# Eleven years of hell. Any suggestions would be appreciated.



## Johnnie Dunkum (Feb 18, 2014)

I have had really bad problems for eleven years now. Everything was fine up until that time, and then rather suddenly, I developed chronic constipation. I did not understand what was happening at all to begin with, and hoped it would go away, but it never did.

I have been to countless doctors, had colonoscopies, abdominal CT scans, blood tests, had my gallbladder checked, tried a laundry list of medications and treatments, and have barely been able to keep myself functioning using combinations of Miralax, Senna (when an emergency), Milk of Magnesia, and Linzess to try to keep thing moving. I use Hyoscyamine to control the spasms I get, but when nothing else will help the pain, I have to take Percocet. I know that can cause constipation, but my constipation is severe without taking Percocet and quite often, that is the only way I can deal with the pain enough to function.

I had managed to get everything livable for many months towards the end of last year, and thought I really had figured out food and medicine combinations that worked, but since New Year's Eve, I can barely function. I am lucky that my boss is understanding, and has been ok with all the times I had to work from home, or just lay in bed with a heating pad on my abdomen in misery. I work in DC, which is over an hour away by bus, so this disorder makes it difficult to get to work every day.

Since the beginning of this year, my symptoms are more severe and somewhat different. The pain has always been predominantly on my right side, right beside my belly button. I had a doctor decide to check my gallbladder, even though he said it was not really high enough. The results show is has a high ejection rate, but as the pain is not always in that area, and doesn't act up quite like a gallbladder problem would be expected, it seemed it was unlikely to be related.

The pain moves from side to side, as things are moving through my intestines, always starting on the right side, and only sometimes do I feel it move. After a bowel movement, the pain is less, but often does not fully go away. Even if I take enough laxative to give me diarrhea, I will still have the pain. If I don't eat anything at all, and should not have anything in my intestines, I still get pain. This has pretty much always been the way my flareups go, but this time, I can't really get it under control, there is something of a faint burning sensation in my abdomen too, and I have woken up in the middle of the night feeling...heavy. I don't really know how to explain it, but I would not immediately have pain, but would be gassy, as always, but with a sensation of heaviness in my abdomen I could not understand. Once I was up for a while, and had a bowel movement, it went back to normal.

I am not really expecting much, but wanted to post here to see if anyone can relate to the change in severity of the symptoms, burning sensation and heaviness I mentioned. I have read and tried so many suggestions over the years, I can't imagine a miracle cure exists that I have not heard about and tried. Honestly, the only thing that keeps me alive is my wife and son. This is too miserable to live with otherwise, but I will always keep going for them. If anyone has any useful suggestions for how to cope with this better, I would appreciate it.

Thanks.


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## Arzu Caydere (Feb 23, 2013)

i had a sharp right-hand side pain in october 2012 and went to doctor and then they said liver inflammation. my liver enzymes were high.

i followed a strict diet and exercising regularly and my weight decaresed from 74 kg to 67 kg over 5 months. my liver enzymes became normal gradually but my pain in the right hand side continued.

the doctor told the pain was due to liver inflammation when ultrasound was done. however, i did a ct scan on february 2013 and my liver was completely normal. my enzymes were also okay at that time. however, i had gas and bloating problems which increased gradually after 2013. then, doctor told me that i had 2 problems: one ibs and second liver inflammation but said now liver inflammtion is not an issue anymore after ct scan and blood results. hence. she thought possibly my right hand side pain is due to ibs. during june 2013 my pain completely stop and i had just little gas problem.

however, in june 2013 i started to develop hemorrhoids and when i visited a second doctor he did an endoscopy and said i have hpylori infection.

i used some antibiotics for hpylori but they gave me side effects. then my gastro problems started again, my weight increased also again.

i started to have right quadrant pain again. 1 month ago from by blood results i saw that my liver enzymes increased again,

now i am loosing weight again. for my case, i do not know whether the pain is related to liver or ibs.

it seems that it is a combination of them. sometimes, it totally disappears, i did not have a colonoscopy so far because from my blood results and from otehr factors (being 35 years old, having positive appetite, etc) doctor said no need for colonoscopy. i had gas and bowel rumbling problems when i was 20-years old but at that time it was manageable.

now level of symptoms increased. the pain in right quadrant may be due to trapped gas in the right hand side (called hepatic flexure). i really do not know myself.

but i suggest that you loose weight if your body mass index is close to obesity and do a lot of exercises to see what happens.


