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Not A-typical crohn's/colitis sufferer with constipation!
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lindsay827 posted:
Just curious how many of you out there suffer from the opposite problem (constipation).. My doctor says I am not the a-typical cc patients as I have a problem going. I do get diarrhea from time to time and did have it when I was first diagnosed to where I would go up to 20 times a day but for the past 3-4 years it's been the opposite problem. He also thinks that i suffer from IBS which could be causing the issues as well as slow mobility issue. I get so bloated and full of stool that I can't stand up!

I have been on about 10 different strong drugs for this and the drug therapy just doesn't work for me. He is now suggesting that I speak to a surgeon to discuss a resection to remove the diseased sections (last 2 sections of colon). I would love to hear from anyone who is also on the other end of the spectrum with constipation issues.

Thanks everyone - you've all been great!
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rednewbie responded:
Lindsay,
I always wonder when no one replies if that means no one read my posting... I just wanted to let you know.. I read it.. and NOPE.. I have do not have the constipation issues. Sorry, but please be patient. I do know there are a few member on here who do.

However, please think very careful about surgery and consider the risks.. I had a resection in 2008 and while I do not regret it. I deal with adhesions, scar tissue and hernia issue I did not consider before the surgery. Please, make sure you consider all your options and that you have all the information before you make your decision. And know, the stats of reoccurrence of crohns at the resection site. I do not mean to scare you.. I just want you to have the facts. Knowledge is power.

Making an important decision like surgery is best if all the cards before hand.. Surprises are not unavoidable, but best to be prepared if possible.

Hugs.. and once again. Please remember I do not regret my resection and I would do it again if I were to go back in time.

Hugs,
Gin
 
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hannahleigh89 responded:
I do have constipation sometimes too. But mine isn't severe enough to even consider surgery for. And I don't take medicine for it usually because then I have diarrhea for days. So I'm not of much help.. Just know that I do deal with it too.
 
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marbleator responded:
I TOTALLY GET IT! I am so sorry! It is painful, for sure. It is hard because I want to eat, and obviously know that I have to, but at times I just can't because of the bloating. It is scary when it doesn't come out. I wonder where it goes! I often have to use milk of magnesia if things don't push through, but even so, at times that doesn't help. I actually work a lot with a naturopath, and have found some things that do help. I take magnesium citrate pills before I go to bed, but I also do what are called Castor Oil heating packs. Have you heard of those before? You put pure castor oil on your abdomen, rub it in, and place a covered heating pad over your abdomen, a half hour before bed. Turn it off before you sleep, wake up, and chances are, you'll poop. I also go and have constitutional hydrotherapy done every week. I could definitely give you more details on any of these, but I wouldn't try them for sure unless you knew that they wouldn't make it worse. Even though, it is really hard at times, I have to make myself active. I try to wash dishes, or go for a walk, or a run. There are times though when I can't walk either. Those are the times when I let myself cry Are you getting plenty of clear liquids? Do you get full really easily?

It is really frustrating that we cannot control our bodies. I wish I could poop on command, knowing that it feels better than having poison swimming around in your system. When I was first diagnosed about a year-and-a-half ago, I had the same amount of diarhea as you, but before that, it was constipation a lot growing up, and for the past year, it really has all been constipation mostly. I guess we are special, eh?

Anyways, let me know how I can help. Those are the suggestions I can think of for now. I would love to support you in any way I can. So sorry!
 
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lindsay827 replied to marbleator's response:
I REALLY appreciate your replies! Knowing that there are people out there that understand sure does help. At this point I am just compililing information as my doctor at the Mayo Clinic is running out of ideas! I was so excited when we moved here to have the Mayo Clinic in hopes that they would be able to help but unfortunately they tell me the same thing, that I am a "tough case!"

Even as a kid I always had issues of not being able to go. My doctor and previous doctors have said that I have "mobility" issues or a "lazy bowel"... now my almost 7 yr. old son is having the exact same problems. We just took him to a pediatric GI doctor and they are saying that he is full of poop all throughout his colon which totally scares me! I don't want to watch him go through the pain that I have gone through.

I do have an appt. coming up just to talk to the surgeon and get some of my questions answered as I do not think this is going to be the answer for me but when you run out of options and your colon is so inflamed, your stool just won't come through.. that is scary!

I have learned how to alter my diet through trial and error over the years which helps but it's still very tough! I do drink water and juices all throughout the day as well as aloe vera. I do take a fish oil (omega 3) tablet as well as Calcium Citrate and a probiotic along with all my crohn's drugs that I am on. I am probably the healthliest person as far as eating goes that I know... which is ironic that I am the most unhealthy when it comes to health! Oh well... )

I guess we are special but I would like a break to enjoy life for more than a week at a time! I'll let you know what the surgeon comes up with ... but I'm not going to make any RASH decisions!
 
