Ileostomy Reversal...OMG!!

kristasplace
kristasplace Member Posts: 955
edited March 2014 in Colorectal Cancer #1
Hello everyone!! Well, it finally happened...the ileostomy (for some reason i no longer remember how to spell that word!) has been reversed! However...i'm not all that thrilled about it at the moment, or at all. Tiny, if you read this...i know you know what i'm talking about. And i really don't want to scare anyone who is looking forward to the day their ostomy is reversed, but...i'm in hell. I've only now felt comfortable enough to come to the board for some support. For days i've been in the bathroom in excruciating pain trying to pass stool. No matter what i eat (and i've barely been eating anything), i'm rushing to the bathroom, and then straining until i feel my head's going to pop. I can feel the stricture. It feels exactly like it did when there was a tumor there! I almost feel like i've gone through the last two years of treatments for nothing. Every day is different as far as how often, or how long it lasts, but the end is always the same. I've been doubling up my percocets, but it's not working all that great. Tomorrow, i may triple them. I don't know what else to do. I told the doctor i want another ostomy. I think they think i'm kidding!

Remember the fears i had before the surgery? Did i manifest them?!!! I've already done my bargaining with God, and that's not working. Tiny, what am i going to do??? Does anyone know?

Many hugs,
Krista
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Comments

  • nudgie
    nudgie Member Posts: 1,478
    I did not have a ileostomy, I had a ostomy on my left side (sigmod colon) which as reversed. My surgeon gave me a liquid stool softener to take, I think, twice daily. This really helped. In addition, I could not leave the hospital until I passed gas and a stool.

    Drink plenty of water and if possible, walk. Walk around the house, to and from the mailbox, or down to the corner and back. Have you tried foods high in fiber like:

    Fiber One Cereals
    Fiber One Breakfast Bars
    Fruits and Veggies
    Raisin Bran
    Breads, etc.,

    I know when I started drinking plenty of water, eating the proper high fiber foods, and began working out again, it really started keeping me regular, but the main ingredient(sp?) that keeps me regular is water. I never drank water before being DX. I was a very heavy coffee drinker, soda drinker and only really ate once daily and not the right foods and worked out alot which in fact damaged my insides.

    Most important speak with your doctors and surgeaon about the issues and your concerns and see what they can recommend.
  • PamPam2
    PamPam2 Member Posts: 370
    Krista
    Have you talked with your doctor? I know that the pain pills(percocets) are very very constipating. Maybe the doctor can prescribe you something like miralax, it is mild and you mix it up every day to take. Drink a lot of water, it takes the intestines quite a while to get used to working again. All that straining can't be good, expecially after surgery. Do thay have you on anything to help with the constipation? What helped me a lot was eating a teaspoon of ground flax seed every day, with lots and lots of water. Hope you can get some releif soon.
    Pam
  • NWGirl
    NWGirl Member Posts: 122
    First couple of months were the worst for me
    For me, the first couple of months post reversal were the hardest. I also had the constipation issue - and always feeling like I had to go. What helped the most those first couple of months was a stool softener pill and a fiber pill. I just took 1 each a day and they really helped. Eventually I started going every other day with the fiber pill as I found it was making me go too much. Now - almost 6 months out, I don't take either of the pills. I still have good days and bad days. Things are still improving, but very slowly.

    Those first couple of months I really thought I'd made a huge mistake by having the ileo reversed. At times I still do. People think you're crazy to say you wish you still had the bag at times - but life with the bag wasn't such a bad thing! In many ways my quality of life was better with the ileo.

    Pain meds never worked for me on this type of pain either. But a nice glass of wine will take the edge off.
  • kristasplace
    kristasplace Member Posts: 955
    Some relief
    Thanks you guys! I know the percs are constipating so i've been taking two stool softeners, one in the morning, and one at night. I haven't spoken yet to my doctors about it because when i've mentioned my concerns to them about this beforehand, they each one told me that everyone is different, and they don't know what to expect. Probably a very true, but useless statement! I'm experimenting with different things, such as this morning, i'm NOT going to drink a Glucerna. I think that's what's triggered the last two bad attacks. Luckily, i've always been an avid water drinker, and now i'm trying to drink even more. It does seem to help. I think i'm going to just eat soup today.

