What's causing my constipation?

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theOcean

theOcean

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I've come to this forum before multiple times trying to figure out something to help with my constipation. This time, I'm curious: what's causing it, and can anyone help me figure it out?

I've been dealing with chronic constipation since last August. My BM frequency is normal (1-2 a day), but my BMs are so hard they keep cutting the skin and aggravating fissures and cause bleeding.

I'm treating it currently with Miralax/Restoralax, but I keep driving myself crazy trying to figure out why I'm experiencing this in the first place. I've never had constipation before in my life before this. Since it seems like frequency isn't the issue, I'm wondering if I might have some kind of absorption problem, or if there might be something with the terminal ileum?

Other information which might help: I have severe Crohn's disease which is in remission. I was being treated with Remicade and Imuran when this started, but switched in November to Humira and Imuran. I was on a course of Cipro/Flagyl for eight months (May - December). I've since stopped Imuran since I felt it made me worse. I noticed slight improvement but still have the chronic constipation. I have low ferritin. My GI has no idea and doesn't seem interested in trying to figure out what's causing it.
 
Have you had any surgeries? I too take Humira and Imuran. I had a colon resection last yea, and after the surgery I had the same problem you do. My surgeon told me that there could be places in my colon that are causing strictures (or narrow places) in my colon so it makes the stool harder to pass through those smaller portions of the colon. I take one cap full of Miralax every night before bed to help keep things moving. I have not had a problem wit constipation since. However, you do need to drink a lot of water throughout the day so you don't get dehydrated.

Hope this helps a little!
 
I had a fistulotomy last May, which triggered all my medication changes -- I was in a horrible flare and still being treated as though I had UC, so I was on Pentasa and Remicade. I went to the hospital and they discovered I had a fistula, which prompted my diagnosis change.

I was on a lot of solumedrol in the hospital (and opiates, but only while I was there), and then put on a prednisone taper and sent home with cipro/flagyl. I seemed fine for the months after that, but wonder if it was just because my flare was calming down and I wasn't getting diarrhea every half hour anymore. Right as I was put on Imuran in August (and my flagyl dose was halved), the constipation started.

Miralax helps me since I'm obviously having issues with absorption, and I like it because it doesn't mess with my frequency. I just still wonder why I'm not absorbing water properly. I try to drink a lot now, too, like you said!

I was wondering if I might have a stricture, but I'm not sure if that's it from my symptoms. Wouldn't that cause decreased frequency as well? I'll look into it, though.

Thank you!
 
I am undiagnosed but have constipation rather like what you describe. I poop regularly most of the time, but is often hard and pellet like. I have chronically low ferritin and low vitamin D.

I too have been trying to work out what's going on.

I think that constipation is a possible response to inflammation because inflammation inhibits peristalsis, and between that and narrowing of the intestines from swelling induced by inflammation, it just gets harder to push the food though the system. Transit time increases and so more water gets absorbed from the stool. Apparently the difference between normal and hard stool is only a small change in water content.

I have a part of my colon in the lower right that is not painful, but I am aware of when there is food passing through it and it seems generally a bit swollen. Once past this area, stuff seems to move normally. I reckon there's some kind of hold up around the end of my small intestine and start of the colon. Even when I had a stomach bug, it didn't move much faster.

There's some research on how CCK is reduced in Celiac disease, which leads to gall bladder problems and slow transit. When I cut gluten out of my diet, I went back to having normal bowel movements pretty much overnight, but over the past three years my body has adjusted and now I'm back where I started. (Eating gluten now will still make it worse).

I reckon fissures are aggravated because the hard poop coming through doesn't contain enough of the substances that would normally nourish the colon wall... I think these nourishing substances are produced by colon bacteria, but the colon bacteria get starved when intestinal transit is super slow. I don't think it's mechanical - at least not in my case - because how could an absence of poop make fissures worse?

There's a few thoughts for you... maybe not much use practically though.

:)
 
Out of interest, is this a regular thing for you, or does it only happen every few days/weeks, etc.? I have times when my poo is hard to pass, but it's usually only for a week or two, and then things settle, but comes back another week or two later.

Lately it's been an issue because I feel like I'm going 10 times a day to try to push some poop out, but nothing much happens. I generally wait for it to pass, but am wondering if I should try taking something when this happens.

I always have a hard time figuring out what is causing my symptoms, and this is one instance where I don't think it's because of food, or because I'm not adequately hydrated (I've been making sure to drink plenty of water!).
 
It's been constant since last August with no relief. :( Miralax helps since it softens it, but I still have no answers as to why it's happening in the first place. I'd definitely recommend trying Miralax if you're experiencing that, too. It's one of the gentler medications for it, since it just helps you absorb water rather than being a stimulant that forces you to go multiple times/causes cramps and discomfort/etc.

