Operation - when you wish you had never done it.

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Good morning! Off to see some of my patients. I will post anything particularly funny that they pull on me today! You just never know what the under five set will come up with. Funny little guys!
Hope the CT helped you out & that the WBC count is coming down.
Michele
 
Hi guys,

The CT showed a pocket of some sort of substance.:thumbdown:Consequently I got sent down there again yesterday and the guys there (a very pro team) inserted a drain in my left buttock going all the way to my pelvis.:voodoo: They drained 200ml of puss and left me with yet another bag to carry around...and it really worked. :medal1:The painful stoma movements are slowly becoming a thing of the past and I can feel my wound itching. I think I'm healing :yfaint:

That's all for now.

Me
 
Glad to hear they are sorting you out! Sorry however to hear you have yet another hole in in you!
Misty
 
Dear Ari,
So glad! Sounds like you are heading in the right direction! Healing thoughts coming from this side of the Atlantic, buddy.
Michele
 
Hi Ari!
I am new to the site and came across your post. I am so sorry to hear what you are going through! I just had a small bowel resection in January and I had a few post-op complications as well. (nothing compared to what you are experiencing though :() You must be a strong person to go through all of this. Keep your head up, you are in my prayers.
Hugs, Beth
 
Hi guys.

Thanks for all your posts so far. You are all fantastic.

Just a quick update .My urologist here is not happy with that pocket of puss they found a few days ago and I suppose we are all waiting for it to shrink now. I'm going to have another CT scan on Monday and if it has then the cath can come out...and perhaps soon after they will let me go home. I just can't wait.

I nearly forgot to mention my appetite which is way through the roof. I’m constantly eating, munching or chewing on just about any edibles or nibbles I can get over here. ..and I soooooooo love it. :kello:

be good

Me
 
"I nearly forgot to mention my appetite which is way through the roof. I’m constantly eating, munching or chewing on just about any edibles or nibbles I can get over here. ..and I soooooooo love it. "

Wooo hooo!!!! Next thing ya know you'll want mexican food! Are you on prednisolone by any chance?? That'll do it for your appetite (well, for normal people, me...no)

Misty
 
Well, let's here it for disappearing puss! No more cath! What a thing to look forward too, huh? But going home, oh that is the best!
Have some nibbles for me!
Michele
 
Morning, Ari! Nice, rainy morning here. Enjoying a second cup of tea with my mom before she leaves to go back home. I hope you are headed in that direction yourself, my friend. Trying to sleep in the hospital is impossible!
:getwell:
Michele
 
Wow you have been through too much. I hope that the pocket of puss shrinks so the catheter can come out. Good luck with the cat scan on Monday.
 
I am grateful that you have your appetite back and that you are enjoying food. I hope that the infection heals quickly.
 
Ari, hope you are feeling a bit better today. Perhaps you will get an update from the Dr's tomorrow and we all hope it will be good news. Hope your appetite is still going strong and you are getting around the hospital.
Misty
 
Thanks guys.

Now, this can't be normal. There's a little place serving food over here and they do hot meals twice a day. I went down there 5ish and got a box of macaroni and cheese takeaway, brought it back to my room (bay), ate it and then they brought our tea (dinner) over and I had 2 dollops of mashed potato, fish salad and yogurt...and after that I went down to the restaurant again and got ANOTHER box of macaroni and cheese...and 3 hours later I'm feeling peckish again. :ywow:

Is that normal? :eek2: I don't care!!! I'm enjoying it like never
before!!! :thumright:

I'll post an update tomorrow and tell you guys whether I'm going for another scan and what they are going to do about the catheter and the slowly drying drain. Ideally the pocket of puss will have shrunk so they can remove the cath and let me decide when I want to pee.:eek:rder:

You all take good care of yourselves.

Me
 
Wow! Thats great, you are def craving carbs for energy. No doubt for healing. I craved carbs as well. Alot of the folks around me in the wards needed carbs and salt. You sound normal to me. Good luck tomorrow Ari...we are all thinking of you and hoping for good news. Enjoy that food luv, you deserve it! Gawd knows we do without food enough with this disease. And I hope it doesnt offend...but happy peeing when you can. (Isnt it amazing the things we take for granted when we're healthy?)
Misty
 
Dear Ari,
Enjoy the nibbles! Let's hear it for eating painlessly! Hey, whats normal??? I have never been accused of that particular trait!
Good luck buddy. Hopefully peeing on your own is right around the corner! :biggrin:
Michele
 
Hi, Ari. I can't sleep so thought I would bug you for a minute! I shouldn't complain about it as you are in the hospital & I think it is a rule that nurses don't allow you to sleep more than 30 minutes at a go! (just kidding all of the nurses reading this and silently fuming). So how many times did you hit the snack bar today & what did you eat? Come on, details here!! I must taste food though my friends!
On the serious side, I hope the cath was removed due to lack of puss pockets & that you can now make the decision to pee! You know, that is something I never thought of. Had plenty of thinks about poop, never pee. Ha! The things we talk about! :ylol:
Hope you are sleeping peacefully,
Michele
 
Morning/Afternoon everybody.

