Toilet Habits After Surgery

[Beachy]

Hi all.

I recently had surgery for my Crohn's and i have been out of hospital now just over a week and a half. I have an abscess removed/drained and also alot of my small intestine removed including part where my small intestine and large intestine join together. I feel the doctors have given me no info of what to expect now that i have left hospital and i am finding my self struggling to walk for longer than 2 minutes, I walk to the kitchen and back to my chair and by the time i sit down again im hunched over.

Hunching is a great fear of mine as im 19 and i feel ill never be able to stand up straight again without the pain. Although ive been told this will all come with time over and over again, My main concern is my toilet habits, I feel like they are worse than before the surgery !!!!! I want to be able to go back to work but the horrible sensation of needing the toilet all the time is just taking over my life. It makes me not want to eat it makes me not want to go anywhere. I was never like this before, I never let it take over my life.

Will this go away? Has anyone else had similar surgery? I was almost given to stoma bags, but they managed to connect me back together.

I can deal with everything just not this feeling, I feel like i need to recover after every bowel movement, it sounds gross but its like constipated diarrhea its really hard for me to actually go but its a constant urgency.

Can anyone help me and give me any information. I just want to know what im expecting in the future. Although i know every chronie is different

thanks

 

[nogutsnoglory]

Your body is in trauma from the recent surgery so nothing is going to be normal for a while. Your pains, posture, bowel movements etc. don't be worried I am sure in time when the inside are healed you can stand up without limping around. Your bm should also become more regular if you no longer have active disease.

 

[Beachy]

Thank you for your quick reply.

Do you know how long roughly it takes? i have read alot on here saying years later there bowel movements are still bad. My surgeon says hes removed all active Crohn's and although i know it will eventually come back at some point but will these BM's stop x

 

[silverdiskdj]

Actually I have had a similar surgery to you, it sounds like. I had 40 cm of my small intestine removed, with the area that the ileum used to be (so where the small joins the large). 30 cm was that one area, and then another 10 was removed elsewhere. Sounds to me they took out more of yours, as I believe my surgeon said there is about 120 cm left of my small.

I am also about 1 1/2 weeks out. I think my pain tolerance must be really high, because I was actually off of narcotics for about a week now. I am just taking tylenol. I am also dealing with the same situation of hunching over, but not due to pain... just because of the tightness of the area where it is healing, so I guess I am having some pain when I straighten out due to the stretching. It has been getting better day by day, as has the pain and the oozing.

When I was in the hospital, I had walked 3-4x a day, starting the day after my surgery. That was the huge thing they wanted me to do... walk walk walk. I forced myself to get going, and after 5 days, things turned back on and I was eating solids again. Though they put me on a medicine called cholestyramine (Questran is the brand name). This is supposedly something that helps slow things down/takes liquid out, that having a short bowel issue causes. It really does help... as today I forgot to take it... and I am in the bathroom a lot more/getting more cramping.

How big is the opening, if you don't mind me asking? I think they opened up 3 inches of my stomach area, beneath my belly button.

Really... good luck to you, and keep positive! It will get better. That is what I keep telling myself everyday (though I am so very much longing for normal movement again without any incision pain, or any oozing).

 

[silverdiskdj]

Thank you for your quick reply.

Do you know how long roughly it takes? i have read alot on here saying years later there bowel movements are still bad. My surgeon says hes removed all active Crohn's and although i know it will eventually come back at some point but will these BM's stop x

And for length... I think I may be able to help. Every surgery is different... but my first surgery I had in 2007, it took a couple months for total normalcy, but one month before the incision wasn't an issue anymore, or oozing like it was. We shall see how long it takes me this surgery... but things so far have been pretty similar, even though I had double the intestines taken out this time...

 

[Beachy]

I am so so so so happy i have found someone the same as me, although i obviously wish that neither of us would have to go through such a thing.

Yeah my actual Crohn's pains seem to have gone as before my surgery i was in absolute AGONY. its just the hunching from standing straight makes me more tired and feels sore .. my scar is from the top of my belly button about an inch above right down to just on to my ( i dont know what to call it ha, girl parts.) the scar is healing lovely, just the bottom of it is still oozing a bit and open.

I havnt been offered anything to take for my toilet habits but my bowel movements did come back about 3 days after surgery.

