Hi all The backround I just found this site i am 52 my GI said i have had crohns for a long time i just did not know it.I would have hain in my gut 3 or 4 times a year. I would stop eating and the pain would go away after a day or two. Then June 2009 just got cleared of my heart 2 heart attacks from 2007. July 2009 in the ER with paim in my lower right side . They teol me crohns @ the terminal iliam . Life as I have known it changed. They put cameras up and down both ends the whole 9 yards. They tell me I have 8" of scared and inflaimed intestine. Eating Yorgurt and boost . cant stit up with my belt on cause it presses on the T/I how lucky is that. I am on Cinzia and Endcort not helping much . Now the Question should i push to have a resection done by lap now,change meds or wait till it gets worse and i end up having it done in the ER when it really bad. Almost forgot i have a very stressfull job looking for some help
Woody, First welcome to the crohns group.. Second, I am sorry you have crohns. You are exactly where I was about 2 years ago, and I chose to have surgery. I had about a foot of my small intestines removed including my terminal iliem, and 6" of my large intestines. I had the surgery in 2008, but due to a surgery I have in 2007 (lapscopocic) I ended up with incision hernia that I had fixed when I had my resection. I then ended up busting the hernia 2 more times after the resection in less than 6 months and now have a full abdominal mesh, and adhesions from surgeries. On top of that I have busted my hernia again and I have a stricture (which is most likely what you have now) at the site of the resection (which is very common ask your doc for details) and I the risk of surgery is higher than the risk of me walking around in pain all day due to the stricture, hernia, adhesions, and scar tissue.
Please note, I am an extreme case. I have had 6 tummy surgeries since Dec 2006 - August 2008. That is a lot of surgeries in less than 2 years, that is alot of scar tissue and adhesions.
But, once you have a surgery you open the box for more. My suggestion is meds, and avoid fiber to keep from having a blockage and having the resection by emergency. I have been hospialization with a blockage, treatment is clear liquids and sometimes the blockage can clear on its on own with out surgery. My GI says he has seen patients walk around with a stricture for 5 years, as long as they can tolerate the diet and the pain. And they know how to handle it when they get blockages. Its a fine line to walk, and its a personal choice. Blockages can be very serious. Its a delicate decision and avoiding fiber is not fun or easy.
It's a tough decision. It's a personal decision. But that is my thoughts. I do not regret my resection. But two years later I am worse off, not better. Be sure to read that sentence over and over again. I never went into remission due to the resection. I am sorry to be so honest. I don't mean to scare you, I just want you to know a resection is not a cure all.
Hi Gin Thanks for the reply.How do people do it? I have moderate to severe Crohns as per my GI guy. The not eating ,the lack of get up and go , being exhausted by 7pm .When the Family go's out to eat I stay home . The lack of interest in things I used to do . The problems at work just not caring whats going on aroud me , the missed workdays , the looks you get . Then their is the emotional end of it.Amost a year of yorgurt and boost a few ham slices a few pieces of cheese . About 3 weeks ago i had 2 good weeks,I thought i was in remission .But it was just a passing thing .I was assumming that if i catch it early i would have a better chance of a normal life . I have lost 40 pounds in 9 months Gin was your surgery in 2007 was it also a resection? thanks for the help woody
Gin, I am new to this group but not new to crohn's/colitis. I was diagnosed 5 years ago and have been on pretty much every medication to include remicade infusions and currently humira injections weekly which currently is not working. After being admitted to the hospital a few months ago and now back on steriods my doctor has a few more things up his sleeve to include nightly enemas to see if that will boost the inflammation in my colon until the hopes that the humira will start working. He is trying to alleviate my having to have surgery as he feels that is a last resort as do I. I haven't had inflammation in my small intestine for about 2 1/2 years right now it's mainly my last 2 sections of my large intestine. I am so scared about surgery as I know it's not a full-proof and most likely I would end up with scar tissue damage and more surgery only to be in worse shape. I just don't understand why my body won't accept some of the drugs. It seems they work initially and then no longer work.
Well... if nothing else it's good to know I am not alone!
