Sorry I am so late with a reply. You are correct in that were is not enough info for those that have constipation with crohn's. I too tried the low residue but as soon as I started adding regular foods the issues got worse. Miralax did not give me much relief at all. I also visited dietitians at mayo clinic but they would all tell me the same thing, low residue. They didn't know how to treat someone with constipation. I also saw a naturopath and they gave me several herbals, supplements which didn't help. The only thing that I did that helped was drink lots and lots of fluids but I knew I couldn't live that way any longer (6 yrs) so surgery was inevitable for me. I have since had my entire colon removed and pray that it lasts! I hope you have gotten relief since your last post. Hugs!View Thread
Since my original post of 2 years ago I got really really bad! My colon strictured so bad that no stool would pass through. The drugs were no longer working. In June of 2011 I had a resection surgery where they removed about 12" of my colon. That lasted for about 4-5 months and then the narrowing/inflammation started to return. In March of this year I had to go in for emergency surgery where they did an ilestomy in hopes to later reverse. So far, I am in total relief to not be a prisoner to the bathroom! It is a last result but for me it has been a hugely positive thing. I wish everyone good health and hope that you all find the relief that you deserveView Thread
Ali, I'm sorry to hear that you're not doing good right now. I too am feeling pretty "crappy!" I've definitely been worse but it's so hard when you start to doing better and then it just takes a turn so quickly! I'm at the point where I am so tired of trying to figure it out i.e. which supplement did I add that could be bothering me, what did I eat, etc. I'm just at the point that I need to hear it from the surgeon if it's not going to be a good option so I can know and get it out of my mind if they don't feel like I'm a good candidate. I have heard that if one has crohn's and it has shown up in the small intestine they will not see you as a candidate as you said, it will most likely just show up in another area. For me over the past 6 years mine has been in the last 2 section of my colon every time. J-pouch would be my first choice from what I've read so if they can't do that on me, then I guess I'm back to square one. All the doctors that I've had have said that I am one of the toughest cases they've seen since none of the drugs end up working for me for more than a few months. It's been a vicious cycle of trying a drug, it will work sometimes in the beginning for a short time or not at all.. then I try another, end up in the hospital go on steroids, wean down.. then get to a certain low dose and flare up to start all over again. UGGGGHHHHH.. I know many of you are dealing with this as well. They say God only gives us what we can handle, I'd like to PASS on my next turn!
Just wanted to post this Protein supplement drink that I have been on for a few weeks.. I don't tolerate very many of these but this one has been pretty good. It's a little pricy but you get what you pay for ) Anyway.. just wanted to put it out there for those trying to add some calories in your diet.
Ali, Thanks so much for all your information! I did go purchase the L-Glutamine as I know this is something that I need to add to try and help heal my poor intestinal lining ) And yes, it is so frustrating to figure out what works for you. It just seems like for me, once I think I have a good handle on it.. it changes! I understand what you mean about waiting to see your doc until your ready as I have sooo been there many times! I was on Remicade and was very reluctant as it just seems like such a huge deal to do infusions. It actually worked really good and maee me start feeling human again. Unfortunately it, like everything else I tried worked in the beginning and then they had to increase the dose (less time in between infusions). I started getting blurred vision and my doc took me off and started me on Humira. That worked for the longest period (almost 2 years) although they did have to increase that dose as well). Now I'm on Cimzia and it isn't working at all. I'm stuck at 13 mg. of prednisone currently and I still have inflammation but it's not as bad as it's been in the past except for the bloody stool in the morning.
At this point I am trying to weigh everything out and am going to have a consult with a surgeon at Mayo just to see what the options are since i have been unsuccessful at ALL these dangerous drugs out there for this disease. I know that surgery isn't a cure and it might not even work for me, but I feel like I need to get all the information I can to help me in my journey.
I hope that you as well as all the other's here find what works for you to get some relief!
I remembered I had one bottle of the sample that I received of the AbsorbPlus (berry flavor). It tasted terrible! I blended it up in my vitamix with a little ice and I got down about 1/3 of the glass without gagging! I don't know that that will work. I think I tried the chocolate and I don't recall if I like it. I think if I could add stuff to it but it's already so expensive don't know if that is very smart. I do have a VitaMix like I mentioned and am looking into possible adding the mix into a few things that seem to work for me (Almond Milk and maybe some fruit however don't know if that's a smart idea or not. I am reading a few different books right now to try and figure it all out but I think I've got myself so confused. The problem is that I have company coming the first week in April as well as we have a trip planned to go out of town a few weeks after that so timing is of course not great either! My current state is doable so far with doing smoothies, etc. however I don't think it's "healing" me. I also would love to check for food intolerances as I am sure that that is part of my problem.. eating things that are "culprits!" I would love to hear your recipes though if you don't mind. I am still experimenting. Green smoothies are what I am sure I need more of and less fruit but it's hard for me to find a combination that tastes drinkable!View Thread
I actually have Jini's book and have gone back to re-familiarize myself. I think I am going to give it a try since it's pretty straight-forward! 6 weeks will be a LONG time but I'm at the point where drugs aren't working and I am not absorbing anything at all! Thanks for reminding me about her. I think I'll go ahead and order the drink mix and get going on it asap!View Thread
I try and add as many vegetables as possible as I too get very bloated and gassy. It really doesn't matter what I eat etc. I am awaiting tests to find out if I also have a motility problem, wheras they say my muscles and or nerves within my digestive system aren't working. Every time in the past I think I am constipated only to find out it is inflammation and they stick me on prednisone. I think I may have a food intolerance which may be rendering the inflammation. I am trying to find an elimination diet to help me figure this out.
Lisa, Thanks for your reply. It is for sure a frustrating thing dealing with this disease. Just when I think I have it figured out or at least feel a little bit better it changes! Currently I am feeling pretty good with watching my diet but I am still on 15mg. of prednisone. I know as soon as my dr. starts to wean me down it will start things up again! I am a little scared as I just accepted a part-time job.. hoping to be able to hold it down since I don't qualify for disability ( I hope you can find some relief. I've come to realize that it's a day-to-day disease and whatever gets me through that day is an accomplishment! Hang in there and thanks again for your note.View Thread