Kyle with his wife recently
What up, What up! How is life in the world of IBDers?
Hope you all are doing fantastic, I am well. Guess I better give a quick intro to myself before I get into what has been going on in my life. My name is Kyle. I am a 29 year old male. I am currently teaching 7th grade. I have an amazing wife that has been at my side through thick and thin for the past two and half years. I love Jesus. I thoroughly enjoyed this past years NCAA tournament. Oh, and I have Crohn’s disease.
I am currently MED-FREE, that’s right I said it, I am not taking any medications to treat my Crohns and things have been going very well. I am following the SCD, 6 months strong baby, and as of the last few weeks have just started adding raw food back into the diet. But definitely going super slow with everything. Not taking any chances on throwing the body off! But I had forgotten how good a nice crisp, cold apple tasted, my first one was like heaven in my mouth! : )
Anyways, wanted to ask my UC/Crohns family a quick quick question: Have you guys ever dealt with gut pain caused by scar tissue? I am not sure if that is what I am dealing with but it’s really the only thing I can point my finger to as the reason I am still dealing with tightness and cramps in my gut. I recently went and chatted with a naturopath and that is what she eluded to being the problem. I am taking fish oil, L-Glutamine, and doing Hot Castor Oil packs at night but nothing seems to relieve the tightness and/or pain. Am I alone in this? I have chatted with my GI about this and it seems that if I am not experiencing obvious “Crohn’s” symptoms than I am doing alright but this gut tightness is really hindering me on the day to day life.
As I said, I am not in pain, I am pretty sure I am not in a flare, but I just have the gut tightness/pain going on. Mainly right around the belly button area, but it does rotate from the left side primarily to the right side. Usually wakes me up in the morning and during the night I am getting up two to three times to use the bathroom (#1), Anyone else relate to me here?
If so, how long do things take to get healed up in there? I am not in any hurry, it would just be nice to know how long of timeline I should expect here, or if I need to get into my GI and ask a few more questions. I would love to get some feedback from you guys on what you have done to help with this and/or get rid of it. Get at me UC Family, Love you guys!
Current supplements: Probiotics, L-Glutamine, Fish Oil, Multivitamin, and Vitamin D (ALL SCD LEGAL) – Also take a 1/4 tsp of royal jelly each morning :)
Blessings,
Kyle
My name is Kyle. I am from the Evergreen State of Washington. I joined team UC in July of 2012. I am currently working in a school district seeking a full time teaching position. I also serve as a youth pastor in my local church and am sold out servant of Jesus Christ. I try to stay very active, current days it looks different, but I love all sports. I love playing basketball and running. I have an amazing wife, who I have been married to just over a year now, and let me tell you I married up! I would be willing to debate anyone that I got the cream of the crop : )
What up Kyle,
Way cool to see your face around here once again. Was getting ready to ask Bev to start up her helicopter and fly south of the border to WA and go on lookout for you guys:)
You’ve got a great question and once which I’m sure (myself included) most IBD’ers have asked themselves before. “Is this normal” is this a flare…something else, scar tissue…yadayada right?
I’m interested in what others say, but I’ve got some question for you?
Are you taking hard poops?
Are things formed the majority of the time?
Any urgency in terms of the bathroom for you?
Did you lose alot of weight from previous flares and if so have you gained any of it back? (Are you doing tons of physical activity because you’re feeling better now and maybe using your abdominals more than they are used to..?)
I guess my overall thinking is that stomach tightness (especially if its waking you up at night) for sure is an IBDish symptoms when things are active. But if you’re in remission, it’s not something that you should be dealing with forever. Maybe a tad when getting out of a flare, but not forever amigo.
Maybe some other readers have some good thoughts or ideas as to what’s going on too:).
best senor,
Adam
:)…Adam!
Have a KICK BUTT Memorial Day weekend my friend!!
Shall I helicopter you anywhere?
Kyle I have UC and have recently started the SCD diet. I as well have been dealing with similar pains mine mainly in the early morning. I’m hoping this will eventually go away.
Another annoying thing that’s been going on with me since the SCD diet is a heightened since of smell, which has been extremely annoying.
Car exhaust from surrounding cars at a stoplight with give me a soar throat…
Cigarette smoke is extra disgusting … Wondering if anyone’s else has had this happen??
