New to forum...and to Crohns. Lots of questions...

[kshel33]

Hi all.
After about a year of lower stomach pain, I was recently diagnosed with Crohns. And first off, I'd just like to say that this sucks! I think that Crohns is a stupid and embarrassing disease, and I don't want it anymore! I'm still living in the dream world where this will soon pass...I mean, this cannot be my reality. Ok, now that my little tantrum is out of the way, here goes...

Let me just say up front, that I know very little about this disease/terminology/meds/etc. My doctor has given me no information other than the diagnosis, so I'm kind of floundering around in the dark alone...hence my desire to join this forum! Ok, so my doc has put me on Apriso, and I just finished my first bout with steroids (Entecort). Honestly, I can't tell if the meds help at all, but I'm doing as I'm told and continuing to take them. I still have severe stomach pain, but only when I eat solid food. My doc seems to think that my inflammation has gone down, and that this pain is being caused by built-up scar tissue in my colon. So his ideas for solving this were: a) colonoscopy where he essentially stretches out the scar tissue or b) surgery to remove that part of the colon. Needless to say, I had a flat out panic attack/tantrum in his office. First of all I've never had any kind of surgical procedure in my 27 yrs, much less even taken tylenol for a headache. So I'm freaking out!!
I'm currently on an all liquid diet, per my dietician's advice, with the intent to start a low residue diet when I'm pain free...which is likely to be never. Or so it feels anyway. ugh.

So my questions are (for starters anyway):
1) Has anyone else ever had this scar tissue stretching thing?? Is it common or is my doc just gung-ho on making me drink that nasty stuff again?
2) Are there risks involved with the stretching thing? I seriously have no clue about it...
3) Are there any more natural options before I let my doc invade again?
4) Am I crazy for wanting to try everything possible before resorting to medical procedures??

Any and all advice will be greatly appreciated!
Thanks for reading my rant

 

[Trysha]

Hello Kshel----------- and welcome to the forum.
It is natural to feel a bit panicky with the diagnosis of crohns.
There are many approaches to treatment and there is a section about this on the forum pages that you might find helpful
I know that part of my colon has thickened due to crohns but no treatment has yet been advised.I am hoping it might stretch back--but then pigs might fly!
A colonoscopy is preferable to surgery in my humble opinion but I don't know how the
colon will be stretched, possible by air insufflation----which is a whole lot better than surgery.
Of course it would be so much nicer not to have to face any of this but then that is not reality.
We have to level with the diagnosis ( I am still struggling to do this after a very lengthy time) and choose which path is best from what is offered by specialists.
There is no cut and dried answer to crohns and it does differ from one crohnie to another.
I don't know how common tissue stretching is but there's bound to be someone along soon who will know.
Other natural options again I would not know but if tissue has been altered by inflammation and infection repeatedly I would think there are not many options.
I think medical procedures are preferable to surgical ones where the option exists.
Feel better soon
Hugs and best wishes
Trysha.

 

[ksiwek81]

Welcome to the forum. I am sorry that you are having to deal with because Crohn's disease can be an embarassing and literall a pain in the ass (LOL). The stretching of certain parts of your colon may also me referred to as dilation. I have had an area in my duodenum dilated about three times, and it helps with widening the narrowed/inflammed areas caused by Crohn's. I can say that it did relieve some of my pain. By all means, go ahead and have the colonoscopy. I put off having mine done for years, and I can't help but to second guess myself on whether or not it could have prevented me from having an Ileostomy. As for the complications in stretching, My dr said that there was about a 1% chance of perforation. I totally understand you not wanting to undergo any medical procedures, but also keep in mind that without them, monitoring your disease can be diffucult. Having regular colonoscopies will allow your dr to see if the current treatment that you are on is actually working. I really do not know of any natural options for treatment. Also keep in mind that once your flare is under control, you will experience periods of remission and there may be times that you forget that you even have Crohn's. Good Luck.

 

[David]

Greetings and welcome to the forum, I'm so glad you joined Various things:

1. I suggest you start by giving this thread a read. I think it might help you a little

2. There's nothing wrong with not knowing the terminology or much else about this disease as you're recently diagnosed. However, I strongly suggest changing that. Educate the heck out of yourself regarding this disease. Yes, some of what you learn may be a little scary, but you are going to need to make sure you're getting the care you deserve. As such, you need to educate yourself so you can advocate for yourself. We're here to help you with that process As a million questions if you need to, we'll answer them to the best of our ability.

3. That scar tissue that is causing narrowing of your intestines is called a [wiki]stricture[/wiki]. Sometimes you'll see it referred to as a stenosis. Sometimes they don't cause any problems and are asymptomatic, other times they can lead to serious complications.

4. The "stretching" procedure would be balloon dilation. Here are some hard numbers regarding how well the procedure works: http://journals.lww.com/eurojgh/Abstract/2003/05000/Colonoscopic_balloon_dilation_of_Crohn_s.5.aspx -- if you need help understanding any of that, we're happy to help. Unfortunately, I know of no natural means to breakup or dissipate scar tissue

5. IF you end up needing surgery, you may want to find out if you're a candidate for [wiki]strictureplasty[/wiki] rather than resection.

We're here for you.

*hugs*