First of all, Michele thanks for being out there. Big hugs :hug:

I promised an update, but nothing happened. :yrolleyes: I saw my doctors on Monday and they don't want to do any imaging until the brownish looking substance stops oozing from my drain. They took samples and sent them off to the lab and now it's just a waiting game.

My surgeon is pushing for the catheter to come out and the only obstacle between me and the outside world seems to be the urologist. According to what I've been told a few minutes ago they are in the process of organizing the scan and it should be done tomorrow at the latest.

I have been institutionalized enough now and it's about time to go back to the real world of fending for myself. :thumleft: I'm really hoping to go home some time this week.

Yesterday they let me go out to get some fresh air. I disappeared for a 2 hour walk round Harrow and was absolutely kna***ed when I came back, but I slept really good at night and today I noticed much less wound pain than before. :yoshijumpjoy:

My appetite is still good and I have already gained 11 pounds of my weight back. Yippee. Right now I'm 5 11" and 10.5 stone and growing :ysmile:

Even though I have had a few complications and my stay in the hospital seems to be dragging a bit I still think my surgery was the best thing that could happen to me. I already feel a lot better than before and am able to concentrate on other things apart from my pain and discomfort and words can't describe how good that feels. :sun:

I'll post my next update when they've done the scan.

You guys take good care of yourselves.

I'm :eek:utahere:
 
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heya ari i glad your doing better.. im glad your spirits are better that will help you heal faster, and soon you will be home and this will be in the past..
 
Oh good! Get the scan, get rid of the drain & get out of there! Although, a two hour walk may have been pushing it just a teeny-tiny bit, I am glad you slept! Perhaps that is the secret? I guess I will have to take the clothes off the tread mill! Take care buddy! Let us know the what after they scan you (I always feel like I am talking Star Trek when I say that!).
Healing :hug::hug:
Michele
 
Ari, here's hoping you can go home this week! Well done on the 11 lb weight gain too. I'm sure you will feel alot better once you get home and are back among friends and familiar surroundings. Lets hope the lab results come back with good news and the urologist giving you a bad time goes on holiday, and a nicer one takes over!
Misty
 
Thanks Misty, Michele and spcwife23

I've only just had the CT done and now it's the 2 hour wait for the results.
I'll let you know how it went when they're up here.

:panda:

Me
 
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Ok, so the results are fine and now I'm waiting for the final word from the urology to confirm that the catheter and the drain are definitely coming out this morning. I only need to spend one more night in this hospital which makes me a very happy bunny. :luigi:

All in all, I think I have recovered 70% of my normal strength already, but I don't want to lift anything heavy for the sake of the wound healing. A hernia is just about the last thing on my birthday wish list, or any other list I can think of.:yfrown:

This operation was a life savior and I'm truly beginning to appreciate how good it feels to be able to not think about Crohn's all the time. I had a lot of control issues before it, but sometimes you have to trust your specialists and leave your life in their capable hands for a while. In my case I can say it has already paid off, although I'll be able to fully judge the effects of it after the planned reversal of my stoma which will happen some time in August, soon after my birthday :ybiggrin:

Thank you so much for your support. You guys are a wonderful bunch.

Love to all

Me

x
 
Latest update. The urology have just made it possible for me to choose when I want to pee. Yippee!!!

I'll have the stent removed in Jersey and the follow up x-ray with the contrast to see how the colon has healed in 3 months over here in Harrow.

Glad it is nearly over.
 
Ari, I really hope you get the go ahead to go home tomorrow!! Yippeee!!
I'm doing a happy dance for you!
Misty
 
Hot diggity dog! Here's to peeing by yourself! Not for nuthin' buddy but as a person with indoor plumbing, I cannot fathom what you have been through! I am so glad home is within your grasp. Happy dance from me too! Don't try to imagine it, it is very ugly...I have NO rhythm!
So happy for you!
:mbh: :mbh: :mbh:
Michele
 
:sun: I'm writing this from the Gatwick airport. :sun: My flight is at 4.15 which leaves 45 min to faff and mooch around. Yeah!!! :applause:
After 3 weeks and 3 days in hospital I am finally going home today. Yippee. :yoshijumpjoy:
 
Welcome home, Buddy! I bet it feels good to be home. Listen to and follow all the doctors orders, and take it easy. Don't let your doctor have to tell you twice now! It's the mommy and teacher coming out in me. LOL!
 
Hi all,

Big thanks to all of you for the phenomenal support and your kind words. Big hugs especially to Andi, Misty and Michele who stuck with me till the end. You are wonderful.:hug:

My recovery is slow and I'm running a low grade temperature, but hopefully this time next month I'll be able to push it a little harder. I don't like the bag, but it was the only way of getting my dilated bowel back to its normal size. The whole thing will be reversed in September which is when I can expect a lot of vomiting from it. Foretold is forewarned I suppose.:voodoo:

Btw, it's funny what surgeons say. Mine said "You have no more crohn's. It's all gone" and what we all know is that I may not have the stricture and the fistula any more, but Crohn's is still there and now it's up to me what I do to not have similar problems in the future.:yfaint:

I promise to post regular weekly updates until I've recovered. :)

Me

x
 
You sound good Ari! I'm sure it is quite an adjustment having a bag. I'm confused as to why there would be a lot of vomiting with a reversal. I would have though diarrhea. Why is that?
 
