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Crohn's Disease Forum » Surgery » Surgery number 2 required and im bricking it


04-15-2010, 09:11 AM   #1
Rescue Me
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Surgery number 2 required and im bricking it

hi all

a noob on here but unfortunatly not a noob to crohns..

Had it since my early 20s, had a operation in 2004 to remove some of the small bowel and was lucky enough to be sewn back up and not need a stoma bag.

Fast forward now 6 years and im super poorly, i cant honestly remember the last time i didnt feel sick or in pain, my crohns started to flare up on my honeymoon in September 2009 and has gradually gotten so bad i litterally cannot eat now for the fact i end up with severe pains in my stomach and vomit and all the other usual symptoms..

tried all the meds and also infliximab but i think as the disease has gotten worse over the last few years and wasnt treated correctly they say the scans show 15cm of my small bowel is too scared now and wont allow food through and will need removing.


Appointment to see surgeon is planned within the next 2 weeks, maybe sooner but i am really scared now regarding the operation and the thought ill need a stoma, even if its only for a temp period.


Not sure what im asking for really, maybe reassurances of the people that have had the operation and have ended up having to have a stoma, temp or perm.

How are you coping with having one? Im self conseuis at the best of times but the thought of pooping in a bag on my side fills me with fear

also scared about the op incase it goes wrong. Espec now i just got married and havent even had the chance to enjoy being with my wife properly and enjoy life


I just want the pain to stop and realise the operation is the last option ive got really since none of the meds helped (due to being given to me too late i guess)


Thanks
Rescue Me, your uk forummer..
04-15-2010, 09:16 AM   #2
Nyx
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Hi, sorry to hear you have to through this, but you'll be amazed at how strong you are! I have a permanent bag And, yes, I'm smiling! It's been the best thing that's ever happened to me! Once you get a routine down, you don't even notice it's there. It takes 3 minutes to empty it (as opposed to spending hours in the bathroom previously), and you'll feel sooooo much better. No pain, no diarhea, basically no Crohn's! Of course, there are issues to get around, but you'll find that you're feeling so 'normal' that those issues are easier to deal with because you don't feel like crap!

I hope your appointment goes well, welcome to the forum, and any questions, fire away! We're all here to help
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

04-15-2010, 09:51 AM   #3
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Thanks for the kind words and quick reply. Im not sure why im so scared this time as i have been through the operation already once and that had the added problems of a fissucle (spellin maybe wrong) had also attached itself to my bladder so i was passing food when i went for a pee which needed fixing too.


The fears I have regarding the stoma are
a)the cosmetic look, how will this affect me playing sports/going gym/swimming

b)the feel of having this new 'bag' attached to my side, how do you get used to it, are you not scared of catching it or it ripping off accidently?

c)maintainance of the bag, i guess unless you have one its hard to fathem..


They havent told me i will deffo have one but its a 50/50 chance and i have already been lucky once before so im not confident ill be so lucky on this occasion..

Might be a silly question, if you have a bag, this then replaces the fact youll need to use a loo to poop yes? If thats the case your bottom becomes a redundant feature (save on the cost of toliet rolls i guess eh)


Thanks again
04-15-2010, 11:04 AM   #4
Astra
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Hiya rescueme
and welcome

I hope Cindy can alleviate your worries and concerns, she has a wonderful positive attitude about her Oscar! glad you found us tho, and any other questions, just fire away,
Where in the UK are you?
lotsa luv
Joan xxx
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BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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04-15-2010, 11:27 AM   #5
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Hiya
Im over in Manchester, the city of rain and clouds

Just hoping to get this operation dusted off and get healthly for summer now, A fresh start and some sunny weather is what I needs I think x
04-15-2010, 12:03 PM   #6
Astra
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oooo not so far from me then!

Yes, you'll be sound for the Summer, something to look forward to!
(if we get any sun)
xx
04-15-2010, 04:03 PM   #7
Nyx
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Rescue Me said:
Thanks for the kind words and quick reply. Im not sure why im so scared this time as i have been through the operation already once and that had the added problems of a fissucle (spellin maybe wrong) had also attached itself to my bladder so i was passing food when i went for a pee which needed fixing too.


The fears I have regarding the stoma are
a)the cosmetic look, how will this affect me playing sports/going gym/swimming

b)the feel of having this new 'bag' attached to my side, how do you get used to it, are you not scared of catching it or it ripping off accidently?

c)maintainance of the bag, i guess unless you have one its hard to fathem..