Do you find walking helps alot?
And with the Questran do you find yourself going less now?
sorry for all the questions haha.

Also I am not taking pain killers since about 5 days ago, i hate taking pills so i would rather deal with that little bit of pain rather than take them, My sickness was horrendoes in hospital but since being home its gone away.

I hope you dont mind all the questions and i really really hope your recovery is speedy!!

 

[grt73]

Hi Beachy,
Sorry to hear you are having a crap time at the mo,
I had surgery a year ago, very similar to you but I ended up with a bag.
It takes a good couple of months to start feeling ok, I can completely relate to the moving around and going upstairs. After I first came out of hospital, had been in for eight weeks, I left with a bag of bits and the Internet to get me through, the docs were next to useless in fairness. I had to have half hours sleep after climbing the stairs, they felt like climbing a mountain. Standing up straight was impossible and walking anywhere made me out of breath. At the time, looking back I did a lot of crying. I know it feels like it will never get better but trust me it does. You just got to hang in there and try and do a little bit every day. As for your toilet habits, having a fair chunk of small bowel removed is going to make you go a whole lot more. Normally in a healthy bowel your food is digested and you absorb the nutrients from it. In a short bowel food has a lot less time to be absorbed thus causing two problems, malabsorption in which your body doesn't get as many nutrients as it needs ( this does improve by the way, in time what's left of your small bowel will readjust to get what it needs) mine took about six months I reckon and secondly due the first you end up going to toilet a whole lot more because the food is passing straight through you. Do you find there is undigested food in your pooh?
After any bowel surgery it takes quite a while for things to start working again. Intestines really don't like being touched too much and tend to shut down for a bit.
My only advice really is to try and eat high calorie foods that are easily digested, don't push yourself too fast, get loads of rest, if you are tired sleep! And don't be afraid to use this forum! There is a shed load of knowledge from people who have first hand experience. It's helped me loads:smile:

 

[grt73]

Oh and things like codeine and Imodium liquid were a great help in slowing things down a bit!

 

[silverdiskdj]

Sounds like your incision was almost identical to mine . Though with me being a guy, a bit different! I had 3 strictures they had to take care of... I was partially obstructing, so that was a majority of what they took care of on my end. I still sadly have inflammation, but they are hoping the medicine I take (Tysabri) will calm things down and put me in remission, now that the really bad parts are out.

Walking does seem to help. I walked more this time than my last surgery, and I strongly believe it has made my recovery go better than my last surgery.

I, too, had quite a bit of pain.. ESPECIALLY the day of my surgery. I remember waking up and they couldn't give me enough medicine to calm it down. It was absolutely horrible... but has since gotten better day by day. The tightness/soreness in the incision area is definitely normal from what I have read...same thing happening here! So it makes me feel even better that I am recovering similarly to someone else!

Yes, Questran/Cholestyramine (Cholestyramine is the generic version) has helped a lot with my bowels. Today, I didn't take any and I have gone probably 6-7 times already today (it is 3:30pm here right now, I am in the midwest in the USA). But when I have taken it... it ended up being maybe 3-4 times. It really helps a lot, especially this time when they took out more of the small intestines.

Again, no problem on the questions! It is great to have someone here who has had the same surgery as I have had... so I am really curious how your recovery goes as well! Please keep in touch!

 

[nogutsnoglory]

It's really hard to say but from personal experience I would say you should be in much better shape 2 months post-op. There still may be hardships but overall you should be doing well hopefully.

 

[Beachy]

GRT73, Thanks for your reply and advice. I suppose i am being impatient really and have only been out a week and a half. YES the crying is taking over me HAHA i just cry everytime someone says 'are you ok' or 'cant you stand up straight yet' I sat in my front room crying for about 10 minutes the other day because i knew i had stuff to take upstairs but i was far to weak and felt sick of asking people for help. I look back on these days and think im so silly, but then im the same again a few hours later. Crohn's is soooo hard mentally as well as physically. I dont find that i have anything undigested no, i just find that the constant feeling of wanting to go is there. which is such discomfort !!! & id do anything to get rid of it because i know il always go more than normal people but i cant actual live a normal life and go to work like this. Its embarrassing and really depressing. Its nice to know im not just being weak and that it is okay to rest and sleep. I spose alot of the time if im sat down now that i have had surgery i feel perfectly fine so i feel as if im being lazy yet the minute i try and do something im reminded, so in my head i think people are seeing me as sitting down being lazy when as a matter of fact im fine.
I just pray these toilet habits stop, and maybe i can feel happy again! I hope your feeling well

 

[Beachy]

Silverdisk Dj,

I was the same after my operation i was in the high dependency unit and i also got pneumonia, people seem to get extra illness's when going into hospital. So trying to cough with this horrendous abdominal pain was awful, it made my recovery alot worse.
Also i was given anti biotics for that, which made me violently sick and that also made my stomach feel like it was ripping apart!!

