Ileostomy surgery tomorrow - relieved, excited and a little intrigued!!

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

You're welcome (it's Misty) and the recovery process was sooo hard for me! Because my body needed to keep up with my brain, and it simply DIDNT. Grrrrrr. Extremely frustrating! Then you have a day where you feel good, do too much, and back you go. That is why we say take it easy. :redface:

I managed a nice parastomal hernia for my impatience. And even after one surgery for it, it didnt work. I'll need to move my stoma and have a major op to try to fix it properly. Soo....take it easy!??
:kiss:
 
Thanks Misty!
I get tricked by that sense of feeling great - doing too much - then paying the price later. I have done that ever since I was diagnosed. I think I have finally learnt to pace myself - at least I am trying to do it properly this time! This whole process has been so mentally draining - psychologically - I can't go backwards.
This forum has been great at helping me develop these skills. Without it - I honestly think I'd be a bit of a mess.
Of course I am using this "pacing myself" business to pretty much take the whole day off today to watch the superbowl!! How convenient!! Lol
 
Yeah, I know!! I have a distinct sense of abject failure with this disease. I cant shake it. I want to, but I cant. After surgery especially. But this will pass and you will be back to full strength. (I say it will pass for YOU, I'm too old now and things are different)

I'm having to record the Super Bowl...as off to bed soon. But while I was trying to recover, I got maybe an hours sleep a night and could watch it. I was born and raised in the USA, so I miss that Super Bowl party!
 
I've been daydreaming about a big pile of buffalo wings to munch on.
That ain't gunna happen!!
Going to have some very yummy crumpets with vegemite instead.
With a big red cordial.

What has my life become!! Lol
 
Today is officially week five post-op.
I'm starting to feel considerably better. I have been alternating one day of relaxation with one day of doing small errands and activities. Next week - this increases slightly and I have one four hour road trip scheduled for Tuesday. I've picked up another three hours work - so nine hours per week - that is plenty for me this term.
Still pretty fatigued though - sleeping long and well every night.
Have an ulcerated throat - so difficult to eat food at the moment. Output is very liquidy as a result. Also been experiencing quite a bit of anxiety lately - not sure why. Not used to it - but riding it out and not letting it get a grip.
Had an accident on Thu night - I forget that I don't have much control over my colon - when it tells me I need to go - I need to go! I thought I had time to change into my pyjamas - apparently not!
Have GI appt tomorrow - time to join the Humira Club! Hoping it will help with the mouth ulcers - the one of the RHS has given me an earache. Ouch!
 
Today is officially six weeks post op.
An unexpectedly rough week. On Tuesday I started getting arthritis pain in my hips - to the point I could not stand and walk and had to go to bed. Woke up the next day and thankfully the pain had gone, however it returned yesterday afternoon, and left again this afternoon. I'm hoping the Humira will address this issue.
Saw GI last Monday. The GI nurse is at a conference in Barcelona - tough gig huh! Have to wait for her to get back so paperwork can be completed so I can start Humira. I'm a bit trepidatious about starting it - but also quietly hopeful it will deliver remission.
CRS appt tomorrow - hoping he will check my bum and confirm that reversal will be do-able after 3 months on Humira. I'm hoping the reversal can be scheduled for July school holidays.
Stoma nurse appt tomorrow too. I'm very worried about where my stoma is stitched to my tummy. The top bit looks like it has an ulceration. The right hand side is split and red and angry. The bottom section is searingly painful and looks quite detached from the skin. The left side is ok though!
Mouth ulcers have been excruciating all week. Have not been able to eat until Friday - this weakened me considerably and put my recovery back a bit.
I've spent the weekend in bed watching DVDs. I feel well rested and realise this is what I should have been doing more of. I should have stayed in bed, and not have even rested on the couch.
I have a semi quiet week ahead of me, then back in to full swing the week after. Not sure if I'm ready for it - but quietly hopeful I have a good balance of work and rest sorted.
Fingers crossed.
 
Yesterday was officially week 7 post op.
Stoma nurse says stoma is in pretty good shape and was happy with how it all looked. Have had quite a bit of pain in the past couple of days. I now have split skin around the stoma in four areas. I know it will take a long time to heal given my lack of nutrition and level of ill health prior to the op. It bloody hurts though. Ouch.
Saw the CRS - was a bit shattered when he advised reversal will not be for at least 6 months. Agree with his wisdom about it though.
Still waiting for Humira .... My flare has started to recede - which is great.
The Botox is also starting to wear off - so I have way better control over my mucus poops.
If it wasn't for the extreme pain around the stitched area - I'd be pretty happy with my progress.
 
Bummer about the torn skin around the stoma. That as so many of us know, is excruciating! Did the stoma nurse give you any tips on what to do? You mentioned it was still stitched??? Odd, 7 weeks later?
 
I'm actually not sure that there are any stitches there - I'm assuming they have all dissolved long ago. I'm just left with torn skin that doesn't seem to want to heal any time soon. I refer to it as the stitched area as it's where it was all stitched together.
Stoma nurse was pretty happy with it. She said the barrier ring would help hold it together and heal. The pain is quite unbearable sometimes. But like all things - I guess it takes time to heal.
Ouch!!
 
