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Ileostomy Reversal...OMG!!

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

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

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

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's picture
PamPam2
Posts: 376
Joined: Jan 2009

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
Posts: 124
Joined: Jan 2008

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's picture
kristasplace
Posts: 956
Joined: Oct 2007

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's picture
scouty
Posts: 1976
Joined: Apr 2004

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's picture
Shayenne
Posts: 2370
Joined: Jan 2009

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's picture
snommintj
Posts: 602
Joined: Mar 2009

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.

Wa
Posts: 4
Joined: Jun 2009

Hi there - I am a stage 4 rectal cancer survivor and also had an ileostomy reversal (feb, 2009), but since then, I was redigonsed and the cancer mets into my liver (2 tumors). I had a liver resection, underwent more chemo, etc. I am now Cancer free, but am still trying to find my footing mutirtionally, so that I am not going anywhere from 4-10 times a day. My last chemo was March, 2009;

What is your diet like...what do you eat that helps regulate you? I went to a nutritionalist, but she was straight out of college and basically xeroxed a nutritional worksheet and called it a day. I am hoping someone out there who has had a similar experience can assist me in finding the right foundation for my diet. I take a multi-vit and probiotics. About 9 inches of my colon and 1/2 of my rectum have been removed, so there is little to no storage capacity for BM's. Please advise re: your diet plan. Thank you in advance.

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

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
Posts: 467
Joined: Jan 2009

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's picture
kristasplace
Posts: 956
Joined: Oct 2007

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's picture
msccolon
Posts: 1956
Joined: Oct 2004

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
Posts: 467
Joined: Jan 2009

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's picture
karguy
Posts: 1024
Joined: Apr 2009

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's picture
kristasplace
Posts: 956
Joined: Oct 2007

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

tiny one
Posts: 467
Joined: Jan 2009

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.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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's picture
kristasplace
Posts: 956
Joined: Oct 2007

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

rmcgraw
Posts: 15
Joined: Mar 2008

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's picture
kristasplace
Posts: 956
Joined: Oct 2007

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

serrana
Posts: 163
Joined: Apr 2009

I am sorry to hear what you are going thru; I am 18 months from my ileo reversal and feeling finally pretty normal after many days of agony with a body that didn't know how to behave. I felt like giving up too. Just know that it will get better, it just takes far longer than they tell you. There are some things you must do to help your body learn it's new behavior: for constipation......... walk alot, do NOT take pain meds at all except for advil/aleve because they alone can cause the terrible constipation, drink two or more quarts of water a day, take at least 20 grams of fiber a day, take prebiotics and probiotics. Check out the MD Anderson website re retraining your bowels.
I hope by now you have seen a doc who can diagnose the pain and other problems you think might be contributing to the situation. Sounds like you are in San Diego if you are seeing Dr. Ramamoorthy...have her paged, send her an email, don't let them give you the run around.

FAPMom47
Posts: 68
Joined: Feb 2009

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

qwe
Posts: 125
Joined: Jan 2009

I also Had a wound vac for 5 weeks and it helped when the wound gets to
a certain point they will take it off and do the dressing to finish the healing
that is what I am doing now my wound started at 1 1/2" long and 2 1/2"deep
that happened when they took the staples out.

tiny one
Posts: 467
Joined: Jan 2009

I hope your issues are better now. The last few days I've been in the potty alot myself. I've started keeping a food journal, maybe I will be better able to find my trigger foods. Some foods I miss but not worth the pain. Feeling like you have to go with all the pressure and right now is hard to get used to. The colon doesn't like to be operated on. I've had alot of relief from lomotil. Some days I know not to take it and let nature take her course so I don't block up but I get about 6 hours where I'm not in the bathroom. Talk to your surgeon. When was your takedown? I'm wanting to get a second opinion, if they can't make the potty issues better I may chose to have the bag back on. No more pain, no more sitting in the bathroom for long periods of time and I could eat hopefully anthing I wanted with out consequence.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

How have you been doing lately with your issues? is anything getting any better? haven't heard from you :(

Hugsssss!
~Donna

tiny one
Posts: 467
Joined: Jan 2009

Hey Krista how ya doing? Hoping to have an update. I hope you're doing better. I know that this is a rough road to be on.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi, Krista
We've never spoken, but I read your posts and was concerned about the pain you were having.