I don't think it's because of diet in my case, either! And I don't really eat too differently from how I did before, which is also what I think is bizarre. I just hope it goes away eventually.
 
Hmm.. When I had a stricture, I would go days without going (sometimes over a week) when I did go, it wouldn't be very hard, it was actually pretty normal, except that it was often small. When the constipation got bad, I wouldn't be able to eat, and if I did I would get a partial obstruction. Do you get any pain other than from the fissures?

Also, I know coeliac can cause constipation (I've had it since I was 14) but only when it's active and to be honest I would think it would be causing other problems as well, since it has to be pretty severe for it to cause the kind of absorbtion issue that you are describing. If you do want testing for it, make sure you are eating gluten at the time, but personally I think that's a long shot at the moment.
 
Most of the time I have C rather thanD. I really suspect that it is caused by strictures near the TI. Waiting for further tests to confirm this..... Strictures or inflammation? I take senna and stool softeners nightly and that seems to really help with my C though!:ybatty: really I think I would rather have D than C @ least with D I feel like I've emptied myself out! But I'm not currently on meds as I am recently diagnosed until they figure out if I have inflammation and it's severity and location.
 
No, I don't, actually. That's another thing that's been so strange about this. And I'm in remission, too -- no inflammation, colon totally healed. Usually when my Crohn's was active, I would always get diarrhea instead. This is the first time I've ever experienced constipation. It doesn't affect my appetite, transit time seems normal...

...Well, I'm definitely eating a lot of gluten. I could ask for a test for it, but I think you're right -- I would probably be experiencing other things too. Thank you for the consideration though, I hadn't thought of that before. It may be a good idea to get some allergy tests done anyway.
 
chuckmya said:
Most of the time I have C rather thanD. I really suspect that it is caused by strictures near the TI. Waiting for further tests to confirm this..... Strictures or inflammation? I take senna and stool softeners nightly and that seems to really help with my C though!:ybatty: really I think I would rather have D than C @ least with D I feel like I've emptied myself out! But I'm not currently on meds as I am recently diagnosed until they figure out if I have inflammation and it's severity and location.
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I think it would be caused by strictures too, but I just had a colonoscopy in February and my GI said my colon had healed so well that he couldn't tell I had IBD at all. I don't know if they examined the small intestine at all, though. I guess that would require MRE or pill cam?

See, the other thing is: I also feel like I've emptied myself out, too! It doesn't feel like an incomplete bowel movement, just... hard. Really, painfully hard.

Thank you for your input! Hope they find out where your inflammation is soon. :hug:
 
Hmmm.. Have you had your calcium levels checked lately? I know you said your iron is low, are you having supplements for that?


Yeah I mentioned it because I saw someone else had brought it up, and thought I'd chip in.
 
valleysangel92 said:
Hmmm.. Have you had your calcium levels checked lately? I know you said your iron is low, are you having supplements for that?

Yeah I mentioned it because I saw someone else had brought it up, and thought I'd chip in.
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Yeah, I get regular blood monitoring since I'm on biologics. My GP usually calls me as soon as possible if anything is unusual, so I don't think my calcium levels are up. I do know I eat a pretty calcium-high diet, though.

I also take iron supplements, yes! Proferrin, because it's the only one that doesn't cause constipation for me. (Or: didn't before I had this chronic constipation going on.) The low ferritin levels I suspect were because I had an irregular constant period for almost... more than half a year from my birth control. (And now it's finally stopped.)

I also asked after my B12 levels in case they were deficient, but they were around ~450 so they were pretty far from that. :p
 
Okay, not all doctors include calcium monitoring as standard (mine do it for me because mine has been close to emergency high levels before) so was just a thought.

Well, iron supplements can certainly play a part in constipation, even if they didn't before. I had a trusty supplement I relied on too until last winter.. Made me really sick, so now it looks like shots or infusions if I get anemic.

What about sodium levels? Sometimes having too much sodium can cause the body to react as though it's dehydrating, and then it will retain water and make stool harder.

I'm assuming you get your electrolytes done as part of your routine bloodwork?
 
valleysangel92 said:
Okay, not all doctors include calcium monitoring as standard (mine do it for me because mine has been close to emergency high levels before) so was just a thought.

Well, iron supplements can certainly play a part in constipation, even if they didn't before. I had a trusty supplement I relied on too until last winter.. Made me really sick, so now it looks like shots or infusions if I get anemic.

What about sodium levels? Sometimes having too much sodium can cause the body to react as though it's dehydrating, and then it will retain water and make stool harder.

I'm assuming you get your electrolytes done as part of your routine bloodwork?
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Hmm, I'm not sure about the rest of my levels. I'll call and ask when the office is open again on Monday. Might ask if they can fax them to me so I can examine them at my own pace, and figure out what's regularly getting checked.

