Boyfriend with UC.. Odd man out?

So my boyfriend is 27, and was disagnosed with ulcerative colitis at the end of October 2014. And I've done a ton of forum stalking and all that Google-ing fun stuff.. And I have yet to see anyone that has had similar experiences as us..

So my boyfriend was admitted from the Emergency Room into the hospital at the end of October. He had toxic megacolon, and if we had waited 12 hours more, his colon would have ruptured and he would have gone septic. Mind you, he never had any major indicators before..Minor bouts of loose stool, but nothing he wasn't able to write off as an upset stomach. He somehow made it out of the hospital with his colon still in tact, which seems to be very rare with toxic megacolon.. he is currently on Lialda, Humira, folic acid, vitamin d-3, and we just removed methotrexate from his medication regimen due to liver damage.

We cut out red meat, and whole grains. But that's about it. And he hasn't had any issues with his diet, or lack there of. It makes me think that diet isn't always a solution in these cases. UC is a tricky ****er, and everone has different experiences.. His just seems so calm in comparison to the severity of his first and only flare thusfar. Fine with me, just harder to track symptoms if there are none, let alone figuring out which meds are working and which aren't.

Also, he has been feeling better with tobacco use. I've read various things for and against tobacco use with UC, and once again, I feel it's an individual thing. Anything that helps can't be all bad, right? And yes, I know tobacco isn't good for your body, but neither is being pumped full of medications that have side effects like UC drugs do.


Anyone else new to this UC game?
I'm just trying to continue my support and gain some insight to everyone's experiences.

It's odd, toxic megacolon usually means removal of the colon. Any details on how he kept his?

Yes... I found this a little strange as well, so I would like to what they are doing to prevent further complications.

Usually, TM is proceeded by severe and drastic UC symptoms or caused by a reaction to a medication (immodium is one).

He is certainly the odd man out as the thread title would suggest. This would be a pretty rare UC case, as he exhibited no prior symptoms to toxic megacolon.

Here's my take on his symptoms: being severely constipated is harder to track than diarrhea-type and bleeding UC. My UC and (pre-UC) have been C-dominant after years of switching between C and D and a little IBS thrown in too.

When constipation starts it actually feels great, quiet bowel and no problems. Then after a few days not so good anymore until I do everything I can to get things moving again.

So everyone has different symptoms, different meds and different ways of getting their colon to co-operate. Diet made a huge difference for me, making the inflammation go away that made my bowel so poorly functioning. It's still not 100% but eating the right foods keeps constipation lower (not eliminated entirely).

When a gut is wounded it cannot process food the same way a healthy gut can. If Rx meds work for him then yay, they did little for me until diet kicked in the majority of help.

Keep trying Rx, look into eliminating fiber to allow his gut to heal a bit. Keep an open mind about everything that does not cause potential harm.

Post Edited (imagardener2) : 2/9/2015 5:36:10 PM (GMT-7)

I genuinely don't know how he got out with his colon.. He has to have someone looking out for him, that's for darn sure. His stomach was distended to the size of like..a 9 month preggo lady. He had a tube jammed down his nose, to his stomach that pumped the backed up waste and gas for about three days. When they did the colonoscopy they couldn't even get in because of the inflammation. He had the tube, and was pumped full of IV steroids, fluids, and potassium for seven of the eight days. He was on liquid restrictions and wasn't even allowed ice chips for three days. It was really ****ing bad. And he got out of it..And hasn't had any problems since. It's just a matter of finding what meds work now..Which is a ****ing beezyyy.

Hey Jenny Linc again...Hope you got your seat belt on....here we go...declared uc to be a bug..tried a hundred and one foods to see what we could eat and built up a pantry of food to eat..now since we declared the uc to be a bug we decided we were going to war against the bug and to do this we looked at uc stories to find every thing the bug hates and we did that...the bug hates the sun so go out into the sun,,it hates vitamin d it hates you to eat the right food...so hey eat the right food...it likes you to eat junk food slop food yuk food and anything cooked forty seven times and reheated 36times...so you must stop eating all the garbage food...every thing wrong in food it likes you to eat because that's how the human body maintains the environment highly suitable for uc to grow and survive...look at food jenny and see what is in it...whatever the bug likes you don't do or eat or think right and every thing the bug hates in food activity environment or thought you go and do right...Its war right so you put the boot into the bug slowly and surely..Many conditons allow the bug to thrive and survive so you gotta do the opposite of this...The bug hates you to exercise it hates you to eat healhy it hates you to be happy so try really hard to do all this. My loved one participated in a marathon about a month ago...so isn't that dandy...Everything I do or say clashes heavily with modern medical and other opinion on uc so I try not to say too much...your not allowed to say its a bug...oops did I just say it was a bug..runaway immune system is the way of course...Loved on had Tyland food when on company outing and uc stopped in two days...none for three weeks until back home..uc styarts again..Loved one actually went to Tyland for holiday uc stopped again for three weeks...perhaps immune system like Tyland ot Tyland food Jenny...right....

Hey Jenny Linc again sorry girl forgot ....we also went glutten free wheaton free dairy free lactose free...we just did this really only because other uc people did it and hinted at mild success..You just use a food product that is the same but without that in them..we also went dairy free plus we threw out a whole lot of other food too...food is a real trial to get right Jenny you will see all uc people are bit different like this...Actually I always think you might be only about 95 percent free because its just too hard to be so strict like this you really don't know whats in a food product sometimes. Always remember with uc as you deal with it its twenty steps forward and seems like thirty steps back but you keep going right,, and when you go on a uc site like this its a bit like a horse race but instead os ten horses at the star there is about 50 thousand chargin round the course all different and all with their own opinions...so never never argue with anyone or chastise anyone read what they say and pick and cvhoose what suits you....and hey when you down near a cake shop you slip in there and eat a small cake like we do when we are supposed to be wheten free.. you laugh but pay for it later at home. Look Jenny I could write all day about what we did against uc but remember it always slow and steady as you go, all uc people are little bit different, ten step forwars and five back go on the net to many sites and you will find what to do

LOL