Fistulas & abscesses forcing me to join the club - trading problems?

Hi all,

I've been lurking and reading the posts in this forum like crazy and I still don't know if I can wrap my mind around this. Looking for any insight or support I guess. Or, just spouting to others that may understand where I'm coming from. You all seem to have such a good attitude about your stomas but I'm not there yet. I'm still at the kicking and screaming stage. My surgery is scheduled for 1-3-14.

So, a little history. Today is my birthday, 37. OMG, I'm almost 40! I've had Crohn's for 13 years or so. A few years ago I had appendicitis and had to have a bowel resection at the same time. The past year or two I haven't been on any Crohn's meds - just supplements like Glutamine - because it didn't seem as though I had any real symptoms (aka, not in bathroom all day long, no gut pain). But, I do have a high tolerance for pain before by body decides to say something to me. My GI Dr. is great but pretty much is laid back and has the "call me when you flare" approach. Well, I never thought I was so I never called.

In Sept I started getting "tailbone" pain and my right butt cheek hurt so I saw the chiropractor. They thought it was my sacroiliac joint out. At the same time my bladder decided to stop working, fevers and chills began and my Crohns made an appearance via incontenance. The right cheek pain was the worst though and the bladder was scary. Saw my Dr. about the bladder/fever/chills - thinking UTI or something and she saw me limping, not sitting properly and had a cow telling me the bladder and bowel nerves go thru the lower spine and things could be pinched. Things deteriorated more, I couldn't even manage work cuz I couldn't sit at my desk all day. I went to the emergency room and the Dr. took an MRI and diagnosed me with a herniated disk in L4-L5 and referred me to a neurosurgeon for treatment. (Mind you he never did a visual exam). I waited a week to get in to the neurosurgeon who basically took one look at me and sent me to the ER and told me I had a huge abscess on my bum that needed drained NOW. He said I had the most minor herniation that all of his office staff probably looked the same on their MRI's too. Dad drove me to the ER (I was no longer driving by now) and they admitted me for emergency drain procedure.

From a back problem to a butt problem...a lovely misdiagnosis. So, this abscess I guess was a perianal abscess and the largest the Dr. had ever seen - the size of a grapefruit or softball. They drained 400ml from it and put in a penrose drain (which was awful). They called in a GI specialiast since I listed Crohn's in my chart who did a colonoscopy when they did a drain change. He said my Crohn's was indeed very active and my colon looks quite awful, some of the worst he has seen in quite some time. I was put on Imuran and Remicade and told I need treated for life cuz we can't trust my body to exhibit symptoms properly (this now being the 2nd major surgery finding Crohn's complications).

Recovery has been awful. I still cannot drive or work at the office. I am able to work half days from home on my laptop in bed. Life revolves around laying in bed or laying on an air mattress in the living room. I still can't sit properly 3 months later. And, the pain is back in the right cheek and now in the left cheek. An MRI shows a fistula forming inside the left cheek. The right cheek now has 2 pockets of fluid in it. I am also still wearing adult diapers because the drainage is unstoppable. And after a BM...yikes. Thankfully I only have a BM every 2-3 days.

The bottom line now is they have to go in and drain those 2 pockets again. I'm going to end up with another drain in me. (It took over 2 months to get used to the other drain - I'm on my 3rd one, a silk thread) An intervention radiologist looked at the MRI to see if he could drain it less invasively and he said no way. So, back to the OR for drains. And, they said as long as stool can get thru the fistula the original abscess/drain tract created that it will never heal and now I'm about to have a 2nd one so my only option is a diversion with a temporary colostomy.

The surgeon has been suggesting it all along. My GI has resisted until now, hoping the Remicade will heal it. He is afraid the ostomy is just another place for fistulas to form and when the reversal is done that is more wounds my body has to try to heal when it is already not healing well. But, in the face of these newest complications he has relented and feels it is the right choice.

I already feel like my life has come to a screeching halt as I knew it. I'm basically bedridden. I'm staying at my parents and have to be driven around and can't work in office. I wear diapers for Pete's sake. How in the heck is a colostomy bag going to improve my quality of life? I'm still going to come out of this with another hole in my butt. Like 2 isn't enough, I need 3 now. I'm so tired of stinking from the drainage and waddling around like a cripple. Is this stoma really going to help? Is it really going to do anything for these stupid fistulas and abscesses? Because I just couldn't take looking at my own guts every day for nothing.

