I don't know if I should cuss or cry!

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run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 5/2/2011 2:44 PM (GMT -6)   
Oh, you guys...will it always be like this? I just want a window of a few weeks...heck, a few days...where I don't think about my body's waste removal system. The latest saga:

about 10 days or so (give or take, didn't really keep track) I got this urge to have a BM "the old fashioned way." I've heard it can be normal to pass some mucus, so I sat on the toilet and did pass two small solid bits of "stuff" (kind of white-ish looking clumps). There were a couple drops of blood in the water and some on the paper. I thought, "Hmm...that's weird." and went on about my business. about three days later, I felt that same type of urge, so back to the toilet. This time there was more blood than before and a large clump/ball of "stuff" came out...almost the color of stool but more like silly putty colored. Today this happened again with even more blood and another ball of the putty colored stuff.

Now, I know about how stool can sneak down that small opening with a loop ileo and all of that....but my rectal stump was brought forward and stitched to the end of my incision (as I understand it) so it's not connected to anything. I also understand that the stump can be making mucus which needs to come out at some point. I think the solid stuff I'm passing is that, as I've read it can dry up and harden into a ball. My concern though is that this increasing blood means that UC is acting up in what is left of my rectum. It is freaking me out, big time. (Disclaimer: I did put a call in to my surgeon's nurse to ask her about this, waiting for a call back...probably won't hear from her until tomorrow I'm guessing) Does anyone know what this means in terms of my hopes of a future j-pouch? If this is a UC flare up, does that mean I can't get a pouch later? Also, if this is a flare up, will it keep getting worse? Right now there is no urgency or pain to speak of, so if this is all it will be I can live with it until my next surgery. Any idea what they would have me do to treat it if it is something that will progressively get worse?

Obviously I will be discussing all of this with them when I go for my follow up on Monday. I'm just extremely upset right now. I would even go so far as to say I feel traumatized. I didn't go through all of this just to be dealing with a flare up six weeks later. I am so scared and angry and I just want to cry. I don't have anywhere else to discuss it (not even my blog!) because I know there are people in my family (like my mother!!!) who are just waiting for something to go wrong so they can say "I told you not to do this!" Ugh, this sucks! Someone talk me down and tell me this is going to be ok! cry

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 5/2/2011 2:57 PM (GMT -6)   
It's going to be OK. I really can't speak to the details at all, except to tell you to call your doctor, which you already did.

I completely flipped out a few days ago due to an accident with the pouch, at a very bad time. I know this is different, but I wonder if it's similar emotionally, in that we had our surgeries a few weeks apart, things were mostly going well, and then a setback is making it seem like everything was a mistake. I suspect this is a very normal part of the process in recovering from surgery/adjusting to the body changes.

I'm so sorry that you have to hide this from family members ... I keep a blog too (on carepage, so it's invitation only), and I sometimes have to censor since all kinds of family members and coworkers read it. It must be terrible feeling like people are ready to pounce on you. Regrets are normal for any big decision.... even if you move to another city or take a new job..... much less change your body so substantially. Let yourself cry, might help.

I know enough about j pouches, but even if you couldn't get one, you'd get a permanent ileo, and it would be OK.... not your first choice, lots of grief I'm sure, but not the end of the world either. And UC flares would end.

You've got excellent doctors .... very likely they've seen this, and if not, they'll be very interested and you'll get a lot of attention....

I hope something in here is helpful. Hang in. Thinking of you.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 5/2/2011 6:02 PM (GMT -6)   
run4pancakes - Rachel had quite a bit of output from the distal stump both rectally and through the drain at the base of her incision. The drain in the incision is there for that reason. We were told that it was very rare for it to flare though it was possible. Rachel had what looked like blood coming through the drain in her incision and also would have an urge to go to the bathroom and it would come out then, but her stoma nurse said it was really stool. This started to happen frequently about a month or so after her first surgery. Not sure how you are set up as Rachel told me you have a loop ileo. She had an end ileo the first time around and the distal stump was sewn to the bottom of her incision where the drain was and it was still connected to the rectum. They sew the distal stump in place so they can find everything when they go in for the second surgery.This time around she has a loop ileo, the stump has been removed along with the rectum and the j-pouch was formed and everything is hooked up to the rectal cuff. I wouldn't worry too much but yes, put in a call and talk to your doc.

Wish I could say that Rachel is doing well but she is 12 days out from surgery and still nauseous and not eating much at all. She's lost a lot of weight and is so weak that she is having a bit of trouble walking and is spending her days lying down. I talked to her surgeon today after our home health nurse called Cleveland to tell them that Rachel is not moving forward in her healing. He wants us to come back to Cleveland by Thursday if she doesn't start to improve. He took her off of vicodin thinking that maybe it is what is causing the nausea. Hope he's right and things start to improve.

Relax for now - I don't think there's a problem. I imagine your stump is acting up and draining just like Rachel's did. Hang in there.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/2/2011 6:13 PM (GMT -6)   
run4pancakes...take a deep breath scool Rachel's Mom said it well and I hope suebear will be along to calm your fears.

Although I don't have first hand j-pouch knowledge, it does sound normal, based on what other j-pouchers have mentioned to me.

Don't let your mother's inability to accept your decision (at this point) get you down...unfortunately, those who have never lived a day with an IBD really don't have a clue why we choose surgery!