    I forgot to mention that i'm on a wound vac. I had never heard of these things before now. Has anyone used one before?

    Many hugs!
    Krista
  • scouty
    scouty Member Posts: 1,965
    It does get better Krista
    I had a colostomy for 26 months and didn't really have constipation issues once I stopped taking the pain killers (that was over 3 years ago). I also got some great advice.....want to poop soft, eat soft, if you eat hard foods your poop will be hard. The water will help and it's good you stopped the Lucerna (it has all sorts of stuff in it that may upset things). Once you reteach everyone what they have to do you'll probably be able to. Remember you had part of an organ removed and what's left has to learn to redistribute what the cells do. It does take time.

    Now I find that the only time I get constipated is when I go out of town and eat processed and chemically altered foods. I have much more of an issue with diarhea but have learned what sets that off mostly too.

    Lisa P.
  • Shayenne
    Shayenne Member Posts: 2,342
    scouty said:

    It does get better Krista
    I had a colostomy for 26 months and didn't really have constipation issues once I stopped taking the pain killers (that was over 3 years ago). I also got some great advice.....want to poop soft, eat soft, if you eat hard foods your poop will be hard. The water will help and it's good you stopped the Lucerna (it has all sorts of stuff in it that may upset things). Once you reteach everyone what they have to do you'll probably be able to. Remember you had part of an organ removed and what's left has to learn to redistribute what the cells do. It does take time.

    Now I find that the only time I get constipated is when I go out of town and eat processed and chemically altered foods. I have much more of an issue with diarhea but have learned what sets that off mostly too.

    Lisa P.

    Wow....
    With all this talk about how Bowel movements are how painful it is to have a reversal, I'm afraid to get my colostomy reversed...I can get it reversed in 6 months, but who knows, I think I may stick with the bag! lol! It's really not that bad, but the reversals sound like people are having such a hard time with!

    Krista, I had a wound vac on me for 5 weeks, while my incision healed from the colostomy incisions, and it healed the wounds great and alot faster then using regular dressing..I had never heard of it either till they gave me one, and it was just removed a couple weeks ago :)

    Talk soon!
    ~Donna
  • snommintj
    snommintj Member Posts: 601
    Shayenne said:

    Wow....
    With all this talk about how Bowel movements are how painful it is to have a reversal, I'm afraid to get my colostomy reversed...I can get it reversed in 6 months, but who knows, I think I may stick with the bag! lol! It's really not that bad, but the reversals sound like people are having such a hard time with!

    Krista, I had a wound vac on me for 5 weeks, while my incision healed from the colostomy incisions, and it healed the wounds great and alot faster then using regular dressing..I had never heard of it either till they gave me one, and it was just removed a couple weeks ago :)

    Talk soon!
    ~Donna

    I planned ahead for my reversal. Lots of fiber, juice, and probiotics. I don't know how long it has been since you last used your colon but things take time to get back in the swing of things. Stop with the percocets, you'll never go correctly. Maybe ibuprofen will work. I talked with several people whioe reconnected colon doesn't always work in sync. The one section doesn't always fire with the second. So you will feel like you have to go, but the other section just isn't ready, so you'll have to wait until the lower section tells you to go. When I had my reversal, I know it was hard to tell the difference between passing gas and number two. So for the first month or so I sat down no matter what. If you feel like you're gonna have to go, eat something and drink a glass of water a few minutes before, that will cause your liver to pump bile into your colon which will help go. Hydrate yourself. Water helps go.
  • Moesimo
    Moesimo Member Posts: 1,072
    I can relate
    I know what you are going through. I had such a hard time after my ileo reversal. I did not have a stricture, but I had alot of radiation damage. I only had 4 out of 12 postop chemo treatments because I had so much diarrhea. I went back to work part time 8 weeks after the reversal and started chemo at the same time. It was not fun. My bottom was so raw from all the trips to the loo.