There you have it. My lengthy pity party. Its been a journey and its not over yet and because this far has been so crappy I'm chicken to do the next big step regardless if I want to or not. Thanks for listening and I'll take any advice you've got to try to get thru this. Sorry this ended up so long.

Bless you all in what you cope with every day too!
Jen

I can't really comment on the needing to make a choice to have a stoma, as mine was not a choice. I had emergency surgery for a perforate sigmoid colon. But, as a result of that, I got my life back. I was basically house ridden as well - I had such bad peri-anal disease that I had to be near a bathroom all the time. I also had a fistula from my rectum to my vagina that was very painful and always had stool coming out of it (gross!!). The stoma healed the fistula (if there's no stool or air going through it, it just shrank down to nothing). My rectum feels much better, again because there's nothing going on back there. I also had a huge abscess on my left butt cheek prior to my surgery, and haven't had problems with those since.

I think that you need a break, and I think the colostomy will help with that. Honestly, they're pretty cool...lol My stool is normal (not liquid like an ileostomy) and it's really easy to take care of (again, much easier than an ileo). I've had mine for 4 years now, and I don't even notice it's there any more. Obviously it takes getting used to, and it is a major surgery that often takes months to recover from, but at least for me, it was worth it.

I guess the question is, what do you have to lose?

I hope this has been helpful in some way. Good luck!! Keep us posted with how things go. And of course, any questions, fire away!

Welcome scuffy and happy birthday!

It's not an easy decision by any means but a stoma may give you more quality of life. It's a pain in the abdomen rather than a pain in the butt however like Nyx said your body needs to heal and the constant flow of stool filled with bacteria is only aggravating your condition. A temporary diversion coupled with medication may be the answer.

There is no good solution, the drugs aren't working for you and you can't have endless surgeries. One of the best things about my ostomy is I'm not crapping myself 10+ times a day and living in diapers. Yeah I have this bag on my stomach but I don't need to run to the bathroom or change my clothes for the most part. It's given me more confidence to venture out and it's letting my body heal.

Thank you Cindy and No Guts. I appreciate the first hand experience with having an ostomy allow the other end to calm down and heal. I've been afraid they were just pumping me full of best case scenarios and not reality. I've had enough false starts with this to last me!

I didn't realize a colostomy is easier to manage than an ileo and it seems most stories on here are ileo related. All this bag burping, leaking, emptying in the middle of the night...seemed to be the norm and I just wasn't sure it sounded better than the mess I already have.

This all still seems like a shock as 3 months ago I thought my Crohn's wasn't even active. Stupid body, lol. I'm trying to be positive about this and am ok for 5 minutes then back to panic mode like a roller coaster. Thank you again for the words of wisdom. :worthy:

Hi I was very against having a stoma when it was suggested to me,I'm 24 with two young children and I thought I would be stuck in the house incase anything embarrassing happened but it has truly changed my life for the better.i can now take the kids out and enjoy myself.i have had the occasional leak but nothing too disastrous and getting up once in the night to empty is a small price to pay.good luck to you it's not as bad as it sounds

A colostomy is generally easier to manage but my surgeon said in terms of reversal an ileostomy is easier to reverse. I had the choice and since I hope to reverse I wanted the harder to manage short term but easier to get rid of long term option.

scuffy said:

I didn't realize a colostomy is easier to manage than an ileo and it seems most stories on here are ileo related. All this bag burping, leaking, emptying in the middle of the night...seemed to be the norm and I just wasn't sure it sounded better than the mess I already have.

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I never have to empty in the night (unless I'm sick), I rarely get leaks, but I do have to burp the bag quite a bit...I'm a gassy gal, what can I say? lol Burping is no big deal, you just pop the bag off and let the air out...easy peasy. I also don't worry about what I eat, I have no restrictions and have never had a problem with that.

I've not had fistulas or abscesses, so I can't really help with your decision. But I did voluntarily decide to have a stoma to improve my quality of life. I've only had the ileostomy a couple of months but I know I have made the right decision. (And I feel that way even though I had terrible complications from the surgery.)

Because I just couldn't take looking at my own guts every day for nothing.

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I think it's quite likely you won't feel this way for long, if you do have a stoma. The first time I saw mine without the bag, I was feeling awful from the surgery, it was massively swollen (which is normal at first, mine is now about a quarter of the size it started out), and the stoma nurse emptied two bowls of what looked like pure blood out of it (again, normal after surgery, but no-one had told me that). I felt so woozy the stoma nurse was worried I was going to faint, put the bag back on as quickly as possible, and told me that I wouldn't be leaving hospital until I could change my own bag without fainting. I was worried I was going to be in hospital forever! Needless to say, just a few days later I was changing my bag myself quite happily, and now I genuinely find it very interesting to see a bit of my insides on the outside! (That may be because I'm a little weird - but it's true!)