I was off the proferrin for a bit and still had the constipation, so I think it should still be all right for me for now. Hopefully.
 
Okay, well again low electrolytes can make the body retain water.

I hope you find something useful in your results, keep us posted :) .
 
theOcean said:
I think it would be caused by strictures too, but I just had a colonoscopy in February and my GI said my colon had healed so well that he couldn't tell I had IBD at all. I don't know if they examined the small intestine at all, though. I guess that would require MRE or pill cam?
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I also had a normal colonoscopy in February and since I was having a lot of pain my GI ordered a CT scan. That's when they found a 15 cm stricture in my distal ileum. I, too, have trouble with constipation, though not like you describe. Coffee usually solves it for me in the morning.
 
Hmm, thank you for mentioning how it didn't show up in your colonoscopy. I'm definitely going to try and get my GI to be more aggressive about looking into this, since he's been ignoring my complaints about it for awhile. Glad to hear you at least found a solution for yourself. :)
 
theOcean said:
valleysangel92, now I'm sitting here and looking up celiac symptoms. Definitely calling my doctor on Monday.
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If you think you have other symptoms then that's definitely a good idea, they can start with a simple blood test.
 
I currently am anemic as well but refuse to take the reg iron supplements cause I'm certain it will make my C worse! So proferrin doesn't cause constipation? My GP wanted me to take an iron supplement but the reg ferrous sulfate cause my constipation to be worse! Where do you get proferrin and is it prescription only???
 
chuckmya said:
I currently am anemic as well but refuse to take the reg iron supplements cause I'm certain it will make my C worse! So proferrin doesn't cause constipation? My GP wanted me to take an iron supplement but the reg ferrous sulfate cause my constipation to be worse! Where do you get proferrin and is it prescription only???
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Proferrin is OTC! You don't need a prescription for it. I know it's available in Canada, but not sure about the states. It absolutely does not cause constipation and that's why I take it. I hope you can find it!
 
So, just to update: got my blood test results emailed to me. Everything looks totally normal except for my ferritin. (17, so still depleted iron stores.) I'm taking proferrin every day so hopefully that'll go up by the time I have my blood checked again. (And maybe that'll help my restless leg syndrome, too.)

Sodium is at 138, so also in normal range. Chloride/electrolyte is 105.

Also set up an appointment for Thursday to get referred to an allergist, just in case. I know I'm lactose-intolerant, but we'll see if anything else is maybe bothering my body.
 
Have you ever tried Metamucil for constipation? My doctor told me to start using it daily to help with my diarrhea... I know that's not what you have but for the uses it says its for constipation...it doesnt even mention diarrhea in the uses.
 
I did, actually... Metamucil actually made my constipation so much worse and made me feel like I had to constantly pass a bowel movement. It was extremely uncomfortable. :(

For diarrhea I would actually recommend adding potassium to your diet, possibly supplements.
 
Well I eat a lot of bananas but ill look into that thanks... the Metamucil doesnt actually stop my issues it just reduces it... which ill take! lol unfortunately every day from the first start just keeps getting worse and worse...almost like my bodies found/finding a way around it... When i get clogged up I stop eating most solids... ill do like fruit and veggies but like no meat potatoes and bread. it seems to work for me... hows your liquid consumption??
 
Aw! I hope you find something that works for you soon. And I think my liquid consumption is fine? I try to drink about a litre of water a day, and I know I manage close to a litre of milk a day as well. I could probably stand to drink more but I just don't really drink much outside of when I'm having a meal.
 
I know that if you dont have enough water in your diet you can have really dry stool... as for the scraping feeling do you eat seeds or nuts? I cant digest them at all so when i eat them they tend to scrape :/
 
I've always had about this level of hydration, though... I don't know why it would be so different now. :(

And nope, I can't handle seeds at all and avoid them because they used to get caught in my fistula tract. Nuts I sometimes eat but they never really give me problems.
 
When reading about constipation I read water and fiber intake can contribute...whats complicated is there are so many different kinds of fiber. Some will constipate you and some will make you go.
 
Yeah, I know about that, too. I avoid insoluble fibre and just stick to soluble fibre if I do eat it, though for the most part I have a pretty low-residue diet.
 
It really isn't, no!! :( I would really like to be able to pass a BM without having pain. It's also difficult because I have to tow the line of taking enough Miralax to soften my stool without getting diarrhea, since diarrhea will aggravate my fistula and probably come out through the fistula tract and hurt like crazy. Bleh.
 
I haven't tried Dulcolax because I'm avoiding stimulant laxatives. My frequency is totally normal, so I don't need help there -- and osmotic ones like Miralax are very gentle and don't cause cramping or send you running to the washroom. Since my problem is just how hard my stools are, they make more sense for my situation.
 
