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Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 15
11/01/2018 8:48 am  

Hey all,

 

Need a bit of a rant/moan/feeling sorry for myself moment.

I'm waiting on a call back from my GI nurse as still having rectal bleeding from my stump after my colectomy in October. I've been on pred, both oral and in suppository form and it's not making a difference at all. She's away to speak to the consultant about what to do next and I'm feeling a bit hopeless, like I've gone through all this to still be on medication and still having symptoms! I just want my rectum taken away so I can get on with my life! Ahhhhh! 


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john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
11/01/2018 8:53 am  

Hi Michelle, you just pop up as a was on a lunch break, when you say bleeding? is it a lot and is it causing pain.

ileostomy 31st August 1994 for Crohns


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Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 15
11/01/2018 9:04 am  

Hi John

It happens when I feel the urge to go to the toilet, about twice a day and I'd say it's a sensation of pressure rather than pain, if you get what I mean. It's quite a lot each time as well, about twice a day. I had a scope before Christmas which still showed active inflammation.


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john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
11/01/2018 9:18 am  

Michelle, the last part of yer plumbing will still be trying to do the job it once did. Some blood and a clear liquid which every one has to help a bowel movement. Now I can only give you my experience as help and as an example. Mine did the same thing when I had my ostomy and it settled down after a few months, and even today it will still from time to time do it. I still have mine in place and may be some day it will have to go but am in good health so far. Removing it is no small operation as any one on here will tell you. I would have no right to say "ah don,t bother let it stay" but my example is just to give you peace of mind. you have been through illness and recovering well. let each part settle before doing any more

ileostomy 31st August 1994 for Crohns


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VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 865
11/01/2018 9:44 am  
Posted by: Michelle

I just want my rectum taken away so I can get on with my life! Ahhhhh! 

I feel your frustration! I had my rectal stump for months after my colectomy and it was a bother. 

Is the plan to have it removed or did your surgeon want to leave it in? 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 15
11/01/2018 10:19 am  

Thanks for the replies John and Eric!

John I'd be quite happy for it to be left if it was behaving! Glad yours is though, and long may it continue!

Eric, it's just so annoying, all that surgery just for you still to be symptomatic!

Not long after my last post my GI nurse called me back, she managed to catch the GI consultant and the surgeon who deals with that and they want me to taper off pred and I'm being referred to see the surgeon. The plan was initially to leave it in place and see if it settled, but with the amount of inflammation and my non-responsiveness to medication that's looking less likely. After surgery I had really low haemoglobin and was put on iron and I'm getting my blood levels done on Monday, so we shall see if this constant bleeding has impacted on that at all, and I'm assuming that will be a concern if my haemoglobin levels haven't improved.

Frustration was exactly the feeling I had earlier! But I realise the nurse couldn't nail her colours to the mast without speaking to the consultant first. Now I feel like I've been listened too, and even though I do feel it's what is needed, it's still a lot to get my head round. 


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Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 15
11/01/2018 10:20 am  

It's never been a clear liquid that's passed either, always blood 🙄


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Robert
(@njewell1)
Reputable Member
Joined:4 months  ago
Posts: 494
11/01/2018 12:04 pm  

Good Morning Michelle . I can relate to what you are having going on . I had my surgery 16 months ago and I am still having some blood with the discharge about twice a week . Doc has me doing some enema's (Mesalamine) . I am not sure how long ago you had your surgery but like John n Eric say don't rush into another one to soon it would be a major surgery again and always a shock to your body . Maybe getting slowed down or off the Pred will help . Its all just my opinion and from a little of my experience . I am no Doc and still new myself . Hang in there ......

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
11/01/2018 12:46 pm  

Remember Michelle you are the "Bionic Mum"!!

ileostomy 31st August 1994 for Crohns


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Marcie
(@shulmjs)
Noble Member
Joined:4 months  ago
Posts: 1023
11/01/2018 1:16 pm  

Dearest Michelle, I do not have your issues.. (thankfully) from what I read here.. So I cant say I understand this.. (I hate it when people say they do and really don't)  I, as well as others, can give you our ear.. Go ahead and let it out to us.. We ALL know frustrations.. One way or the other.. I had mush horrible issues while in the hospital for 6 months etc.  I learned the full meaning of a word that we all use .. Patience -------  This word really means to me "I don't have control.." Things will get better up to a point and THEN I have to make adjustments = hard areas of MY life's of acceptance. I know it is a hard go--but, can you look back to an area of the reason why you had this surgery?  How better you are now?  If so, This word is already with you. Now, use this word and its meanings for the future process.  You have already RUNG their (doctors) bells.. And keep ringing if u want.. (personally, I have my own private buzzer-they hear me a lot  :-)    ) -Your still new after this operation.. I drained a bit for 7 months.. Yes, I saw a red flag.. But to the Doctors, it was not a red flag to them.. They forgot to tell me this is normal.. I called much--so do the same if that makes you feel better--Doctors THINK that you have been given the material to read-not so !!  shame as it is - it is true.. We are left alone with a stoma and what ever comes up-- that word is fear..... and they gave that word to me/us. But we have Eric, and our new found family-- Thank God!! :-)