I feel as if i have come along way considering my surgery was only 3 weeks ago, but its proper pressure, as i said in my post above i feel people see me sat down fine, and think im being a lazy bitch. ha!
I live in the UK. I hope that is over here as i have a doctors appointment tomorrow and im going to ask her. The doctors are just so rubbish and they dont have a clue.
I went to the doctors with a fistula a few years ago ( i didnt know what it was at the time) and i got told it was an ingrown hair and was later on bed bound and in absolute agony like never before.
It was only until my specialist asked to see it she said what it really was a year later.
I really think Crohn's needs more awareness.
Can i ask does this medicane harden your BM aswell or just stop you going as often.
The often bit is what gets to me as i cant see my future with being like this.
I find it embarrassing when in a work place etc.

Please do keep in touch as it is nice for someone to speak to! especially with the same surgery and experiences as myself.
I have only just joined this forum tonight , and already i feel it was a good idea.
I had never spoken to another person with my illness before.
Just people who knew of others with the illness, (these people think they know it all which is infuriating) I hope i can support you as well!

 

[silverdiskdj]

I am soo sorry to hear you had pneumonia, totally sucks! I didn't have pneumonia, but I do have bad allergies so I had this post-nasal drip issue that caused me to cough stuff up... and that hurt. It wasn't until I applied A LOT of pressure to the surgery area with a pillow that it got rid of some of that pain... but it was horrible indeed! I can only imagine for you!

I was reading that cholestyramine may indeed be over there... or at least the other alternatives to it as well (I don't know what they are offhand... but I know there are others like it). It hasn't hardened the stool yet... thinking that may come either in a month when things heal more, or maybe never again, as it never solidified after my last surgery. It varies person to person. But at least it has slowed things down so I am not running to the bathroom constantly, or feeling like I have to go.

I had a fistula at one time as well... but I was on Remicade for 5 years, which ended up healing it up... too bad that medicine stopped working... it really was a miracle drug!

I agree with you on the awareness thing. I have dealt with so many things, from past jobs who didn't understand the disease (they thought my diet was why I was in the hospital, which I am on the best diet for myself... a low fiber/low residue diet). I just have learned to accept that there are some ignorant people out there... and just don't communicate with people like that. I also had some horrible doctors in the past who just started throwing random meds at me to see if any stuck. I moved to an area that has a research/academic hospital to where I had found doctors who know the latest, and really are the best I have ever had, and can take part in studies to help find more medicines for this disease. I think they even took some of my intestines they took out from the surgery to use for research, to hopefully help them find a cure for this horrible disease.

Listen to your body, and if you can rest... do it. You are definitely not a wimp in this all. All of our bodies recover at different rates. Most of all... keep positive, and know you have people to talk to that are going through similar things! That has been my greatest help since I have gotten this disease in 1998!

 

[Beachy]

I will definitely be asking my doctor about that, Just the rushing to go is what i hate so it will be really good if it just slows it down, I tried imodium and if they give me nothing at the doctors i may continue to give that a chance, I am not sure if you have that over there.

I was also on remicade for nearly 2 years, almost as soon as I was diagnosed.

it also stopped working for me hense the surgery haha.
The annoying thing was they noticed back in APRIL that it was slowly stopping working for me, this infuriated me because it got to the point where i had to stop work, quit university, and lie in bed in agony all day before they started tests so i could maybe start something new, by this time it was to late and parts of my small intestine were almost blocked, I really agree though, its a miracle drug for the time that it works. If only they could work on that and make it so it never stopped working, all us Crohn's people would be so happy !!

I never really found a diet that worked and didnt work although i did follow the same type of diet as you suggested.
My surgeon has said now the Crohn's has been taken out i should be able to eat what i like but it will pyscologically take me a while to not fear certain foods.
I still dont believe at all for a second I will be able to eat what i want because I still have Crohn's as they keep reminding me.

