Struggling with severe ileostomy pain and discomfort

Hello everyone... I just want to complain for a bit... I've had a colostomy done in January 2010 and almost lost my life. I had that reversed in September 2013 because the surgeon felt it would give me back life... I'm really not sure why he said that because I absolutely loved my colostomy!

Now fast forward to present day, I had an emergency surgery done in February 2015 and had all of my colon removed, and the surgeon gave me an ileostomy... Well, let me tell you, I HATE THIS THING!

I can't eat anything without it passing through in less than 15 minutes... I drink so much fluid daily and still fight dehydration... It took me almost 2 months to get off pain meds, and as of a week ago, I have needed pain meds again because every time I eat, my guts hurt badly... Severe cramping and I actually have to lay down until it passes... I'm going to see the surgeon ASAP, and I sure hope she can help me by telling me what could be causing this severe cramping... I'm terrified to eat anything because of that pain... Anyone have any suggestions on what it could be or how to cope... I'm sorry for being whiny, but I simply can't get used to this stupid bag.

Severe diverticulitis since age 15... Wrong diagnosis of IBS diarrhea for more than 20 years.

Very fortunate to still be alive as I went into cardiac arrest more than once.

Hi Stephanie Kilty, I read your post and am sorry that you are struggling with the ileostomy and mostly the pain involved with your new stoma. Is the ileostomy that much different from your previous colostomy? I have only had the ileostomy so I really can't compare.

Post-op, I also had some problems... with the wafer, eating, drinking/hydrating enough, and sleeping. Yes, I did not like my ostomy in the beginning because I could not get my head around why I could not be cured without surgery. I still have dark moments but they are fewer and my days are brighter and happier. It took time to get used to the new process. I've read about other ostomates who have pain with digestion after surgery. I will say a prayer that your pain goes away. Regarding your hydration, have you tried Gatorade? It helped me as well as Ensure fruit drink.... but don't drink the red/cherry flavor because it processes red... if you know what I mean. Not something you want to see if not prepared in advance.

With the solid foods, I would try small amounts of mashed potatoes, applesauce, chicken noodle soup, apple juice, herbal tea, graham cracker, saltine crackers, and mashed bananas to start. While eating, I would drink liquids, preferably water, to help with digestion. Question.... prior to surgery, were you eating regular foods or were you on a liquid/soft bland diet? Sometimes it takes the stomach to learn how to process the food once again if you are not eating normal quantities. That is what the docs told me when I was on TPN and not eating much prior to surgery. Eating was not enjoyable after my surgery... it made me sick.

A fellow ostomate and GI told me that the transit time of digestion will slow down some with an ileostomy and the small bowel will begin to act a little more like the colon. The body will adjust but again it will take time. Also, check with your doctor about taking something to slow things down if needed. I hear there are several medications available.

I hope that this helps and that your ileostomy becomes more manageable. I am really sad that you are having a tough time because surgery alone is hard and this makes it more difficult. Take care and know that we are here to help and listen. LH

Hi Stephanie,

I'm so sorry to hear that you're having so much pain after an ileostomy. Losing the colon means that you're not absorbing as much fluid as before. That accounts for the liquid nature of the output, and also for some of the pain. It does take the digestive system awhile to adjust, and then hopefully the pain will abate. Do what Lady Hope suggests....regarding small amounts of food at a time, pasta, noodles, potatoes...., mashed bananas, and anything that feels good and agrees with you. You can add small amounts of new foods a little at a time, as your system adjusts. I had my surgery 50 years ago, and that's what the doctors recommended. But I was a kid of 15 then, and someone had brought a pizza onto the floor, and offered me a piece. Without my doctor or parents around, I had it, and OMG, it was amazingly delicious....after 4 years of being without it.

But an ileostomy is not a colostomy, and some foods do tend to disrupt digestion.... but it's different for different people. I can eat lettuce, but not raw cabbage... But I can digest small amounts of coleslaw or sauerkraut. Years ago, I had no problem with corn, and these days, it's a crap shoot. So I only eat corn on the cob when it's the small white tender kernels. It's truly trial and error. I've never "hated" the ostomy itself, but really had issues with not being able to figure out (easily) what I could and couldn't eat. Today....I just accept what is. No more clams or mussels....they just don't digest well....but I tried a few raw oysters last year and didn't have a problem. But I wouldn't go looking for them. Take the time, and develop the patience to learn what your body will and will not accept.... The "stoma" is just the tip....

