Poor Barbara....................... 

I recall Eric talking about the difference in one of his posts.  I have been looking for it but can't find it. I remember it had to do with some people thinking they are The same when they're  ot.

Posted by: Barbara

I recall Eric talking about the difference in one of his posts.  I have been looking for it but can't find it. I remember it had to do with some people thinking they are The same when they're  ot.

I have an article on IBD: https://www.veganostomy.ca/what-is-ibd/

And a parody 😂 :

https://www.veganostomy.ca/hitler-reacts-confusion-ibd-ibs-parody/

Thanks Eric, I hadn't seen that parody. My morning laugh. 

I sometime misspell Chrohns too. HA.

Posted by: Dona

I sometime misspell Chrohns too. HA.

You just did! hahahaha

*Hugs*

I find my empty out times have become longer since the first week or so. Oscar has calmed down and usually needs to be emptied first thing in the morning 7:00, maybe again  at 10:00, again at 1:00 (after lunch), 5:00 and 8:00. If I wake in the night I empty again just to be on the safe side but it's not always necessary. Just providing this as info for you since I know Colostomies are different compared to Ilieos.

My diagnosis started as IBS then became IBD then Crohns and recently Crohns Colitis indicating the majority of issues lie in my large intestine.

Eric, I read your IBS and saw the pictures, YEs, You suffered more than anyone I know here!! Glad your back in the swing of things at last!! 

My question is: when you finally gained back your weight, did your legs etc. fill out nicely? Did u have to exercise different parts of your body slowly? ITs been 3 years for me and I think it is time for things to turn around for me!! Getting axious and rather upset down here in Ct.!

Hi I am new but I have been lurking for a while.  I had an elective ileostomy - however it was not really elective as like you I had nowhere to go.  My bowel just stopped, after years of getting slower and slower.  

The autoimmune issue is a complicated one.  I have Lupus,  Sjogrens, and RA, so our experience may be similar. The inflamed bowel will be producing toxins which would currently be exacerbating any other health problems you have, and whuch may cease if you proceed with a ileostomy.

I found some problems with an ileostomy: transit times changes, and malabsorption especially of medication (already a minor problem, now a major one).  The large bowel has an important role in the manufacture of vitamins etc, and this would cease - but perhaps with IBS/IBD it may have already stopped working for you.

Overall I am happy with my decision to go to an ileostomy.  The problems I have with it are easier to manage than what I had prior to surgery.  

 Listing the pros and cons of the ileostomy would probably help you - however if you are in pain, that is a very good reason to proceed on its own.

Jimali

Posted by: VeganOstomy

Posted by: Dona

I sometime misspell Chrohns too. HA.

You just did! hahahaha

Self referential joke!

Dona, the surgeon described diverticulitis to me thusly: ( I have not researched this just taking his word as he ought to know. ) there are places where things like capillaries penetrate the colon. The "holes" where this occurs are called diverticuli.  When things, like seeds etc., get stuck in the diverticuli they can ferment and cause inflammation.  That inflammation is very painful (some of the worst pain I have ever experienced). There is a danger of those inflamed places rupturing allowing the colon contents to escape.  The usual treatment is IV antibiotics to calm it down.  At the end of December 2016 it flared on me. After 3 weeks of the antibiotics things calmed down.  When the disease is active it is called diverticulitis when they care calmed down it is called diverticulosis  Right After the 1st bout of diverticulitis, I was admitted to the hospital in adrenal failure, the hospitalist "doctor" (term used very oosley) had taken me off prednisone cold turkey -- a real no no,but I was too far out of it to know he had done it.  I didn't even get out of the hospital from that when diverticulitis reared its ugly head again.  This time there was an imminent danger of rupture so they did  emergency surgery on me and hence Stella, my little rose bud baby was born.  So the way I get it, diverticulitis is just yet another symptom of a really cranky inflammed bowel.

Eric, you know so much more than I do about this stuff, is that description reasonably accurate? And remember I was drugged pretty hard when the surgeon was explaining it to me, and I didn't have my extra ears (my dear friend Liz who is a retired nurse and who goes to appointments with me) with me. I was in the recovery room.

Thanks for the explanation. I really had no idea. I have a friend with a mild case of it and they treat her with antibiotics ( seems to quiet down).  There seems no end to the things that can mess up our innards!  I had a appendectomy when I was young, seems like the pain is similar, but they can just remove that one bad bit.  When you got 'Stella' they must have removed the parts with the diverticuli that were inflamed, right?

And I remember the cold turkey from prednisone you mentioned once before...a horror! Amazing any doctor would do that  like you say, a loosly used term for some.

Hope you are feeling better today.

Posted by: Barbara

When the disease is active it is called diverticulitis when they care calmed down it is called diverticulosis  Right After the 1st bout of diverticulitis, I was admitted to the hospital in adrenal failure, the hospitalist "doctor" (term used very oosley) had taken me off prednisone cold turkey -- a real no no,but I was too far out of it to know he had done it. 

Eric, you know so much more than I do about this stuff, is that description reasonably accurate? And remember I was drugged pretty hard when the surgeon was explaining it to me, and I didn't have my extra ears (my dear friend Liz who is a retired nurse and who goes to appointments with me) with me. I was in the recovery room.

Diverticulosis is when you have small pockets forming in the lining of your colon. That can become diverticulitis if infection results, and that can be pretty severe.

It's terrible that you were taken off prednisone without tapering, but I don't know what the protocol is when a patient has adrenal failure, so perhaps it was the best choice. 

It was the going off prednisone that caused the adrenal failure. When you have been on that horrid drug for a long time (for me about 6 years) your adrenal system stops making certain steroids necessary for life as they are supplied by the prednisone. So no prednisone, no steroids and you die.  Lucky for me one of the docs figured it out and pumped me full of steroids to bring me around. That was probably the closest I have come to dying. 

Yes, the idea of the surgery was to remove the bad bits, but it appears there is a lot of the "bad" that they missed and I just want this horrible crap (nope, no pun intended) out of my body and away from me.  For me mentally it feels like there is a horrid terrorist lurking in my body just waiting to pounce on me and knock me flat. And it feels bigger, and darker and stronger than me.  I am a control freak with no control. I used to feel that things pertaining to my health were reasonably well ordered but now chaos reigns.

Thanks for clarifying that.

I really get the IN CONTROL part of this whole thing.

When I was sick I felt just like you do.  Like there was nothing I could do to help myself. Now at least , if I get a leak its pretty much my fault. And, I can correct those things going forward.

So good luck in minimizing the out of control parts. Chaos is bad especially in your body or mind.

Its not YOUR fault Dona, IT happens.. been 3 years now and I had to make so many adjustments etc. In the beginning it was horrible!! I read and re-read and then read my notes I took also-  All text book-then I realized I am me.. ME, Myself and I.. I see Dona, that your stillnew after your last surgery--your body is still adjusting..your mind is still adjusting..ANY surgery-even my busted full baldder last year,-all new adjustments AGAIN !!!!!!   We went through shock mentaly - I was so weak and shocked, that I just said to myself-work with the  mind first- then the body will follow. and it did-took a heck of time..and some anti-depressants finaly-, but I can enjoy the lounge here-where before, I wouldn't go there.. now I am Marcie again. and the leaks are far apart- the egg roll got me last week-kinda knew that would be coming-so was ready for the big boom.. but enjoyed that egg roll!!!! :-)

Your doing good Dona...... and I hope this continues.. Happy holidays...... going to join us at  the lounge for some R & R ?