Well, I'm gonna disagree with your stoma nurse! The powder I use has aloe in it to heal these things. And it's possible you have undisolved stitches.

Do you take baths? They can help with the healing. Do you use a powder?
 
What does the powder do?
I'm willing to try just about anything.
I was also thinking of getting a thicker belt. I currently wear a skinny one and it really helps hold it all up and reduce the drag factor that exacerbates the pain.

And how do I have a bath to help healing - without ending up swimming in my own poop? I'd love to have a bath!
 
I use convatec stoma powder it has aloe in it. I put it directly on the owie bits. Then I slap the Salts brand ring on top.

If you are like me and output is lose, shower and let the water pour over it. But a bath with just water, no soap to sit in for 5 minutes really helps.
 
Thanks Misty. I'll ask my stoma nurse for some powder and see how I go.

I had a shower with the bag off the other week - it was heavenly. I know the sitz baths work for my butt - so nice toasty bath for the stoma might be in order too. Might make it a weekend ritual.
Thanks for your advice - much appreciated. The pain is the only thing really holding me back at the moment - so keen to put it behind me and get it all sorted.
Then I can resume my regular every day life again.
 
Today is officially week 8 post op.
I've managed to catch a plane - one hour ride both ways. I was a bit anxious about it - but it went fine. Went to Adelaide to see Ennio Morricone perform at their arts festival. I booked it when I was well, and would otherwise not have gone. The concert was amazing. All other plans went out the window. Spent the remainder of the time laying down in bed in the hotel.
Getting proficient at changing the base plate and barrier ring every few days. Have made daily bag change part of my morning routine. The skin around the actual stoma is really messed up. I have no idea how it will ever heal. It is torn and completely separate from the stoma. My mum has given me butterfly clips to try and bring the skin together. I'll check with the stoma nurse first before using them. The pain from the torn skin is significant. I'm taking Panadol every six hours.
I'm also worried about taking Humira before the skin around the stoma is healed. This might also be exacerbated by my very low neutrophil count. I'm feeling quite anxious about it not healing, and this is effecting how I feel about the stoma in general. When there is no pain - it's great.
Also found a wrap to go around my tummy for extra support. I tried a girdle - but it felt very weird and was too tight. The wrap is adjustable and helps with the pain.
I've also started to feel dizzy when I stand after laying down. I'm attributing this to low blood pressure and I'm hoping it will pass.
I'm doing more work during the week. Straight to bed and laying down once I get home though. Trying to rest as much as possible to help my skin heal.
Also learnt to burp my bag this week!! A dangerous habit I lerve!!! It's like farting at will!!
 
"Also learnt to burp my bag this week!! A dangerous habit I lerve!!! It's like farting at will!! "
Indeed it is!!!

I really think you should have someone besides the stoma nurse look at your skin. As for feeling dizzy when standing up, I'm guessing you might be dehydrated. I do think you should see your Dr about these issues.
 
I was worried the dizziness might mean dehydration. My output is very watery. I'll increase my fluid intake.
I will make an appt to see the stoma nurse specifically about the skin. I'm wary about appearing to go over her head. I just can't handle the pain much longer. It is grinding me down and making it hard to do anything.

As always - thanks for your advice Misty. It's much appreciated.
 
:hug: Its got to get better! You should not have these issues any longer with your skin. And frankly your stoma nurse should be VERY concerned and if she isnt too RIGHT you go over her head. And dont feel bad about it! This is NOT ok!
 
Hi Samboi, hope you’re healing improves. I have a question for ya; is the area that’s not healing directly under where the adhesive is? My skin has always been very sensitive and every time I removed the adhesive ring, it caused the skin underneath that started to heal to tear apart.. It definitely was painful. Just looking at the thing hurt. ; ) At the time my stoma nurse was coming around, she never advised me how often to change the adhesive ring so I started changing it less and less often. There never was any real odor problem or negatives except changing it more often definitely made me feel fresh. I go for a week at a time without changing it but that’s pushing it. I guess the point I am trying to make is that by not disturbing the thing every couple of days might help it heal quicker. I have never had any kind of infection yeast or otherwise. I use a two piece system from Convatec and over all it has worked well. The human body was never designed to have the plumbing re routed so I guess slow healing is something to be expected. I really wish you well, my stoma was the best thing I could have done given the circumstances. My first 6 months was my worst. Good luck ok! Bob E from the foot hills of Maine
 
Thanks Misty. I'm thinking I might have a chat with the IBD/Humira nurse about it and see what she thinks - kinda like a second opinion. If need be I will drive cross town so she can look at it.
And thanks Bob - I'm going to try and follow your advice and keep the ring and baseplate on for as long as possible. I use a two piece - so should be able to swing it. You're right - it must be tearing away at the already torn skin.
I just want the pain gone and the skin healed so I can resume my life. I'm sick of laying in bed watching tv and DVDs all weekend. I want to hang out with my friends and go for walks.
 
