Trying to get life back, Cankers

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Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/4/2010 10:25 PM (GMT -6)   
So tomorrow I do my first triathlon in 2 years. Had surgery last Aug. 4th 09 with permanent iliostomy. Was doing quite well and started training others and then doing more working out for me. I signed up for this race 3 months ago and thought i'd have time to train and be even better by June.

3 weeks ago I got really sick. Canker sores and throat so sore I couldn't swallow. Chills and stomach ache that made me not want to even eat. Dr. said wait and see it's probably just a virus. Then ears started hurting and runny with an eye swelling up to look just lovely. Finally he gave me antibiotics and the eye and ear have pretty much cleared up. I think the antibiotics are making me sick but will finish then anyway.

Throat and mouth sores are starting to get better but it doesn't seem like the antibiotics are the help. was wondering if that is the new flare for me since I have no bowel to make me feel horrible. How can you even tell if you have diarrhea? my output is usually very liquid maybe a little more lately.

Wondering if worrying about this race and some other demands are getting to me. I never feel like I get enough sleep but have so many responsibilities it's hard to just get off the crazy ride, now that I crawled back on after surgery. I truly don't know how I get myself into these messes.

Sort of afraid the race will make me sick by hurting my immune system. Weather is raining and cold which is always hard for me, but I paid too much to not do it. Hate to waste money. I'm not planning to kill myself off trying too hard but just getting ready is making me nervous. I do have some of my life back from the surgery but it's still not roses. I know it saved my life and I am grateful for that. Quality just doesn't seem the same though.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/4/2010 10:43 PM (GMT -6)   
try it, and you can also quit if you start to feel too bad!
Maybe take some immodium beforehand, and have some crackers and coke, to settle your stomach a bit.
I dont know if hte canker sores are in your mouth or just your throat, but there is this stuff called
cur-a-sore, its kind of hard to find, but it knocks fever blisters-canker sores in the mouth out fast!
It says not to put it in yoru mouth,but i just put a little on a qtip and put it on the sore for a minute, but it does burn like fire and tastes horrible, lol. But it works, fast!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/5/2010 12:37 PM (GMT -6)   
Those sores could be your Crohn's acting up...did you talk to your GI or just your family doc? If it wasn't your GI, I'd suggest calling them to get their opinion, and go from there. You may need maintenance meds for your Crohn's.

I hope you were feeling okay to race...remember you are short of a year from your surgery and most docs tell you to expect to 'feel' more like yourself after that time.

Let us know how things went!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/5/2010 8:01 PM (GMT -6)   
Ohio Glad to hear your opinion. really wasn't sure what was happening. I did get an appointment with the GI for June 27th. I will be better by then but i guess I will have to go on something. Problem is nothing worked that we tried except pregnisone(?) and I sure don't want that!! The only one I haven't ever tried is Humira? so Guess I'll see what the menue has now.

The race was Great!! I got in the water and felt fine. It was in a pool and had to do 20 laps which is not too far. Didn't want to push my breathing too hard but was steady. Then I got out and went on my bike. Only 15 Km so not that far either (compared to what i Used to do). The 20mph crosswind wasn't pretty but everyone had the same challenge. I tried not to let my knees hurt (that's my careful) so I would still have power to run the 5 km. The run was great, I even passed a few people. I have no idea yet what my time was because it wasn't posted when I left to ride my bike part way home to get more training in for the day. Can feel my thighs like I worked them but so far not too stiff. That is good sign for me. Immune system over worked when I have lots of lactic acid in my muscles after any workouts.

So today I had a bit of the old life back and it was so fun. I felt alive and happy and thankful.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/6/2010 7:32 PM (GMT -6)   
Hi Trigirl,

Just wanted to say that about a year after getting my ileostomy, I started getting TERRIBLE canker sores (much like the ones you described). I told my GI I thought it was Crohn's in my mouth (I could barely eat or brush my teeth it hurt so bad), but he disagreed and thought I had acid reflux (?!?!) so he put me on antacids. They didn't help and I went back. He referred me to an ENT, who checked them out and said he thought they were just really bad canker sores, and suggested I "de-stress."