I never had an ileostomy or a temporary or permanent colostomy - I was dead set against it. I told 'em all, if you have to do a colostomy, then don't wake me up. I was scared to even do a temporary, because I feared it would become permanent, because I had so little margin to work with in the rectum - I got by with just millimeters literally...I was lucky or so I thought.

The next 2 years were sheer agony and I thought if Life is going to be like this, forget about it. I see now why they do temps - so the colon can heal. I had alot of radiation damage too and my doctors said my insides looked like fried bacon. So, it was very painful. I used to have to get in very hot baths to kill the pain. And I hurt so bad, I could not even walk during those days - so sore from the pain and you would be raw from all of the trips to the bathroom - I found a hot bath bathed those tissues and using some of those creams also helped.

I'm 5 years out now and it has taken that long "to heal" and get things to where they are workable. The way it was explained to me was that the NEW BOWEL has to re-learn who it is and how to operate - after all we reworked the original plumbing.

-Craig

Gixxerman
Posts: 4
Joined: Dec 2009

Wow, I'm getting nervous.

First, let me say to Krista and others I hope you are feeling better. Cancer sucks and it's not fair that even when it's gone it continues to rob us of our quality of life.

I'm about a month away from reversal and reading these post makes me wonder. Not whether I want to do it - I still do - but how bad it will be. Has anyone had a good experience? I had my ileostomy on Dec. 1 , it will be almost exactly 6 months when it comes off. Does that matter? Is it worse when it's been much longer? From the day I came home with it I've been looking forward to getting it off. Like Sundanceh I just got by as far as the margin. It was very close to the anus.

The night I came home from the hospital I searched for "ileostomy reversal" and found this site and thread. I read it and was a bit concerned but it was a while off at that point. I came back to read it occasionally. Now it's getting closer and I am thinking about it more. I hate this thing. I woke up again this morning to find that I had rolled over in my sleep and the seal broke. Nice. That hasn't happened in a while but when it does it sucks.

To be honest, my overall experience has been somewhat puzzling to my doctors. First of all, the discovered the cancer at the same doctor visit when they discovered I had a bad aortic valve and aortic aneurism that needed to be repaired ASAP. Had to have that done before they would do the caner surgery. I also had chemo/radiation and had very little reaction to it. Just a bad rash from the radiation, the chemo didn't bother me. I had a full clinical reaction to the treatments, meaning the cancer was gone, which they said happens but is pretty rare. Through the surgeries, recovery and subsequent treatments, I have really had few complications. Never lost any hair, never got sick or even nauseous from the chemo. My oncologist wondered out loud whether I was taking the pills. I start my last of 15 weeks post-adjuvent chemo this week. But now I'm getting nervous about the reversal.

Can anyone offer any positive experiences about the reversal to those of us looking forward to it?

Thanks and I hope all are well.

Anonymous user (not verified)

This comment has been removed by the Moderator

teddybeargirl
Posts: 3
Joined: Aug 2010

I have had half my rectum and 10 inches of bowel removed then had colostomy reversal. My bowel and rectum have been stapled and stitched back together and Ive had radiotherapy to the area. The join is very low down in the rectum.

As far as I am concerned it was a mistake for me to have had the reversal and I'm now thinking of going back to having a bag.

Maybe it depends on what treatment youve had and how everything is rejoined.

Thinking back I found it much more convenient to have my "temporary rectum" round the front. Easier to clean and easier to unblock if I got constipated. Used to have fun popping them cannon balls out of there! haha! I really only had a reversal coz I found it difficult finding trousers to fit me properly. A lot of womens trousers these days are low slung hipsters or the trouser band would lie right across the stoma sometimes rubbing it and making it come off.

Unfortunately things are not working out for me and I will probably go back to having a bag. But everyone's different and you never know until you try!

X

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Krista- I'm having sympathy pains right along with you girl. Oweeeie!

After reading about all the post-ilesotomy troubles here and at the Colostomy Associaition Board, I was cared to death of getting a reversal. As much as I hated the poo bag, once my anorexia was starting to subside and we managed the out put, I was "OK" with the bag.

My surgeon was adamant about reversing during surgery for a bowel obstruction.

My post-reversal issues really only lasted about 2-3 months. At first, I was maybe having a BM every 2 days. It would take a while, and be painful. Alternated with "running to the john". I resorted to Depends and those pads they use in the hospital over my bed sheets. I had 2 bedpans on the bed with me so I could do a quick change- no time in between.

Every evening I'd have a bout of butt cramps - sharp pains that would eventually subside.