Now get a book, I am reading " my mothers Keeper" by her daughter Barbara__?_Davis.  Kinda funny......and you can put this type of book down when your kids come home or in need of your attentions. I take it to infusions all week.. Enjoy-- Best Always, Marcie..  :-)

 

Edited: 2 weeks  ago

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 15
11/01/2018 5:35 pm  

Thanks so much for your replies! I've went away, had a cry and took my girls out for dinner as I think I deserved not to cook tonight! 

Haha John, the Bionic Mum who ate pickled gherkins without thinking tonight, let's see how that goes 😂

 

Thanks for sharing that Robert, believe it or not it's so helpful hearing other people's experiences as I don't feel as alone. My bleeding is daily and once or twice a day and disease is still active there. I've been given different suppositories to just keep it at bay until surgery so will see how that goes.

Haha Marcie, unfortunately patience is not one of my virtues! What you say is so so true though and thank you for your words of encouragement. The nurses and doctors know me very well! Funny you should mention that book as well, I've just finished watching a series about Bette Davis and Joan Crawford while they filmed Baby Jane, very interesting! I shall give the book a go, thank you! 


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john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
11/01/2018 5:39 pm  

God speed little gherkin !!! lol

ileostomy 31st August 1994 for Crohns


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Zvitusk
(@zvitusk)
Estimable Member
Joined:9 months  ago
Posts: 216
11/01/2018 11:28 pm  

Just to put my worthless two cents into the forum,  I am helpless and frustrated that I can not help you. I don't even understand what the problem is. Having reread the posts,  my thinking is that you have a stump of a rectum that is scaring you sh#tless. Part of the fear is that you are leaking red fluids . Also your rectum keeps trying to empty out. This freaks you out.

I'm scared too for you. The doctors are not helpful. Either they are "thick" and calloused or are just not sensitive to you and your anxieties. Worse, they aren't getting you relief from your symptoms.  

Have I missed anything? 

If I got the main issues covered , then if it was happening to me , i would approach the problem by taking the following steps. 

1. Education.  I would study my situation until I was knowledgeable about it.

2. I would search for a solution that satisfied me. This means that I would send my files to experts in other areas. I would ask exact pointed questions.  

3. I would take my new knowledge and go back to my doctors and "guide " them to instituting the solutions that you discovered. 

Remember that the doctor is your employee and you can FIRE him if you lose confidence in his abilities. 

Anyway,  that's how I would approach the situation. 

P.s. I  have actually fired doctors and nurses.  Ya gotta be tuff! Ain't no body gonna stand up for you if you won't stand up for yourself. 

I hope this was a little bit helpful. 


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john68
(@john68)
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Joined:4 months  ago
Posts: 698
12/01/2018 6:59 am  

Some ostomates will be left with their "stump" the  last part of their rectum. in surgery is may be left and not removed with the rest of the colon as the patient was to weak and was thought best to be done another time, or that it would be part of a reconnection if that was possible or that their was no need to remove. For many/some it give no trouble(may pass a little blood or liquid) and then again later down the road some have it removed. Probably not the best description Zvitusk but hope it gives you an idea

ileostomy 31st August 1994 for Crohns


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Marcie
(@shulmjs)
Noble Member
Joined:4 months  ago
Posts: 1023
12/01/2018 2:16 pm  

My "Z"and John, I have to agree with you both.  My colon is totally gone--still have my rectum..  I have no problems.. But I did have some leaks..  After.. Yes, Michelle, I was scared and was NOT informed of this.. Yes, I though they forgot something.. But I healed after time.  This is an confusing issue and some issues after this surgery.  Now I said SOME Issues.. I think your waiting for the other shoe to drop--don't go there..  I did and some others. Not worth the stress.  I personally, became sick as of STRESS.... from my lives adventures.. THis is my outcome.. O.C. strangulations etc. read my post re: my name. You don't need any more stress upon yourself.. Acceptance is first and resting.. You have to take time out for yourself.. I know your all confused.. But you have us..  I along with others did not have these wonderful people and Eric.. for over 3 years. We are together as a family with these issues.. some worse than others.. I don't like it any better than you do.. But Nellie is part of me and She comes with me everyplace I go.. She sings during Thanksgiving grace.......  I don't care.. Just smile..... and I just say Nellie wants to pray too. :-) If your scared of going out? I have ideas to help you for emptying is needed.. --- "Z"is right, get educated, read us that are going or went through what your dealing or feeling now.. His steps are in PERFECT line.... WE surived you will also-- Now go get that book ?my mothers keeper" and enjoy........ Best. Marcie. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
(@shulmjs)
Noble Member
Joined:4 months  ago
Posts: 1023
12/01/2018 6:41 pm  