Best of luck

Marsha

Both ostomates have given you excellent advice. I've had my permanent ileostomy plus other extensive surgery for FAP; just 2 years and there have been definite stages of getting used to it and it getting used to me! I cannot eat/drink Gatorade as I get immediately sick and any kind of roughage or fiber is fully off limits. I finally got to where I wanted to eat but it is a never-ending mystery as to what will work. I have to eat salt and drink lots of fluid so after much trial and error, I discovered a cold of V8 is wonderful. I can now drink a little wine or hard cider...but small. Coffee has to have milk or cream or it goes through to the bag as fast as I drink it. Tea works fine and is good. I also make fresh lemonade and raspberryade. I am lucky to be able to have milk products and often have cottage cheese with chive or some flavoring and plain crackers for snacks. Marshmallows do wonders. I eat red meat of some form almost every day to get the nutrients and I also have some form of potato.

I wish you well --- it took quite a while to get the healing complete. Then it seemed like every couple of months more changes happened. Just in the last two months have I really gotten back toward the energy and life I used to have - BUT it has been an uphill journey and one I am very fortunate to have. My prayers are with you....

I have an ileostomy and I am feeling pretty fortunate at the moment... My "walk through the valley of death" was in August of 2012 (Less than a year after I married my husband) and it was so unimaginable I simply do not like to talk about it. My health continued to deteriorate over the next year for more surgery in 2013 and removal of more body parts (I guess I didn't need a few of them anymore). The Wound Vac machine is so unbelievably painful... both times but enough said about that. I was so afraid to eat or drink anything because it would just come back up and as you know, we have to stay hydrated... that when I found something that would not make me throw up... I would just eat it until my body would just say..."next"! meaning I just didn't want that particular food anymore (ever). I don't mean eat tons of it at one sitting, I simply mean something I could tolerate... Stouffer's mac and cheese was one of the first things I could keep down... starting with about 10 or 15 of the little macaronis at one sitting. The nurses were on me to eat anything, but eat!!!

Now it's 2015, and I'm off the pain patches, the pain pills, the nausea meds, the steroids, the killing antibiotic (Flagyl) and I can and do eat. I can say that I miss my salads the most however... bought a juicer and a vita mixer... the juicer is a pain and I do need to use it more often. Love the vita mixer and I am pretty good with most foods now and not having too much trouble... not cabbage or stringy things ( have added a tiny bit of sauerkraut to my ruben sandwiches when I have one) or too many items with skin (grapes, peas, corn)... I love raspberries and they will thicken up the output quite a bit. I drink tea all morning when I am working from home (I'm a Realtor and back to work) as going to the bathroom here isn't an issue of course. But when out with clients, I really try to keep what goes into my mouth to a minimum. I can't to this day swallow Boost or Ensure, it just makes me gag... I have however found an amazing medical protein powder product in all sorts of flavors that I use very much... every day actually... so I will have my protein drink in the morning and water with me throughout the next few hours... I have invested in those cute little travel lysol spray containers and they are in my purse and I use them liberally when I have to tend to the pouch.

What I have also found is that by listening to all of the experiences on here, there are some things I keep on hand for what I call emergencies... If I happen to swallow anything that I don't think I have chewed it up enough, I get frightened that it will block me... I keep grape juice on hand and will drink it... talk about passing right through you... but it gives me peace of mind. Some also suggested coconut milk for the same effect, but I didn't like it...

I use the marshmallows or applesauce also to slow things down and now I am happy to say that I have no problem with a margarita either... so I think I am pretty fortunate at this time, but please, when I was a baby ileostomate, I couldn't wrap my mind around being able to cope with this stuff. It took me an hour to change the appliance and I would be worn out when that was over and have to go to sleep because it was so stressful... I watched videos on youtube of folks standing and changing everything and I remember thinking... no way, I will never be able to stand and do that... and the group on this site re-assured me that not only would I be able to do that but they promised me that life would get better and it did. I am grateful for that.