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marbleator replied to lindsay827's response:
I wish I could say that there is an easy way to cure it, but as we know, it is a fun disease! Yes, it is so hard, and frustrating. I am so sorry you are going through this. Let me know what helps. I am interested to know for my sake, and I hope that you are able to find some relief. I feel like I do so many treatments as well, and at times it feels pointless. In reality, I know that they do work, I just have a persnickety body that sometimes doesn't want to accept the treatments. Oh, boy!
 
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arbob2 responded:
With my UC, I only have had diarrhea. A constipation day now and then would be welcome relief!

I feel I'm fortunate now because I'm on Align and Lomotil, and that combo seems to have brought me closer to remission than anything else I've been on for two years. Hope it lasts. We just never know, do we?
 
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tiff9185 responded:
Hi Lindsay,
I am working with a new GI dr to find out if I have Crohn's Disease. I was having all of the "typical" symptoms and now they have reverted the other way and I am constantly constipated. So much so, it has been a week and a half before I have gone. The dr says it is because of my pain medicine (for my back) but I only take it a couple times of the month. I also understand the bloating aspect here recently. I have looked like I was 6 months pregnant. I just had a colonoscopy and esophagoscopy and the colonoscopy didn't show Crohn's. My next step is the pillcam.

I have read that Crohn's does come back after surgery. I don't know how much this has helped since I haven't "officially" been diagnosed with Crohn's. But I hope it helped.
 
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Louise_WebMD_Staff responded:
I have constipation from time to time. Particularly when I am either flaring so bad (I think this ends up being dehydration and narrowing related) OR not flaring at all but haven't been brave enough to add vegetables and whole grains back in.

Resections scare me just because Crohn's comes back in a different spot and there is no guarantee how long a surgery induced remission will last. On the other hand-surgery plus maintenance meds can induce remission for decades for some people.
 
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Louise_WebMD_Staff replied to tiff9185's response:
Your pregnancy thing is like me. One day a couple of weeks ago my partner and I were standing and my gut was being unhappy. I looked down and said "maybe if I just have this baby, things will be better" She looked at me startled and then at my belly and said "You are right-you look seriously pregnant"
 
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kaj2313 replied to Louise_WebMD_Staff's response:
Hi, I had a reseaction in Fed 2010, had a lot of issues after, thought It was all back. My worst fear. But I had tests done a couple of weeks ago. There is no signs of active Crohn's at this point. They changed my meds and now for 2 weeks I have never felt better. I'm not saying it is right for everyone, but at this point I'll even take a few months of no diarrhea. I know this isn't the case with everyone. It just seems that with Crohn's what works for one does not work for someone else. I was ready to give up, untill I found support here! So please keep pushing a head! Stay here and vent or yell or just read it helps so much!!!
 
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Louise_WebMD_Staff replied to kaj2313's response:
Most people who have surgery end up wondering why they waited so long has been my experience with people who have Crohn's or UC and have put off surgery for as long as possible.
 
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lindsay827 replied to Louise_WebMD_Staff's response:
thanks for all of your replies... it definitely proves that we are all different but the same in so many ways! All we can do is keep on truckin' and find the best approach for ourselves. Good luck everyone!
 
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Louise_WebMD_Staff replied to lindsay827's response:
That we do.
 
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forgetfulagain responded:
I have also developed constipation in the last year or so. I had seen a motility specialist who was pretty sure it was idiopathic, meaning, with no specific cause. He put me on Miralax, upping the dosage until I was passing stool - about 3-5 doses a day.

In terms of diet - focusing on fiber from grains has made my constipation worse. However, eating more fruits and vegetable fiber has actually helped. I eat a lot of fruit now, especially plums and apricots if I can find them. I stay away from high fiber cereals and other grain-based fiber.

Here's something to consider, however. This last time, I started having typical diarrhea symptoms at first and then reverted to constipation. It finally got better only when I started Canasa suppositories to treat the inflammation in the lower part of the colon. It turns out that proctitis - the inflammation of the rectum and lower colon can cause constipation! I've also used Rowasa enemas in the past and they also helped my symptoms.

Miralax is such that if you keep upping the dosage eventually you'll have to go - it's used for bowel prep. The thing is to stick with it. It's a pain to keep mixing it into drinks throughout the day, but it's better than feeling like you've eaten a ton of bricks...

Have you seen a motility specialist? I would do that before having surgery.

So, that's what helped me. I hope you feel better soon.


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