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## lorenheller (Feb 19, 2014)

Hello - your post made me very sad. I have been dealing with similar issues for about 11-12 years so I can relate to your situation. It's absolutely disabling. I was wondering - have you ever tried meditation? I have heard all sorts of good and bad things about it but recently decided to give it a shot. My symptoms have taken a turn for the worst and I am willing to try anything at this point. I have only been doing it for a week or so and I have already noticed that it helps relax me, and some times puts my stomach at ease. For me, once an attack comes on I get so worked up and anxious about it that my situation worsens immediately. I am working on trying to identify how to stop that from happening as rapidly. I am not sure whether or not it would help with your pain, but meditation has been known to help with all sorts of chronic pain. Maybe it's worth a shot?


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## ksl2017 (Nov 15, 2013)

Hello-

I was going through a lot of these symptoms throughout my life but it was always managable IBS and finally last year in March 2013 I got a terrible infection when I came back from Spring Break in college. I started not being able to go at all without the help of medications. I was prescribed Amitiza, Miralax, fiber, senna, milk of magnesia, etc. I had a work up of GI tests all the way through September where I finally saw a motility doctor who did a Sitz Marker Colon Transit study (you swallow these little capsules full of radioactive markers) where I wasn't allowed to use any laxatives and eat and drink normal for 7 days. Well you can only imagine how bad that must be with this condition. After 7 days I had X-rays and these markers were all still in my colon which is when I was diagnosed with Slow Transit Constipation otherwise sometimes known as Colonic Inertia. Essentially my colon muscles did not work so I was scheduled for a total abdominal colectomy December 20, 2013 where they removed my large intestine and attached my small intestine end to my rectum. I had to have a temporary illesotomy right now currently, but I have a reversal of this surgery March 6 which is coming up soon. I am not sure if this sounds like your issue, but I had to jump through an array of GI tests and loopholes just to get doctors to listen to me or take me seriously. I would suggest seeing a motility doctor and seeing if you could get a sitz marker transit study done too. It is actually a simple test, but its a good standard for constipation issues. Hope you find some answers and peace to your suffering.

Kymberly


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## Dreamcatcher32 (Nov 12, 2013)

So sorry to hear of your suffering. I have had constipation problems since for about 25 years now - sort of on and off. I started having worsening bloating and stomach pain last year. I went to Mayo Clinic in Rochester, MN to try to get this figured out. They honestly did not have any explanation for the bloating and pain, though I think for me it's both a lack of Seratnonin. I also think stomach and colon/intestinal pain is often stress-related. It seems like the second a person focuses on it, it's a downward spiral.

Have you been checked for Pelvic Floor Dysfunction? This is the #1 thing Mayo Clinic looks for. It can often 'slow' the colon down. They look to treat this first and foremost because if you relieve the pelvic floor, then you can relieve the slow transit as well. They did an anorectal manometry on me as well as a GI Transit study. I don't have slow transit and my small bowel is quite zippy. The biofeedback specialist there is actually the one that 100% diagnosed the PFD. I have non-relaxing pelvic muscles, basically. This can cause constipation, pain and a slowing down of your whole system. I did their 2 week bowel retraining program and that has helped me to have better urges. Plus, I am constantly reminded to 'relax' those pelvic floor muscles - which makes my stomach feel better. I also used to get non-stop urges to pee and that has calmed down quite a bit.

I wouldn't say Mayo has the best GI docs, to be honest. I didn't feel that they really answered my questions or tried to get to the bottom of anything. That was irritating. The biofeedback program goes WAY too long for what they are doing. 2 weeks is excessive and costly. I will say they have helped and I believe that they have correctly diagnosed me - something I never got elsewhere. Docs just tried to shove laxatives and fiber supplements on me. Well, if you're tensing your pelvic floor excessively - how far is that going to get you!? The biofeedback specialists really were fantastic. They are very adamant that even if you have slow transit - you do not need laxatives! These are only to be taken every 2-3 days if you haven't gone AT ALL. They say people have unrealistic expectations of their bowels. In fact, they recommend 'waiting' to have a bowel movement for a couple of days so that the urge is stronger and more comes out at once.

I would honestly set-up a 'potty' routine for yourself in the morning, when your bowels are most active. Get a warm beverage, 2 tbs molasses and a BIG glass of water. Either wait for the urge to come or physically sit on the toilet. If it doesn't come by day 2, use a dulcolax suppository. Also try other things, like stretching or walking outside before a bowel movement. Use whatever 'tricks' might work. If they don't work - you can always take something. I recommend 800mg Magnesium Citrate. Get yourself a squatty potty and 'pooch' your belly out to have a bowel movement Do not strain from your rectum! Get lots of soluble fiber in your diet - I would recommend apples and pears, along with lots of roughage. Do smoothies! A big glass of of spinache, grapes and pears will get you goin'. Exclude things from your diet that back you up in any capacity. Try some Kefir to help your gut regulate. Get probiotics, if necessary. Make sure they are the kind you refrigerate. Liquids are better than pills.

