I definitely helps to hear real stories such as yours! I am so sorry to hear you developed cancer.. I often worry about this very same thing! I have no immune system as well being on immune suppressants. I have very skinny stools but they have never mentioned strictures, etc. just inflammation in the last 2 sections of my colon.
I have taken stool softeners in the past, actually the one that really worked for me was Surfak.. which is often hard to find but I was even able to take it while preggo. Curious which type you are currently taking?
I really think that these drugs that I am taking which aren't really helping are more dangerous than the disease iteself! Hang in there.. and good luck!View Thread
I have used Miralax in the past and it just makes me have diarrhea and actually caused me to be more bloated. My dr. recently took me off of it and gave me amatiza which just causes me to have bad headaches. I find if I drink lots of fluids and of course try to increase what fiber I can handle it works the best. I have not seen or even heard of a motility specialist. I will check into that because even back 20 years ago with my original PCP he told me he thinks I have a "lazy bowel!" My current GI doctor even mentioned a motility problem but I didn't know there were specialist for it.
Currently I do go every day but I know there is SO much more as when I lay down I can see and sometimes feel it contracting. Also the narrowing is obvious as it is formed and "skinny" ...
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!View Thread
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!View Thread
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.
I guess eye problems are common with an IBD. I was on Remicade and I guess inflammation is common while on this drug as with many other drugs for cd or uc. I would experience times with bad blurred vision which was very scary. My dr. yanked me off of that medication thinking it was causing. It did seem to subsite but I still get it from time to time on my current meds (humira, methotrexate). I would definitely advise paying attention to the symptoms and it sounds like your're on the right track.. good luck!View Thread
Terry, I was diagnosed 5 years ago with crohn's/colitis. I have been on every drug under the sun myself to include a hospital stay recently due to pain. My last 2 sections of my colon are highly inflammed. After 2 days of IV steroids and morphine (sp?), they sent me home on 40 mg. of steroids and now I am down to 10mg. which is no longer working. I am also on methotrexate (low dose), 40mg. humira 1x/per week, daily enema's of Rowasa. Since I have been on everything my doctor is now mentioning surgery but he wants me to give the drugs a chance even though I have been on them for months now with no relief.. with that said, I feel your pain and am very glad you found this group. It has already helped me so much.
Keep us posted how your appt. goes. I am sending good vibes your way! I know how it is to take care of a family all while feeling "crappy" pardon the pun! Hang in there )View Thread
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!View Thread