They havent told me i will deffo have one but its a 50/50 chance and i have already been lucky once before so im not confident ill be so lucky on this occasion..

Might be a silly question, if you have a bag, this then replaces the fact youll need to use a loo to poop yes? If thats the case your bottom becomes a redundant feature (save on the cost of toliet rolls i guess eh)


Thanks again
To answer your questions..

a) It won't affect you at all in regards to swimming, exercising, playing sports. The only thing you need to be aware of is if you're playing contact sports not to have anyone run into it as you can damage it. But, they make hard stoma caps to help in that area. As for swimming, all you need to be aware of there is that if you stay in too long your flange could come off (it's just stuck to your skin like a bandaid so the stickiness does become less effective in the water). Just bring a spare flange with you and you're good to go I haven't had one fall off yet, and I've been swimming, in the hot tub, and taking regular baths and showers. I'm also going to experiment with using some waterproof bandage to see if that helps (haven't tried it yet though, but I'll let everyone know how it goes).

b)Like anything, you do get used to it with time. At first it felt 'heavy' and strange. But now, 4 months after my surgery, I don't even notice it. I'm not worried about it getting caught on things and ripping off as I have a very good 2 piece system that locks in place. I can pull on the bag and it doesn't come off. Besides, for the most part, my pants are covering so there's no way it can get caught on anything.

c)Maintenance is very easy. There's an opening at the bottom of the bag that is either secured with a clip, or with velcro (I have the velcro ones). All you do is open the bag and empty the contents into the toilet. If you need to change the entire bag, you just take it off the flange, empty it, and clean it out. It takes no more than 10 mins to do a really good clean of your bag; with soap and everything. As for the flanges, I only change mine once a week (this varies from person to person). To clean the flange I just run a Q-Tip around the inside and I'm good to go. I find it's much easier than the hours I was spending in the bathroom before!

And about the tp and the toilet...well, you still need tp as you still go pee and you still need to clean your stoma off when you change your bag (you'll have mucous that needs to be wiped off, plus any wayward poo....lol). And the poo in the bag has to go somewhere, so the toilet for pooping is still necessary (unless you can afford to buy the bags you just throw out after it's full) But, you're right...the anus is pretty much only there for decoration I still have to go back and have all my rectum removed as it's now a cancer risk (my bag's permanent).

Hope this answered your questions

Last edited by Nyx; 04-15-2010 at 04:07 PM.
04-15-2010, 07:08 PM   #8
kenny
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Sounds like you have the same kind of crohns activity that I have. My Doc calls it Penetrating Crohns and has cautioned me that it will likely effect my quality of life sooner rather than later. Like you said those internal fistula, like one to your balder, really make for some nasty surprises.

I was just wondering if over the past 6 years your have tried any of these Crohn's diets or if you have eaten like you did before you got sick? I want to get all I can out of this surgery but I feel so good right now that I think I can eat almost anything I want to. But should I?

Also I did not have a stoma bag but I did have a bag with a drain line hanging off me for 4 months or so. 2 of those fistulas went into my abdominal wall and made big pockets of infection. When the infection got drained poo started coming out so they had to leave the bag. It was not so bad once I got used to it. But I was not sorry to see it go either
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04-16-2010, 03:17 PM   #9
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kenny said:
Sounds like you have the same kind of crohns activity that I have. My Doc calls it Penetrating Crohns and has cautioned me that it will likely effect my quality of life sooner rather than later. Like you said those internal fistula, like one to your balder, really make for some nasty surprises.

I was just wondering if over the past 6 years your have tried any of these Crohn's diets or if you have eaten like you did before you got sick? I want to get all I can out of this surgery but I feel so good right now that I think I can eat almost anything I want to. But should I?

Also I did not have a stoma bag but I did have a bag with a drain line hanging off me for 4 months or so. 2 of those fistulas went into my abdominal wall and made big pockets of infection. When the infection got drained poo started coming out so they had to leave the bag. It was not so bad once I got used to it. But I was not sorry to see it go either

After my first operation in March 2004 the only thing i was ever offered was pentasa which i declined as i didnt want to be on treatment tablets for the rest of my life (dont like taking pills unless i really need too)

I was never told to avoid eating any certain foods so my diet was pretty much eat and drink anything i wanted which i did (until now) from all the info ive read on crohns the majority says it various foods dont determine the effects of the disease tho some react bad to diary or spicy foods (I love both) so i guess the food issues lie with the invidual person.

