Overcoming Severe Medical Challenges and Seeking Support

Hi, I'm new to this site, still trying to figure it all out.

In March this year, I collapsed bleeding and was taken to A&E. They said I had a hole in my bowel. Then they told me I had a huge abscess in my bowel. I spent 3 weeks in the hospital, underwent 2 operations to remove the abscess, and had 2 drains put in my rear opening. A "temporary" stoma was fitted to give my bowel a break and to heal it.

The hole in my bowel is 7 cm long, and a seton stitch was put in. My stoma was huge, had lots of issues with it; it leaked, farted really loudly, and was painful most of the time. It then prolapsed twice; I had to go to A&E again twice and have it pushed back in by a surgeon... it was agony. Then another operation to re-fashion the stoma 2 weeks ago. The stoma is a lot smaller now, but God, I feel worse.

I get a constant twisting and tightening sensation in the stoma, really bad wind, trying different bags, they are leaking... I had to change my bedsheets for the fourth night last night.

Also, my rear end... the seton stitch is hanging out of my anus, my anus leaks transparent fluid, and I have this bearing down feeling, like I need to go to the toilet numerous times a day, so I'm spending a lot of time sitting down on the loo passing fluid... ironic for someone with a stoma!

All this in the space of 4 and a half months. I think I have PTSD, have nightmares, am anxious a lot. This thing is dominating my life, really getting me down. I read the posts and blogs on here and ask myself, am I being a wimp? Am I not being strong enough? The past few months have been extremely difficult and I can't see the light at the end of the tunnel.

Sorry for the moan, needed to vent and write this all down.

Hi Caledonia - You are not being a wimp! Your story is a nightmare, and I can well imagine you have PTSD symptoms with what you have been through. I can't tell from your post whether you have an ileostomy or colostomy, but I'm guessing with all the problems it's an ileostomy. (I have a colostomy). Hang in there! Yes, some people return to fairly normal life quickly, but then they haven't had the complications you have! Also, I know what it is like to have a prolapse pushed back in - no fun and scary!

I'm sorry to say that bearing down feeling may stay with you a while - it's totally normal, you had (or have) a muscle there that wants to contract. You will also have discharge, mucousy water, or even a little bleeding from that area.

It sounds like your ostomy is temporary, but I'm not sure. Either way, this all came on you in a flash - you didn't even have time to think about it - and living with the side effects of any surgery is difficult (I've had 7!) Please either keep in close touch with your WOCN (ET) and/or an ostomy support group if you have one nearby. If not, besides this site www.UOAA.org has virtual support groups to help you. You are not alone!
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Hi Caledonia, You are not alone!  I haven't been through exactly what you have been through but June 2011 I had a colon resection which when I woke up had a "temporary" colostomy bag, 9 months later (which was longer than most so don't get discouraged I happen to not heal fast and respond to anesthesia very well). I had leaking with the colostomy but not allot I had to watch what I ate and also make sure I didn't sleep on my left side where the bag was.  I used a convex wafer which also helped.



March 26, 2012 They did a reversal of my colostomy but since I have a tendency for adhesions I got a vaginal fistula where the colon and vagina were attached so April 23, 2012 They had to operate again and reattach my colon. unfortunately I woke up with a "temporary" Ileostomy which also leaks.  This time not only do I use a convex wafer but I also use a coadhesive eakon seal which can be stretched to the size of the stoma.  I go for this reversal on Aug 21, 2012.



I am telling you this not to discourage you but to let you know you are not alone and it gets better.  Even though this has been tramatic I have found some ways to help with this season of trials. First I use the seal and convex wafer.  Secondly I used to be my parents caregiver and had chucks (the pads put on a hospital bed to protect your sheets)  Most of the time I only have to change the chucks, not the sheets.  I also bought a washable body pillow I am a side/stomach sleeper and the body pillow keeps me from laying right on the bag or the stoma which hurts off and on.  To keep the stoma from hurting so much try emptying the bag more often and watch what you eat (I have to stay on a low residue diet) when I eat wrong I leak more and hurt more.  Stay strong!  It will get better.  It takes time, but it does get better.

Hi Caledonia,



Ouch! Sorry you've been having such a horrible time with your stoma.  I remember when l first got mine l thought l could join a brass band it would trumpet so loudly!

