My first doctor said that I had severe Pancolitis because every little bit of my colon was inflamed, but nowhere else. The Mayo doctor said that he was sure it would turn out to be Crohn's and I had granulomas on biopsy so apparently that settled it. Does anyone else have Crohn's in their entire colon? If so, how has your disease progressed? Thanks, Tina
Pancolitis and Crohn's
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I almost did not want to reply, because you don't want to hear my answer. I recently had my colon removed. I would just say, do all you can to reduce the inflamation. Years and years on inflamation leads to bad things like dysplasia.
I have crohn's for 23 years and it seemed to affect most of my colon with skip areas. Eventually, I developed a psuedo polyp mass, and later on dysplasia developed.
Good luck - mine is just one bad case. Hopfully yours can be controlled with medication.
I have crohn's for 23 years and it seemed to affect most of my colon with skip areas. Eventually, I developed a psuedo polyp mass, and later on dysplasia developed.
Good luck - mine is just one bad case. Hopfully yours can be controlled with medication.
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Hi Tina - when I had my colonoscopy in April, my specialist said that I had pancolitis - whole colon was inflamed. But biopsy results came back with Crohn's due to the granulomas...my gastro now calls it Crohn's Colitis which I assume is a bit of both...yay for us!
Anyway, I hope you feel better soon - I am on Prednisone which is meant to help with the inflammation but it is causing other issues for me at the moment - I should be off it in the next week or so...hopefully! My GP wants me off it as soon as possible due to an increase in white blood cells so will see what the gastro doc says later this week! I'm also on Mezavant which is Mesalamine which I think is the same/similar to Lialda??
I'm still in the early stages of working out what will work or not work, so can't tell you exactly how it is progressing right now. Sorry.
Anyway, I hope you feel better soon - I am on Prednisone which is meant to help with the inflammation but it is causing other issues for me at the moment - I should be off it in the next week or so...hopefully! My GP wants me off it as soon as possible due to an increase in white blood cells so will see what the gastro doc says later this week! I'm also on Mezavant which is Mesalamine which I think is the same/similar to Lialda??
I'm still in the early stages of working out what will work or not work, so can't tell you exactly how it is progressing right now. Sorry.
Hi Tina,
I have suffered from inflammation on and off for quite a few years. It would come on every couple of weeks for a day or 2 and then subside. However, I've only had about 2 small flareups (inflammation which only lasted a few hours) in the last 6 months since I started some new therapies. I'm not sure which one has helped more - but here are the 2 things I've been doing.
1: I've been seeing a naturopath about once every 1-2 weeks who does a muscle test for allergies and treats those - and then does about 45 minutes of healing touch. This is energy work, and I'm not really sure I believe in it or not - but if anything else it does totally relax you during that time, which is great for stress relief (which I think is a HUGE factor in our disease).
2: I see a massage therapist who works on my stomach. She does a technique called Dhyana massage. It's not too common yet - but I think it's growing. Basically it's working with the fascia in your abdomen and with scar tissue. I had a temp ileostomy a couple years ago so I have quite a bit of scar tissue to work out. I've found that her massage therapy has helped me greatly with my motion and stomach troubles. The technique is something you can do on your own as well. It's painful - but worth it.
Anyways - everyone is different, so I'm not sure if you would benefit the same way, but I know the last 6 months have been AMAZING compared to how I was feeling before. My bowels have also improved and I don't have the urgency I used to. I also am taking digestive supplements which have helped a lot as well. I've been on Pentasa since my surgeries for inflammation - but I don't suffer any side effects from that luckily.
Hope that helps a little. I know some people are tentative to use natural healing techniques - but there is very little risk involved with them. So - if you are able to afford it, then what's the harm? Only good can come of it. Feel free to message me if you want to talk further on this.
Julie
I have suffered from inflammation on and off for quite a few years. It would come on every couple of weeks for a day or 2 and then subside. However, I've only had about 2 small flareups (inflammation which only lasted a few hours) in the last 6 months since I started some new therapies. I'm not sure which one has helped more - but here are the 2 things I've been doing.
1: I've been seeing a naturopath about once every 1-2 weeks who does a muscle test for allergies and treats those - and then does about 45 minutes of healing touch. This is energy work, and I'm not really sure I believe in it or not - but if anything else it does totally relax you during that time, which is great for stress relief (which I think is a HUGE factor in our disease).
