuff!!! but i love the honesty and straight fowardness of this website nothings sugarcoated everything comes from real people...ie mothers, people my age, men, women etc. i LOVE it .
thank you marsky and rosemary and in a way i feel like you all are my parents ....rosemary arent you around you 50 or up ???? so i thinkof you as my cyber grandma :] and marsky welcome to the family lol :)))))
UC for 6 1/2 years
had colon removed Oct.10,2011 a laproscopic incession w/ ileo loop (2 surgeries in 1) , temp. stoma named mr. wiggles. January 23rd 2012 reversal :) birthday jan.25th best present was getting better health!

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1955
   Posted 2/16/2012 8:20 AM (GMT -6)   
Well I could be your grandmother too, lol - I'm 56! I had my babies in my 30s, hence why they're just a little older than you are Jackie.

I understand about wanting to live life to the fullest and to do so right away. When you're older and see that huge incision, you ask your surgeon what not to do because you DON'T want another incision!!! He told me what to do and not - ie, don't lift a heavy wheelbarrow full of topsoil. Yes we are homeowners and at one time I was into gardening (window boxes, 10 flats of annuals per summer, adding new landscaped areas in our yard, both my husband and I have planted every single thing in this yard, down to the grass seed). But I am not that person anymore! I do lift things up to 30 lbs but no more than that. I am careful. I have permanent staples somewhere inside me he said. And to be careful. You may not have this risk Jackie.

He also said to never use nautilis (sp?) equipment nor do sit-ups. These types of exercises are out. Once I flattened my stomach and he was shocked, asked me how I did that after feeling my incision areas (have two, the area where my ostomy was located too). He thought he'd find a hernia. I showed him how I flattened my stomach - by sucking it in, 100 times per day. I did these exercises all day long (note to self, I need to do this again, I've put on weight since then and gotten flabby).

But this is here nor there, I asked all of my post-op questions in detail because I didn't want to be an in-patient ever again, unless my cancer returned. I probably pinned down my surgeon more than most of his post-op patients do.

We all handle our post-op days differently I guess.

I just mainly do not want you to risk another surgery Jackie and to take it easier until you are fully healed.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg, twice daily + Probiotic: Renew Life/Ultimate Flora/Critical Care/80 Billion daily

blueglass
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Date Joined Dec 2010
Total Posts : 3073
   Posted 2/16/2012 8:23 AM (GMT -6)   
Jackie, I thing you have a very good insight in there -- you live differently depending on whether you think you have a future or not. The problem is that if you are living as if there isn't much of a future, you also start making that possibility more likely by doing reckless things.

So, I think what the cyber parents and grandparents are saying is that we believe in your future and it hurts us when we see you acting like you don't believe in your own future.

A seizure is a very scary thing, and I can understand how it felt like you were dying. But you know, the quieter stuff can be a way to celebrate life too, if you think of it that way. Isn't it nice to be resting at home instead of in the hospital? To have a calm day instead of a day with a seizure?

Good that you're enjoying life sober.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/16/2012 6:49 PM (GMT -6)   
Marsky,

I need to get one inch only of flab off my stomach so I can go back to my old appliance which I liked better for my ileo stoma. So you are saying that you toned your abs just by pulling in on those muscles throughout the day?

If so I will try it. Rosemary

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 2/16/2012 6:58 PM (GMT -6)   
Jackie,

LOL! OK, yes, I guess I could be your honorary cyber grandma.....I am 56 :-)

Glad you are enjoying life sober. I know exactly what you mean by worrying that you may not have a future and you have to hurry up and do things now or else you won't get to do them. I have been traveling around the world in cruise ships for the past 4 years thinking, maybe I'll die of an adhesion reobstruction and not get to do this (I always was a traveler even before my injury that landed me here in ostomy land).

Well, here it is 4 and a half years later and I'm still here and still traveling. So, with you being so young, I am willing to bet that you have a good long future. And I am very happy for you going sober. That shows how strong you really are!

