I agree with Beave. I think yearly blood tests with inflammation markers and fecal calprotectin seems reasonable and then you can stretch the colonoscopy to every 3-5 yrs if you have no new symptoms....
I don't have as severe of issues as you are reporting, but I definitely have had my nights of stomach pain and nausea that don't seem related to a bowel obstruction and it has kept me up for half the...
great to hear! I'll have to try them if my shots don't get renewed. Thanks for sharing!...
Have you ever struggled with an eating disorder? I'm wondering if you have a sense of control when you don't eat? Your body needs nutrition in order to heal and function. Going 3-4 days with no food...
I'm at 335 after two years of monthly injections....still not great but I was in the 200 range prior to the shots...
Hi Erin, I am getting injections once a month and even with that I am low/normal range. I am planning to talk to my PCP about re-testing and possibly increasing the injections to twice a month...
Hi Jake, I'm sorry things have been so rough for you but I'm glad you are getting monitored at U of C. I was getting neurological symptoms from low B-12 before I started on my monthly B-12 shots. I...
Hi Jake, Sorry you are still without a plan you are comfortable with. This really is a frustrating disease! I am considered to be in remission, but like you, I have terrible motility problems. I use...
Hi Jake I'm glad to hear you liked Dr. Rubin. I suggest that you continue to see him until you have everything sorted out, even if it means driving two hours. Once you have everything stabilized (and...
Glad to hear the flex sig went well. Thalidomide is an interesting idea. Have you read up on it at all? I hope the dilation works well for you....
You can get Crohn's anywhere from your mouth to your anus. When is the last time you had a colonoscopy or CT? Do you think you might have a stricture in there?...
NCOT- The thought of a flex sig seems painful. I'm so sorry that after all you have been through that you can's straight up get Stelara. It's amazing actually! I hope you can get the energy to argue...
Jake, Good luck with everything and I'm glad you are getting better. I'll watch for your posts!...
Jake---I'm glad you are seeing Dr. Rubin and I'm curious to hear how your visit goes. He is very smart, and very thorough so I hope he has some answers for you. I have similar problems to you where I...
I'm home from the hospital. I'm doing ok but extremely bloated which is very uncomfortable. I'm wondering if this is normal and if it will resolve on its own? Last time I had a bowel obstruction it...
Hi Jake, U of Chicago has a great reputation. I saw Dr. David Rubin. He helped me decide to have surgery when I had several strictures and a partial bowel obstruction. He is very smart and hopefully...
No you haven't made me more depressed. But I suspect you are right that it might be active Crohn's at the surgery site only I can't prove it and I'm not on any maintenance meds. I really hate the...
Wow Juliet! That sounds horrible! I hope surgery helps. It looks like I'm going home today and staying on a low fiber diet. I am suspecting that my numerous bouts of "bad IBS" pain that sometimes...
So sorry to hear that you and your husband are going through all of this. I don't have great answers, but if Mayo was the most help maybe you should consult them again. I have only had one resection,...
Thanks everyone! At my colonoscopy in January my GI said the surgery site was a bit inflamed but didn't mention a stricture and all the biopsies were normal.( I still want to know why it was inflamed...
Hey there gang, I haven't posted in awhile and hope everyone is doing ok. I've been in remission with my Crohn's since my ileo-colic resection in 2014, although I constantly struggle with IBS . I...
Hi NCOT! I've been taking a break from the forum but I noticed your post and wanted to say Hi! I was watching Jon Oliver last night and the focus of the show was on the impact of Brexit. It sounds...
You can call your local lab and ask what they charge. I also found this online for $99. I don't know if that's better or worse than your lab....
The only thing that has helped my B-12 levels are the shots...
You might want to ask how close in proximity are your multiple strictures? If they are close together and you won't lose too much bowel, then I think you should seriously consider a re-section...
If you are positive for c. diff I suggest that you give in and take the oral Vancomycin. It is dramatically less expensive than the pills, it works better than Flagyl and it will help you avoid an...
I am not familiar with trimbutine, but on wikipedia I found this: Trimebutine belongs to the class of medications called spasmolytics. It is used to treat irritable bowel syndrome (spastic colon)....
I remember it working slowly and worrying too, but in the end I was all cleaned out in time for the colonoscopy. Good luck and I hope all goes well with the colonoscopy and you get good result from...
What an ordeal!! I hope you heal quickly and can put this all behind you....
Fecal transplants are usually done via colonoscopy after a completed cycle of Vancomycin. Since you are needing another colonoscopy anyway, I strongly suggest that you consider it as an option. It...
What is a gastric regulator?...
Senokot or another stimulant laxative definitely will work, but will also make your cramping worse. I suggest Miralax. It will work slower but keep taking it and it will draw water into your stools...
I can't remember having a prep, but I was on all liquids due to a partial bowel obstruction, so I don't have any suggestions. Good luck with your surgery though. I hope it all goes well....
It could be a flare, but it could be a bacterial infection like c. difficile or salmonella. See if your doc will order stool cultures in advance of your next visit....
This is my favorite prep using Miralax. You can follow it up with any kind of liquid including vitamin water so you don't have to drink a bunch of sweet or disgusting tasting prep. I like it better...
No I don't have nausea after eating, but I did when I had c.difficile, a bacterial infection. I think you should ask your GI to order stool cultures to rule out any infections. Also, nausea can come...
Yep. It is a constant challenge! I have had bowel re-section surgery and I am in remission with Crohn's but struggle constantly with SIBO (small intestine bacterial overgrowth) and slow motility....
Good luck with everything. I was on Pentasa for several years. I had a stricture in my ileum which progressed to a bowel obstruction and I needed re-section surgery. There are studies that seem to...
low residue diet info: https://www.webmd.com/ibd-crohns-disease/low-residue-diet-foods#1...
H.pylori is a common bacterial infection which is often the cause of stomach ulcers. I'm sure many people in NYC have it. If CD was found to be in 2/3 of your colon and in your ileum, then that is...
I think you should take Miralax every day for awhile and see if it regulates things. It can take several days for it to work...not a few hours. Miralax adds liquid to your stool so it is easier to...
Hi Max, Sorry you are going through all of this! My thought is that if it is Crohn's you will know it eventually. There are a lot of bacterial infections and imbalances that don't show up on stool...
Miralax prep has been the best prep by a landslide. You can mix it with whatever you want and then follow it up with loads of liquids of your choice. As far as your questions Everyone is different...
Yes, all the time. My motility is all screwed up and it is a constant struggle. I do take Senokot sometimes even if it causes diarrhea if I feel backed up....
In answer to your question about the stairs.. you will stay in the hospital a few days and they will have you up and walking the halls as soon as possible. You can ask your doctor about your specific...
Nice pics Miranda! We are just moving past winter here in northern Michigan. Who is the cute little dog on your home page?...
the recommendations against Imodium are that it can stop you from pooping when you have an infection and should be getting rid of toxins. In your case with loss of bowel, and especially because your...
I use Senokot, but when I had my stricture it caused too much cramping for me. I agree with Beave that a rectal suppository will put you out of your misery within an hour so you can time it in the...
Sorry to hear you are back in the hospital. Are you a candidate for ablation? My dad did that and has a pacemaker with a defibrillator built in and it seemed to get the a fib under control. I don't...
I'm sorry you are going through this! But you can't work, and you know that. I suggest that you set aside an hour or two each day to make the calls you need to make and work on the issue. The rest of...