I hope it heals well and the pain goes away. Us crohnys are no stranger to pain but having it gone make us all smile Take Care Bob from the foothills of Maine
 
Just wanted to say a quick thank you for the helpful advice I have been given.
I've stopped changing the ring and base every 3 days - holding out as long as I can so the skin underneath can heal longer without interruption.
I've picked up my Humira - but have decided not to use it until the broken skin has healed up.
I'm in far less pain, and I'm feeling better about everything.
I was pretty miserable after my failed trip to Adelaide last weekend. The support and advice from those on this site has really helped me move forward in my recovery.
So thank you.
 
Yesterday marked 9 weeks post op.
I finally feel like I have turned a corner.
My mum loaned my a girdle type singlet top - which I now wear every day as it holds everything in place. My pain from the broken skin has diminished significantly.
I'm eating better. Still don't have a good handle on fluid intake - but getting better.
There are times when I forget I have a stoma.
Working hard during the week and resting all weekend still. And feeling good about this. I felt lazy and a little hopeless before. Now I know my body needs this rest.
And I have energy again!!
 
That's so great to hear! I'm really pleased that your skin has started to heal and that you are feeling more positive.

You must keep up your fluids - we ileosomates lose such a lot of fluid through our stomas that it is important to keep topping it up.

Never feel bad about resting. My gastroenterologist once said to me that my body was constantly fighting the Crohn's, whether I realised it or not, and that I had to eat well, exercise moderately and rest when necessary to give it the best chance of winning. :ghug:
 
I've read your entire thread and am so impressed with your bravery! I was diagnosed with Crohns 25 ish years ago and they've been cutting bits off the colon a bit at a time Now I have an ileostomy and my main problem is hanging onto food long enough for it to pass as anything other than it's original form...food is now boring and a bit of a challenge but I've found the worst aspect of the whole thing is tiredness. I have to fast before travelling( an hour out is my max) so planning is a necessity, as well as a big handbag for my emergency kit.
I change my bag every day as my output is so liquid it makes the bag deteriorate and always rinse it after emptying . I don't know whether others do that but it does make me feel cleaner and I kneel to empty it over the loo, so no splashes.
You've done brilliantly and I'm full of admiration for you. Jelly and marshmallows are meant to be good snacks and bananas help with thickening the output.Good luck and I'll follow your progress with interest and admiration.
 
Good advice Susan. Now if we would ALL heed it. My body gets much more worn out than I wish. And after surgery it seemed to take forever. When the energy comes back, we all like to do too much, and that is not a good idea if you are a crohnie.

Samboi....I am so glad your skin is clearing up too! Wooo hooo!!! Yes, rest when you are tired. I was supposed to go out tonight, but I'm knackered. So, here I am...resting. I think you are doing fabulously!!!
 
Today marks 10 weeks post op.
My split skin is healing - hoping it is healed enough to start Humira in about two weeks.
I'm changing the rig once a week, change the bag every morning after my shower.
Sleeping really well - in fact - I have never slept better! Despite waking and emptying in the middle of the night, I have never before found it so easy to fall asleep at night.
I'm feeling a bit more confident about taking Humira. I've been getting very painful ulcers in my throat - I'm hoping the Humira will clear these up.
I still have emotional moments when I find the bag confronting. And times when I feel less strong and a little defeated. But then I buck up and feel better again.
I still struggle with how long this recovery takes - but I'm taking my time and doing what I need to do to make sure I get better.
I also have still not managed to keep any social engagements I have made. To the point that I have stopped making them! But I'm thinking in a month or so I might be able to keep one. This experience has taught me patience.
 
:headbang: You're getting there! And you are healing normally.

The patience bit is by far the hardest part. (well, it was for me!) Thing is, even after a year we still get down and frustrated, so expect that to happen.

You've done incredibly well!!!!
:ghug: :heart:
 
Hi Samboi, Glad your to hear about your progress. Sounds like you need a walk in the park and feed some squirrels. ; ) The more you do to distract yourself, the quicker you will heal. Well it worked for me. Glad your feeling bettter Samboi. Bob E from the foot hills of Maine
 
Tomorrow marks 11 weeks post op.
I've just had a long hot shower and changed my rig.
The pain around my Stoma returned with a vengeance this week and I can see why.
At the very top, there is a massive crater where skin should be. It looks red and weepy and the sight of it made me cry. There is still the split skin on the left and right hand sides, and it doesn't seem to be making any progress towards healing. It looks like a mess and the pain is constant.
Looks like I'm off to see the Stoma nurse next week.

I started the Humira loading dose on Thursday night. It went fine. I could no longer stand the relentless pain of the throat ulcers & ear aches from them. I thought the Humira might help clear them up if it's going to be an effective treatment. Now I'm worried that it will delay the healing of the crater I have next to my Stoma.

I've also been thinking about my reversal. I was planning on getting it done during the September school holidays. My thinking has changed - and I want to get it done as soon as I am allowed. So far - the Stoma has done what it needed to do, but the impact on my quality of life has been profound. I just want everything to go back to how it was.
 
Hi Again. I read your post and I felt your pain or at least the rememberance of it. I was very fortunate to have sneaked thru the first stages of healing after the stoma surgery. I didn't have any deep splitting skin just raw patches under the sticky parts from the adheasive ring. It's still a bit that way but nothing like what you discribe. I really wish you the best with healing and a reversal as soon as it's possible if that is what works for you. God Bless Bob E. from the foot Hills of Maine. PS: I have some news about my iliostomy but I will make a separete Post... Take Care Samboi
 
Oh Samboi! Very sorry to hear about your crater. Glad to hear you are off to the stoma nurse about it. I think most of us here can understand your frustration!