    18 mos. after my reversal I made the hardest decision of my life and had a colostomy done. I haven't looked back. Life is good now. The best news is that is has been 6 years since my diagnosis of stage 3 and I have remained cancer free. I am going for a cat scan today, this is the first time it has been a whole year since my last scan.

    You can email me if you want and I might have some ideas to help with the bathroom issues,

    Maureen
  • tiny one
    tiny one Member Posts: 465
    new plumbing
    Hi Krista! Right after my reversal I was in the bathroom as much as 19 times in one day for 30-40 minutes or longer at a time. I would think I was done but wouldn't be. I did sitz baths and pain pills and anxiety pills when the pain got so bad. Then one day I just wanted the pain to stop. Taking all my pills at once crossed my mind. I called a counselor instead. I found fiber wasn't good for me. Your new plumbing isn't used to being used. The control will come but it will take awhile. I found that a good barrier spray is Cavilon no sting barrier spray. Convatec protective ointment is good. I have a prescription cream it's Proctozone-HC 2.5%. It works very well. Use exra soft charmin. Don't wipe try to pat clean. Your tissues will stay irritated, try to keep barrier cream or spray on to help heal. Lomotil was my godsend but I don't know if it's to soon. Immodium might help slow things for you. My stool is always very small and very soft. Mine is due from rectal narrowing from radiation. Some foods, baked chicken usually always agrees with me. Avoid broccoli, cauliflower, anything that is gassy. Avoid fried foods for a while. Look up low residue diet, it may make it alot easier for you. I didn't want to eat because if I ate I would have to go. I decided that I had to eat. My surgeon wasn't helpful at all after my reversal. If it weren't for my lomotil I would seriously think of having the ostomy again. It does get better. There may be a better pain med for you. Maybe an anxiety med would ease the discomfort also. I know how tough this is, I was hoping you're reversal was going to be easy.
  • kristasplace
    kristasplace Member Posts: 955
    The looming gun
    I know it isn't funny to joke about, and truly i'm only half joking when the thought of using my boyfriend's gun has crossed my mind. Then i get to seriously thinking about what that would mean, and i simply get back on the toilet, and cry in agony.

    I'm taking smoking up again, and i'm using drugs that aren't prescribed to me. I feel i have no choice but to do whatever it takes to lessen the suffering. My doctor wants me to get a CT scan. Hell, she knows damn well there's a stricture there, that's why this whole thing got delayed in the first place! The last two days have been worse than any, i think. Constantly in the bathroom, and when not straining to go, then feeling like i desperately need to. I tried sitting in the bathtub for as long as possible, and that made me go, but then the pain was so excruciating, i just ran around trying to get rid of it. Something else is going on besides the painful stricture, and lack of being able to go. I think i may have cracked my sacrum again. The pain from going potty makes it hurt unimaginably. No sitting, laying down, or stretching calms the pain. I've decided once i get the pain and urge somewhat under control, i'm going to go to the ER. I realize that any consideration of suicide is too serious to ignore. Even if i don't have the guts to actually do it.

    Thank you all for you advise. John, i can feel that you're right about the lower part and upper part not cooperating with each other. The urge to go produces one little turd, and i can feel the rest up higher trying to get through.

    Maureen, i am definitely considering the perm colostomy. I'm sorry Shayenne if this is scarring you. I think if you have it reversed quickly, you may not have this problem. Most of us had our ostomies for over a year.

    Many hugs,
    Krista
  • msccolon
    msccolon Member Posts: 1,917

    The looming gun
    I know it isn't funny to joke about, and truly i'm only half joking when the thought of using my boyfriend's gun has crossed my mind. Then i get to seriously thinking about what that would mean, and i simply get back on the toilet, and cry in agony.

    I'm taking smoking up again, and i'm using drugs that aren't prescribed to me. I feel i have no choice but to do whatever it takes to lessen the suffering. My doctor wants me to get a CT scan. Hell, she knows damn well there's a stricture there, that's why this whole thing got delayed in the first place! The last two days have been worse than any, i think. Constantly in the bathroom, and when not straining to go, then feeling like i desperately need to. I tried sitting in the bathtub for as long as possible, and that made me go, but then the pain was so excruciating, i just ran around trying to get rid of it. Something else is going on besides the painful stricture, and lack of being able to go. I think i may have cracked my sacrum again. The pain from going potty makes it hurt unimaginably. No sitting, laying down, or stretching calms the pain. I've decided once i get the pain and urge somewhat under control, i'm going to go to the ER. I realize that any consideration of suicide is too serious to ignore. Even if i don't have the guts to actually do it.