Its all so confusing but im going to eat everything and im sure in time my body will tell me if it doesnt like it.
I am lead to believe the food cant cause the Crohn's to come back it can only worsen the flare up.

But each doctor/dietitian tells you different.

I will be sure to post and let you know if the doctors prescribe me anything.

I am really glad i finally have had the courage to join the forum and not just read peoples posts on it!

It only made me worry reading other peoples posts that were kind of similar to my situation!

fingers crossed for a good recovery ey.

Thanks again!

 

[DustyKat]

Hey Beachy…:ghug:

Both of my kids have had the same surgery as you. My daughter’s resection was 68cm (2006) and my son 28cm (2011).

They both have had ongoing issues with bile salt malabsorption diarrhoea post op. I do think there has been natural take up over time but to control it on a daily basis and make their lives liveable, IYKWIM, they use psyllium. It has the same action as Questran, absorb the excess bile salts in the small bowel and therefore bulk up the stool by stopping the salts being dumped into the large bowel which in turn allows too much water to be absorbed back into the bowel (osmotic effect).

As to the movement issues you are having…with Matt I found he also had this and it wasn’t until the 4th week post op for him that he was able to start moving freely. Up to that point in time he found it painful to change position, as in lay to sit, sit to stand etc. He also was hunched over simply because it hurt to stand up straight but again about week 4 post op this to started to improve.

Remember, world war 3 has just taken place in your abdomen! :eek2: You will have extensive internal bruising and healing to take place. Everyones recovery time is different so don’t be too hard on yourself and expect too much too soon. Run your own race, push a little further each day but also listen to your body and take note of what it is telling you. :heart:

Two things both of my kids have had issues with diet wise post resection is red meat, hard to digest, and oil of any description, sends them bolting to the loo!

I hope you are soon feeling better and on top of things. Good luck!

Dusty. xxx

 

[Beachy]

Hi Dusty, Thanks for your post back to me.

I went to the doctors today, I mentioned that a lot of people I have spoken to has taken this Questran and it had worked, she looked at me and basically said ' I dont know anything about your surgery and illness so I dont want to be prescribing you anything'

My surgeon recently cancelled my follow up appointment and it takes months to get in with my Consultant. I actually cant cope any longer and im so unsure more than ever now what to do.

The only thing she said to me was dont take Imodium its dangerous.

So I just dont have a clue how i can help my self as I cant put up with it.

 

[grt73]

That sucks!
Good old doctors eh?
Thinking about it after resection, imodium probably isnt the best thing to be taking. The last thing your surgery needs is a complete blockage putting pressure on the resection.

It will get better I assure you, in the mean time you just got to hang in there and let your body recover a bit.
How much small bowel do you have left?
I only have 1.5m ish and although I have the dam bag, im emptying at least 8 times a day and 3 times a night. When I had my Op it was 20 times a day and 6 times a night. Drove me insane. I know its not rushing to the loo but it was still a pain in the arse, or not as the case maybe haha
every time it gets me down I try and think how lucky I am to still be here. Without the surgery it would have been a whole diferent story!
In 3 months or so I hope you can post that everything is starting to settle down, till then keep venting and trying to stay sane:ylol:

 

[DustyKat]

{Hugs} to you Beachy.

I will make some assumptions so I apologise if I am on the wrong track here -

So your surgeon cancelled your follow up appointment with him? Do you know why?
The follow up appointment with the surgeon is normally to discuss at greater length what occurred during surgery, what the pathology results revealed and to check that all is healing well post op.
Many a surgeon believes their handy work will essentially cure you of your condition and you can now go on your trouble free merry way. Unfortunately reality is vastly different and whilst the majority of surgeons are very good at what they do they are not the managers of chronic conditions.

Your consultant is your gastroenterologist?
If so regardless of the wait time get in contact with them now and explain your situation and the need to be seen ASAP.

By your doctor do you mean the GP?
If it is the GP you are talking about then to be honest I would be more surprised if she did know about the legacies of your surgery than if she didn’t. BUT that does not absolve her of responsibility in finding answers for you and educating herself about your surgery and what issues she may encounter as a result of it. That being the case she needs to pick up the phone and ring your GI and ask for advice on how to manage your condition.

Are you on maintenance meds post op?