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The slightest smell of food and off it'd go!  

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Good news is: it should settle down for you as it did for me.

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I also had the twisting and tightening sensation in the beginning and found that my stoma didn't like having anything too close to it (it still doesn't). I found using a slightly larger diameter pouch helped with this although you need to protect the exposed skin.





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One thing l can suggest is to eat the most nutritious food you can. It will help your body to heal and improve your state of mind.

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Best wishes to you for a speedy recovery from now on.

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Hello Caledonia,

I am so sorry that you are having a tough time. However, I think that the problems you have are hopefully short-term ones, that with time to heal, good colorectal surgeons, knowledgeable stoma nurse, and a healthy diet, rest, supportive friends, and family, you will come through this bad time.

As for me, I have been back at full-time work for a year, without a sick day, following sigmoid colectomy and then a reversal of colostomy operation. I too had a diverticular bowel abscess that left an extensive area of damage that had to be removed surgically. Philosophically, a few scars are a small price to pay, eh?

To help me through it, I focused on getting through one day at a time, and kinda mentally wiped out a year or so from my life to enable me to get well. It was my Bad Health Holiday. Some days were definitely better than others (leaky bags, gut ache, embarrassing wind, etc., especially the traumatically loud fart in a quiet moment at the cinema
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), and my goodness, adjusting to my new, albeit possibly permanent, body image was a big challenge but hey, here I am, altered but in one piece a couple of years later!

Keep your chin up, etc. etc..

My Ostomy Journey: Kimberly | Hollister

Hello Caledonia.
I'm so sorry to hear about what you've been going through. But you're not alone! Everything will be alright, you'll see. I guess that everybody who gets a colostomy or ileostomy (I don't know which one is yours) passes through rough times.
I had a car accident last year (July) that caused a rupture in my bowel. The doctors took too much time to discover it, so I had to go to surgery and ended up with a temporary colostomy (4 months). The sad thing about this was that in August, I had my graduation from university (using a colostomy :/), was approved in a trainee program in another state, and had to move all by myself, ending a relationship. I got very depressed, but my focus was to do the reversal. I did it in November and now I'm totally okay. I'm just looking for my plastic surgery to remove the scars.
So, I guess you'll be okay. You just need to have faith. This group helped me a lot when I was in panic, thinking that everything would go wrong. These guys are precious!

Stay strong!

No No No you are not a wimp and definitely not alone...I remember all those things the first few months after my surgeries...Hoping everything gets better for you real soon

Thank you all for your kind words and advice; it means a lot. I have a colostomy.

It's enlightening, I won't say comforting, to know so many people are going through such similar things.

Since trying out a new bag over last weekend, I spent Friday night through to Tuesday leaking, changing, and washing bed linen and basically feeling like I constantly stunk of feces. I have had a supportive partner up to now, but I feel she is getting sick and tired of my behavior. Due to the pain I was in and feeling generally rotten and dirty, I've not seen her for a few days, but kept in touch via phone. I told her to walk away last night, just lashed out as she said I was feeling sorry for myself. I am not feeling sorry for myself; I'm truly struggling and I think she's had enough... I told her I didn't think I could make anyone happy at the moment.

Just impacts and dominates so much of my life, this illness, I won't call it just a stoma, it's everything as well as the stoma. The PTSD, feeling depressed, pains and cramps, bearing down feeling in the bottom, just tired, very tired of it all.

There are some really understanding, great people on here... thank you.

Hi there,
Sorry to hear about your ordeal. You might have to use special protective rings to build up around the stoma to avoid leakage. I would strongly recommend counseling for PTSD as the extra stress and anxiety will affect your bowel health and will interfere with the recovery process. I sure hope it will get better for you soon!

Caledonia-

I waited for a few days before I decided to reply to your thread. I wanted to try to find just the right words. The friends you will make on this site are like none you have ever had. We have all gotten our hands dirty...(LOL!!!).

Anyway... now that you know that you are most certainly not alone, you should also know that you can feel free to jump on here to vent or ask any questions you may have and surely find help.