I would also make sure to get a good heating pad and perhaps try castor oil packs. I honestly think your problem sounds like your muscles are going crazy so anything to relieve muscle tension/stress is good. Try Epsom Salts baths and make them as hot as you can stand them! You can also look into antidepressants. These work great for me but they do cause constipation sometimes.


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## Dreamcatcher32 (Nov 12, 2013)

ksl2017 said:


> Hello-
> 
> I was going through a lot of these symptoms throughout my life but it was always managable IBS and finally last year in March 2013 I got a terrible infection when I came back from Spring Break in college. I started not being able to go at all without the help of medications. I was prescribed Amitiza, Miralax, fiber, senna, milk of magnesia, etc. I had a work up of GI tests all the way through September where I finally saw a motility doctor who did a Sitz Marker Colon Transit study (you swallow these little capsules full of radioactive markers) where I wasn't allowed to use any laxatives and eat and drink normal for 7 days. Well you can only imagine how bad that must be with this condition. After 7 days I had X-rays and these markers were all still in my colon which is when I was diagnosed with Slow Transit Constipation otherwise sometimes known as Colonic Inertia. Essentially my colon muscles did not work so I was scheduled for a total abdominal colectomy December 20, 2013 where they removed my large intestine and attached my small intestine end to my rectum. I had to have a temporary illesotomy right now currently, but I have a reversal of this surgery March 6 which is coming up soon. I am not sure if this sounds like your issue, but I had to jump through an array of GI tests and loopholes just to get doctors to listen to me or take me seriously. I would suggest seeing a motility doctor and seeing if you could get a sitz marker transit study done too. It is actually a simple test, but its a good standard for constipation issues. Hope you find some answers and peace to your suffering.
> 
> Kymberly


Hi Kymberly, I am curious - did they test you for pelvic floor dysfunction? Unfortunately I don't think a colectomy is an option if you have PFD. I have heard of many who have had their colons removed only to wind up with the same constipation problems afterwards. It's imperative to rule out PFD before a total colectomy.


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## Johnnie Dunkum (Feb 18, 2014)

Thanks for all the replies.

Regarding weight loss, I actually was not overweight before and lost 20 lbs in the past year, just because I get tired of eating, as I associate that with misery. This condition is one hell of a diet aide, if it could be turned off. As for the liver idea, I will talk to my doctor about it, but I believe they did check that with other blood tests.

I'll check into that transit study too. I have a small bowel follow through, but nothing like what you mentioned. The technician's were surprised by how slow my small intestine was working as it took six hours for the barium to make it into the large intestine, when the expected time frame was two hours. I had sharp pain around that six hour mark, and it was really painful when the doctor pushed that thing into my abdomen to manipulate my intestines. I really hated doing that test, and cannot imagine the state I would be in after a week of no laxatives, but I have long suspected part of my colon doesn't work anymore.

As for the meditation, I definitely agree that is helpful. One thing I have noticed is the pain causes me to hold my breath, which makes matters worse. If I make myself take deep breathes and relax, I can reduce the pain a bit until I stop focusing on relaxing. It is kind of hard to learn to always take deep breaths, and it only helps some with the pain anyway. It does seem to be a good indicator that either the stress or reduced oxygen is a factor. I also notice that anything that startles me in the middle of the night causes almost instant pain. if my bowels are dormant at night, I can sleep. As soon as they wake up......ugh,

I did ask about the pelvic floor dysfunction years ago, and forgot why they ruled that out honesty. One thing I have really learned in recent years is doctors are pretty worthless without a lab result telling them exactly what is wrong. Otherwise, they just keep at trial, error and repeat. I had a brain tumor removed five years ago, and it was only discovered because of an MRI. My primary care doctor thought I had ear infections causing hearing loss, and my ophthalmologist thought I just needed new contacts, but one MRI and they knew the real cause. It never hurts to ask a different doctor, unless there are really conclusive results on something, and I don't recall any tests as far as the pelvic floor function.

Thanks again for all the info. All the replies make me realize there is still plenty that can be checked.

Has anyone tried Amitriptyline for the pain? My GI is convinced I have IBS-C, and said the only other thing to help me deal with it was to try me on that. The side effects make it sounds a bit questionable, but the side effects listed for most medications are typically scary. He said it targets pain in the gut, so it sounds like a good choice. He wanted me to try Linzess first, and then add Amitriptyline shortly, soas not to confuse any issues I might encounter. The Linzess is not very pleasant, and I decided to stick to Miralax mostly, and am thinking it is time to try the Amitriptyline.