    Thank you all for you advise. John, i can feel that you're right about the lower part and upper part not cooperating with each other. The urge to go produces one little turd, and i can feel the rest up higher trying to get through.

    Maureen, i am definitely considering the perm colostomy. I'm sorry Shayenne if this is scarring you. I think if you have it reversed quickly, you may not have this problem. Most of us had our ostomies for over a year.

    Many hugs,
    Krista

    dear heart, please get some help ASAP
    My heart breaks reading your post. PLEASE go IMMEDIATELY to the ER for some help. Tell them about your suicidal thoughts and the excruciating pain you are in. Cancer SUCKS!!!!! I wish I could help, I am praying for you, sista!
    mary
  • tiny one
    tiny one Member Posts: 465

    The looming gun
    I know it isn't funny to joke about, and truly i'm only half joking when the thought of using my boyfriend's gun has crossed my mind. Then i get to seriously thinking about what that would mean, and i simply get back on the toilet, and cry in agony.

    I'm taking smoking up again, and i'm using drugs that aren't prescribed to me. I feel i have no choice but to do whatever it takes to lessen the suffering. My doctor wants me to get a CT scan. Hell, she knows damn well there's a stricture there, that's why this whole thing got delayed in the first place! The last two days have been worse than any, i think. Constantly in the bathroom, and when not straining to go, then feeling like i desperately need to. I tried sitting in the bathtub for as long as possible, and that made me go, but then the pain was so excruciating, i just ran around trying to get rid of it. Something else is going on besides the painful stricture, and lack of being able to go. I think i may have cracked my sacrum again. The pain from going potty makes it hurt unimaginably. No sitting, laying down, or stretching calms the pain. I've decided once i get the pain and urge somewhat under control, i'm going to go to the ER. I realize that any consideration of suicide is too serious to ignore. Even if i don't have the guts to actually do it.

    Thank you all for you advise. John, i can feel that you're right about the lower part and upper part not cooperating with each other. The urge to go produces one little turd, and i can feel the rest up higher trying to get through.

    Maureen, i am definitely considering the perm colostomy. I'm sorry Shayenne if this is scarring you. I think if you have it reversed quickly, you may not have this problem. Most of us had our ostomies for over a year.

    Many hugs,
    Krista

    I'm so sorry you're reversal has been a rough one. I did good all thru my cancer treatment, but my reversal was the one thing that made me think about suicide. I couldn't stand the pain. I self medicated to stop it. Please put a call in to your surgeon and tell them how bad it is. My surgeon sounded like he didn't have a clue as to how much pain and mental pain I was in. My oncologist was a lot of help to me. There could be something else going on that's causing your discomfort besides the reversal. Go to the ER. I'm saying prayers and I'll be checking the board later to see how you're doing.
  • karguy
    karguy Member Posts: 1,020
    lleostomy reversal
    Please go to the ER as soon as you can,get yourself checked,and get some medication for the depression.That's what I had to do.Talk to the dr. and see what they can do to help you work thru the pain.I tripled the vicodan's and it didn't help.I talked to the surgen,took my medicine ,and did alot of walking,even though it hurt,I did it anyway,and it helped.I'm sorry I can't help with the reversal,I have a permanant colostomy,that's where my tumor was.PLEASE go to the ER,and don't think about suicide anymore,that's not a solution,I know.
  • kristasplace
    kristasplace Member Posts: 955
    ER
    Well, i did go to the ER the night before last, and guess what?? The doctor didn't do a damn thing for me! What a surprise! I told him i was in agony, and he did some x-rays and confirmed i'm impacted, then sent me home with a miralax prescription. So far, it hasn't helped a single bit. I'm going to the bathroom less often, but i'm not passing hardly anything either. Just bits and pieces. I feel a little more in control as far as being able to stop and get off the potty when i feel there isn't any more coming. But i know i'm just getting further and further impacted. I only had to take two percocets today so far, but i feel like a ticking bomb. I didn't eat until dinner, and just had a few bites of things, hoping that would get something moving. I'm afraid of my own body, it sucks.