Haven’t experienced anything like that since being on SCD :)
Nathan, during my last flare, which I’m just getting out of, my sense of smell was also heightened! It was almost like I was smelling things that weren’t there! So of course my sense of taste was also heightened. I couldn’t eat solids so I tried to get a morning smoothie down, almond milk and a banana, but sometimes it was hard because it tasted sickeningly sweet! I lost 10 pounds in a week! I’m better now and started craving anything protein and I’m not a meat eater. I’ve gained back 5 pounds.
Hi Kyle, I am not sure about pain from scar tissue, but my son who has pancolitis experienced abdominal pain a couple months ago. He did a stool test, which showed he was suffering from aeromonis bacteria and was prescribed Cipro, which cleared it. Also, as Crohns is proving to be a particular strain of bacteria, it could possibly be, that this bacteria is becoming stronger in your body and you may need to review your treatment/diet plan.
Definitely something I will mention to my GI at our visit next month! Thanks for taking the time to comment!
Mary, “Crohns is proving to be a particular strain of bacteria,”
That’s a new one. Where did you hear that from.
Kyle given you have Crohns, i don’t think your answer is best answered here.
As Crohns can cause strictures, fistulas and various other things that could cause pain/discomfort, just because the flare isnt presenting itself in the usual manner, doesnt mean that it isnt a flare.
You said you get up 3 times in the night, that doesn’t sound like remission to me?
Tom
Figure on page 6 tells you about increased and decreased bacteria in CD
http://download.cell.com/cell-host-microbe/pdf/PIIS1931312814000638.pdf?intermediate=true
The dominant species increased in CD were
Escherichia coli
Fusobacterium nucleatum
Haemophilus parainfluenzae
(Pasteurellaceae),
Veillonella parvula
Eikenella corrodens
(Neisseriaceae)
Gemella moribillum
.
The dominant species decreased in CD were
Bacteroides vulgatus
Bacteroides caccae
Bifidobacterium bifidum
Bifidobacterium longum
Bifidobacterium adolescentis
Bifidobacterium dentum
Blautiahansenii
Ruminococcus gnavus
Clostridium nexile,
Faecalibacterium prausnitzii
Ruminoccus torques
Clostridium bolteae
Eubacterium rectale
Roseburia intestinalis
Coprococcus comes
Hey Tom! Thanks for the reply, I am scheduled for a flex sig in the middle of June to check for any strictures. I currently have a seton placement for a fistula that occurred after an abyss infection in November.
Tom,
It is a growing belief amongst some Gastroenterologists that Crohns is caused by an infection.
Hello, can you Adam or can anybody help? I’m having a big problem with getting to the toilet on time. I am taking 2g of Pentasa twice a day, (morning and night) and Omeprazole 40mg daily.. and i take Humira every 2nd week. i was diagnosed with Chronic Ulcerative Colitis in August, 2010.. I’m under control of my disease its just we’ll say im walking to the shop. as soon as i get out of my apartment, i just think of having an accident, because i know when i have to go toilet i have to go i cant wait 30 seconds. its not in my head. (people would say its all in my head), and then bang i have an accident :( .. really need to sort it out:(cant have a proper life thinking like this all the time and feeling like this too:(
Thanks, Darren B.
Sorry to hear you are still struggling. I got a couple of questions : When you are using the rest room is it solid or do you have the D going on still? Have you noticed your urge is stronger when you eat certain foods or is it with anything, everyday? Let me know. I will do my best to help you out with what I know.
Kyle
Kyle!!
Med-free?! For reals?? That is so absolutely fantastic…after all you’ve been through. Way back, when you were posting all of your experiences with the remicade infusions, well, I was pulling for you…but deep in my heart I knew then, and know more than ever now, that the meds never work…
I am beyond thrilled for you, my friend. You have been through the wringer, and have done so with humor and courage…and always thinking of other UCers all along the way. You deserve this…heck, we all do.
Stay happy!!
:)
Isn’t is kinda cool how all of we ‘old time’ UCers eventually go natural???
It seems to happen to all of us, eventually:)
Hey Kyle…AWESOME!