Seems possible you need a different rig set up to be honest. Convex type might be a solution?
:hug:
 
Thanks Misty.
I'm thinking that in my endeavor to save my skin, I have exacerbated the situation.
I started changing the barrier ring and base plate every seven days so I wasn't tearing at the already torn skin. When I took it off this morning, I could see that the acid had eaten away at the barrier ring, possibly exposing my skin and burning it.
So I might go back to changing the rig twice a week to try and stop this from happening.
I'll see what the Stoma nurse says.
Right now - I have had enough of the pain and the impact this is having on my life. In the past three weeks I have missed an engagement, a wedding and a friends 60th birthday party. I work enough to pay the mortgage and bills - then come home and go straight to bed. I want my life back.
Or maybe I need to start making a new life.
I'm starting to feel and sound like a real misery guts - urgh & grrr!!
 
You are still fairly fresh from the op. And yes, the learning curve is steep! 7 days is too long for you. Ok, so now you know. Most folks will do 5 days max with their 'rig'.

I can tell you that I am still tired after over a year, but thats crohns. But, it still took a good 5-6 months after surgery to feel 'normal', back 100%.

You WILL GET THERE!! Soon you wont be missing anything. You'll be raring to go.

And when do we get to see a picture of your pretty face?
 
My next CRS appt is in July. Hopefully the Humira will be working and my reversal can be arranged. I was going to hold out - but these constant complications are grinding me down. I'd rather be recovering from the reversal. I've already written the year off - so might as well use it effectively!

And I have no idea how to upload a pic. Not even sure I have a pic of myself. Lots of my cats though!! I've spent all day laying in bed with them, watching DVDs. They are such good company.
 
You upload a picture from your user profile. And cat pictures are always welcome! Yes, animals are the best friends.

Here's hoping the Humira does the trick for you! I am sure it will.
xxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Today marks 12 weeks post op. What a difference a week makes.
Saw the stoma nurse on Friday. The messy crater has started to heal. The nurse confirmed that the skin tears and ulcerations were all reflective of active disease. The Humira loading dose I took last week has really cleared it up and it looks heaps better.
The ulcers in my throat have almost cleared up, the pain from the skin disaster around the stoma has almost completely gone. I have energy and I'm eating properly again.
I am heartened greatly as all this seems to indicate that Humira is working for me and the CD is getting back under control.
I'm not getting too excited as I have had a few false dawns along the way - but yesterday I did a bt of gardening and it felt fantastic. I also managed my first proper social engagement for 2012 on Friday.
I am finally getting better. Phew!
 
Samboi, great news! You are healing and that has to be a relief and take away the pain and add an appitite; fantastic. So glad you are doing better and hope it continues. Bob from the foot hills of Maine
 
That's terrific news! I was feeling so much for you with people saying "It'll get better" - but it wasn't. It must have been so disheartening. Now you can enjoy the relief that having the ileostomy should have given you from early on. :thumleft:
 
This started my day off right!!! So glad to hear things are really improving and looking up for you!!
:yoshijumpjoy:
 
Today marks 13 weeks post op - officially 3 months.
The bigger barrier ring has helped my skin heal.
I now have just the actual split skin on the RHS which is slowly healing.
The crater has gone. The LHS has also completely healed.
There is still a bit of pain from the skin - but I think it's just inflamed skin, not any further disease related problems.
The output has thickened up well - very happy with it.
Had Maccas as a treat for my kiddo last night - never again!! Pixie the kitten woke me up just in time - my bag was ready to explode!! I actually put a mattress protector on yesterday morning - just in case of this possibility. Prescient!!
My life is finally returning to normal, my sense of humor is returning, I'm chatting with a few ladies with a view to going on some dates, and I'm thinking about resuming some light exercise. The Humira is working really well, life is good. I'm relatively pain free.
I smile again. And that makes me really happy.
 
I am soooooo happy about this!!!! Now, it's time for a picture of yourself!! Really, I think you should post your pic!!!
:thumleft:
 
Samboi - Thats great news. Glad that you found something that's working better for you. Trial and error is sometimes painful but necessary as everyone has a slightly diferent response to the meds etc. I had to go with a larger openeing because as weird as it sounds, "it" at times would push the barrier off my skin and that wasn't fun. My skin appearantly has toughened after exposure to the output for the last 6 years. So glad you are feeling better and life is looking up for you. Bob E.
 
Curses!
Damn disease is active around the Stoma again. It's been painful the last couple of days. Changed my rig tonight - bloody bits at the bottom and LHS.
RHS torn skin is looking great though.
My tongue has been a little rough the last couple of days - I'm expecting ulcers to start soon. So I wasn't that surprised to find active disease again.
Hoping my shot of Humira next Friday will get it back in control. The first dose worked so well - I know I have to be patient and let it build up.
But I'm bloody annoyed to see it back so soon. Grrrrrr!!
 