Vomiting is one of the things I can expect. I know it's rare, but sometimes your bowel swells up and to your body it looks like obstruction, so for the first 2-3 days you may vomit or feel the urge to.
 
heya ari im glad your doing great and your going home.. make sure and take it easy and take care of your self
 
Well, the fun never ends with this party called Crohn's! Hey, make friends with the bag, buddy. Name it. Do what you have to do to heal and get your life back. In the end, all that matters is getting better. Low grade fever? What is causing it? Infection? Just be careful please.
Well, got to get my day started. Grocery shopping (ugh), laundry (crap), cleaning the house (where did THAT come from), paying bills (oh, good lord, did I really spend that much for natural gas...hey, cant we just hook me up?) and all the stuff I cant get to during the week cause I have to work cause I need to eat (grocery shopping), wear clothes (laundry), live in a house (cleaning), be warm (natural gas bill).... :rof:
Be well,
Michele
 
Ari, I had a low grade fever and managed to get a staph infection from the district nurses. Because I was still on pred, my immune system was shot after surgery. Take care of yourself, and get the Dr to give you more antibiotics if ness...dont wait, and dont take chances.
Misty
 
Thank you guys,:rosette2:

Michele, a woman's work is never done. Glad you are able to find enough energy to do it all.:yfaint:

Linda, I hear you had a strictureplasty of your TI not so long ago. I hope everything went well for you and you are already back to at least 60-70% of your normal self.:ysmile:

Misty, you and I have A LOT in common. I'm still on pred (2.5mg) and not sure if I mentioned this before, but the infection I got in hospital was caused by staph and unfortunately for me it was MRSA. :hallo3: They found it in the abdominal fluid from my first post-operative drain. My few braincells tell me that the only reasonable explanation as to how it got in there would be DURING THE OPERATION. I've been swabbed like a squillion times and they never found it anywhere else apart from my abdomen. Because the antibiogram showed it was susceptible to a very expensive treatment only they decided to put another drain in and watch me for a week or so. I didn't like the idea at first, but I healed pretty well and when they did the CT again I was as good as new and there was no sign of infection anywhere in my body. :thumleft:

My main worry is that the drain was still active when they took it out, so right now the liquid may be building up again. :thumbdown: I went last night and some of rather smelly mucus came out down the bottom end, and I'm sorry if you are eating, but it made a huge difference and the fever is nearly gone now. Touch wood. (He slaps his forehead :ybatty:)

Another thing that could have contributed to my not feeling well was the ongoing uti, as there was a lot 'cloud' in my urine. I'm on cipro for it and it's sort of clearing now. I also drink cranberry juice and honey and cinnamon mix at least once a day. The stent in my urethra gives me slight pain when I void a lot of pee at once, but that doesn't bother me much as the voice of reason tells me it's all down to the change of the position of the bladder inside.

I'm expecting the district nurse this morning, although I really don't know what to expect from the visit. I'm not wearing any dressings any more and I'm fine changing the bag. Hm...

I hope I get through this one day and be well again. I'm soooooo looking forward to it.

:depressed:

Me

x
 
Hiya,
I'm new to this but am so stoked I came on here and read all your posts and followed your journey, Ari, now and continuing. I am awaiting a small bowel resection and strictureplasty on the 4th April and am extremely nervous (that is the biggest understatement of all time). It is my first op and I have 3 very small children. Before reading all your positive upbeat posts I was very worried and quite low about all the negative sides of the surgery, like pain, recovery time, infection possibilities etc. But now I'm feeling ok. I can see here that for those of you who have had very similar ops to mine you are all really glad you did. A big fear for me is to wake up with an unplanned bag!!!!! Just really can't imagine it but I guess in the big picture it is not so bad since it's reversable.
The surgeon has told me that he isn't sure if he is going to do the strictureplasty of 40cm or just cut the whole lot out. He said he can't make that decision until he has it all out and can see if I have fistula's still. If I do then he can't do the strictureplasty. I guess I'll find out on the other side!!!
Ari I'm so so so happy you are feeling so much better. You deserve to. I think we all do. Take care of yourself and I'll keep following your updates.
Also,
Can anyone tell me the ins and outs of prednisone and surgery??? I am currently on 25mg - it was 30mg two days ago. I have been advised to drop it by 5 mg every 5 days so it is as low as poss for surgery. I figure that if I go onto a more liquid diet I have time to get down to around 10mg just before surgery. Is this still really high or not? I'm a little worried about this as last time I got down to 15mg I had a flare and got bumped up again. I really don't want this to happen right before surgery. Any advice or knowledge on this would be really appreciated. Thanks.
 
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Hi Jen. Thanks and big hugs. I am feeling a lot better, but I'm still fighting an infection of some sort and I'm not sure what's causing it. I'm going to see my GP today. Hopefully they give me some antibiotics to kill the bad guys inside me. x

Hi Butafli. As I see it, there is no point trying to wean off of pred at any cost before your op. What will happen is that you'll tell your surgeon you've been on pred and what they will do is switch you over to iv for the op. I was on 10mg pred before the op and what they did was give me 400ml of hydrocortisone on the table. They will do the same thing to you as that is the only sensible thing to do if they want to keep you alive.