It's amazing what you will be able to adjust to, and if it does improve your quality of life, you may even grow to be thankful for it. You may also be surprised how many other people in your life will feel just the same about you with your stoma as without it.

A temporary stoma may be a way for you to try it, knowing that if it does turn out for the worse, you won't necessarily be unable to go back. I got to a place where my bowel problems were so bad, I thought, what do I have to lose? My life so often seemed to revolve around my bowel problems anyway, and a stoma offered a potential way out of that - in my case it has been worth it.

And I never have to empty at night - even with an ileostomy. I've had two leaks in the two months I've had it. I don't have to let the air out either - it does blow up a bit at times, but I've found it's fine to leave the air in until the next time I empty it. I empty it usually two or three times a day.

Thanks again to everyone for their insights. It does help. I think my biggest problem is I have too much time before surgery to make this into a bigger drama than it really is. I'm my own worst enemy. I could be productive and try to find the good in it, but clearly I'm not an optimist by nature lol. I prefer "realist" but some days I wonder if I'm not a full blown pessimist after all That's why I'm seeking your help to stay on the straight and narrow. I really do appreciate hearing your experiences!

Breathe in thru the nose and out thru the stoma. Ooohhhmmmm. My inner peace must be around here somewhere!

Jen

Jen
Not an easy decision by any means. I've dealt with fistulas for years, mine where in the scare lines from old operations (thats where they drained from). I had a stoma at first (1969) but kept prolapsing it so had a coke pouch done. I much prefer that than a stoma but that went bad so last Jan. I went under the knife again to get rid of the fistulas and coke pouch now it's back to a stoma. It's not a pleasant way to live but you learn to deal with it. My fistulas would close for extended periods of time but always came back the only way to get rid of them was to have those sections removed. It's been almost a year and all is well Humira has helped and having blood tests every two months helps me, my doctors check for flare ups.

Having a stoma isn't the worst thing in the world to deal with and 99.9% of people you meet will never know unless you tell them. It's a small trade off for getting rid of the fistulas and being pain free.

I wish you the best, stay positive things will always work out for the best.

Well, tomorrow is the big day. I've kept my mind off it the last few days to try to decrease my craziness but the liquid diet started yesterday (not an easy new years day!) so its down to the wire. I'm still quite mixed in my feelings about having this, but I'm so done with the deep-seated butt cheek pain from the abscess and all that goes along with it that this HAS to be an improvement.

Thank you all for sharing your stories and encouragement. What a great group of people are on here.

Cheers to you all in 2014!

Jen

Good luck tomorrow! Keep us posted on how you get on...

Good luck Jen! I've just had two setons placed to ensure fistula drainage and one fistula cut out, and am afraid that one day I will also need an ostomy as the abscesses and fistulas just seem to keep coming!

Lots of positive experiences and advice here, and lots of people sending good thoughts your way.

Laura

Good luck I hope it improves your life as much as it has mine

I hope all goes well!

Hi. Sorry to hear you're suffering so much. I've had countless abscesses and lots of fistulas. I couldn't imagine going back to my old life. It sucked. The ileostomy was a life changer. Hope all goes well.

I love my ileo!! It's been almost 2 years since I got mine. Rarely do I empty in the night and have only had 1 leak since being out of the hospital.

Thanks everyone for the well wishes. Surgery went well per the Dr. When draining the abscess they decided the silk seton wasn't big enough and went back to a Penrose drain. Not super excited about that since the last one caused considerable pain. The good news is I still have just one drain instead of having to add a second like they thought.

The colostomy went well too. Was able to do it laproscopically and not have to do big incision. Also, was able to do a nice loop instead of cutting completely thru. Everyone has oooh'd and aaah'd over how great it looks. I'll have to take their word for it. Surprisingly I'm coping with it well. I haven't lost my lunch looking at it, I feel sort of indifferent to it. Not feeling indifferent to the pain though. Holy moly my abdomen is seriously hurting. Especially with any movement, coughing, hiccuping etc. And any gas. Yikes.

Time for the nurse to help me to the restroom. Talk to you all later.

Hi scuffy
Thank you for creating this thread and I hope that your recovery is going well. I am in a similar situation, requiring decisions about surgery and living with a stoma. I will be following your story.
Suni

Hi scuffy, I to am the owner of a loop colostomy good luck.