Really hope you are in for a GI appt soon? So sorry to hear this! After my surgery mine flared up again very shortly afterward as well
GGGRRRRRRRRRRRRRRRRRRRRRRR
 
Today marks 14 weeks post op.
The active disease has started to clear again. Which I am relieved about. It's still there - just not as bad. It's actually really fascinating seeing up close what the active disease looks like on a bit of intestine. It's no wonder we have such pain during a flare.
My energy levels are almost back to normal.
I keep saying it - but I'm thinking about starting exercise again. It's been too painful with the very active disease.

Mucus poops have really increased since starting Humira. I'm trying to use this to exercise my sphincter muscles. Doesn't always work - pooped my pants the other day - whilst patting the cats in bed. Oops. Not liking the urgency that comes with it. I had to clean up a little trail to the bathroom.

Now working towards getting my reversal in Sept. Long way to go yet.
 
Congratulations on your successful surgery, I too had a temporary ileostomy for a year which allowed my small bowel to heal. There were ups and downs but the opportunity to heal outweighs any of the downs. Please feel free to pm me if you have any questions or feel like venting or cheering or whatever. I'm pretty open about things so don't hesitate and also in Australia so may be able to help if you have problems with appliances etc.
You sound a lot like me when you are sick in hospital - not quite believing you are as sick as the doctors say you are but instead should be well and coping as we all do for so long at home. Actually not sure if that last part makes sense so hope you understand what i'm trying to say which is give your body and mind time to recover while you have the opportunity.
I also wanted to say that I think your attitude is fantastic and a credit to yourself and your parents.
kind regards, Anna
 
Just realised I missed the next 4 pages of posts and your surgery was actually 14 weeks ago. haha. thought it was yesterday. Can crohn's affect the brain?.
Glad to hear things are (mostly) going well.
Anna
 
Mucus poops have really increased since starting Humira. I'm trying to use this to exercise my sphincter muscles. Doesn't always work - pooped my pants the other day - whilst patting the cats in bed. Oops. Not liking the urgency that comes with it. I had to clean up a little trail to the bathroom.

Now working towards getting my reversal in Sept. Long way to go yet.[/QUOTE]

Sorry about the mucus poops! I've gotten caught out a few times myself. Grrrrr! But look how well you are doing, even a couple of weeks can make a HUGE difference in us. (good or bad) By Sept you will be feeling 100%. I'm very glad they have you on Humira. Do they intend to keep you on it for awhile?

And I have to say...well done you! You are doing brilliantly.
 
Samboi, one of the things I was worried about when i had my ileostomy reversed was that my sphincter muscles wouldn't work properly and I'd get constipated which is the last thing you would be wanting. I was fine until about 2 weeks post op when I went to emergency thinking I had a blockage- I was blocked but fortunately one they were able to clear easily with Motilon (?sp) to move the stool on and out. And it occurred further up the large intestine. So sphincter exercises are a good idea. As to the mucus poops or any sort of follow thru, just another of the joys of CD! I always carried a whole spare outfit in my car when I had my ileostomy, just in case!
 
Hah - I carry a full spare outfit in the boot of my car. Your message actually gave me a quick panic as I momentarily thought I had forgotten to replace my supplies I had used from there. All present and accounted for though. Phew!!

As for when I get my reversal - I'll be drinking Lacdol by the gallon for awhile methinks!! I don't want any bother with my new butt!!
But that's a long way away at the moment.
 
I rememember that panic well. OMG i'e forgotten a spare bag etc etc. Such a relief when it all gets reversed. The time will be here before you know it.
 
Tomorrow marks 15 weeks post op.
Had a lovely long hot shower, bag off, changed my rig. For the first time in 15 weeks - there is no sign of active disease! I'm thrilled. There are no skin tears, no ulcers, no blood, no mess. And just as importantly - no pain. It looks normal. Well - as normal as a piece of intestine coming out your tummy can look!
Humira is working wonderfully - I'm really happy with it.

My reversal surgery discussion appointment is not scheduled until late July. I am going to reschedule it to exactly 3 months after I have started the Humira - so I can get the reversal done asap. I'm planning to take about 6 weeks off to recover - I have learnt my lesson about leaving plenty of time for recovery.
If I get it done in time - I might be able to go overseas on holidays for the Sept school holidays. Fingers crossed.

I've been having terrible anxiety the last week or so. I think a lot of this stems from the surgery and recovery and the reversal on the horizon. I spoke to the psychologist about it - and she confirmed that this is normal. Phew.
 
I feel like I'm getting a fissure - which seems ridiculous given I am taking Humira and I only do mucus poops. Has anybody else had this happen?
I'm hoping it's not a fissure, as this will delay my reversal.
What a pest.
 