This is a temporary situation so please don't let it get you down. You WILL get through this and just think of how AWESOME your first run will be post step 3!!!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/2/2011 6:44 PM (GMT -6)   
Thank you to all of you! I am much calmer now. Things will be ok no matter what. I mean, my "worst case" is for some reason I can't do the pouch and I get a permanent end ileo. I know that I can live with that and live very well!

Lynn: I hope Rachel doesn't have to go back to Cleveland. :-( If she does and is there on Monday, I would love to stop up and see her. I have my follow up appt that day. Hopefully there won't be an opportunity for a visit though because it means she has turned the corner. Is she able to eat anything at all? Poor thing has been through so much. Please let her know I am thinking of her.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 5/2/2011 7:28 PM (GMT -6)   
I agree you need to discuss this with your doctor. I understand your concern. I had myself worried sick until J had his second opinion at Cleveland Clinic.

J has a permanent ileo and has mucus often as well as bloody discharge every few weeks or so for a few days. Doc at Cleveland told me not to worry about it unless he acted like he was having discomfort. So every time I change his diaper and see some blood. I tell myself "The doc at Cleveland said not to worry about it". He said, at least in J's case, that normally the UC "burns" itself out. The blood is irritation due to the remaining colon/rectum not getting any nurishment from stool going through it.

Hang in there :)
22 year old developmentally delayed son with ileo since 2008
Dx'd with UC 2007

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/2/2011 7:33 PM (GMT -6)   
Definitely normal. And this will not impact future surgeries! When your rectal stump is removed your problems will go away;if it is UC that's causing it. It is normal with a temp ileo to not only have bowel movements but to also see blood but blood doesn't necessarily mean UC. There's gunk left over from surgery coming out. Don't panic but do talk with your surgeon's nurse to calm your fears.

Sue

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/2/2011 8:02 PM (GMT -6)   
Sorry to hear that Rachel is having a hard time, hope she gets better soon. Glad you're feeling better run4, and so wonderful that so many people with info responded so soon.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/2/2011 8:37 PM (GMT -6)   
Feels like a life time ago for me even though its only been 2 years since I had my ileo done then rectum removed 3 months later, I do however remember losing quite a bit from the rectum too and was completely normal. I also felt the urgency to go and stressed about that as well but it is completely normal. A J-Pouch wasn't for me so I have the perm ileo and am very happy with it. Keep us posted on how your going and take care
Doreen

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/3/2011 6:15 AM (GMT -6)   
Thank you again for the additional responses. I wish none of us had to be here, but I love this place and all the help that we are able to give each other.

Just for a positive note: when I did my change last night, my skin around my stoma was 99% perfect! I've been struggling with this a bit due to the position of my opening, but I evidently have the set up right at last. I hope this holds up!
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/3/2011 8:51 AM (GMT -6)   
Yay! Nurse says I'm normal. She said not to worry unless it's large amounts of blood clots. Feeling relieved.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/3/2011 9:18 AM (GMT -6)   
Excellent!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 5/3/2011 12:13 PM (GMT -6)   

Glad everything's okay and you have some peace of mind now, run4pancakes.

I hate to say it but I'm typing this from Rachel's room on H50. I emailed her doc last night when her fever spiked again. She was super weak last night - has barely eaten for two weeks and the nausea was taking its toll. He told us to drive out this morning (5 1/2 hours - no fun for her and why the heck does it always rain or snow?) and we got her directly admitted - a bed was waiting. They have her on fluids now and will get her on some anti-nausea drugs for starters. They want her to try to eat but she's so turned off of food right now. If that doesn't work then we probably are looking at TPN or naso-gastric - definitely don't want to go that route. She did TPN two years ago for two months and got sepsis in her PICC line. It would be totally for the best if we can get her taking food by mouth. We appreciate all the good thoughts you can muster and send her way.


run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/3/2011 2:37 PM (GMT -6)   
I am so sorry to hear she had to go back. Though, if things are that rough it's best to be there where you guys have the support, resources, and treatment she needs. I saw your post on the other thread about her room number, etc. Hopefully you are long gone by then, but if not I will pop by on Monday for sure. I will definitely keep you and Rachel both in my thoughts. She deserves to catch a break! Make sure you are taking care of yourself as well and keep us posted.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 5/3/2011 7:18 PM (GMT -6)   
She saw her surgeon and he found that her j-pouch has come unsutured from the rectal cuff in one area so she is having minor surgery tomorrow afternoon. Surgeon said this may have caused the problems she was having. They put her on antibiotics, nausea and pain meds. We will be here 3 to 4 days post surgery - I'm not rushing home this time. I want to make sure she's doing okay. I'll let you know if we are still here Monday but I hope not! It would be nice to meet you though. We both read your blog and appreciate that you put it all out there.

And glad you can relax a bit now. One day at a time! Glad we all have each other's support. It makes it a lot less scary and lonely.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 5/4/2011 8:14 AM (GMT -6)   
Pancakes, so sorry you were so stressed. I am glad all is normal. Good luck at your check back. Let us know how it goes.

Rachael's mom--I am sorry she is not doing well. Sending prayers for an easy surgery and hopefully this will solve her problems.

You're both in my thoughts and prayers.

Karen
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.
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