Sounds like someone either provided you with good information or you did your research with what laxatives to take.
 
Yep! I always read up on my medications before using them, and especially because of the extent of my constipation problems I had to look up what would be best for me, too. Especially because I have other complications like my fistula to be aware of.
 
Mlp know a lot about Miralax. It take I believe 3 days to work. There are some forum kids on daily doses of miralax.
 
I've been taking it every other day (half a capful) since last October. It takes two days to work for me, since I think it has more to do with how quickly food gets through your system. I know my transit time is usually two days.
 
From the discussions on parents forum I believe a regular daily dose is usually what is recommended.
 
No, that would be too much for me because if it causes diarrhea instead it will irritate my fistula.

In addition, this thread is about finding the cause of my constipation rather than treating it, since I have that covered. But thank you. :p
 
You know what's really helped me??? A low FODMAP diet...... Didn't think It was helping @ first so I went off for a bit then I for really constipated! So much so that I actually had to do an enema....which I hate with a passion! But didn't wanna take a chance in getting an obstruction. So I revisited the low FODMAP diet and the C has improved so much!!!! It works for me..... Don't know if you've tried it Ocean???:):):)
 
This... is actually more or less how I already eat. :p I have issues with fibre so there's a fair amount of things I avoid, and then I'm lactose intolerant so I'm already doing that part right!
 
I think my the thing that causes most of my distress is gluten! Unfortunately......as I could eat bread @ every meal! Ugh
 
Going gluten-free is the only thing I haven't done... I'm trying to get referred to an allergist this Thursday, though, so I have to keep eating it unless I want to mess up my test results!

(I would be heart-broken if I was celiac, though. I love bread and baking.)
 
Your regular GI should be able to do testing for coeliac.. It's not an allergy, it's auto-immune, although it causes an allergic type reaction in some (for example, my lips and tongue swell up if I accidentally eat gluten), the main characteristic is damage to the villi in the small intestines, so the skin prick tests most allergist use ( at least in the UK anyway) might not be enough to prove or disprove. There are specific bloods needed and usually an endoscopy.

Bread and baking are still possible, honestly it's not as bad as it seems, I was dreading switching, but I found I got used to it a lot quicker than I thought I would. A lot of pre made things have a bit more sweetness to them than regular food, but you'll work out what you do and don't like. And if you do get diagnosed, I have loads of tips for baking :) .
 
I'll talk about it when I see my GP tomorrow, and mention how I want blood tests done in addition to the skin prick test since I'd want to be as thorough as possible. Thank you! :)

My mother's gone gluten-free (for kicks, sadly) and one of my closest friends is celiac, so I've been exposed to a lot of the food for it. My main problem is the breads, which I always find unpleasantly wet unless toasted. If I do get diagnosed, I'll definitely send a message your way!
 
I found that issue with bread, but I did find one brand I'm happy with, and I know an awesome recipie for good gluten free bread which I actually got from a cafe owner who sells a lot of gluten free food, so if it happens, you can try that :) .
 
So, GP actually outright refused to do any testing and instead lectured me about my diet and also told me my sleep disorders basically aren't real. Very successful appointment.

I am slightly bitter about this.

I did go home and immediately tell my mother that we need to eat more fibre and stop buying so much bread, though. Had a snack of dried mangoes, then ended up having an arugala salad with walnuts and goat's cheese and some ham for dinner. I think everything went through my body almost instantly because I haven't really had much fibre in my diet for about two/three years, since I was constantly in flare until recently. So. That was an experience, and I'm sure as I eat more of it my body will get used to it and calm down.
 
Hi Ocean,

I don't know if you saw my earlier post, but I think you would be well served by cutting out gluten from your diet to see if it helps.

I have seen research papers showing that anal fissures healed faster and were less likely to recur on diets that didn't contain gluten or milk.

Also, other papers suggesting that gluten increases inflammation and gut permeability in Crohns. You don't have to be celiac for this to be the case. A lot of people with Crohns make antibodies to gliadin directly, which I believe is a marker of gluten sensitivity.

I guess you might not want to do this, but I use magnesium citrate in very small amounts as a laxative. It has osmotic action, and also seems to soothe the inflammation. I take it retroactively, when I think things are getting worse, because it helps unblock the system, rather than as prophylaxis. That way I don't overdose. I wouldn't touch Miralax with a barge pole, I'm afraid.

To try and solve the problem longer term, I've been experimenting with different sources of fibre. My favourite gut soothing food right now is potato and lettuce soup. Gelatin is supposed to be helpful for C, and that's next on my list of experiments. Also more fish/omega 3 supplements. I can't see any way around the problem other than experimenting until I find the foods that work for me. What I am sure of is that the foods I eat do make a huge difference.