John, "STUMP" I am confused by many that complain of this--Does the "STUMP" hang out and that is what is giving people problems? 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Linda Knelsen
(@dlkfiretruck)
Eminent Member
Joined:5 months  ago
Posts: 38
12/01/2018 11:06 pm  

Kind of glad this topic is still open.....not the stump name, but the rectal issues.  I still have mine.  However, I also have a bladder disease that causes extreme inflamation in the bladder and thus scarring.  One of the medications for the bladder disease,  called Interstitial Cystitus,  is a suppository called Opium and Beladonna.  I am so greatful that I still have my rectum as it would be almost impossible to use the suppitories.   I refer to as  a bullet.  The bullet also helps with spasms.  NOW...does anyone here ever get rectal spasms???  I really need to know.  I realize this is kind of  bottom of the earth conversation, but it is a reality that we all deal with, having the rectum or not having the rectum.  Mine also has output and it is a great thing to have if you have to use a soppositiry.  The remaining ,  I think it is a wax, that is not absorbed into the system  of the bullet, has to eventually come out of you.   I get the nudge from mother earth when I have to release the wax .  My first experience with rectal output was when I was running down the road after my run-away puppy.  Those little things have four legs and two more then I and recovering from my 41st. operstion let me know just how exhausted I was that day.  Not all the surgeries were for bowel, only 7 at that point had been and when I grauduated to the ileostomy believe me I was so very greatful I cried for joy.  I love this thing and the way it works and that we can live with this stump, rectum and bag issues.  I  just love Erics sight and forever sing his praises.  He has a wonderful  job to do and he does it well.  I never knew I was applying  the wrong way  for Disability Tax credit until he talked about it and how I was doing it wrong.   I am in the middle of doing the forms and will never leave my doctor alone with them again.  He does not live with me and does not understand how this  affects my whole life, every minuet, second  milisecond!

Anyways.  I am a retired Geriatric nurse,  I am also a senior...I think, tho I do not always feel like it.  Thank God for that.  I was awarded my Stoma after being constantly constipated or worse since I was 10...ten years old.  I thought it was normal to sleep on the toilet!  I was actually passing out from pain!  My husband straightened me out on that.  He was a proud pooper to say the least.  I say was, because I am a widow.  Imagine my shock when I outlived him!  I have always dealt with  severe bowel pain and still do most days.  I am facing another very possible surgey.  Yikes, how much can one human take???  

I think I should say what my bowel does that causes me these issues.  It shrinks very badly here and there and when ever it wants in some places and it does not unshrink.  Causing blockages, severe pain, and diahrea.  Am I having fun yet?   I will be 60 this Feb. and for a gift to myself I am going to rent a boat and driver and go water skiing once again.  I was good at it,  trick skis,  slolemn the whole  depth of the lake.  Loved it,  lived it and am still planning to.   Here is hoping I can still get out of the water with my tummy in tow.   

Thank you all for your time.

Linda


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john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
13/01/2018 5:31 am  

Hi Linda, First its so good to hear that you except and love your ostomy. I love mine cause it is my saving grace. The kick from living life far out weights any down side. Getting spasms, for me yes! out of the blue I will get one and it can last any where between 2-10 seconds. other than a little output from my rectum it gives me no bother. I will say we have to be aware that it can and may cause problems and do not over look so keep an eye on things!! you called yerself a senior and turning 60!! yer only getting going. the 59 years where only a good run at getting started. As they say round these parts "More power te yer wee back wheel" lol

ileostomy 31st August 1994 for Crohns


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Tony H
(@tony-h)
Estimable Member
Joined:10 months  ago
Posts: 131
13/01/2018 3:11 pm  
Posted by: Marcie

John, "STUMP" I am confused by many that complain of this--Does the "STUMP" hang out and that is what is giving people problems? 

hey Marcie the "stump" is whats left after a colectomy ie after they remove the colon as they did in my case , they leave your rectum and a few inches of the colon , the remaining colon that is still connected to the colon is often referred to as the stump ,

 

 


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Tony H
(@tony-h)
Estimable Member
Joined:10 months  ago
Posts: 131
13/01/2018 3:18 pm  

hey Michelle , I had a colectomy in Oct 2016 and it took a while for my stump to settle down , its still early days for you so don't give up hope yet , 

what helped mine to settle down was a product called colifoam , and I also used pentasa  suppositories and after a few months the bleeding was under control , I still have to take them every few days to keep it under control and I get yearly colonostomys on the stump and rectum and samples taken to make sure nothing nasty is happening ,

hope your stump settles down soon .


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