I should also mention that I normally do not get diarrea, I have the opposite problem with my stool not being able to get through. Every now and then it wiill go to loose stools but my doctor says I am in the 10% of patients who have constipation (although it's not hard stools, it just can't get through the inflammation).... sorry, I know that's gross ;o)
I am sorry, I had not been on the computer lately. I will be honest I eat too many carbs and sugar but I find that the carbs and the sugar stay in my system longer and I am eat not normal food but enough to live a bit of a life. Not normal by any means. My resection was in January in 2008. Remission, is kinda a joke if you ask me. I might have a few days where I do not have complete liquid bowels, but then just when I breathe a sigh of relief boom! Here comes the liquid again and at full force. So, I just give up. I keep Propel on hand, at all times and eat more carbs and protein than other food group. And avoid grains, fruits and veggies like they are the plague. Normal?? Ha! Nothing normal here. Honey, think this through, because the scar tissue and the odds of having crohns back at the resection within a few months to 2 years is high. But I do understand you want to try a resection, it might be the answer some people have good luck with it.
There is no good easy answer with crohns. Crohns is cruel disease with no easy answers, trust yourself and your GI.
Lindsay, you are not alone. I am the queen of side effects. I just discovered not only do I get every ugly side effect to Predisone but it does not even work for me. I have been shocked when I have read what it does for others. And for me all I get is the aches, pains, emotional breakdowns sparked by commericals, and cavities in my front teeth. And honey, I know about fear. I know all about fear. I have a busted hernia and at least one stricture and surgery is no longer option for me without a huge risk to any good intestines I do have due to a mesh lining I have in place. If I have surgery the mesh will have to be scraped from my intestines.. OUCH and the risk of damage and infection is high. So, unless life threatening I have to live with the stricture and hernia and pain, and avoid blockages. Oh lindsay, how about you and I share a big hug and our fears. I try to just avoid the whole issues, but sheesh what a mess. What a big stupid mess. And there is no answer for me.. Other than live with it. How did I get here. So, please think about surgery...
Hugs Honey.. Big big hugs.. I wish I had an answer for you. But please avoid fiber foods until you know you can avoid a blockage. A resection under emergency conditions really stink. Hugs, Gin
Hi Woody! So sorry that you are going through all of this! I can relate to you in so many ways! When I read that you drink Boost to keep goin, I just smiled. I have been living on that stuff for over 18 months now. I was diagnosed with Crohn's in Sept 08 and had a resection in March 09. That surgery was followed by rectal surgery to repair an anal fissure that developed from all of the diarrhea. I just had my 3rd surgery; this time a temporary colostomy to try to give my poor intestines a rest for a while. I hope that this resection gives you some relief for a while. Mine did not really do all that much for me, unfortunately. I am on Pentasa 4000 mg daily and Remicade infusions now. I was recently hospitalized for a flare at my stoma site and when they did a CT scan, they found several strictures. I'm not trying to discourage you from your surgery; many people find remission and go for years before having any more problems. I will pray that you are one of those people! Please keep us posted! This is the place to come with any fears about upcoming surgeries or procedures. Someone here has been through it and can give you some reassurance. Hang in there!
Take care and big hugs to you! Welcome to the group! Mindy
Gin thanks for your reply. I am just so confused with all of this. I try everything my doctor tells me and currently started the enema's nightly which aren't as bad as I thought. If they would help, I would do them as many times as I had to! We'll see if they start working (ha!) Since I am in the low percentage of people that do not normally have diarrhea (it is hard for me to pass stool, it's not hard but it seems it takes an act of god to get it through the inflammation). Therefore, when I say I am confused I often think that I need fiber to pass my stool.. you say to watch out for bloackages due to fiber? What to do, what to do?? I really often think that I am allergic to something but don't have a good plan to figure out what that could be. I have had the tests through my doctor for the normal stuff but have been told that when they test you have to have it in your system so I don't know that I have truly been tested?! I have tried eliminating certain foods for a short period of time but not sure I am doing it long enough, etc. Man, it is a full time job trying to get through this eh? I do know that surgery is not the answer though even though I wish it would be! I envy those people that can just eat whatever/whenever.. I joke with my husband that I eat the healthiest of anyone I know and am probably one of the most ill people I know! Oh well.. such is life I guess! I will keep truckin' along to try and figure this out. Hugs!