I can identify with you feeling bitter with your GP. After I told mine that my digestion was waking me up at 3am, he told me to sit tight and see what happens. I've given it three years to sort itself out already, and I'm pretty fed up too.

poing
 
I used magnesium citrate before and it actually made me extremely uncomfortable and just made me feel like I needed to pass a BM constantly. Thank you for the suggestion, though. Miralax isn't that bad, honestly. You just need to know what amount to give yourself. It doesn't bother me at all.

I'm trying to add more fibre to my diet, and basically looking to add anything but seeds since those irritate my fistula. My family is German so cabbage is a pretty standard thing we eat already, at least!

I'm not sure about cutting gluten from my diet, but if just increasing my fibre intake doesn't work it's probably going to be something I have to consider. Milk, though... I drink lactose-free milk already since I'm lactose intolerant, so that doesn't bother me anymore.

Thank you for your reply!
 
Posting here even though I talked about it a little in my fitness thread. I've been eating high-fibre for, I guess, four days now? It's honestly pretty exhausting, and I don't think it's making my problems better. Now I'm getting the same symptoms if not potentially worse ones, and it's made my Miralax be even less effective because I feel like I need so much liquid than I did before. So now I'm having more pain than before with the addition of more undigested food in my stool, yay. Still going to try and stick with it a little longer, though.

Going to try and add a fibre supplement that I can dissolve into water in the hopes that'll help.
 
Ok. Well I have hit day 7 or 8 not sure now and still nothing has happend I talked with my surgeons office they said eat more fiber drink more water ....sigh... I have no appettite as nnothing is comming out but ii do finally have an appt with the Gi in august gawd I hope I poop before then. Hehehe I see my dr tomorrow and hopefully he can help me ,with this new thing that iss happening extreme cramping every 3-5 mins and I can't even pass gas anymore I am so tired due to lack of ssleep cause it keepss me awake I hope my dr will be sympathetic to my pain cause I'm tired of calling an ambulance and waiting hours at a. Hospital my viens aare so scarred from the doses of vanco when I was in hospital andd. My wound oopened and got infected that after 3weeks my viens eventually gave up and they had to put a pic line in
 
Tigscub said:
Ok. Well I have hit day 7 or 8 not sure now and still nothing has happend I talked with my surgeons office they said eat more fiber drink more water ....sigh... I have no appettite as nnothing is comming out but ii do finally have an appt with the Gi in august gawd I hope I poop before then. Hehehe I see my dr tomorrow and hopefully he can help me ,with this new thing that iss happening extreme cramping every 3-5 mins and I can't even pass gas anymore I am so tired due to lack of ssleep cause it keepss me awake I hope my dr will be sympathetic to my pain cause I'm tired of calling an ambulance and waiting hours at a. Hospital my viens aare so scarred from the doses of vanco when I was in hospital andd. My wound oopened and got infected that after 3weeks my viens eventually gave up and they had to put a pic line in
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I really don't think the fibre/water intake is your problem, here. I really feel like there's something else causing you to not have bowel movements. Which laxative did you say you took before? You may need a stimulant one (like milk of magnesia, followed up with a lot of water) to get your muscles moving things along. To me it sounds like you could have an obstruction, especially if you aren't passing gas. Make sure to mention that to the doctor, and good luck with your appointment!

And I'm sorry to hear about the poor hospital care. :( I know that while our hospitals are accessible here in Canada, the wait times can be awful. The last time I was so sick/dehydrated that they actually admitted me immediately rather than letting me sit in emerg, which I was grateful for.
 
Ok but ladied I don't have a colon I cannot get constipated they removef my large intestine I only have my small intestine and my normal bm are diarrheah always I will never have a formed bm that is why I have to have blood tests every month. To ssee what minerals is and isn't obsorbing and I have to drink tons of water to stay hydrated , my surgeon says the third surgery is tue big one I get. The bag I'm juust hoping I can get thru this summer with no surgery no medical crap I aalready lost my christmas and new years in hospital so kinda want thr summer to myself
 
Ok an update I finally had a bm this morning bit it didn't relieve the cramping so I went to my dr and he did a blood test to see if I there is any inflammation. So have to wait for those results in the meantime he put me on Prednisone for 7days and Azathioprine for a few months as for the constipationn that wasbdue to the switch of medication I was. mezovent 4800 mg to Pentasa and it kinda shocked my intestine that is wwhat hebthinks anyway we will see he said give it time to adjust
 
Yes he told me to stop taking it as I am not constipated it is just my body adjusting to the medication changes he said it will take a couple weeks to fully work . I have been on the Mezavent from the begining and it is a slow release where as the pentasa is a quick release also to I have an alergic reaction to. Asa so I have to be careful of how much I consume and both mezavent and pentasa have asa in them but I haven't suffered any side effects so to recap no more dicetele stay on the pentasa and wait for the test results unfourtunately the crampong os still there but I am having bm's again
 
I also have no colon. I am taking Pentsa and don't have any problems. I have been told by my GI that I need to drink less water and drink electrolyte mixture instead because too much water flushes everything out. I have to take multivitamins, folic acid, B12 and selenium. I am moving towards an ileostomy sadly.
 