The first while with the stoma, most of us who were not expecting this, were mostly still very shattered when we got home from the hospital. If anybody comes to visit and eludes that you are feeling sorry for yourself, I think it is perfectly normal to look at, (and possibly tell them), they don't know what in hell they are talking about. They don't!!! I decided early on to not let anyone without a shit sack hanging from their body tell me how I should feel. Even when my husband or mother still say to me, "Baby, are you OK?", I still just want to scream... NO!!! If you would just look at me you can see that I have crap running out of my abdomen!!!

The blowouts and leaks are the pits!!! PTSD is the pits!!! The nightmares are the pits!!! Not sleeping at night because you have to get up repeatedly to dump the bag or change the sheets is the pits!!! Having all this going on at one time is enough to make an extremely strong person crack.

You may want to take a look for a thread I put up a month or so ago on hallucinations while in septic shock - lots of folks on here have been right where you are with that. I hope the surgeon explained the phantom rectum thing to you. Don't be surprised if you are sitting on the pot one day and something that resembled a "booger" comes out!! Found out that was normal too - after I asked on here.

Quit beating yourself up - you were not expecting this sickness or outcome - this is a major event in your life and it will take a bit before you even begin to feel "normal" again - you will make it through this - we are here - we understand!!!

Sending sunshine your way!!!
Melissa

The first year is very tough. I had four more surgeries after my colectomy because of adhesions, abscesses, and aneurysms. It is a year later and I am doing great. I have found the right pouch system and now have very few leaks. Just be patient while your body gets used to this new system. I find emptying my pouch often and changing the pouch every other day and the skin barrier every four days keeps me feeling cleaner, fresher, and safer from accidents. My granddaughter told her mother that Nana poops under her shirt. I just had to see the humor in that and be thankful I am alive to enjoy her.

I will agree with the consensus that the first year is very tough. I lost my entire large intestine in Dec. 2010 and had a pouch until Feb. 2012; when I had a reversal.

I remember all the trial and error with the pouch... the hospital gave me precious little information on how to care for it; how to manage a "new" lifestyle... how to cope... if it were not for this forum, I think I would have gone crazy. It has been such a blessing to know that I am not alone in this journey.

Life after my reversal has been a mixed blessing. I take many meds to slow things down; but they have decreased the BMs from over 18 per day to around 7 per day. Much more manageable. However, the PTSD remains. I thought the reversal would take care of a lot of those feelings; but I find that a lot of the anxiety, lack of focus, bad dreams, social awkwardness, etc., remains. I am working through it, slowly but surely, with the help of a terrific partner, God, and a supportive cast of family and friends. I have also found a couple of dear friends on this site who are undoubtedly angels in disguise.

So, dear Caledonia, be kind to yourself as you work through the highs and lows of your journey. Give yourself permission to grieve; to process; to adapt; and to move forward as your emotions, health, and circumstances will allow. You are not a wimp, or a coward, or anything less than a warrior... use your inner strength to guide you and lift you up on the days that you just can't seem to find any strength at all. Place your emotions, your struggles, and your joys out here with all the other kindred spirits who share in these aspects of your journey. As ee cummings so aptly states, "It takes courage to grow up and become who you really are"... we are all "growing up" throughout our lives; becoming who we really are... an intricate canvas of light and dark colors; with complex weaves and patterns... ever painting; learning; and growing.

You will be in my thoughts and prayers.

Darla

DARLA!!!!!! My sweet wise sage!!!! I thought you had left us baggers forever!!!! So good to see your font on this page!!! Missed you.

Melissa

Hey Melissa!

Great to see you, too!

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  I haven't left you "baggers" at all....just busier than a one armed paper hanger with moving and such!  Plus I have a new, 3 week old granddaughter who I am already trying to spoil!

I am still lurking around here and always will be.....you guys are part of my extended family now!

Glad to know that you are doing well and giving some wonderful wisdom and advise to many folks on this site.  I am always reading your posts and updates and thinking of you.

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Take Care, and keep in touch, dear lady.

Darla

Ah, Melissa and Darla especially, words that I relate to and appreciate a lot...also everyone else, thanks for your knowledge and support, means so much.;o)

Well, according to the counselor who assessed me, I have PTSD and am "very angry," something that I never was, but have now become, sadly...he's right.

The hospital doesn't give you enough info, the support isn't consistent, and you feel at times like you're becoming a pain in the arse, pardon the pun.