The post-operative healing while you are on steroids always carries much higher risk of infection as your immune system is slow to react and in reality you may feel well and the bad bacteria inside you may be growing like mad at the same time. Please, do watch out for any signs of it, like low grade fever and not feeling your normal self, tiredness and so on.

That said, I think you've reached the point of surgery and the sooner you have it done and over with the better. If I had a say in it I'd opt for bowel sparing techniques like strictureplasty, but ultimately the decision lies in the hands of your surgeon and will be based on what they find once they cut you open.

I wish you best of luck and not too many complications, and remember to walk a lot after as it speeds up the motility. x
 
Ari,
Have they reported the MRSA infection to infection control? This is not your immediate problem, I know. MRSA can be devastating, I am so glad you are overcoming it.

I was just bustin' them a bit for you in my last post. Sorry about that! (kinda') my husband was sitting across the room making a list of what we needed to get done, I started giggling for some unknown reason and typed it all down. I just thought it was amusing that the reason I am so rushed is because I am so rushed. So, you now know why I said all that! I hope.

Good luck
Michele
 
Yeah Ari, I had a UTI infection and the staph infection. Actually I presume it was staph as the GP never would tell me what it was. They just put me on stronger antibiotics. The infections set me back 2 weeks from returning to work, so I was well ticked off. Especially as both were preventable had nursing staff taken proper precautions! Hope the GP can sort you out.
Misty
 
Hey Ari,

I have been following your journey and am so happy to read that you are finally home after all you have been through. I hope things continue to improve and you can knock the persisting problems on the head!

Just out of interest in regard to your infections (not the MRSA one). Matt will be having a resection on April 7 and the Prof said on his recent visit that he will be on Flagyl for 3 months post op. I guess they haven't mentioned this sort of regime to you?

Sending loads of healing (((HUGS))) and (((THOUGHTS))) your way.

Take care mate, :hug:
Dusty
 
Hey ari
hope your good
i was 6 stone when i had surgery and haven't been under 9 stone since your be amazed at how good your feel x
 
Ari said:
Hi Jen. Thanks and big hugs. I am feeling a lot better, but I'm still fighting an infection of some sort and I'm not sure what's causing it. I'm going to see my GP today. Hopefully they give me some antibiotics to kill the bad guys inside me. x

Hi Butafli. As I see it, there is no point trying to wean off of pred at any cost before your op. What will happen is that you'll tell your surgeon you've been on pred and what they will do is switch you over to iv for the op. I was on 10mg pred before the op and what they did was give me 400ml of hydrocortisone on the table. They will do the same thing to you as that is the only sensible thing to do if they want to keep you alive.

The post-operative healing while you are on steroids always carries much higher risk of infection as your immune system is slow to react and in reality you may feel well and the bad bacteria inside you may be growing like mad at the same time. Please, do watch out for any signs of it, like low grade fever and not feeling your normal self, tiredness and so on.

That said, I think you've reached the point of surgery and the sooner you have it done and over with the better. If I had a say in it I'd opt for bowel sparing techniques like strictureplasty, but ultimately the decision lies in the hands of your surgeon and will be based on what they find once they cut you open.

I wish you best of luck and not too many complications, and remember to walk a lot after as it speeds up the motility. x
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Thanks for that. It's just so confusing when you get specialist people telling you different things. I dropped it by 5mg 2 days ago and had sch a bad night last night with sweats and gurggling and pain. Didn't realise 5 mg can do so much!!! And after what you have just said, whats the point in putting myself through the next 3 weeks of hell even before surgery. I just wish I wasn't on such a high dose pre surgery. But oh well, what will be will be.
Hey are night sweats temps??? or infections??? or just part of this wicked disease!!!!?
 
I thought night sweats were just part of my menopausal symptoms,...but noooo....after surgery they stopped! So it was infection and flare. Mind you, I had night sweats for months and months, never knew it was a crohns thing! Until afterward.
Night sweat free!!!
Misty
 
butafli said:
Thanks for that (...) had sch a bad night last night with sweats and gurggling and pain. Didn't realise 5 mg can do so much!!! And after what you have just said, whats the point in putting myself through the next 3 weeks of hell even before surgery. I just wish I wasn't on such a high dose pre surgery. But oh well, what will be will be...
Click to expand...

It's good to be on as low a dose as possible, but I wouldn't do it if it were to give me terrible pain and/or gurgling which, btw, means you have a stricture and it will give you grief any time you go down. The 400ml of hydrocortisone I mentioned is a one off and they usually wean you down to your normal dose over a week or so.
I'd try to go down again after 10 days perhaps, but if you end up having pain and/or other things you hate go back up and simply wait for them to fix you.

MADiMarc said:
Ari,
Have they reported the MRSA infection to infection control? This is not your immediate problem, I know. MRSA can be devastating, I am so glad you are overcoming it (...)I just thought it was amusing that the reason I am so rushed is because I am so rushed. So, you now know why I said all that! I hope.