I am also on b 12 shots folic acid vit d pentasa surgeon told to drink more water but dr said don't drink more water and to drink milk of magnisia (not surebif it that is spelt righ right) haven't seen a gi yet . What is Selenium? And a Ileostomy? I know I was told my next surgey I'm facing an ostomy bag and there is no way around it
 
Selenium is a mineral which came up as low in my last urine test. I have constant diarrhoea so everything is flushing through me very quickly which is why I was told less water and more replacement electrolyte fluids. As much as I don't want an ileostomy, I feel that I have reached the end of the road and it would be better than this.
 
Ok I have the same thing very watery stool my dr gave me sucralfate but I took one pill and it made me sick to my stomache I'm sure but it has sulfa in it and I am alergic to sulfa I have not not had a formed bm since my surgeries mybsurgeon said as long as it is coming out he is happy but he doesn't understand how it makes me feel and half the time I don't make it to the washroom or I am woken up in the middle of the night and hve to change the sheets it sucks. So what is an Ileostomy? Sorry all of thiisnis so very new to me I have so much to learn I still haven't even wrapped my brain around the fact that I have this disease as it happened so fast , I was miss diagnosed for 15 years and every colonoscopy ii went the technition kept tellling me i did the proceedure wrong and when my surgeon went to find the previous colonoscopys I had done he couldn't find and I felt like an iidiot and he couldn't call my family cause he had just recently passed away before all this happed so I was on my own . So I am learning tthis all on my own and sorry for all the questions to u and everyone else but being misdiagnosed for 15 years and then going into hospital by emergency and within a day emergency and then 4 days after that annother eemergency surgery I have soo much to learn . Oh wow sorry I kinda just went way off subject here sorry
 
There's a link to our wiki about what an ileostomy is here! It sounds like this is the procedure that you're going to have done.

And don't worry! Most of us are learning these things on our own, as well. You're not alone in that. We're all just trying our best to educate each other, and share things we've learned. :hug:
 
Tigscub said:
Yes he told me to stop taking it as I am not constipated it is just my body adjusting to the medication changes he said it will take a couple weeks to fully work . I have been on the Mezavent from the begining and it is a slow release where as the pentasa is a quick release also to I have an alergic reaction to. Asa so I have to be careful of how much I consume and both mezavent and pentasa have asa in them but I haven't suffered any side effects so to recap no more dicetele stay on the pentasa and wait for the test results unfourtunately the crampong os still there but I am having bm's again
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I was told that I couldn't take anything that was slow release because of no colon, wouldn't absorb properly. I think we both function very similarly to people with ileostomies with the exception we still poop out of our rears.
 
Ya my family dr I have now has me on Pentasa and that quick release bit because I was on. The mezavent (slow release) my body had to adjust to the change and my crohns flared causing tue cramping and unable to have a bm butnnow the bm's are going.again and cramping is going away I'm feeling. A lot better but have major diarrheah
 
Have you not been seeing a GI for your problems? Just your family doctor? Because you really shouldn't go to them about IBD problems... you need to see a GI, who will have a much better idea of how to treat you.
 
No I have not seen a gi at all I don't even know what a gi is I know I have an appt with a gasttoentologist inAugust but it isbfor 8:15 in the morning in downtown Vancouver and I live in the fraser.valley witth no vehicle and have no.clue how to.get there let alone knoww my way around Vancouver as I never go there so I have to either reschedual it or have them refere me to someone closer to me
 
A GI is just shorthand we use for Gastroenterologist that is all. August is quite a long time away, you might want to see whether you can bring it forward. I had to push my hospital by ringing six times since Christmas in order to bring my appointment forward and get tests done sooner. I have to travel to my hospital, takes about two hours but and I stress the importance I see top specialists in the field.
 
I'm sittin here crying I feel so stupid that I don't know all this stuff that I should know or at least should have been explained to me like I didn't even know what he surgeon did on the second surgey all I knew is I was bleeding intermally the nurses were yearing off my clotthes rubbing me with iodine taking off my jewlery nnoobody telling me annythingg rushing me to the operating room my teelling I may wake up with two ostomy bags and in inntensive care . I coouldnt even get on the operating table due to pain andncouldnt breathe so they ssedated me right there that was the last I remeber and I was never told that they reemoved thebrest of my large intestine , he told me months after onmy last follow up appt exactly what hapend and then said have up seen a gastroentologist ? I had no clue I wasbsuppose to do aall that no one ever told me
 