I can feel it - the little bugger. Not with my hand or finger or anything - I can just feel it forming. I know those sensations! It's also a bit itchy.
I usually have a little fissure most of the time - so I guess it's just an old friend coming back! My mucus poops are a bit bloody too - so I obviously have some active disease still happening - it's just not in evidence on my stoma thankfully.
I've had a sore throat and earache the last two days - so think I might also be neutropenic - gotta organise a blood test to check.
Gawd - if it's not one thing - it's another!
 
fissure and anxiety

Samboi, I also developed a fissure the month before my reversal was due (also had a major flare up at the same time which put me in hospital for 2 weeks). Anyway, long story short although my GI thought the fissure may delay the reversal, the surgeon was happy to go ahead. But, My disease is mainly terminal lieum whereas yours seems to be more anal (?) so there may be a different decision for you. I guess the best idea is to get it checked out asap so any problems can be rectified (no pun intended) early on. As to why they appear when you're not using your butt? I thought maybe straining to get rid of the mucus? You know how you get the feeling that you have to go but there is nothing really there? May also be a haemaroid I guess. The anxiety? No wonder after everything you have been through, are still going through and have to go through in the future - perfectly normal. I think although we can justify and understand everything that has to happen and is happening to us, and we can joke about it and adjust to it, there is still that little bit of us that says oh @#$% this is not fair and this is scary and why do I have to put up with it? So perfectly understandable to feel anxiety or feel down. Just remember to reach out and talk to someone and know that these feelings will pass.
Best of luck.
 
Today marks 16 weeks post op - and I'm happy to say - my life has pretty much gone back to normal - which I am thrilled about!!
Went to a friends birthday on Friday night, coffee date yesterday afternoon and lunch with a friend today. Had to cancel dinner plans last night as I didn't feel 100% - but otherwise - feeling pretty good and getting back in to the swing of life.

Hair is still coming out by the handful - never mind. Have a little mouth ulcer and rough tongue - but nothing like it used to be. Definitely have a fissure - but I only do mucus poops - so not much bother. I seem to have a perpetually runny nose - so just carry a little hanky. Only issue is the slight cramping, followed by a dunny dash for urgent mucus poops. I'm hoping this will settle. Otherwise I'll start wearing the adult nappies. I'd rather that than have an accident.
Best of all - I'm starting to get my confidence back - which is fantastic.
 
Hi Sam, glad your body is somewhat under control with the Humira. Anything positive is reason to smile again. One dqy at a time. Take care ok... Bob E
 
Indeed, you are getting better everyday! It takes a long time to recover doesnt it? I'm sorry about the hair. Mine seems to be falling out as well, as it's down to my waist, I'm not enthused. But this too shall pass.

Keep on getting better. (and I hope they can sort that fissure out!)
 
It's not a fissure - it's a damn hemorrhoid! He's a whopper!
It's been giving me hell.
I've made an appointment to see the GP this Thurs.
I'm thinking it's the perfect time to get rid of my hemmies - got a bag, don't use my butt - so might as well.
Has anybody else been troubled by hemmies when they have a bag?
Might post this question on the general forum to find out.
 
Why does our hair fall out? Is it a nutritional thing? or just another unexplainable joy of crohn's? And why does my computer keep auto substituting the word crowns for crohns?
 
It's not a hemmie after all - it's a fissure. Confirmed by the GP this afternoon.
Combined with the three mouth ulcers I now have - it seems Humira is not working so well after all. I'm off to the GI on Mon afternoon to get it sorted.
I'm thinking either an additional support drug, weekly Humira shots, or a short course of Pred.

Curses!!
 
Oh so sorry to hear that Samboi. I hope the GI can help. I have posted in a few threads that I had a proctectomy a week ago today. I am so pleased to have had all the problems I was having removed and I feel great. Not sure if you have thought of this at all but I am happy to tell you about it if need be.

I know this doesn't help if you are aiming for a pouch, but I am not sure this can happen if you have Crohns?

Good Luck. Kaz xxx
 
Thanks Kaz.
I'm so annoyed at my bum right now!!
I'm determined to get a reversal and resume my life as a person with mild crohns.
I guess I have to see how my guts behave.
I just have to get it all back under control.
 
What a bugger. Sorry to hear the Humira isn't working. Have you tried infliximab yet? Will they allow weekly humira in australia? I've seen how people on here seem to have infliximab at less tan 8 week intervals but thought medicare were really strict on how much they will let us have. (even if we are suffering!!!!!!)
 
I'll find out Mon what the solution is - not sure if weekly Humira is allowed - but fingers crossed.
Infliximab - used 10 years ago and it was great. Tried again in Dec last year - had anti bodies - caused convulsions. Thought I was going to die. Never again!

I'm hoping for a two week dose of Pred and weekly Humira.
Otherwise - not sure what other options are available. Hmm.
 
yes hopefully a short course of pred will do the trick. Shame about the infliximab although its a nuisance having to go to have the transfusions, humira is so much easier. As for other options, i'm with you on that one, just hoping the third infliximab dose kicks in cos i'm flaring even though i'm still on 20 mg pred - which i have to get off before they can do surgery.
 
its all a bit confusing really. I keep getting abscesses in my small bowel due to inflammation. Because I've been on pred for so long they don't want to remove the bad area until i'm off it for a few months but its also complicated because I have had so much removed already its getting to the point where I won't be able to absorb enough nutrients. Basically none of the medicines have helped or I've had bad reactions to them and surgery will leave me with another ileostomy and a short bowel and all the complications of that. Damned if I do damned if I don't. We were hoping the infliximab would work this time (i've been on it before) but it doesn't look like it is. I've got my third dose on Wednesday but I feel like the abscess is returning so looks like I will be back in hospital. I've only been home 3 weeks after a 6 week stay on TPN and the thought of going back is scary to say the least. I just keep on keeping my fingers crossed that my body will somehow fight it all off but i think its just delaying the inevitable. I had a lot of problems with my last ileostomy due to a very high output - 2-3 litres a day, so i'm very wary of returning to that. Problem is crohn's doesn't give us any choice does it.
 