Good luck
Michele
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They go by the book here and I’ve no doubt they have reported it to whomever and noted it in my discharge papers.
As to you rushing I can only laugh with you. Yeah, definitely the reason you’re so rushed is because you’re so rushed. ;)

Terriernut said:
Yeah Ari, I had a UTI infection and the staph infection. Actually I presume it was staph as the GP never would tell me what it was. They just put me on stronger antibiotics. The infections set me back 2 weeks from returning to work, so I was well ticked off. Especially as both were preventable had nursing staff taken proper precautions! Hope the GP can sort you out.
Misty
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I just don’t know what to ask for when I go and see my GP. I could go in there and demand treatment for MRSA, but I’m not very bad and the advice from microbiology is to treat it only if septic. I mean I don’t mind paying for the blooming antibiotics as long as they stop the puss building up.

Yeah, it’s all preventable and in my case I shouldn’t have let them take the drain out for it was still active. I’m hoping it’ll resolve spontaneously or perhaps my GP will be able to give me some good antibiotics to kill it inside me. Why do I get the feeling it’ll set me back a little more than 2 weeks???
xxx

DustyKat said:
Hey Ari,

I have been following your journey and am so happy to read that you are finally home after all you have been through. I hope things continue to improve and you can knock the persisting problems on the head!

Just out of interest in regard to your infections (not the MRSA one). Matt will be having a resection on April 7 and the Prof said on his recent visit that he will be on Flagyl for 3 months post op. I guess they haven't mentioned this sort of regime to you?

Sending loads of healing (((HUGS))) and (((THOUGHTS))) your way.

Take care mate, :hug:
Dusty
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Hi Dusty,

Thanks for your healing hugs and thoughts. Sending mine right back, especially to Matt. Hope everything goes well for him. :hug:

I had a visit from one of the hospital gastro docs and he suggested a 3 week metronidazole (flagyl) regime, but it was changed by the surgeons after he had left. I didn’t even get the first dose of it. He also suggested pill cam, but the surgeons said it was pointless until my stoma has been reversed in September.
X

Emma England said:
Hey ari
hope your good
i was 6 stone when i had surgery and haven't been under 9 stone since your be amazed at how good your feel x
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Hi Emma,

Yeah, I'm eating like crazy and putting on weight too. I’m 5’11”and up from 9.6 to 11.5 stone in a little more than 3 weeks. It looks like my body has learnt its lesson from the past experience and is trying to preserve as much energy as pos. for later. x

Terriernut said:
I thought night sweats were just part of my menopausal symptoms,...but noooo....after surgery they stopped! So it was infection and flare. Mind you, I had night sweats for months and months, never knew it was a crohns thing! Until afterward.
Night sweat free!!!
Misty
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Just to be different I started getting mine after the op. I think it's all to do with the infection and judging by how I feel the little pocket of puss is back to bug me again. My worst enemy seems to be my own body. I never get high fever and the temperature rarely reaches 37.5/99.5 which is enough to make me feel rather rough. In fact when they first found that pocket of puss my temperature was no higher than 37.1/98.8. They drained over 200ml of funny looking stuff and the docs said it would make a normal person go into a coma... not me. I only got some pain under my stoma.

Sorry for such a long post. You all take care of yourselves.

Me

x
 
Hey Ari,

How do you feel about the differences between the surgeons and GI's opinions?

Just my two cents worth, naturally the surgeons are great at what they do........cutting, but generally they aren't up to speed when it comes to the ongoing care of IBD. We have been fortunate with Matt in that the surgeons and physicians work together but too many times I have read the statement from a surgeon, "Your Crohns is now gone, you don't need to take medication any more". Of course this is a very personal thing but I personally would follow the lead of the GI not the surgeon. What do you think?

Dusty. :)

(The Prof that has set the post op regime is a GI).
 
Hi Dusty,

I was on iv co-amoxiclav for my uti back then and the only other problem I had was the pocket of pelvic puss which couldn't be cured with flagyl, so I think the surgeons were right to stop it.

Gis know more about treatment available and surgeons know more about cutting and I want it to stay that way. :) However, 3 months on flagyl sounds a bit long so please watch out for any side effects, especially the tingling or numbness in the hands or feet they mention.

Me :)
 
Yeah, Misty, thanks, not bad, not bat at all...My temp is ok-ish and the only problem I have is the uti, but positive vibes are here and so is my appetite.:)

It's been nearly 3 months since your op and I've been wondering how you doing? Any pain? Nausea? Hope not...

I'm afraid I may get used to eating everything I like and when they join me up again in Sept. I'll be begging for the bag to return like many before me.Grrr...
 
Hey Ari,

So good to hear that things are still stable! Keep chuggin along mate....:)

Yeah to the whole Flagyl thing. He has been on Flagyl since the beginning of January, ya sorta between the devil and the deep blue sea 'cause it seems to be doing the job. Hmmmm maybe I'll just hide my head in the sand for now! :wink:

Take care, :hug:
Dusty
 
Hi all,

Earlier this week I developed a patch of irritated, weeping skin under my stoma :pale:, so I went to see my stoma nurse and she gave me some cream which helped a bit and changed my bag. :thumright: She also swabbed me in my nose, throat, behind my ears, did my forehead, armpits, groin and my stoma. :eek2: `Will see what grows from that...