You mustn't feel stupid, this is all horribly overwhelming. I was lucky and diagnosed when I first got ill and my parents were around and they pushed for a diagnosis. It is very difficult to deal with this on your own. I have had Crohn's for 30 years so I know what to do and how to push to get things done. I am so sorry that you have had such a horrid time and to be honest with you I have had six or seven resections and I never really know what was done, I have had the same surgeon for 30 years and I trust he will do what needs to be done. You do need to see a GI sooner rather than later, because you need to ee if medication can help. You don't want another operation especially an ileostomy unless it is necessary. If it helps I am absolutely terrified of another surgery, even though it is my choice, and am going to insist on a premed this time. Once you have had a traumatic time, it never goes away. We are all here to help and you must never ever feel stupid, it is so must to deal with
 
I just want to thank u so much when I was going thru this I had no one there noobfamily nobody went hospital alone went to surgery woke up alone twice spent xmas and new years in hospital alone no family no phone calls nnoo nothing they sstill haven't called to ask how I am , it is just me and my cat I don't get to see my grandbabies and I have a new on the way in a montth or two not sure what I did by getting sick but feels like I got abandoned by getting this sorry didntt mean to dump been holding that in for quite awhile
 
I'm so sorry to hear that :( It breaks my heart you don't have the support that you deserve. Going through all this is so tough. Are you able to contact your family, or is it that they aren't responding? It's so awful that they haven't been with you through all of this.

If I wasn't a few provinces away I would happily be there for you! Though I can try my best at least on here.
 
Honestly I don't know what happened it wennt from me having aa great relationship with my daughtet aand watching my grandkids taking my grand daughter to kindergarten she just started in september and the first I went into hospital I was pooping blood lots of it and my daughter called 911 and I found out after a few days in surrey that she told them I wasbhaving a psycotic break but they did tests and found out that I had cdiff and colitis and a mass then a week after my daughter and her bf show up with all my belongings and inform me she has moved and left me with no where to go so after all that a week wennt by andbthe hospital said ok ur better time to go they never investigated the mass never treate the colitis just dealt woth the cdiff so oout I was I found a place to go for a week till I found a home and in that week I ended up back in hospital with the same thing but different hospital langley hospital and the surgeon pumped me with 8liters of laxative and 11 enemas and nothing came out so after several dozen ctscans xrays colonoscopys off I went for surgery I had one friend visit me in the hospital but she just needed to borrow money and now I don't hear from her at all sometomes I think what's thee point
 
Honestly I don't know what happened it wennt from me having aa great relationship with my daughtet aand watching my grandkids taking my grand daughter to kindergarten she just started in september and the first I went into hospital I was pooping blood lots of it and my daughter called 911 and I found out after a few days in surrey that she told them I wasbhaving a psycotic break but they did tests and found out that I had cdiff and colitis and a mass then a week after my daughter and her bf show up with all my belongings and inform me she has moved and left me with no where to go so after all that a week wennt by andbthe hospital said ok ur better time to go they never investigated the mass never treate the colitis just dealt woth the cdiff so oout I was I found a place to go for a week till I found a home and in that week I ended up back in hospital with the same thing but different hospital langley hospital and the surgeon pumped me with 8liters of laxative and 11 enemas and nothing came out so after several dozen ctscans xrays colonoscopys off I went for surgery I had one friend visit me in the hospital but she just needed to borrow money and now I don't hear from her at all sometomes I think what's thee point
 
U know I read this and its like pathetic how can someone not have any family my mom passed away 6 years ago ffrom cancer my dad brothers and sister and nieces nephews all live across the river they are on my fb but nothing not one word not one call nothing
 
I don't have much family left, either... I have my parents, my grandmother, and that's it. I lost both my grandfathers to cancer, and I still think the stress from losing them triggered my Crohn's.

I'm sorry you've been treated like this, and I wish I could help. I don't know what misunderstanding they ended up spreading, but they're wrong. Hopefully some of them will realize that, and they will come back to you.
 
I have been trying to figure this out since November when I first went into hospital it seems like some movie u see onn tv but its my life it doesn't seem real cause when the lead actress gets sick the family comes.around not thensame fornme , I jad found out my dad had gotten really really sick and the last time I had spoken to him was aafter my first surgery and.was.waiting for the patholagy report to hear if the mass was cancer or not and I had called him cause I was scared his excuse for not coming to see me was he did not know where the hospital was mmeanwhile there signs guiding u right to iit but anywway I heard he got sick a month ago so I caalled to see if he was ok and he was fine but he never asked me if the mass was cancer or not or how I was or what the outcome was of the surgery so I pretty much have given up sad as it may be I have to accept the fact my dad ,brothers, sister , daughter and son have turned.their backs until they need something from me cause that's how it goes and I'm tired I've run outta tears I miss my grandkids the most but I need to accept this and deal with what is happening to me and take care of myself now
 
Small update: adding fibre to my diet and increasing liquids didn't make a difference. In fact, I think it made things worse. I'm going to try to call my GI's office on Monday to get on a cancellation list. I'm desperately scouring the internet for reasons why I'm still experiencing this constipation, because it's clearly not from diet. I don't think it's from my medications, either, because I've switched all of them since this started. I'm going to ask if there's any testing I can get done, because this is making me pretty miserable.
 