    Thank you for all of your advise. I will definitely hang in as long as i can.

    Many hugs,
    Krista
  • lisa42
    lisa42 Member Posts: 3,625
    Hi Krista,I'm sooo sorry to
    Hi Krista,

    I'm sooo sorry to hear what a horrible time you've been happening. Call Dr. R. right away and get your CT set up ASAP- explain to her what an emergency it is and what pain you're having! Also, you need an MRI of your pelvis asap too, to see if you've really cracked it again. As others have already said, you've got to stop self medicating with the cigs and whatever else and get on some antidepression meds. PLEASE call and make these arrangements first thing Monday a.m. If things get worse between now and then, go to the E.R. again right away, but go to a DIFFERENT hospital than where you just went this time and demand a CT or MRI, not just an xray. Did you tell the E.R. about your suicidal thoughts? I know that sometimes getting into a psychiatrist or other Dr. about starting on antidepressants can take a while. Hopefully you can get an appt w/in a couple of days. If not- see if they can't give you a prescription for some kind of antidepressant in the E.R.

    I'm thinking of and praying for you-
    Keep in touch with us!
    Lisa
  • kristasplace
    kristasplace Member Posts: 955
    lisa42 said:

    Hi Krista,I'm sooo sorry to
    Hi Krista,

    I'm sooo sorry to hear what a horrible time you've been happening. Call Dr. R. right away and get your CT set up ASAP- explain to her what an emergency it is and what pain you're having! Also, you need an MRI of your pelvis asap too, to see if you've really cracked it again. As others have already said, you've got to stop self medicating with the cigs and whatever else and get on some antidepression meds. PLEASE call and make these arrangements first thing Monday a.m. If things get worse between now and then, go to the E.R. again right away, but go to a DIFFERENT hospital than where you just went this time and demand a CT or MRI, not just an xray. Did you tell the E.R. about your suicidal thoughts? I know that sometimes getting into a psychiatrist or other Dr. about starting on antidepressants can take a while. Hopefully you can get an appt w/in a couple of days. If not- see if they can't give you a prescription for some kind of antidepressant in the E.R.

    I'm thinking of and praying for you-
    Keep in touch with us!
    Lisa

    I know...
    Thanks, Lisa!

    Yes, i told the ER doc that Dr. Ramamoorthy wanted another CT, but he didn't want to do it because he knew how many times i've been zapped, and he says each new zap of the CT deepens more cancer risk. I didn't think about that before. I had always worried about my kidney's with all the contrast. I do appreciate that he cared that much, because, OMG, i've had probably two dozen CT scans in the last three years! As far as the MRI, i panicked during the last one, and don't know if i can stand another. I just don't know what solution there can be except that my body learns to function properly on it's own. We'll just have to see.

    I'll let you know what Dr. Ramamoorthy says on Monday.

    Many hugs,
    Krista
  • tiny one
    tiny one Member Posts: 465

    ER
    Well, i did go to the ER the night before last, and guess what?? The doctor didn't do a damn thing for me! What a surprise! I told him i was in agony, and he did some x-rays and confirmed i'm impacted, then sent me home with a miralax prescription. So far, it hasn't helped a single bit. I'm going to the bathroom less often, but i'm not passing hardly anything either. Just bits and pieces. I feel a little more in control as far as being able to stop and get off the potty when i feel there isn't any more coming. But i know i'm just getting further and further impacted. I only had to take two percocets today so far, but i feel like a ticking bomb. I didn't eat until dinner, and just had a few bites of things, hoping that would get something moving. I'm afraid of my own body, it sucks.

    Thank you for all of your advise. I will definitely hang in as long as i can.