I am facing my 3rd surgery in a few months... another wound vac machine... this time however, I am healthier not only in mind and in spirit, but the tissue in my abdomen is healthier and I believe it will all heal so much faster... I know what to expect and am preparing myself for a speedy recovery... Keep drinking my protein shakes, taking supplements and exercise as much in the pool as I can... because the tissue was so sick in my belly the last two times, I have now my second hernia... so ugly... but the good news is this... It's fixable!!!

Stephanie, you have been through a lot... it all takes time to heal. I know it's so hard for you now and my story is like most others... we made it and you will too!!! I would love to be able to just be there with you to wrap my arms around you and to comfort you and I know I'm not alone in the feeling... God's on your side... as hard as this is, you will get on the other side of it... and heck... whiney is ok for now... that too shall pass.

Hugs to you Stephanie...

Hi Janada, what a great post and thank you for sharing your journey. Your journey sounds so much like mine....even down to changing the appliance which also took me over an hour the first time. I thought that I would never be able to manage my ileostomy....one day at a time, right? I remember eating such small amounts too. The docs would yell at me to eat. You ate 12 little macaronis and I would eat one skinny slice of chicken and one mouthful of mashed potatoes. That was dinner because I was afraid of the pain. I eat much more today and food is not the enemy any longer. Thank you so much for the inspirational message. Good luck with your upcoming surgery. You will be in my thoughts and prayers for a speedy recovery. Take care. LH

Hi Stephanie, do not have a reversal! I had my ileostomy for one year and definitely had quality of life. I had the reversal done in August of 2014 and was very hesitant to have it reversed. I am nine months out from surgery as of today. I have had an anal fissure for the entire nine months and extensive bloating. I have no colon, which means I have to be very careful of fluid intake so I don't get diarrhea. I have no quality of life whatsoever. If you do have a percentage of your colon left, maybe consider it; otherwise, leave things as they are. When I had my ileostomy, I thought it was inconvenient. Now I truly know the meaning of inconvenient. I am strongly considering having it back. I don't really go anywhere because I'm either in too much pain from the fissure or so terribly bloated (especially midafternoon and evening) that I don't feel like doing anything. If I could go back to the bag with a blink of an eye, I'd do it in a second. I am a highly seasoned surgical patient and know every step of the miserable surgery to have it reversed back to the bag as well as the recovery time. That's what is holding me back. I use nitroglycerin for the fissure pain and can heal it for a short time. After about one or two BMs, it's irritated as heck. If I could have seen 9 months down the road before I had the reversal, I would never have had it done. I even had a Botox injection into rectum, which gave little relief. and

I have had my ileostomy since 2010....due to a subtotal colectomy going septic. I have Scleroderma - CREST and have many GI issues. As far as what you eat...I know that since eating stimulates digestion, what passes through to the bag is likely food eaten from a previous meal. Liquids do however pass rather quickly. You need to pay attention to colors and sediment. I am told to eat a low residue diet and limit the whole grain, brown rice and high fiber food. Almost complete opposite of what doctors tell most of the population to do. I have issues with peristaltic (sp) waves of digestion. My food takes longer to pass and I have absorption issues as well. Keep in mind our small intestine has 20 feet of passage and our colon (was) 5 feet long. When I drink milk the output is white. Coffee - dark brown....Tomatoes-the skin does not break down as the output looks just like it did as it went in. Stay away from Chinese Food............Bean Sprouts come out looking the same! You don't want to clog your stoma....I have made friends with my stoma and ileostomy - my pic is my 'girl bag' - bedazzled....................

Hi Moonshine....question? How do you keep the bling on the bag? I tried but it fell off. Also, I responded to an earlier post in the thread so I really do not have more information to share at this time. Take care everyone. LH

I buy them at Michaels or Joanns - I just press for at least 10 seconds - mine will even last through a shower.....they stick way better in warm weather......make sure you get rhinestones that are intended for long-term use

Curious about the stones Moonshine... Do you apply the stones every time you change your bag?