2: I see a massage therapist who works on my stomach. She does a technique called Dhyana massage. It's not too common yet - but I think it's growing. Basically it's working with the fascia in your abdomen and with scar tissue. I had a temp ileostomy a couple years ago so I have quite a bit of scar tissue to work out. I've found that her massage therapy has helped me greatly with my motion and stomach troubles. The technique is something you can do on your own as well. It's painful - but worth it.
Anyways - everyone is different, so I'm not sure if you would benefit the same way, but I know the last 6 months have been AMAZING compared to how I was feeling before. My bowels have also improved and I don't have the urgency I used to. I also am taking digestive supplements which have helped a lot as well. I've been on Pentasa since my surgeries for inflammation - but I don't suffer any side effects from that luckily.
Hope that helps a little. I know some people are tentative to use natural healing techniques - but there is very little risk involved with them. So - if you are able to afford it, then what's the harm? Only good can come of it. Feel free to message me if you want to talk further on this.
Julie
Hi Vicky. That's what my doctor call it also: Crohn's Colitis. I wonder if the pill had anything to do with it in my case. I had never taken it before and I took it for six months before my diagnosis. Prior to that, I had never had any bowel issues. I read a study that when the pill is a Crohn's trigger it almost always appears in the colon. There are so many unknowns!
Tina
Tina
Juls, I have allergies, so that testing sounds good to me. As for the energy work, I would seriously try voodoo if there was any chance that it would help and since a lot of illness involves the mind/body connection, why not? I will have to look into that type of massage. I don't have any scar tissue yet, but it might help. Thank you so much for the info.
Tina
Tina
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Tina,
You mentioned just being on Lialda. Depending on your symtoms and level of inflamation, that could be a weak response. I would say, if you noticed it helped your symtoms, and your next colonoscopy showed improvement, it is working.
If you're still having symptoms after a few weeks of Lialda, you may want something stronger like Humira, or MP6. These are powerful drugs, but Crohns can be a nasty disease.
I tried LDN in the past, did not work for me, but many people report good results. There is a forum here on it and plenty on info on the internet.
I also tried the SCD, Specific Carbohydrate Diet. Again, plenty on info out there. Did not work for me, but I was probably too far gone by the time I tried these. Plus, I hate yogurt, which is a staple on the SCD. Otherwise, I followed this very difficult diet for about 3 months, then had a colonoscopy still showing bad inflamation. Maybe not enough time? Who knows.
You mentioned just being on Lialda. Depending on your symtoms and level of inflamation, that could be a weak response. I would say, if you noticed it helped your symtoms, and your next colonoscopy showed improvement, it is working.
If you're still having symptoms after a few weeks of Lialda, you may want something stronger like Humira, or MP6. These are powerful drugs, but Crohns can be a nasty disease.
I tried LDN in the past, did not work for me, but many people report good results. There is a forum here on it and plenty on info on the internet.
I also tried the SCD, Specific Carbohydrate Diet. Again, plenty on info out there. Did not work for me, but I was probably too far gone by the time I tried these. Plus, I hate yogurt, which is a staple on the SCD. Otherwise, I followed this very difficult diet for about 3 months, then had a colonoscopy still showing bad inflamation. Maybe not enough time? Who knows.
Joe, I tried SCD also. I was hoping it would be my magic bullet and I know it works for many, but my symptoms did not improve and I just felt too weak and miserable to work full time while doing it. I am still having about 3 loose, but formed stools daily on the Lialda, but no other symptoms. My doctor said that he thought the side effects of stronger medications were not indicated for such minor symptoms. The Lialda originally got me down to 2 firm stools a day, but a few months ago I was hospitalized with a severe flu and given lots of antibiotics and I haven't been able to get back to really good since. They gave me a CT with contrast at the hospital when I was sick and it came back negative for any signs of inflammation. That was before I had to drink the contrast twice because of a scheduling screw up and before the massive doses of antibiotics. I've only had the one colonoscopy 7 months ago and I'm dreading the next one because the prep really sets me back.
I hope you will be all better for good now since you've had this latest surgery. How do you feel?
I hope you will be all better for good now since you've had this latest surgery. How do you feel?
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Thanks - I feel great now. I even started training for the CCFA half marathon in Vegas. That would have been a laughable dream during the last 2 years before my surgery. It'a big price to pay to feel better, but there are worse things in life!
I just hope my Crohns doesn't decide to pop up again (sm bowel) down the road.
Well, it does sound like you're pretty well controlled right now, but the next colonsocopy tells all.
I just hope my Crohns doesn't decide to pop up again (sm bowel) down the road.
Well, it does sound like you're pretty well controlled right now, but the next colonsocopy tells all.