Hi gang,

Came home from hospital Wednesday afternoon. I am as weak as a babe after all these surgeries and months lying in bed. Had my Remicade infusion Friday and hope that kicks the healing in gear. Not too much pain, certainly not as bad as the prior surgeries so thankful for that. Except for coughing or anything like that, and gas. Ugh. It also kinda hurts when anything gets in the bag, it feels very heavy with very little (like less than 1/4 full) and like its tugging and pulling the bag down. Ok if I'm laying around all day but as soon as I get up its pulling. I'm using the skinny supplied Hollister belt that hooks to the ears on bag flange but my defined waist and larger hips makes the belt not stay in place but gravitate upwards a couple inches into my waist. Trying to figure out how to resolve that.

I'm struggling with the bags, changes and emptying. I have Hollister bags from the hospital. The home health nurse came Thursday and ordered more samples but not here yet. My problem with these is that the flanges stick to my skin too well! Even with the nurse using adhesive remover was still incredibly painful peeling it off. There was skin protector used when applied, this rime we didn't use it to see if it would help be less sticky. I've also had the flange come unsnapped from itself twice causing leaks from the ring, not from under the adhesive area. Emptying is a pain in the a$$. I've already had toothpaste like output that won't slide out on its own and trying to squeeze it out is a mess. I did get a little softer output to drain out on its own today twice pretty well. Cleaning the bag opening is a challenge, it gets nasty and I have the stupid clamp system until I can get something else.

I'm so weak that the home health nurse has already deemed me unable to change my own base plate. I tried with her help and lasted 2 minutes. Between the pain getting it off and the time it took to cut and place around the t-bar it took HER almost 30 minutes. I showered with Glad Press and Seal wrapped around my body cuz I was afraid of it getting wet and weak and peeling off for my Remicade appointment. What a disaster. Nursing coming every 3 days to change it for me until I'm capable on my own. I feel pathetic.

And the smell. Dear God, its like toxic fricking fumes. The nice thing about your butt is its further from your nose, especially when burping this thing. It has literally given me the dry heaves when the smell hits my nose a few times. The Colomajic liners are on my wish list. And some sort of supportive belt.

So far that's the gig. I KNOW this will get better. It pretty much has to. I feel like such a complainer now...that's not my intent. I'm just sharing my story, not to scare others, but maybe to help them not feel alone if they are experiencing the same or similar challenges. Its a life adjustment like nothing I have ever experienced before.

Bless everyone and may all your stomas treat you nice.

Jen

Hi, I have an ileostomy so my experiences might be a little different, but hopefully I can share a few useful things with you.

Getting the bag off is most likely being made a lot more painful by the fact that you're recovering from surgery. Is it the adhesive pulling on your skin that makes it painful, or just the fact that your stomach is so tender still right now? Take a hot bath before taking the bag off and it will make it easier to unstick the adhesive. When your stomach isn't so sore, you might not notice the pain of pulling the adhesive off so much, and you might not noticed the weight of the bag on your stomach so much either.

You will probably get used to the smell! I know it is bad, but I found I adjusted. You can get special sprays to put in your bag or just to spray in the air as you empty to cover the smell, but I found I was happier with regular air fresheners/deodorisers. In each bathroom I've got one of the ones that you press and it squirts the fragrance out, so if I'm changing or emptying the bag and the smell starts getting to me, I just squirt it. But you will adapt; my mum said it's like when you change babies' nappies. First it smells awful, but you get so used to it, pretty soon you stop noticing it.

I was so weak after my ileostomy surgery. I had complications following the surgery, so even though I was already terribly underweight, I couldn't eat and was on TPN, and didn't get out of bed much at all for a few weeks. When I got home, literally just standing up was a challenge. The thought of walking upstairs was exhausting. Putting my clothes on hurt my arms, because it was such a weight on them to lift the clothes up. I was amazed at how what little muscle I had had wasted away in just a couple of weeks.

But my strength is coming back. After about a month, I could walk around the garden without dreading every exhausting step. Now I'm nearly three months on and although I'm awfully weak compared to a healthy person, I can walk my dog for half an hour without getting exhausted. I just had to get eating, getting more energy in. I didn't push myself too much - I know some people have to force themselves to get out of bed, but personally I find that when I'm ready to do more, the desire to do more comes with it. So as my strength came back, I naturally started being more active - fetching my own meals, going out to the garden for some fresh air, getting up to get things for myself rather than relying on others to get things for me.