Thanks LH... Setting the DR appointment today to set the surgery date... It takes such a long time to get into see him... I am actually looking forward to this one... Hoping that I will finally be done with major surgeries. Even though anytime you "go under" it's a risk... I have a positive vision of a successful outcome... Not even allowing myself to dwell on the 45 to 60 day initial downtime... Looking beyond that to the rest of my life!!! Thanks so much for your note and well wishes...

Hi Stephanie,

I am wondering how you are feeling now... It's been a couple of weeks... Just one more comment about the whiny thing... I think that complaining is in the category along with grieving... Actually, we are grieving when this happens to us... We have lost a part or parts of our body and our lives change... But slowly with time, it happens less and less. Everyone deals with it differently and it doesn't stop until we can, on an individual basis, finally let go and accept what has happened... Like you, I know that I mentioned that I too had one foot out the door... So I sorta know where you are coming from... Hey, I know... Let's check with others to see if they have actually named that little stoma... I haven't yet but I think it would be fun to see what everyone else has done... I'll check back in with a "name" for mine.

Let us know how you're doing.

I had a colostomy due to diverticulitis with stricture and abscess for about 5 months, when they went in to do the reversal they ended up doing an ileostomy which was much harder to deal with, similar problems that you had, very loose stool, bags would not stick, then I had with the colostomy. My colorectal surgeon said I should take Imodium, 3-4 tablets a day. That really helped, it is OTC and pretty cheap. I also had an Rx for lomotil. Those really helped get things into control.

Now I finally got a reversal, and still take a half an Imodium every few days plus mega vitamins as I am missing most of my colon and some of my ileum-----

Thought I had replied - but yes... I put on new bling every time I bag change, which is 3-4 days - sometimes just a little bling and sometimes a lot

Cute! I have lace pouch covers that I bought, one pink and one black...

I think the Imodium is an interesting idea. My surgeon never mentioned anything about that...I am noticing my skin is taking a beating and aging on my hands and arms...I feel I am not hydrated enough and I am always drinking and always emptying...Mary Ann, tell me more about what you experienced with the Imodium and the ileostomy...Did you go less? Was the consistency thicker?

I'm going through the process also and I hate it

I wanted to respond to this post about hating your ostomy. Gaining a life-changing/life-altering ostomy is devastating, scary, and different but a miracle because it gives life. It will be three years for me this week when I lost my battle to UC. I was never so sick in my entire life and pray that I never go through illness again. I fought and resisted an ostomy until my colon almost perforated. I refused the bag and would have died without. Malnourished and medically compromised, I was wheeled into the OR on March 11. After surgery, I was depressed for months and felt that the world knew my secret. I was ashamed that my body failed. I felt guilty that I could not cure my illness. One day, with the help of my faith, I realized that I was alive and living because of this ostomy. I began to embrace, not really like it yet, but appreciate my new lease on life. It took many months before I liked my ostomy. Fake it, to make....I made it. Newbies....please be gentle on yourself. This is a great transition. Allow yourself to experience the feelings you are feeling. One day, your ostomy will be just part of the new, daily routine. Once I realized that I could do it with a pouch, I took baby steps, small successes each day to build my confidence. My stoma named Stanley is my lifeline. Without it, I wouldn't be here and I am grateful that I am. Since surgery, I became a great aunt three times, published a book, helped others walking this path, and enjoyed more time with my husband. Take care and post. Others are here to help and will offer many ideas to making life with an ostomy easier. LH

I also want to talk about hating your ileostomy... I did too! I want to try to keep this really short... Since May of 2012, my world as I knew it caved in... I almost feel like I stepped out and someone much stronger than myself stepped in and took over my life (if that makes any sense at all).

The life-saving surgery didn't come until the end of August 2012 after 3 months in and out of the hospital. I can now admit I was on my deathbed. May to August was so horrific I still can't believe I survived all of that... but I did. I'm sparing the details. I was sent to a "rehab" hospital 3 hours from my home for 3 weeks after the surgery because I had been so ill, they really weren't sure I was going to make it. I couldn't take care of myself, I couldn't even walk. Good thing they didn't tell me my chances were slim! LOL.