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## ksl2017 (Nov 15, 2013)

Dreamcatcher32

Yes I was tested for PFD....I do not have this. I had a anal monometry and a defocogram performed at Cleveland Clinic in Ohio and the results came back normal so there were no issues there.


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## Dreamcatcher32 (Nov 12, 2013)

ksl2017 said:


> Dreamcatcher32
> 
> Yes I was tested for PFD....I do not have this. I had a anal monometry and a defocogram performed at Cleveland Clinic in Ohio and the results came back normal so there were no issues there.


Phew, glad to hear! It always scares me when I hear about colectomy's. I think it's fairly uncommon for there not to be PFD involved. I've read 50% of those that have constipation also have PFD. If PFD is involved, the only recourse (if chosen) is an ileostomy.

Sounds like you also went to the best - Cleveland Clinic! I've been wanting to go there. Heard they are better than Mayo by far.


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## ksl2017 (Nov 15, 2013)

Dreamcatcher32

Yes sorry I haven't responded to your post until now as I was having my reversal for my temporary ileostomy a few weeks ago. My surgeon and nurse at Cleveland Clinic have been great and I have had no issues with them as they have really taken care of me as a patient. I have not been to Mayo Clinic so I cannot say anything against them or for them. But I may be going to the one in Rochester MN to see a motility specialist for some tests on my small intestine which are specialized by their motility GI doctors there. There were concerns when I had my ileostomy and even so after my reversal now. They would like to give me a few weeks to see how things go, but even after the total abdominal colectomy I am still relying on Miralax doses to go....but still no issues with pelvic floor dysfunction as I also had the balloon manometry exam performed twice with successful results. We are now looking into motility testing on my small intestine such as a small bowel manometry which measures muscle contractions after you eat a meal. But once again, I do stand behind Cleveland Clinic and the treatment I had there. My surgeon's nurse is always very receptive to my concerns post surgeries and gives me great feedback, recommendations, and provides me with options.

Kymberly


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## postmortem (Nov 11, 2006)

ksl2017 said:


> Hello-
> 
> I was going through a lot of these symptoms throughout my life but it was always managable IBS and finally last year in March 2013 I got a terrible infection when I came back from Spring Break in college. I started not being able to go at all without the help of medications. I was prescribed Amitiza, Miralax, fiber, senna, milk of magnesia, etc. I had a work up of GI tests all the way through September where I finally saw a motility doctor who did a Sitz Marker Colon Transit study (you swallow these little capsules full of radioactive markers) where I wasn't allowed to use any laxatives and eat and drink normal for 7 days. Well you can only imagine how bad that must be with this condition. After 7 days I had X-rays and these markers were all still in my colon which is when I was diagnosed with Slow Transit Constipation otherwise sometimes known as Colonic Inertia. Essentially my colon muscles did not work so I was scheduled for a total abdominal colectomy December 20, 2013 where they removed my large intestine and attached my small intestine end to my rectum. I had to have a temporary illesotomy right now currently, but I have a reversal of this surgery March 6 which is coming up soon. I am not sure if this sounds like your issue, but I had to jump through an array of GI tests and loopholes just to get doctors to listen to me or take me seriously. I would suggest seeing a motility doctor and seeing if you could get a sitz marker transit study done too. It is actually a simple test, but its a good standard for constipation issues. Hope you find some answers and peace to your suffering.
> 
> Kymberly


Hi, I was wondering where were the markers scattered at mostly for you? Mine are all on the left side and a surgeon said I would need to remove the WHOLE thing, which is a little scary for me.


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## appleorchard (Oct 14, 2013)

Sorry to hear of the problems you have been suffering.

I suffer with IBS-C and before I was advised to take two sachets of movicol daily, I used to suffer with tremendous pain on my right side. Last year I had my appendix removed because the hospital thought this was what was causing the pain!

After seeing a bowel consultant he advised that the pain is on that side because this is where the small intestine meets the large intestine. If your bowels are "backed up" there is no where for the food to go and struggles to get through this part of the bowel system.

I would recommend movicol - if this is available to you - and ensure you take it daily. I started with three sachets a day until things were moving regularly, and reduced it to two. If I don't take two a day things slow up and the pain returns.

Obviously, there are also things to change with your diet - I saw a dietician which helped enormously as I did find quite a few contradictions when scouring the internet for advice!

Good luck!


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