Me
 
Ari, bummer! I keep getting what they call 'dehisense' or something. It is where the skin is ripping away from my stoma. Painful as hell. No cream, just a powder given to me.

Hope no infection for you!

Misty
 
I just wanted to check in and see if you are doing okay. Hopefully the infection is cleared up and the pain is lessening. Hugs to you!
 
Hi all,

@ Misty. Bum. :sorry: First thing I did was google that and there's an interesting article about it on wiki http://en.wikipedia.org/wiki/Wound_dehiscence. I think it wouldn't hurt if you tried supplementing some vit c and perhaps collagen. You could go to Holland & Barrett. They want to draw people in now so you can get them cheaper, buy 1 get 1 for a penny or something.

I didn't know there was so much acid in my intestines. Grrr...
Take good care of yrself. x :hug:

@ Andi. Thanks. :rosette2: I'm doing much better now. I'm taking lots of stuff to help my immune system to get in shape and fight them baddies inside me PROPER, I mean no prisoners, I want'em all dead and burried this time. Seriously, something is working as the fever is gone (good f***ing riddance to that) and I am much much happier. I've stopped all the pain killers and steroids and want to go back on LDN pretty soon.:thumright::thumleft:

Hope you have a normal day, considering what yr going through with yr family and all. x :hug:

Me
 
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Thanks Ari. Mine isn't as bad as the article makes it sound thank goodness!
But yes, no doubt I'm low on vit C among other things!

Glad to hear you are taking good care of yourself.

Misty
 
heya ari just seeing how your doing, im glad things are getting there even tho its slow.. make sure and take care of your self and take it easy..
 
I went to bed a tad early last night with a rather bad flank pain and I woke up at 11pm, put my hand on the bag and (Jesus, Mary and Joseph!!!) it had leaked. :eek: My top soaked through and left a stain on the duvet, the poo was coming out of the bag, not pouring out, but oozing slowly.:thumbdown:

I got up quickly to the thought of having a cracking night with so much fun in the air and went to the bathroom. I ran the bath (that's probably one thing I can run), took the bag off, and got in the water to clean it all up. My stoma nurse gave me a tube of Coloplast barrier cream (brilliant stuff) which I applied thinly and then sprayed it with 3M Cavilon which makes it go dry in no time. I stuck the bag on and am now sitting in the bath not sure if I should go back to bed or not.

My partner, Chris, is an angel and why she's stuck with me all the time is a mystery. She got up as well and cleaned the stain off as much as she could and she even offered to bring me something to drink in case I needed any. She's asleep now and I don't want to wake her up. I think I'll go and sleep in the lounge for the rest of the night...

@ Misty. Thank God yr not as bad as the article makes it sound. :thumleft:I'm breathing so much better now.
Men, we look for solutions instead of just listening, that's just what we are and now I'm thinking maybe vit k is the missing ingredient...Hm...

@ Andi. I just love it.:thumright::thumleft: I have a little boat which takes me all round the island and sometimes a little further out, but that's only when I want to catch some decent bream or pollock. I'm really looking forward to going out, but I need to be a little stronger for that.

@ spcwife23. Thanks for that. :rosette2: I'm trying, but somehow I just can't get over them little problems and complications. I'll get there in the end...I hope...

Sorry for such a 'crappy' post :)
 
Your first leak and you got through it didnt you? Everyone says it's bound to happen. And some folks on here have some interesting tales about it. I have been lucky so far, or perhaps a light sleeper, I've caught it just it time. But I did have a little leak at work...runs right down your leg and it is AWFUL. But we have to pick ourselves up and move on. It still beats going to the loo 20 times a day and not making it there in time.

I've heard the barrier paste is good. My stoma nurse gave me barrier rings due to the dihesense. And so far so good!

Yes Ari, it's all the little complications that really start to get to you. I understand full well what you mean. After awhile it really gets you down. As I type this I now have full blown flu to add to it because my immune system is shite right now. And the Dr wants to put me on Imuran? HA! Needless to say I havent filled the prescription yet.

I do get thru all these setbacks knowing that by gawd tomorrow is gonna get better. And I refuse to give in. There are so many folks on here that have been through the same things and they got better in time. I guess that is the key....time. And patience isnt my virtue. Bet it isnt yours either?

Hope you feel better every day.
Misty
 
Blood ok. Kidneys ok. Yippee. :mademyday:

@Misty. Did you ever try LDN? It boosts your immune system...or so they say. :hang:
 
@Misty. Did you ever try LDN? It boosts your immune system...or so they say. :hang:[/QUOTE]

What is LDN?

And GREAT news on your test results! Whoop!