I agree with Tom…you’ll have more info. soon, but wondering if the flex will go far enough for them to see vs. a colonoscopy?? If you’re going through all the trouble with the prep why not view it all??? I do get pain near my belly button, usually left side, often. My fill-in GI told me lots and lots of scarring and tons of twists and turns(actually said where I get my colonoscopies better machine for such a twisting and turning colon!! :-) ) I also find stretching helps a lot…laying on the floor and just stretching it out! Didn’t you start doing yoga? I think this is a specific ibd stretch.
Maybe Dede Cummings will catch this since she has similarities or search her name/site and post her a question. She recently posted on someone’s story.
Just my thoughts…keep on with the SCD…we are just healthier for it anyways. I never want to jinx it, but despite my second round of iritis(drops for that) still kickin’ it Med free 1 month shy of 3 years…so there is hope…always! :-)
Best, Shelly
Yey Shelly!! How very wonderful :)
Thanks Bev and you too despite our speed bumps! Guess you’ll use that helicopter to get over them now! :-) I can’t believe it has been almost three years. Time sure flies when you’re looking over your shoulder all the time for the UC Grimm Reaper! Not sure how the iritis decided to come back at almost exactly 2 years…guess that’s better than annually!
Happy weekend! :-)
Yes, there always seem to be speed bumps along the way!
They always pass, though….or should I say, we pass them:)
Hey Shelly! I am really trying to stay away from the colonoscopy, just because I have worked so hard to get the balance back right in my gut and it seems to be, for the most part healed up and I know the prep can just wreck havoc on my system. The prep for the flex sig is just a liquid diet the day prior, no go-go juice or anything :) I think my GI would just like to get a peek in there to see if there is any narrowing going on, if there is then we will take the necessary steps to figure out what to do about it I guess.
With the narrowing your GI saw, did he want to take any steps on things? What did he say he wanted to do about it? Or if it’s not causing any blockage do they just leave things they way they are?
Thanks!
Kyle
Hey Kyle…sounfpds good on the flex. Hopefully your pain is lessening. Don’t forget the stretches…they are really simple and help a lot.
The narrowing and scarring you just live with and hope for no probs. Can sometimes cause issues so you just keep track of all symptoms and if things aren’t right you’ll know to call your GI!
Good luck! Shelly
Hey Kyle.
I am happy to hear you are doing so well. I have u.c., so my experience may be different from yours. I am recovering from a flare that had me in the hospital over 2 years ago. I have been scd since then, and have dealt with tightness along the way. My experience is that it does get better and I would recomend to use that feeling as a tool to help guid you towards minor tweaks in diet, supplimentation, and lifestyle. Continue to pay close attention to what your body is telling you. I am at least partially grateful for my tightness and pain because I am now able to feel when I may need to use the bathroom in the not too distant future and act accordingly.
Best of luck to you and to all!
Can somebody give me any advice please??
I’m having a big problem with getting to the toilet on time. I am taking 2g of Pentasa twice a day, (morning and night) and Omeprazole 40mg daily.. and i take Humira every 2nd week. i was diagnosed with Chronic Ulcerative Colitis in August, 2010.. I’m under control of my disease its just we’ll say im walking to the shop. as soon as i get out of my apartment, i just think of having an accident, because i know when i have to go toilet i have to go i cant wait 30 seconds. its not in my head. (people would say its all in my head), and then bang i have an accident :( .. really need to sort it out:(cant have a proper life thinking like this all the time and feeling like this too:(
Thanks, Darren B.
Thanks for the reply Kyle! It is solid sometimes and Sometimes its D and sometimes its even water. No the urge is always the same, when i have to go toilet i have to go straight away i couldn’t hold it,. like i go shop on way home if i have to go id have an accident, i get really nervous when i have walk to meet my girlfriend because im not close by a restroom. and i just cant be coping with this i cant even look for a job:( just need something to help me:(
Darren – I don’t know if you have looked into the SC Diet but it has worked wonders for me and my Crohn’s disease and the symptoms it brings. Also, and I never recommend this but my GI put me and a dose of prednisone during my last flare in the fall of 2013, and even though it brings side effects galore it does do the trick when it comes to imflammation. Have you seen a GI about your symptoms? Do you have any type of diagnoses? That might be the next step for you getting into see a GI and letting him take a look at things for you. Hope things are improving for you!
Kyle