Yes it sucked, but it did get better and a lot sooner than I anticipated.

Like other responses, you will need to find that magic potion of what works for you in terms of water, diet, supplements. I really didn't do anything special, I'm really bad at taking meds and supplements consistently...I do recall that anytime I had good italian food, and the bread dipped in olive oi, i had a "normal" movement!

OK, enough poo talk. I so hope your pain subsides soon....hang in there, it WILL get better

Peggy

khl8
Posts: 810
Joined: Nov 2009

Ok People,
Remember, everyone is differnet! I too had a reversal this past Septmeber, but I had none of the problems like Krista! Yes I admit the first 2 week I could easily poop myself as I was retraining the sphincter muscle, but it did get better with time. jsut like any abdominal surgery it takes time to heal and get things working again.
I personnaly went on an eveyday coctail of miralax until it became more regular. If any body needs to hear about more, just let me know. I don't regret my reversal for one mintue!
Kathy

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Krista,

I have not had an Ileostomy but I have had some painful bowel movements from the resection. I know the small drops, frequent visits, uncertainty, urgency issues, and the bad feeling of not having the normal bathroom visits. Please remember that this will get better. Just keep focused on when things get better. I kept repeating to myself "I can do this..." Give your body the rest it needs. Also, it has been important for me to eat regularly that is 3-6 small meals a day. Apples, prune juice, homemade muffins with flax, oatmeal, pumpkin, raisins, applesauce etc. I hope some of this helped - I am better now than I was 6 months ago. Hang in there. It will get better. Give your body the time it needs to recover. Remember - You can do this.
--

classicman's picture
classicman
Posts: 34
Joined: May 2010

I too had a reversal just this past March 24th, was in Barnes hospital 3 days and sent home After 4 or 5 movements of mucus and some soft stools, i too suffered the severe pain or feeling of the urge to have a movement and i did have several accidents, at first, then we read about usingfiber in the diet, and taking Imodium on a regular basis, i also use an overnite mens pad just incase i have an accident, i am back to work full time as a corrections officer at a county jail, I hated having my Ileostomy, i felt it was the worse 9 months of my life aside from all the chemo and radiation, and i did have second thoughts about the reversal, but im sure with time my body will hwal and i'll adjust just fine

teddybeargirl
Posts: 3
Joined: Aug 2010

Hi Krista and everyone else!

I had a colostomy reversal 2 years ago and am having terrible rectal pain problems now. Though for the first year after reversal I just had the usual problems of going to the loo a LOT! But no pain. 2 years on I'm experiencing worsening pain which my doctors say is caused by the scar tissue and effects of radiotherapy. The pain is excruciating and no pain killers touch it, so I am wanting to go back to having a colostomy.

Anybody else having this problem?

Mistycool25's picture
Mistycool25
Posts: 1
Joined: Aug 2017

How long after your chemo/radiation did your bag come

off? I have two more weeks of chemo radiation, and I was told I get a two week break then I get a port for the stronger chemo.. but the same doctor that did my bag does the ports and is going to do my reversal and I have to say up until now have been looking forward to having it off.. also please tell me the reversal is easier than the installation because I was in pain, and I gave birth natural to two of my kids, and I have had kidney stones..

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Yes, this is an old thread, but I'm still here and happy to say that after some time, I was able to gain control over my stricture. It never got better per se; I can no longer be scoped it's so narrow, but my body knows how to push through it and the abdominal pain is only occasional now.

I don't for one minute regret getting the reversal. It was worth the torment to not be on a bag, at least for me. Some people do very well on a permanent ostomy, and strictures aren't the norm.

You sound like a very strong woman and will get through it. Just remember that it will take time for you body to readjust, so be patient. Also, marijuana helped in the beginning both with the pain, and with relaxing the stricture; if you live in a state where it's legal.

Much luck and best wishes!

Krista

I forgot to mention I had the bag for fifteen months.

 

danker
Posts: 1232
Joined: Apr 2012

You are responing to a 8 yr old thread!!!  Just start a new one and ask all your questions.  I'msure you will get many answers. Good luck!

Annabelle41415's picture
Annabelle41415
Posts: 6440
Joined: Feb 2009

This thread is so old.  If you want a history of ileostomy reversal, please look at my "About Me" page.  It will give you a history of what I've been through.  I'm due for an update on my site but it will give you a big story about it.  Good Luck

Kim

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