Tried another new bag and had to change it 3 times in 24 hrs, leaks, leaks, leaks!!! Feel dirty and smelly so often at the mo...reverted back to the old bags, they also leak, but at least they take their time to get me stinking!

Good news, my gf and I had a good talk, she is being very supportive and says I have to push myself more...not sure about that part, but I will try. I work 5 hours a day on a phased return in a busy school and I stayed at my gf's the other night...no leaks and actually wasn't too anxious.

Sending you all positive thoughts and my respect, so many brave, resilient people on here...no one knows what it feels like unless they have one, you're right Melissa.

John.

Tried another new bag and had to change it 3 times in 24 hours, leaks, leaks, leaks!!! Feel dirty and smelly so often at the moment...reverted back to the old bags, they also leak, but at least they take their time to get me stinking!



Ok, John -



Now let's get down to business...what is going on that the stoma is leaking all the time? Does it pop out away from your skin? Is it recessed - like sitting in a bowl? Is it a colo or ileo? Bet ya $10 one of us has had the same problem and can figure out why it is leaking and what you should do to stop it!! Are you thin or a little "fluffy" like me? Tell us about the stoma, what bags you are using, and what products you are using to keep them on!



Melissa

Hello John, it is amazing how people on this forum know things. I had been trying to put into words how I was feeling and what I was thinking, then I read Notexpectingthis's earlier
post and there it was. Mine is a little different; I knew 3 months in advance I was going for surgery. I still was not prepared for my ileostomy. On January 26, 2012, at 6:30 AM, I went to sleep with a colon and 6 hours later, I started to wake up and did not have a colon anymore; I had a bag. I chose not to look for any info beforehand because not only is there positive info, but there is also negative info. As you know, the info given to you when you leave the hospital is not always the greatest. One thing they did suggest was to look up forums like this. Every day I put my stoma guard on and go to work and do not show any weakness; a few know
but most do not. I never thought I was going to feel better. I was down to 175 lbs, my skin was almost grey in color, my cheeks and my eye sockets were sinking in, I was scared to eat, I would go all day sometimes and not eat because if I ate, I had to use the bathroom continuously. My stoma and my bag have given me back my life. I had a leak 4 days home from the hospital but figured it out and you move forward. I questioned if I was using the right
products, so I went to the drug store and luckily for me, they specialize in ostomy products and gave me a few tips. This is my poop bag and I need to look after it and figure out what works best for it. I recently realized I am not a candidate for a reversal and my doctor does not think a J-pouch is a good idea for me. This forum is great. As said before, you are not alone.

Take care, Ed

Ed, I can identify with you. I've lost a stone and a half... Diet is a joke. I eat very little, very rarely, because like you, I'm scared to eat... even considered bulimia as an option, but couldn't make myself sick, ha! People just say... eat, eat, you will feel better if you do... it's catch 22 for me.

Melissa, I'm 6 foot, 10 stone 7, so no, not fluffy, ha, never heard that saying, like it! My stoma was refashioned; it was huge and was prolapsing. It's a lot smaller, but yes, it has a recess top right as you're looking at it. Tried double-sided sticky rings before putting the Hollister bag with double adhesive on... leaked every time, so just single adhesive Hollister bags now. I think the sticky ring raised it away from the recess... was supposed to contact nurse, this will be the 4th different type of bag in 2 weeks, getting sick of it.

Also, alcohol, can you manage a few drinks? If so, what? I now can't drink anything apart from a glass of red wine. If I have more than a glass, my stoma kicks off big time and works all night, filling the bag.

Yeah, "ditto on what Pinky said." I too get that feeling of wanting to go to the bathroom. I found out it's just mucus. Sometimes it's painful, like the mucus is pushing on a nerve. It is pretty stressful dealing with all that's going on, so it is good to talk to a counselor or be in a group. Hope everything goes your way.

Yes, Friz, I'm passing mucus about 4 to 5 times a day. That bearing down feeling is awful and gets me normally when I'm outside walking.

Counseling... I seemingly have PTSD, went to an assessment a week ago, got the letter from them today... the earliest I will be seen is 5 months!!! Hahaha!!! I could be 6 feet under by then... they told me, "In the meantime, feel free to use the Samaritans number."