Sounds like you're kinda hamstrung.
It's always so hard to know what to do.
I know that anxiety you feel about going back to hospital. As much as I'm keen to get my reversal - I'm very freaked out about having to go back in to get it done.
 
I didn't find my reversal too bad. Of course the usual few days of discomfort after a tummy op, but once every thing was working again I could go home. I think I was in hospital for 10 days. Had a scare a few days later thinking I had a blockage but it was only constipation and movicol fixed that up. Doing bottom exercises, like pelvic floor exercises could be beneficial too. Haha, I was scared everything would have forgotten how to work, but fortunately that doesn't happen. Where is your main area of problem? i.e. How does crohn's affect you? How long have you had it and have you tried all the other meds?
 
oh yes, when you do have your reversal remember to take some SOFT toilet paper from home (rather than the scratchy stuff supplied in hosp) and also bepanthen or similar soothing cream as some people get an irritated bottom for a short while until it toughens up again.
 
I have been forewarned about butt burn.
I always take baby wipes and calmoseptine with me.
I'm also thinking of having a bidet installed in my bathroom at home.
I might as well!!
 
Sorry - didn't see the post above that. Oops!
My CD is super dooper anal. I've had it for 20 years and it's generally very well behaved. Gets out of control every 10 years or so.
I've always taken anti inflammatories - bit they are no longer working. So now it's Humira - which works well for the first week, then not so well the second week.
No point getting a reversal until it's all cleared up.
 
Yesterday marked 17 weeks post op.
This week I took my Humira a day early to try and get relief from my fussure and mouth ulcers. The nights after my dose are a bit of a write off - I fall asleep very early for about 2-3 nights and sleep in late the next day. Seems to be a bit energy sapping! The fissure is clearing and so are the mouth ulcers - ace!

I've got a strange head cold that has crept up slowly. Congested and runny nose. Itchy throat. I also have a case of persistent thrush which is very annoying.

Saw my GI today. She has given me a prescription for some suppositories to keep the disease controlled a bit better whilst the Humira kicks in. About which I'm being impatient - I'm told! Also have to go back to the hematologist as my neutrophils are low again - contributing to the mouth ulcer problem.

I'm slowly resuming my social life etc. It's very hard going though - harder than I expected. I'm still pretty reluctant to leave the house, and I'm exhausted when I get back. I still spend most of the weekend resting and in bed. Getting there though!
And about to start job hunting!
 
My new nightly routine -
1. Clean teeth then swallow a dose of Nilstat for what I assume is trush in my throat
2. Evacuate all the exits incl emptying bag
3. Apply thrush cream
4. Insert suppository
5. Apply calmoseptine
6. Tuck myself in to bed by 8.30pm
 
NOT exciting! Have you had the Dr test that it is indeed thrush? (sorry, I just think they should have a looksee) Have you been over to the Humira/Remicade sub forum by the way?

Sure hope you get some sizzle back into that life!
 
Sorry to hear things are tough at the moment Samboi. Not fun at all. Mouth ulcers are so painful and to get a cold on top of everything else just puts (or should I say takes) the icing on the cake! Hope it all improves soon.
 
Last Sunday marked week 18 post op.
Mouth ulcers are clearing up. They have been exacerbated by neutropenia - saw my haemotologist today - she is so lovely - I feel very lucky to have her on my care team. I'm back to having neupogen injections twice weekly until my white blood cell count increases - she has given me eight weeks to get it sorted, then I can reduce the dose. Not thrilled about the inevitable bone pain ....

Still have the cold lingering - it has sapped me of strength for another week - but can feel the energy coming back today!
Thrush is also still lingering - hoping to shake it off in the next week.

Went to the ostomy shop today to collect my supplies. The chap there is so helpful and full of tips. Very lovely man. He always makes me feel so much better when I see him - he's very supportive and caring.

Have had two small leaks from the same spot this week - not sure why - I'll see if it happens again and ty and work out what's wrong. Noticed a little ulceration on my stoma too - hurts a little bit - but nowhere near as bad as it has been before.

And I've started researching having a bidet installed in my bathroom - which I'm very excited about. I'm hoping it will go some way to help preserve my bum. My poor old ruined bum.
 
What are your most recent blood tests with your white blood cells Samboi? Sounds like they are very low! I cant remember if they have you on Aza as well as Humira?
 
Just Humira.
Neutrophil count is 0.4 - haemo wants to get it over 1.0
I've had lower though!! I once had none!
I'm under express instructions to go directly to hospital if I get a fever.
I'll be fine though. Just avoiding paper cuts and sick people!!
 
Today marks 20 weeks post op.
Have started the neupogen injections - assume they are working as my mouth ulcers are almost gone and so is the cold I have had for a few weeks now.
The bone pain the next day can be a little bit agonizing - but it passes after a day.
The fissure is still hanging around - the little pest.
The persistent thrush also persists.
My energy levels are improving.
I'm winding up my business and looking for a part time job three days per week.