I am fairly newly diagnosed myself (two weeks ago, no known strictures or fistulas) so I don't have a lot of personal experience of the best things to do... however I do know that I have been treated for anemia three times -- twice long ago (when they thought what I had was IBS ) with oral supplements that in the beginning were fine and eventually gave me constipation. I know you take that newer kind that has less of the constipating effect.... but I was just thinking how with the other oral supplements I had (not sure what == we are talking 20 years ago) it took a long time before I got the constipation. This year I had iron IV infusions instead (seven IVs over three months brought my hemoglobin from 46 to 117 -- and brought my ferritin from "almost zero" to a "healthy amount" -- I hate when they don't give your the actual numbers!) No problem with constipation. You already have a decently high hemoglobin (in the 110s, right? but it is fine to got to the 130s or 140s) so I don't know if they would consider the IVs.. but worth asking about... maybe a short round would get the ferritin up without raising the hemoglobin too much?

I also drink two liters a day -- can't stand to drink that much in straight water so it is a weakly brewed green tea (one teabag per liter water)... when I stopped for a week was when I got the kind of constipation you refer to. You say you wee drinking one liter and you have increased .. maybe need to go a little higher??

sorry you are struggling with this
 
My hemoglobin is 147 from my last blood test, but my ferritin was still low. I'm using proferrin which I know doesn't cause constipation for me, and I've gone on and off of it before so I know it doesn't affect me like that even now. Other iron supplements definitely did.

I had two iron transfusions last year and one blood transfusion, but that was when my hemoglobin was in the 50s and I was in heart attack range. I don't think that's necessary now, though thank you for thinking of it. :)

I've definitely increased my liquid intake, and realistically I think I drink at least two liters a day (water and then tons of milk) and additionally I drink tea, too. Usually rooibos since it naturally has no caffeine...

Part of me is wondering if I have issues absorbing water, somehow, since the only laxative that's helping me is an osmotic one which helps you absorb water. I feel like I'm vaguely dehydrated all the time and always feel thirsty and have chapped lips. I need to get testing done to confirm that, though... I also wanted to see if there's maybe underlying medical reasons causing this.
 
I am thirsty all the time, but trying to be good and drink electrolyte stuff, ugh. It does sound like you have absorption issues. Have you had a urine test?
 
I guess my last one would've been in February for my physical, but my GP never said anything about it. I should probably pick up some electrolyte stuff too...
 
Hello, theOcean. Have you ever heard of Pelvic Floor Dysfunction (PFD)?

This normally happens to women, not men. It's especially common after childbirth but I understand it can have all kinds of causes, including undue straining. That said, I'm a guy, and it happened to me. A sporting accident sent my lower abdominal muscles into spasms. That led to a long bout of severe constipation, which in turn sent my Crohn's into a flare-up.

My GI didn't think much of my sporting accident. In fact, he pretty much just brushed it off. A guy like him just had no business worrying about some silly talk about muscles. Pills, CT-scans, colonoscopy...the good doc has his specialties!

Well, I knew something was wrong. Every time I sat on the toilet, I just *had* to go. The urge was *so* strong! Then I wouldn't. At the very last moment, the area around my exit ramp would always just kind of say, "Nope, never mind, we're not going to release. You might as well go do something else."

One day I began to research PFD. I learned that there are stretches and exercises that can release trigger points and muscle spasms in that difficult-to-reach area. So...I began to do those stretches and was soon rewarded with an *enormous* BM. Same the next day, and the next. I haven't been constipated since. (Sadly, now it's back to diarrhea. :( But at least it's coming out. Yeah!)

I have a link to some Yoga poses that I found especially helpful, but since I'm a new member, forum rules won't let me post it here. PM me if you're interested.

Anyway, it's worth a look. Google it, if nothing else. You might learn something useful. Besides, doing an extra bit of stretching and yoga can't hurt. :)
 
I have heard of it, yes! But unfortunately it doesn't sound like my problem... I still have BMs at a normal frequency, they're just really hard, or sometimes feel incomplete! I'd be curious about those stretches though, if you can maybe find a link to them. :) I'll send you a PM.

I actually have had a bit of relief the past few days and I think it's been because of a probiotic yogurt I tried. Since then my BMs don't really hurt anymore. Going to continue eating it to see if this continues!
 

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