Society is malfunctioning, so many people on a huge waiting list to get help for their mental and physical issues, it's a bottleneck of suffering that will only get longer. GPs will be busier, more stressed, then in turn not doing their job properly due to this stress, hence mentally ill people as well as physically ill people receive sub-standard professional support, making them feel like I am now... dismissed by society, irrelevant and swept under the rug.

I'm normally a happy person, fun to be around... well, I was until the last 5 months... Hope, that's all I feel I have, a little bit of hope that things may not always be this hard and upsetting.

My stoma was refashioned; it was huge and was prolapsing. It's a lot smaller now, but yes, it has a recess at the top right as you're looking at it. I tried double-sided sticky rings before putting on the Hollister bag with double adhesive, but it leaked every time. So now I just use single adhesive Hollister bags. I think the sticky ring raised it away from the recess. I was supposed to contact the nurse; this will be the fourth different type of bag in 2 weeks. I'm getting sick of it.



OK, Marlen has a bag that I have been using lately that is working pretty well to help control the leaks with my totally recessed stoma. The thickness of the material that sticks to your skin is thin and hydrocolloidal. I got the one with shallow convexity. It is like a second skin and moves well with your body. Before, I was having to powder, spray, use an Eakin (double-sided sticky ring), and a belt to help hold it snug. This bag feels much more liberating as I only have to press it to my skin and lay my hand on top of it for a minute or so for my body heat to help it adhere. Marlen is good at sending samples, so look it up. They have pre-cut ones and the ones you cut yourself - I use the one I cut myself. Also, in the worst recessed parts around the stoma, pinch that sticky ring apart and use a piece of it at the recess only instead of all the way around the stoma. I would bet my bottom dollar that the recessed area is the place the leak is coming from. Also, you may want to try to put that piece of the sticky ring on the bag instead of on your skin - for some reason, this just works better for me.

My stoma was refashioned; it was huge and was prolapsing. It's a lot smaller now, but yes, it has a recess at the top right as you're looking at it. I tried double-sided sticky rings before putting the Hollister bag with double adhesive on... it leaked every time. So, I'm just using single adhesive Hollister bags now. I think the sticky ring raised it away from the recess... I was supposed to contact the nurse. This will be the fourth different type of bag in 2 weeks; I'm getting sick of it.



OK, Marlen has a bag that I have been using lately that is working pretty well to help control the leaks with my totally recessed stoma. The thickness of the material that sticks to your skin is thin and hydrocolloidal. I got the one with shallow convexity. It is like a second skin and moves well with your body. Before, I was having to powder, spray, use an Eakin (double-sided sticky ring), and a belt to help hold it snug. This bag feels much more liberating as I only have to press it to my skin and lay my hand on top of it for a minute or so for my body heat to help it adhere. Marlen is good at sending samples, so look it up. They have pre-cut ones and the ones you cut yourself - I use the one I cut myself. Also, in the worst recessed parts around the stoma, pinch that sticky ring apart and use a piece of it at the recess only instead of all the way around the stoma. I would bet my bottom dollar that the recessed area is the place the leak is coming from. Also, you may want to try to put that piece of the sticky ring on the bag instead of on your skin - for some reason, this just works better for me.

Caledonia, we're in a big pile of trouble at the moment. It's just a matter of accepting what once was is not in the cards now. I try, and I do mean try, to say to myself it could be worse. And the fact is, it always can be worse. I see people in much worse condition, who fight the good fight, to show it can be done. This is a lot to get used to, but the human spirit is a powerful guide. We need to just follow the path that the spirit lays before us. The spirit is confined by no form; where there is a wall, it goes through, over, and makes as if it was not there. Where we see limitations, the human spirit has no boundaries. The spirit of "I WILL" is already active in the ones who have challenged "i can't" and were victorious. Some bodies will never be the same again, but one day, in my opinion, our spirits are leaving these broken shells to be united again with the great spirit in the universe. Having said all that, we have to choose "I WILL" or... Idon't want to say it. I'm saying to myself "I WILL"... So, Caledonia, get with a support group and listen to the challenges and triumphs that are out there, find that spirit again. I know to some I sound corny, but this is me.

FRIZBEEKID

Powerful Friz! Thanks for it - I needed it!