My Stoma has really settled. No more need to get up in the middle of the night to empty. Usually wake up once for a bag burp, depending upon what I have eaten.

The anxiety and depression have lifted a little. I was really surprised by how much these have affected me. I'm not used to those types of feelings - so have found them very difficult to deal with. Have regained my sense of purpose - so hoping these are behind me.
 
:thumleft: You are a warrior! Sounds like you are getting there.

Tell the thrush to go bother someone else!
 
Gosh it's hard working out flares with a Stoma!
I've had two accidents today - from my stump!
It's Big D from - well - pretty much nothing! It's total liquid with a splash of blood. In fact my mucus poops are just all liquid all the time. The accidents are just urgent. One actually happened when I sneezed - which is a bit nanna of me!!
So is this really Big D? Or would that exit in the bag?
Or is it CD that's a little flarey today?

Very confusing .....
 
Big D I get in the bag. Not the mucus poo's. But..(pardon the pun) I never had much problems in the rectal area. Sounds like your stump has got some inflammation. Butt facial time!!!
 
Thanks Misty. I've been alternating Pred & Salofalk suppositories - meh - they do nothing. Although I have to remind myself - they are not a plug!

I think I just have to get used to how Humira works, as well as the recently introduced Neupogen. The CD on the stoma settles, then reappears, then *poof* gone again. The mucus poop runs and accidents appear, disappear, reappear, then *poof* gone again. It all seems very erratic - probably mostly as I am used to years of unbroken and unchallenged remission.

Think I'll just go to the shops and get myself some adult nappies and be done with it!
 
The one time I did have rectal inflammation, the GI gave me the suppositories and I walked like a duck for 3 days (mind you that was ONE pill!!!) He said I couldnt have the butt facial foam cause it had no where to go. I said thats what sanitary pads are for you silly man!!

You could try the foams and see if they help you (with a pad, cause it has no where to go otherwise)
 
Yesterday marked 21 weeks post op.
Thrush has finally gone.
Had my second cold in 4 weeks - guess I have to get used to that now I'm on Humira.
Had two days in bed - has done me the world of good and I'm feeling pretty damn ok!!
Starting to feel like regular life is resuming. I hope it's not another false dawn!
Still have what I consider to be a relatively mild uncontrolled flare in my stump - but feeling ok about that too!
 
If the thrush reappears, it might be worth trying something that many women use to control vaginal thrush - yoghurt. It has to be natural LIVE yoghurt with bacteria, lactobacillus acidophilus, in it.

You can get some benefit from eating it, but my doctor (a woman) recommends using a syringe (no needle, of course) and insert wherever necessary.:ybiggrin:
 
I'm now 22 weeks post op. Another 4 weeks and I will hit the six month mark.
Everything has really settled.
Had a lot of fatigue recently - so spending more time relaxing.
No colds, no thrush, no nothing. It's great!
Have got a kidney stone though - made itself known this afternoon - ouch! Off to the GP tomorrow to get it sorted.

I'm still a little concerned over my mucus poops. They are liquid, often have a little blood and are sometimes accompanied by urgency. It's like having diarhea. The Humira has worked wonders in every other area - it doesn't seem to be resolving this however. Has anybody had a similar experience - diarhea from the stump that is liquid mucus?
I'm worried about getting a reversal whilst this situation persists.
 
From what I can gather from others on here, and myself, mucus poo's can go from liquid urgency, to plops with the greatest of ease. (for the poo's NOT for us!) I've occasionally had a bit of blood in mine as well. My stoma nurse said occasionally this was normal. But not if it was all the time. Now Heather my stoma nurse knows her 'shit' quite literally, so I'll take her word for it. I've had urgency as well. I suspect it's my bodies way of making a joke, just in case I forget what life was like before Stan.

Have you had a colonoscopy/or scope yet? (oh its great fun having your stoma deflowered) And have they had a biopsy of your rectal tissues? This is what I would recommend they do for you. That way, they KNOW and you know what is happening in your rectum. Not fun, but I cant see them doing a reversal without going thru those proceedures first.
 
Thanks Misty - I thought you might know the answer to my question!
Sounds like it's all a-ok then!!
Haven't had any biopsies or a colonoscopy yet. Not relishing the thought of either .... especially given your descriptions - eek!!
Oh the perpetual wonder (& indignity!!) of this disease!!
 
Well, it sounds like you are doing fabulous! So a little deflowering wont hurt...much! I laid on the table and thought of Johhny Depp...sigh.........

Anyway, it would be a good idea to have these proceedures done. When they did mine, I thought I was having a bit of a flare in my stump. Biopsies said no, it wasnt the crohns acting up there. (that was when I threw the horse pill making me walk like a duck away that the GI had me put up there :voodoo:)

When is your next GI appt?
 

Similar threads

R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
1K
ras96mg
R
T
Advice please I’m a newbie
Replies
11
Views
1K
Constipatedguy13
C
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
R
(My Story) Looking for answers!
Replies
20
Views
3K
Aituk7
A
M
Any experience with Rinvoq
Replies
3
Views
3K
Crohn2357
Crohn2357

Latest posts

Back
Top