I'm glad I did all that traveling, but I did not take health risks and did not do it so close to after surgery. It was 8 months before I went on my first of many cruises. So it was our concern that you not do too much so close after surgery. We did not want you to sabotage yourself and set yourself back.

BUT emotionally, I know exactly where you were coming from. My maternal (grandmaternal advice still stands though) :-) Take care of you and rest and relax, put on some good music, get some good TV shows, and put your feet up. Call some friends on the phone and take some short walks on nice days. You will heal soon as you are young and strong. Thanks for your nice response. Rosemary

Marsky
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Date Joined Jul 2007
Total Posts : 1955
   Posted 2/16/2012 7:13 PM (GMT -6)   
Rosemary - that is exactly how I toned my abs. I just sucked in my gut as far as it would go, held it for 10 seconds and then released. I did these in batches, 10 or 15 in a row. Then I'd take a break for an hour or two, I did them in the shower, while walking the dog, while driving. I feel compelled to add I was petrified to eat the wrong foods back then (post-ostomy) so I was eating small meals and 4 to 6 per day. I ate for 12 hours, roughly 7 am to 7 pm, but after 7 pm, all I consumed was water (had probably 3 glasses before bedtime at 11). I gave my insides a 12 hour break from food, why? So I could sleep without needing to use the bathroom! And I ended up getting in better shape, sleeping more soundly and I guess all of this combined did flatten my stomach. But I didn't do any sit ups or pilates type exercises I did years before my surgeries. My surgeon was amazed.

I think now it would take more than just these stomach exercises, I'd have to cut back on sweets. I was a size 6 back then and now between a 10 and 12. Yikes!
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg, twice daily + Probiotic: Renew Life/Ultimate Flora/Critical Care/80 Billion daily

Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3393
   Posted 2/16/2012 7:46 PM (GMT -6)   
So are you still bleeding..did you see the doctor?
DX Ulcerative Colitis (panchocolitis) - May 2011.

"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/16/2012 8:35 PM (GMT -6)   
Marsky,

Wow that is amazing. I will try it. Rosemary

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 2/17/2012 12:36 AM (GMT -6)   
yea somedude i am still bleeding :/ yesterday i freaked out a little because i wipped and the toliet paper was filled with blood!!! when i talked to the doctors nurse she said that he want to wait it out!!! seee if it gets worse ..... my next apt is nextmonth so i guess they want to wait till then. it kinda suxs
UC for 6 1/2 years
had colon removed Oct.10,2011 a laproscopic incession w/ ileo loop (2 surgeries in 1) , temp. stoma named mr. wiggles. January 23rd 2012 reversal :) birthday jan.25th best present was getting better health!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/17/2012 1:25 PM (GMT -6)   
Jackie, If this much bleeding keeps up, I would keep calling the docs office. Any little tear of stitches or whatever that may have occurred during your celebration of being out of the hospital, I would THINK, by now, would have cleared. Keep a calendar with notations about the bleeds, how much, when, and so on. I would not wait a month. They can see you sooner if you insist or maybe have a relative or friend call in for you. There is strength in numbers when dealing with doctors or any business matter. Good luck. Rosemary

ByeByeUC
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Date Joined Feb 2011
Total Posts : 3169
   Posted 2/17/2012 2:05 PM (GMT -6)   
Seems odd to me that your dr.'s office is telling you to "wait it out" when you are bleeding. I would want to get in asap and see what's going on. Bug them to see you sooner.
Marianne

DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery-got my life back! :)

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 2/18/2012 8:37 PM (GMT -6)   
yea im definetly calling on monday because im starting to have pains and before a BM i get EXTREEM pain and its weird cus when it happens at night im sleep and im thinking its just pain and its really me having to use the bathroom YIKES~!!!!!
UC for 6 1/2 years
had colon removed Oct.10,2011 a laproscopic incession w/ ileo loop (2 surgeries in 1) , temp. stoma named mr. wiggles. January 23rd 2012 reversal :) birthday jan.25th best present was getting better health!
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