In that hospital (Kindred), I was finally shown how to care for the stoma but not until the day before I was released... I know it seems odd but the surgery left me with a wound vac and pain medications so strong I had to try to write everything down because I couldn't remember from one minute to the next what anyone told me.

Fast forward... I came home at the end of September in 2012. It took me at least an hour to change the wafer and I would be exhausted! I was actually still mostly bedridden at that time... home health nurses coming in to change that wound vac dressings 3 times a week for at least a month after I came home... I hated this life, I would never be me again...

I never really recovered... remained sick... only to find out that I had terrible infections in my body and fistulas and boy oh boy.... the worst antibiotics on earth were given to me... I threw up all the time... Then I ended up with a bad hernia. Back to surgery in August 2013...

Wouldn't you know it... another damn wound vac... and months of recovery...

Then I tried to go back to work and pyoderma gangrenosum reared its ugly head again and they put me on high doses of steroids which packed on the weight!!!

The result, another hernia... The hernia doctor I went to was awesome... He did say he never saw anything as bad as what I had (all he does is hernia operations). He said it was going to be a challenge. That's when I knew it would be ok because I knew he would do his best. SO, in August of 2015, back I went into surgery. This time, because my body didn't have the infections inside, he was able to fix it right... no wound vac but 42 staples... sliced from my pelvic bone to my breastbone.

I'm going into my 8th month now after the 3rd major surgery. I am finally beginning to feel like me again... I still feel the mesh inside of me sometimes because he also put some around the stoma as I had the beginning of a hernia there as well... (I mean to tell you that my gut was really sick inside because of the UC).

I call my stoma Betty. Betty Boop (Poo, Poo Pe-doop) when I need to attend to it. It's so easy now... "Let me check on Betty and I'll be ready to go..."

I changed her clothes yesterday and it takes less than 5 minutes after a shower... I didn't think I would ever be able to do that. So now at 65, I have a "little bit" of a pot belly, not too bad, from all of the surgeries and sewing the muscles back together. So now I wear my blouses out instead of tucked into my slacks.

Now finally, I am beginning to remember what it was like to feel "normal". Betty doesn't consume my thoughts anymore. I don't worry if anyone can see through me and somehow know Betty is part of me. Actually, I am grateful now that Betty is part of my life because without her, I simply wouldn't be here. She's a minor inconvenience compared to what I've gone through.

I am finally at a place emotionally where I can accept her just like so many before me on this site told me I would be able to do.

I recently was talking with someone, a man, who mentioned he had just had a colonoscopy. There were a couple of polyps which were removed. He said he was glad that was all that was wrong with him because if it was anything else, he would... and I quote... "Rather die than wear a bag"....

There's nothing you can really say to that... no reason to disclose my circumstances... I just smiled, straightened my blouse, and discreetly placed my right hand over Betty and thought... "Thanks girlfriend, you're doing a great job!!!"

Thank you Janada! This was such an inspirational post and I appreciate every heartfelt word shared. I am one year surgically behind you...all of my adventures began the summer of 2012. I named my stoma Stanley and when people talk negatively about the pouch/bag, I also place my hand over Stanley and thank God for my second chance. Life is pretty awesome even with a stoma and I am happy to be here. Take care and thank you for sharing! ;LH

LadyHope...Please, let me thank you! It was because of what you said in response to Lakesha when you said "Newbies....please be gentle on yourself. This is a great transition. Allow yourself to experience the feelings you are feeling. One day, your ostomy will be just part of the new, daily routine. Once I realized that I could do it with a pouch, I took baby steps, small successes each day to build my confidence" that sat me back in my chair and inspired me to write the post in the first place.

When one has been where "we" have been LadyHope and have "walked through the valley of the shadow of death" and emerged on the other side...we need to encourage the "newbies" that life goes on...it can be wonderful...one day you wake up and the Bettys and Stanleys no longer define who you are...they simply become your new "normal" right?. Who's to say what's normal anyway?

I see you're from Philly. I am in FL now but originally from the other side of PA, Pgh. I've been here for 31 years so I guess that just about makes me a native Floridian...

Nice to meet you and thank you also for sharing!!! Janada