You will get back to feeling more normal again. It just takes a little patience. You'll figure out all sorts of tricks for managing the stoma yourself too. You'll get into a routine, find the products that best suit you, find solutions to the problems that come up. Just keep asking on this forum and asking your stoma nurses, order free samples of everything from the stoma product suppliers and experiment yourself.

You are not pathetic! There's this huge expectation on people to be independent, to not rely on others, especially when it comes to things like managing bodily functions. But there shouldn't be. We're sick and we need help. You're clearly trying your best, so having the nurses help you is necessary, it's nothing to feel bad about. When I was in hospital, I had nurses helping me change my bag, helping me to the loo to pee, etc. One day a nurse took the time to take me to the shower room and bathe me, and she spent about a hour washing my hair for me, blow drying it, rubbing cream on my back because I was getting bed sores.

It was probably the least horrible experience I've had in hospital! The idea of doing these things for myself at that point was overwhelmingly exhausting. I felt so clean and so much better afterwards, I don't think needing a professional (or friend or family member, etc.) to help should be something that causes guilt. When I got home, my mum helped me, until I felt able to start taking care of myself again. And when I was able, I started taking care of myself independently again.

I hope your recovery is easy from here on!

Thanks for that UnXMas. It makes me feel better knowing I'm not the only one who has to struggle to get dressed. Taking a shower is my most exhausting chore, holding my hands above my head to scrub, rinse and repeat takes me out fast. I have to rest between dressing and blow drying so the whole process takes forever. My parents just bought me a special shower chair which helped a lot.

The bag removal is more a problem with my skin than the sore muscles from surgery as nurses are changing it so I'm laying down, no pressure. Even bandaid and medical tape is difficult to remove without pain. My parents also got some different skin-prep that must be made of gold it cost so much. The nurse will be here in a few hours to do the change. I'm already getting nervous.

The smell. ..I think we just get used to it because it has burned out all our nose hairs. We have air freshener spray I use liberally before, during and after an empty plus the exhaust fan. I even pop an altoid mint (an incredibly strong mint) to try to distract my senses. I never had that internal mother ticking clock so I've never had children or changed nappies. I guess my own will be my first experience and I see why my clock is missing. ..I'm not cut out for this!

On the plus side, this has done what they wanted and diverted from my bum. Even though I came out of surgery with more and bigger drains they are not leaking nearly as much as before and the abscess is less painful. I just hope the meds and time close all that up as expected.

Does anyone have any experience with the Celebration Ostomy Support Belt? Www.celebrationostomysupportbelt.com
I'm trying to determine if this is overkill (like more for sports) even though it says for every day. I do have concerns about seatbelts which cross right over my stoma and this has a removable piece for that. Just not sure how bulky and big it is under clothes in reality.

Thanks again everyone. It means a lot!

Don't apologize for complaining a bit...it's hard at first to get used to everything, and being weak and needing help from others. It took me 3 months to get back to doing things for myself (I was fortunate enough to be able to spend my recovery time at my mother's house). When I first got home from the hospital, I couldn't even make it up the stairs at mom's house, so I basically slept on the couch downstairs till I could make it up there. The heaviness in your bag will decrease as your skin around your stoma heals, and the smell really does get better! When I was in the hospital and they changed my bag for the first time, I gagged and told them that I couldn't deal with it, and that I wasn't going to either...lol It was the worst smell I've ever smellled...way worse than dirty diapers. But once I got my diet back on track and things settled, it's not bad at all. Still not smelling like roses, but it's definitely not that bad. The liners really help too - very quick poop removal! If you can get some, I highly recommend it, they're so worth the money.

Take it easy, don't try to do too much. It will get better, I promise!!

Hi Nyx,

Thanks for the advice. I'm fortunate enough to be at my parents house for recovery. I don't know what I'd do without them. I'll trust all you experts in what I'm feeling in my body and my head is normal and will improve. Thanks for helping me sort it out and get through it.

The liners are definitely on my wish list. Gotta pay my mortgage and see what's left...probably nothing at this point and I'll have to wait a bit or see if the nurse can get a dr to write a prescription and see if insurance will approve it.

A different nurse came today and was very nice but not a pro at bag changes. I only had 1 bag and base left until samples arrive so no room for error. Its not pretty but its on. It still hurt like a son of a gun getting the base off but maybe a tiny bit less than the last time. We tried the new no sting skin prep my parents got so I'll see how the next removal goes. The nurse was really pleased with the appearance of my skin even though having a hard time removing adhesive, said no excoriation or anything. Yay! I hope to heck some bag samples show up in the next few days!

Warm wishes everyone.
Jen