I finally went back to GI and demanded I get some medicine for a Crohn's flare up, since my mouth was still killing me and I was sure it was my Crohn's. I went on Humira and a low dose of pred, and lo and behold, they vanished in less than 2 weeks!

GI then agreed that it must have been Crohn's in my mouth. Ever since then (this was over a year ago), he seems to take what I say about what I think is going on a bit more seriously, thankfully. I mean, after having Crohn's for 15 years, I have gotten really in tune with knowing what is going on with my body.

I am so impressed at how active you are! I need to get back into the gym regularly!

PS (if you do end up on Humira) I really like being on Humira; I have no side effects and it is really quick and easy to give yourself the shot! Also, the drug company that makes Humira will help pay for your co-pay every month (called the Humira Protection Plan)--I now only pay 5 bucks a month for Humira instead of $30.

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/6/2010 7:45 PM (GMT -6)   
Thanks Summerstorm. I tried alum. Is it the same kind of thing? It was horrible and worked a little. Will try anything for some relief.

LitttleE I have a Dr's appointment so maybe this will all get fixed. No side effects from the Humira? about the gym...Maybe just going on walks or bike rides could get you going in the nice summer weather. I do teach at a nice gym but Love to be outside and enjoy the benefits of my work in the winter.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/6/2010 8:02 PM (GMT -6)   
Way to go, Trigirl! :-)

Erin,
I'm sorry to hear that the Crohn's flared up in your mouth, but I'm glad that the Humira is working to keep it in remission. Did you ever have it there before surgery? At least you have the summer off school, so you can relax.

Take care,
Cece
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/6/2010 9:02 PM (GMT -6)   
i dont know what alum is, im sorry
if i had a bottle of it i would tell you what it has in it. but i gave my bottle away and havent gotten a new one yet.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/7/2010 7:11 AM (GMT -6)   
My dentist prescribed me a "paste" that I could apply inside of my mouth (might be hard for your throat). Can you try steroids? I know he mentioned a pill I could take if it got worse. My regular physician would only prescribe the "magic wash."
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/7/2010 7:36 AM (GMT -6)   
Trigirl~glad it was a good race!!!! I have recently started focusing on a 1/2 marathon...I have a year to get into shape:) and have really been enjoying adding time to my running each week!! It's amazing:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/8/2010 7:01 PM (GMT -6)   
Cecilia,

You are so sweet to remember that I am a teacher :) since I haven't been posting too often this year.

I did have a small bit of Crohn's in my mouth once years ago (which I mentioned to GI) and that is why I thought it was back again. :(

I really do feel so much better in the summer when I am off--school is wonderful and I love my job, but stressful a lot of the time. Today was actually our last day with the kids! Now I just have in-service days with the other teachers.

Hope you are having good weather down south! People are just starting to open their pools in Pittsburgh.

:) Erin

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/11/2010 12:12 AM (GMT -6)   
OHIO76- glad to hear you are getting the run bug. I too would like to do a 1/2 marathon again. I used to do them all the time but now It is taking a while to build up. I can walk the distance no problem, but running it all is another thing. I find my immune system isn't always happy about my run choices. i just love being outside and free to move. Sun makes it even more wonderful. Hope we get some of that soon. been quite the cold spring.

How's your neck of the woods for running weather and terrain?
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/11/2010 5:11 AM (GMT -6)   
Here in Ohio it's either been HUMID and HOT or COLD and RAINY!!! But I'm not a 'fair weather' runner...I went out in the rain (not drizzle!) Wednesday and got 3 miles in:)

Yesterday I did an hour of kayaking, even though it was too windy, it felt so good! Like you said, it's about being outside:)

Hang in there! To be honest, I am 2.5 years post proctocolectomy (ileo for 8 years before that) and for the first 1.5 years I couldn't run, only walk:( My insides just didn't like it! Thankfully, I tried one more time over the winter, and they said OK!! Most people will tell you that it takes ONE FULL YEAR for your body to recover from the trauma of disease/surgery. You've already accomplished so much...I know you'd like more...but give it a little time:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

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