Misty
 
Low Dose Naltrexone. There's a subforum over here http://www.crohnsforum.com/forumdisplay.php?f=32 and you can also find some more reading here http://ldnnow.co.uk/ or http://www.ldnresearchtrust.org/. LDN is an opioid receptor antagonist hailed as a wonder cure for all sorts of ailments because it boosts your immune system. I make my own. If you want to get it take as much info about it with you as you possibly can and go and see your GP. They will be more willing to give it to you if you ask for a small quantity to start with. The pills are 50mg each and will last a long time for all you need is 3-4mg a day(alkies take 100-200mg a day). I had to change doctors to get mine. :)
 
Thanks Ari. I will check into it some more. It does say it's less effective if were on imminosuppressants though. Dr wants me on em...I dont want, at least right now.
Misty
 
They would counteract each other so no point. If your immune system is shite I would stay away from your doctor. :)
 
hey Ari
just read all your posts. I avoided it the longest time as i am expecting surgery but it was a happy ending. i thought it would be about horror stories.
glad you are well - i liked when you were eating everything in site...funny...lol
glad you are doing better :)
wendy
 
Hi Ari,

Delighted all has worked out well.

Maybe you should change the topic - right now it sounds pretty ominous - as if its something you regretted doing :)

about LDN - see ldnscience.org - seems its not an immune stimulant - but an immune regulator - somewhat different, but same results, i.e. normalizing a haywire immune system.

I wish you perfect health and luck in all you do.
 
Hi all,

Not too many changes this week. I went to see my GP on Tuesday and she took some urine for testing. Haven't heard from her yet. I keep fighting MRSA on my skin and I'm not sure I'm getting anywhere. I've no fever, but the thought of having it in my stoma untreated makes me uneasy to say the least.:hallo3:

Hi Wendy, it's hours now before your surgery. When are you going to the hospital? Hope everything goes well for you. :)

Hi Hopeful, not sure about changing the topic yet. I'll do it if everything goes well once my gut has been reconnected in October.


You all take good care of yourselves.

Me :panda-wave-t:
 
Hey Ari, I go in on Tuesday at 9:00 am. Not that big of a deal ...I am hoping a lot that it relieves pain and gives me answers. I think I am most hopeful about them taking biopsies as well.. thanks for asking.

I would imagine having MRSA in your stoma would be worrisome!! I hope they start treating you for it soon!!

Take care
 
Hi guys. Well, I'm ok and MRSA has not killed me.:thumleft: It never turned septic although there were times when I thought it would. I guess I'm one of the lucky ones when it comes to staph infections. :luigi:

I have an ongoing uti which doesn't seem to want to go away. I've been on cephalexin, co-amoxiclav an cipro for it. Perhaps it's all to do with the stent in my left ureter. Luckily, it's coming out this friday and I'm sooooooooo looking forward to it.:shifty-t:

My stoma has prolapsed and is sticking between 3 and 5 inches out, but I've found my own way of changing the bag so that doesn't bother me much. I'm also wearing a supportive elastic band around my waist which holds the bag so there's less pressure on the adhesive bit and the skin around it. Oh, joy!!! The fun never ends when you have this thing called Crohn's. :rolleyes:

Hope you are all doing well.

Me

:hug: :eek:utahere:
 
Ari, bless you! Sounds like you are still going thru it alright. I will bet your UTI does go away after your proceedure tomorrow.

I have a HUGE hernia now. And they wont touch it until I have reversal surgery. They gave me these control thingy's....blow out every time. Sigh.
I asked for a belt, she said I had to wait til June to be fitted by the company.
Grrrrrrr. :crabby1:

Hope you get better and they push your stoma baby in while you are out cold!

Misty
 
I hope you are doing much better! I remember the recovery time for me seemed long, but looking back it wasn't so bad.

My intestines were shoe string like by the time i decided I'd had enough. My GI and surgeon were shocked that I had held out so long, but looking back, i was an idiot because it didn't change the inevitability of needing surgery - I was just scared. I had almost two feet taken out. The surgeon couldn't get all the disease, however, so that is why I'm battling or having a flare up (also due for the most part my mom's death in march). Stress plays a role in this disease. Anyway, I ate like a rock star not too long after and was so relieved for a while to get a taste of what it was like to feel normal or disease free, rather. It was worth it for me. Now, if I can just get back into remission again....

Take care and hang in there - it will get better.
 
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@ Hopeful. Thanks. Yeah, the first urine sample was very milky, I mean cloudy, and all they managed to find was pus and traces of blood in it. I asked my GP to do another one and they managed to grow psuedunomas, apparently susceptible to cipro. My urine seems to be clear now, but dear me, I've drunk 2 bottles of vinegar (2 spoons a day), a lot of cranberry juice, fresh nettle brew (brill stuff) and regular NAC to help my kidneys fight the bad guys. :)

@ Misty. Thanks. I'm so sorry to hear about your hernia. I bought one of them ladies elastic belts, one of those 5 inch wide ones fitted with a wide leather buckle. Got it at the car boot sale for a quid and it serves the purpose.

I really don't know if I should make a fuss about my stoma or not. I mean, if it's not dangerous then I can wait till October for the reversal, hm...

I'm tired and begging for some sleep. Hope they give you that belt asap. Take good care of yourself. :)

@ Leeannmead. Thanks, I'm doing a lot better now. I'm still eating like mad and I've put over 4 stone of weight on since my op in feb. I am officially overweight now, but only just, so no worries there. I hope you get back into remission soon.