When you do next go to the GP have them do a request for bloods to check the following and cc your GI into them:

*FBC - Full Blood Count
*LFT’s - Liver Function Tests
*UEC’s - Urea, Electrolytes, Creatinine. This checks your blood chemistry and kidney function.
*CRP and ESR - Blood inflammatory markers.
*Iron Stores - A more accurate measure of iron deficiency anaemia.
*B12 - This is one you will have to continue to monitor indefinitely. The body can store B12 for up to 5 years BUT the terminal ileum, you have had this removed, is the only area of the bowel where it is absorbed into the body. A deficiency of B12 leads to pernicious anaemia and the long term side effects can be permanent.
*Vitamin D, Magnesium and Zinc - You have the potential to be deficient in one or all of these and if so you need to supplement accordingly. Do not aim to be at lower end of the normal reference ranges of these but rather closer to the top. If you have normal results now these too are worth keeping an eye on over time.

It is worthwhile to have baseline readings of these bloods so you track trends as you move further away from your surgery date.

Dusty. xxx

 

[silverdiskdj]

I am so very sorry to hear about this. It sucks when you have doctors and surgeons who really aren't on the same page, and really aren't giving you the attention you need.

I would say stop the imodium like everyone else is saying. I can't believe your IBD doc couldn't give you cholestyramine. I believe if I saw her, and talked to her about the issue... she would do it. That is just junk. But... I will say after a couple months... things should start to regulate more. I think the intestine takes some time to get used to the missing intestine.

Agreed with Dusty below on the bloodwork, and what to get ordered. I am fortunate to have doctors who are very (and sometimes overly to the point of annoying) careful with me. I think late last year, I saw a calcium doc, my primary doc, and IBD doc... and all kept ordering a boatload of tests, blood and otherwise. It sounds like you may need to take these questions and such into your own hands to make sure your health is watched over.

Either way, stay positive... keep moving... and know that things will get better... only up from here now that the bad part is out!

 

[Beachy]

Thank you all so much for your support.

I actually get more sense and answers out of you lot, and your not qualified.
I have rang my old specialist who did my remicade treatment and visited me everyday while i was in hospital after my surgery, hopefully she can give me some answers and get things sorted for me.
She is the only person I have ever got ANY answers from, or who has ever sorted things out for me.
All your assumptions were correct dusty, sorry i am not very clear on who i am talking about half the time haha.
I have never been tested for anything to do with any of those things in the whole 3 years ive known about my Crohn's, except from anemia which i do have,
i cant tolerate iron and they promised me that i would get started on an infusion of it months ago but guess what. That didnt happen either.
I am so scared by the time anything gets sorted it will be to late, and il be stuck with all these long term side affects and problems for life.
I want to say to them i NEED this this and this but its so intimidating saying it to someone who knows all about the disease and stuff. I dont think i ever want to go to a GP again!!

 

[DustyKat]

If you have a good relationship with your old GI then push her to get the bloods done and your diarrhoea sorted. You will also need to discuss if you need to go onto maintenance medication.

As far as the GP goes…well to cut to the chase, as you educate yourself about your Crohn’s and become increasingly knowledgable about it there is no disrespect in saying you will very likely know more about Crohn's than your GP and a decent GP should recognise and acknowledge that fact simply because they are expected to deal with every condition and age of patient that presents at the surgery. They can’t possibly know everything about everything which is why there are specialists but again, it is their role to liaise with your specialist to ensure that you are receiving appropriate care. It simply isn’t good enough to say I don’t know about your surgery therefore I will do nothing.

Given your age I have absolutely no trouble in seeing why you would find it intimidating to question your GP/consultant or push for tests etc. Do you take someone with you when you go to appointments? Someone who is older, like a parent?

It is often very useful to do this for three reasons:
1. A second set of eyes and ears can often pick up on information that you may miss
2. if need be they can also help advocate for you.
3. Should you come up against a doctor that has ‘attitude’ they are often less likely to display that charming side of their personality when someone else is present. Particularly and younger person with a parent. Doesn’t always work but at least you will have support if it does.

I know it is hard Beachy but you will need to be your best own advocate and if there is someone in your life that can help you with that then by all means recruit them. It’s your body and you know it better than anyone else, including the doctor sitting on the other side of the desk with all the letters after their name. :wink:

Dusty. xxx