Yes, if you are constipated I would agree with you, I would keep eating the fiber. You are right, you need to keep the poo moving. I guess I would be careful with the hard to the digust food, like celery, cabbage and popcorn. Popcorn is very hard and if you ask the board, many of us had had pain and even blockages after eating popcorn. So eat your fiber, just be smart.! .
You are also correct, crohns is such a complicated disease sometimes my head just spins trying to keep up on all the nonsense that comes with this goofy disease. Do this, do that, do not eat this, stay close to the bathroom, pizza works better than salads, soups runs through me, poptarts stays longer... blah, blah, blah, blah. Its crazy.. Enough to make me need more antidepressants meds!!
Good Luck sweetie.. I am not sure about a resection, I just know there are risks and benefits and its a difficult decision. Just make sure once you make the decision to believe in and never ever look back. Remember you made the best decision with the information you had at time, thats all you can do. I do not regret my resection, but .... I sure wish things have gone better. Hugs honey, Gin
I am also one of those few that get constipation. It happened for the first time last year and I was dumbfounded. I didn't even know it could happen.
Anyway, my GI sent me to another GI who specializes in constipation and after they eliminated all possible sources of it, they told me it's just happens.
As for fiber: when my constipation first started, my GI thought I wasn't eating enough fiber and kept pushing me to eat more, more, more. After a few months, I didn't know how to add more fiber (eating raw veggies, fruits, whole grains, cereal, etc.) so I ate some of those new products with 50% of daily fiber in one serving. I think it's chicory root they use. Anyway, ended up in the hospital with a horrible blockage because, surprise, surprise - I had too much fiber!!!
What ended up helping me wonderfully is Miralax. It's kind of expensive, but your doctor can write you a script for the generic version. You can mix it into just about anything from coffee to juice, etc. The specialist GI told me it is the safest drug in the world and it cannot harm you in any way. There are no side effects or anything. I was taking up to 4 doses a day and after a few months, it completely resolved the constipation. If you have not tried this, you must!
wish you all the best and some good health on top!
Thanks for the replies once again.. they really help me keep my sanity! I know this is going to sound weird by when I say I am constipated in my eyes it's only because my colon (last 2 sections) are so inflammed it cannot pass through. When it does it's not hard like most would think it's either long skinny (soft) or broken pieces. With that said (sorry I know it's gross), I eat wheat when I can, fruit, salads in moderation as they all cause terrible bloating & pain. My doctor has also perscribed miralax and maybe I just haven't given it enough of a chance but it doesn't really do anything. Again, my stools are not hard.. I am curious if yours are (forgetfulagain)? So for now, he's got me on Humira 1x per week, 15 mg. methotrexate, 10 mg. prednisone, and most recently added Rowasa enema's nightly. On top of this I also use Aloe Vera juice 1x/day and I was taking fish oil but haven't taken that for at least 2 months.
Anyway, I just can't help but wonder if I am allergic to something which is also aiding in the inflammation but I am sure it's just my body not cooperating. So weird how some people take just fine to drugs or a particular regimen and others just don't! Most of the drugs work for me for a few months (if that) and then boom... nothing, even prednisone! So frustrating! I am a pretty thin person and my stomach is so large and bloated I sometimes can't move! Well... thanks again everyone for your comments and support and I send you all good health vibes!
No, my stools were not necessarily hard. What the GI motility specialist told me is that constipation can include just the inability to pass stool, regardless of what it's like. Mine was usually in small pieces when that was happening to me.
I didn't give Miralax much of a chance at first, but when I upped the number of doses I took, it really made a difference. But it takes at least a week of regularly taking it for you to start noticing. I'd mix it in my coffee, gatorade, Tang, orange juice, etc. during the day to get all my doses in. What it does is add more water to your stool so that it takes less effort to pass.
I also understand the point about inflammation making it harder. First off, it makes it more painful, but I would not have the strength to move the bowels properly because of the pain.
Try sticking to Miralax - it's completely harmless and very easy to take - has no taste whatsoever.
I never found Aloe to do anything for me. I do believe in probiotics, but they don't always help me either.
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