My eyes are shutting. Hope ya'll have a quiet night and sleep all the way through it. :)
 
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Hello Ari. I am a new member to this wonderful forum and its great to see all the well wishes and support you have recieved from fellow crohnnies. You certainly have had your fair share of set backs throughout the pre and post op period and i would like to start by saying fair shout for your attitude. Throughout you have managed to be extremely positive and sometimes quite comical considering the mental rollercoaster you have obviously been on. I havent had to have an op yet although it has been lurking in the background for some time. One can only hope that i get just as much support throughout should it come to that in the future. It is now May and im curious to know how you are feeling about it all now. I am having an MRI on the 26th of May to determine the lengths of stricturing and how best to approach any further treatment for them. I am nervous as hell as we have come to a bit of a standstill regarding where to go from here. Unfortunately remicade is probably only going to cause a blockage considering where the affected part of my bowel of concern is. If the stricturing isnt too long a balloon(stent) like thing can be inserted to try to open things up a little. The only other option should the measurement of affected area not meet requirements is an op. I am trying not to think too much about any of the options at the moment as i would rather deal with the facts and then take it from there. Speculating about the what ifs is only going to cause me to overthink things and with crohns as we all well know stressing is going to make me suffer even more. Now i am going to sound like a bit of a hypocrite here but.... one can only hope should an op be required they dont go in and discover things are worse than they first expected. I hope i can meet whatever challenges lie ahead with the same approach as yourself. I feel i need to make mention about your other half who got up during the night to help clean up, Im sure she has probably been up many nights with you thoughout too. I am fortunate enough to have a very understanding husband who has spent many nights up with me trying to soothe me whilst im suffering in pain or puking. It helps no end to have that great support from the ones you love who must at times find the ordeal quite frustrating to watch. My husband often feels so helpless and wishes he could do more, but he does a great job with our almost 5 yr old daughter and normally works all day the next day after. Sometimes i think the ones around us need to be acknowlegded for their support. Well i am starting to drift a bit now and without taking away the true reason for my post, I am interested in how you are, i just wanted to share a little bit about me with you as i am a newbie and wish i could have been around to help support you throughout your trying times. Take care. Should you be intersted i will keep you up todate with what occurs in the future. Loving the forum
 
Hi Snookums. Yeah, you need to try and have a positive attitude, even when you think you're in deep in sh*te and there's no light in the tunnel.

Unfortunately, balloon dilation was not an option for me, but hey, they gave me a bag instead. :) Now, I've got something only a small percentage of my society can say anything about and I'm slowly beginning to like the freedom of eating anything I like that comes with it. :)

Yes, Christine has been very supportive and I appreciate it very much. It's sad when you read about people who have been abandoned, left to deal with the world alone only because they got Crohn's. It's not a death sentence, and if you love someone you'll stay with them through thick and thin as they say.

We're all interested in your progress and personally I hope the MRI brings good news so they can stretch that narrowing and you can avoid the knife for a long time.:)

Now, I wanna talk about me me me. Who's important here? Me me me. :) Well, there's not much to say tbh. I'm waiting to see an anesthetist and (my luck)there had to be an emergency there. I've got MRSA, which means I'm the last in, so if anything unexpected crops up I'm usually left on the back burner, but I've crossed a few things here so hopefully I'll leave the hospital without the stent this time.

Talking about sod's law...I had to change the bag first thing when I arrived...Grr.

You all take good care of yourselves.

Me.:)
 
Hello Michele. :) Thanks for stopping by. I'm guilty of leaving the forum for a few weeks. Bad Ari. <He slaps his wrist> :)

Hope yr doing fine. :bigwave:
 
All went well and I woke up 45 minutes later asking them when they were going to do it. :) It really is funny how the general anesthetic screws up your sense of time. I'm sore, but the stent is out and I couldn't be any happier.

Back home and off to bed soon. :)

Misty, I see you are trying to get LDN. You could ask your GP for a few pills of Naltrexone and prepare your own. The pills are 50mg each. Just take one of them and dissolve it in 50ml of distilled water and use a doing syringe to measure your own dose. Simples :)
 
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Hi Ari! It's good to see you back buddy! I hope you have been happy and on the mend. :)
 
Keep on feeling better and better, Ari (have I mentioned how much I love the fish picture? It's pretty fantastic).
 
@ Misty. Did you manage to get it???

@ Andi. Yeah, thanks I'm getting better and better. I'm still eating a lot and I've put nearly 4 stone on weight already. :)

@ Entchen. Yeah, thanks, I love fishing. :) It's a kind of sea bass we get over here. There's less and less of them each year. :(

@ Michele. Yeah, thanks, and good riddance. It was causing my uti. I'm ok now...well, almost :)

Thank you all. I've got a follow up app with my surgeons over here on friday. I hope they can do something about my stoma. God, it's friday the 13th...Grr...:)

You all be good.

Me :)
 
With regard to your original post Ari, certainly IMO surgery is an absolute last resort. Because apart from the obvious risks involved the cost of surgery are astronomical compared to treatment. In UK that alone governs the thinking of specialists usually. In these days of austerity its understandable IMO.
But in days gone by perhaps it wasn't always the case.
As an aside I've heard that bowel surgery of years ago used to be accompanied quite often by a temporary colostomy. However again because of the size of the surgery & again increased risk & obviously vastly increased cost its now become more of only if its absolutely necessary.
 

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