Got a appointment on monday to see my IBD nurse and have been told i should be able to see the surgeon within a fortnight, then ill be able to get a date for the operation. as opposed to going under the knife ive been for the last 7 months since its reflared up badly i just long for a normal life now, the chance to play sport again, go out and socalise with friends and my wife without the fear of suddenly being poorly hitting you when you least expect it.



thanks nyx for the info, i havent actually seen a stoma bag in real life yet so i am yet to see how big it is blah blah blah but im gonna ask on monday if i can see a stoma nurse and then worst case scenerio i end up with one its not gonna be a shock

Ill keep the thread updated with my progress, if only for my own sanity
04-16-2010, 05:17 PM   #10
Nyx
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The bags vary in size, mine hangs just to the top of my thigh and it's about 3 or 4 inches wide. But you can get mini bags that are only about 3 inches long. Depends on what you want
04-22-2010, 01:49 AM   #11
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well its day9 today since i last felt really poorly, this is the longest ive managed to go without being sick or doubled up with tummy pains.

Seen my IBD nurse monday, its been 2 weeks now since she wrote her letter to the surgeon so im hoping its not gonna be much longer before i get to speak to him.

Its weird not being ill, I still feel tired half the time compared to when it is in full remission but half tired beats being poorly for now..

Managed to eat a chinese last night too, tempting fate eating it as id normally pay for my pleasure of that with 3 days of sickness and pain but so far so good..

I have also stopped taking all the meds they told me i needed, i accidently forgot to take them on my last night shift last week (the day before when i was taking them i felt awful) and since i havent taken any i have been feeling pretty good..... Hmmmmm
04-22-2010, 01:50 AM   #12
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Nyx said:
The bags vary in size, mine hangs just to the top of my thigh and it's about 3 or 4 inches wide. But you can get mini bags that are only about 3 inches long. Depends on what you want

would it be wierd to ask to see your stoma bag?
04-22-2010, 03:23 PM   #13
Nyx
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Rescue Me said:
would it be wierd to ask to see your stoma bag?
I haven't been brave enough to take a picture of it yet...lol I have a pic of my scar on a thread here somewhere though...lol
04-30-2010, 03:54 AM   #14
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Spoke to my Surgeon yesterday and found out he is one of the best in the UK for this type of resection operation which gave me a much needed convidence boost..

The date is set for 10th May, week on monday tho ill be admitted on the sunday 9th for pre op stuff..

Scared but excited too as the thought of the pain and sickness stopping and getting a normal life back after the pain of the operation goes..


They advised the % now of ending up with a stoma is around 5% unless they find a abcess of something horrible hidding away when they open you up which I dont think I have atm so im a lot happier now and reassured.

Ill update with more nearer the time, maybe thro in a couple of pics showing my recovery..

just wish it was this weekend now, the waiting is the worst bit for now. (till I get the horrid catherter)
04-30-2010, 10:45 AM   #15
Nyx
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I loved my catheter! With the catheter and the bag I didn't have to get out of bed at all!!! I think that's why they finally removed the catheter for me, to get me moving...lol I was still on the TPN so I was going pee every hour on the hour...god I hated that!!!! It's tough when you have 2 IV poles to drag around every hour. But, it was good for me in the end
05-02-2010, 01:22 PM   #16
Brad P
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Nyx said:
I loved my catheter!
Ditto lol

Lazy people would love it lol

Good luck on your surgery to the O.P.
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CD since 1987 - yearly flares
Sept 2008 - Small Bowel Cancer -> Tumor removed Oct 1st, 2008 followed by aggressive chemo (FOLFOX) Dec - May, 2009. 11 treatments.
October 2009 - Back to work, life getting back to normal
March 8th, 2010 - off work due to Crohn's, scarred stricture.
May 19th, 2010 - Roux en Y duodenal bowel bypass surgery (gastrojejunostomy)
October 2010 - Fully recovered, back to work...again!
May-July 2016 - Bad Crohn's flareup (apparently)
05-14-2010, 02:57 PM   #17
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Hi Rescue me,
I hope your surgery went well. On a funny note, I just "googled" the term "bricking it". In the US, had no idea what that meant! I do now.
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05-17-2010, 09:18 AM   #18
Astra
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CDDad said:
Hi Rescue me,
I hope your surgery went well. On a funny note, I just "googled" the term "bricking it". In the US, had no idea what that meant! I do now.
Ha Ha Joe, weird aren't we? lol

Hi RescueMe

hope your surgery went well and things begin to improve for you, let us know, as soon as you feel well enough
xx
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