There are other antibiotics to consider, since the current one doesn’t seem to be working: amoxicillin (since it worked previously), Tindamax, rifaximin (few side effects but expensive), Augmentin (amoxicillin & clavulanate), and some others. If none of the reasonable antibiotics work then a biologic medication, such as Remicade, may well do the trick.

Why do you think the canoe/kayak training might be doing this? Has it exacerbated problems before?

Thanks Scott. It was actually Amoxicillin with Clavulin and it did work.  Being that I am older with secondary Addison's from years on Prednisone, my muscles have weakened and I am in low dose lifelong steroids now to sustain life. I don't think my rectus abdominus muscle ever regained it's integrity after colectomy and the paddling has a strong core component. I get tenderness  at the old ostomy site after paddling or even after doing limited floor exercises. 

I’d be surprised if your paddling is causing any pouch issues. You’ve probably got some adhesions at the old ostomy site, which can make the bowel less mobile. As everything else is sliding around during the movement of paddling, the adhesions might be tugging on loops of bowel that would be more comfortable if they could move more freely. Sitting on a hard seat for extended periods could cause some discomfort at the tail end of things, perhaps.

I am sorry you have been suffering for a long time! Would you like to try biologics??? I think your doctor would agree its time.

Can't Lauren. I have latent TB so no biologics.

@GEB56 posted:

Can't Lauren. I have latent TB so no biologics.

I am sorry to hear that. I honestly do not know what else to say except to get a Ileostomy bag again, I think you exhausted every possibility but I could be wrong. I honestly would get a ileostomy or a K-pouch. Maybe you could try some more doctors but I think you have done everything you can do at this point from reading your previous posts.

Geb56, are you 100% certain you have latent TB? Has it been confirmed? I only ask because my TB quanteferon test came up positive years ago and my rheumatologist did not believe it. This is because I had not traveled to where TB is endemic, nor have I been in contact with communities that put me at risk. After ordering a T-spot test, it turned out the original test was a false positive, as my T-spot was negative.  Now I have to have a T-spot test every year instead of other tests. It is more expensive and has to go to a special lab.

I am very appreciative that my rheumatologist went the extra mile to know me as an individual and to be suspicious of my result.

Tuberculosis is an infection by a bacteria in the acid-fast bacilli (AFB) family. Some of the TB tests are not specific enough. I just thought I would throw it out there in case it might help you qualify for biologics. Of course, if your latent TB is confirmed, that is different.

Jan

I was very interested in your reply Jan as I have questioned the positivity for many years. Here is the timeline. 1984 negative TB skin test. 1988 positive Mantoux skin test. I had just had a baby and a public health nurse thought it may be a false positive so I felt relieved. Although I worked in a health care setting for doctors, I never travelled; am a middle class Caucasian; no communal living or drug use.  (hard to understand where I could have contracted). 2003 went to work at a hospital and was retested with Mantoux...positive again. Infectious disease doctor said that since 15 years went by, I should just have periodic chest x-rays. I did and no signs of active TB. I worked for a rheumatologist from 1999 to 2015. In 2012, I asked for a QFT blood test as I was still unconvinced that I had latent TB. It was positive. Still, I was unconvinced. I investigated more a few years ago and found info that the particular lab in 2012 had significant false positive QFT results (lab error). More forrecently, I asked for a referral to a Toronto TB Clinic and went 2 months ago. The doctor said I don't need the repeat QFT. I insisted and SURPRISE.. it can back negative.  In fact, very negative at 0.01. Not even on the border of indeterminate. The letter I received said highly unlikely I have latent TB.

You are the first person who has had a similar experience and addressed this with me.  I can't thank you enough. Doctors thought I was nuts pursuing this.

I am a highly skin sensitive/  allergic individual and can only assume that I reacted to an "innocent" component of the Mantoux serum.

I hope I don't require biologics, but I think it will be an available option for me now.

My usual Flagyl stopped working, but I am currently on 10 days of Amoxicillin/Clavulin and my pouch and anus are doing much better.

Thanks again Jan. Much appreciation. Stay safe and well. 

Gail

@GEB56 posted:

I was very interested in your reply Jan as I have questioned the positivity for many years. Here is the timeline. 1984 negative TB skin test. 1988 positive Mantoux skin test. I had just had a baby and a public health nurse thought it may be a false positive so I felt relieved. Although I worked in a health care setting for doctors, I never travelled; am a middle class Caucasian; no communal living or drug use.  (hard to understand where I could have contracted). 2003 went to work at a hospital and was retested with Mantoux...positive again. Infectious disease doctor said that since 15 years went by, I should just have periodic chest x-rays. I did and no signs of active TB. I worked for a rheumatologist from 1999 to 2015. In 2012, I asked for a QFT blood test as I was still unconvinced that I had latent TB. It was positive. Still, I was unconvinced. I investigated more a few years ago and found info that the particular lab in 2012 had significant false positive QFT results (lab error). More forrecently, I asked for a referral to a Toronto TB Clinic and went 2 months ago. The doctor said I don't need the repeat QFT. I insisted and SURPRISE.. it can back negative.  In fact, very negative at 0.01. Not even on the border of indeterminate. The letter I received said highly unlikely I have latent TB.

You are the first person who has had a similar experience and addressed this with me.  I can't thank you enough. Doctors thought I was nuts pursuing this.

I am a highly skin sensitive/  allergic individual and can only assume that I reacted to an "innocent" component of the Mantoux serum.

I hope I don't require biologics, but I think it will be an available option for me now.

My usual Flagyl stopped working, but I am currently on 10 days of Amoxicillin/Clavulin and my pouch and anus are doing much better.

Thanks again Jan. Much appreciation. Stay safe and well.

Gail

I like that you keep fighting for your pouch! You are pretty resilient! I would have given up by now and went back to ileostomy to be honest. Keep up the fight! You are strong

No problem, Gail. This is why we are here, to share our experiences so that the knowledge pool can grow. So many of us have unique cases, but not so unique that our “quirks” are not useful to others. In any event, it is nice to know you are not alone, or crazy!

Jan

Amen to that Jan.

I just had my pouchoscopy a few days ago and I asked my GI how many j-pouch patients she had. She said about 30, but that new patients were going down in numbers. The reason? There are fewer and fewer j-pouch surgeries performed now because of the variety and effectiveness of biologics. That is a good thing.

Jan

That is interesting Jan.