    Many hugs,
    Krista

    feeling bad
    I to felt like no one was helping. When things got so bad I would reach for my pain pills and anxiety meds and literally make myself sleep. It gave me some relief. I got more help from my oncologist, he's the one that prescribed my lomotil not my surgeon. Some people get blockages when they take this drug but for me it's given me my life back to be active. I'm saying prayers for you. My reversal was and has been the worst thing that I've ever been thru. Please reach out for help. I found a great comfort in the Counselor at our Cancer Center. She literally saved my life. For awhile I didn't want to eat, because it would cause the pain to come. I had to force myself to eat. After my first surgery my weight was very low. It has stayed very low since then. How many days were you in the hospital from the reversal? I was in 3 days and never had any pain at all from it. Please keep us posted.
  • rmcgraw
    rmcgraw Member Posts: 15
    Stricture
    You may indeed have a stricture. I developed one right after bowel obstruction surgery. Kind of felt like I was sitting on someone's big fist 24/7. Hurt like he--. When I finally convinced my doctor I was serious, he scheduled a "dilation". In other words, he stretched it. Didn't work. Tried again, didn't work. Changed doctors, tried again, it worked. At that time, he said the opening was about the size of a ball point pen head. It pretty much stayed open for several months and then started to close back up. I could tell it and alerted him. He scheduled another "diliation" and opened it back up.

    I had a ileostomy and to be honest, life since reversal has not been easy. I have gone through periods of explosive diarrhea? to severe constipation. I have tried the colon retrying process, Miralax, just regular laxatives, herbs, etc. Right now I am on Amitiza and so far it is working..maybe a little too well but the doc did say it would be trial and error to get to the right dose. He also said that I might have to add miralax back in if stool too hard or add fiber if too loose. Trial and error but things are getting better.
  • kristasplace
    kristasplace Member Posts: 955
    rmcgraw said:

    Stricture
    You may indeed have a stricture. I developed one right after bowel obstruction surgery. Kind of felt like I was sitting on someone's big fist 24/7. Hurt like he--. When I finally convinced my doctor I was serious, he scheduled a "dilation". In other words, he stretched it. Didn't work. Tried again, didn't work. Changed doctors, tried again, it worked. At that time, he said the opening was about the size of a ball point pen head. It pretty much stayed open for several months and then started to close back up. I could tell it and alerted him. He scheduled another "diliation" and opened it back up.

    I had a ileostomy and to be honest, life since reversal has not been easy. I have gone through periods of explosive diarrhea? to severe constipation. I have tried the colon retrying process, Miralax, just regular laxatives, herbs, etc. Right now I am on Amitiza and so far it is working..maybe a little too well but the doc did say it would be trial and error to get to the right dose. He also said that I might have to add miralax back in if stool too hard or add fiber if too loose. Trial and error but things are getting better.

    Dilation
    Yes, i may need another dilation. I had three prior to the surgery. The miralax, or something seems to be working very slowly. I totally know what you mean about sitting on a fist. It's horrible. Today was a very bad day. Six percocets already, and it's barely night time. I'm in for it tonight. Yesterday was better, the day before that, hell. I see my primary doc on Thursday, and i'm going to ask her for an arsenal of drugs to experiment with. I'm sure now that i have recracked my tailbone, and that pain is just the most horrible thing in the world. It won't stop, even with the percs, once it gets going from straining. I never in the two years since my diagnosis asked "why me?". Now i'm beginning to wonder! Something spectacular better come from all of this!

    Thanks again, guys!

    Many hugs, and much love!
    Krista
  • FAPMom47
    FAPMom47 Member Posts: 68
    I am so sorry for your pain
    I know how you feel, I had to go to the er. And I went there for rectal pain and they did blood work,x-rays and an I V. Well after waiting for 3 hours I did not find out until I left they had me down with abdominal pain, which was wrong. I have a witness as to why I went and I have called and left alot of messages but no one has returned my call. I had the opposite of your problems, I have an ileostomy that is runny. We are not able to thicken it at all. It's permanent and for the last 4 years it's been like that. I will not go to the er close to home anymore, if I have to drive 2 hours I will go where they know what they are doing. Hope you get to feeling better.
    MANY HUGS AND PRAYERS
    JACKIE