Looking for info/experiences Crohn's Colitis

Hi Plucky. Try googling colonic Crohn's - you will get more relevant results that way. If you google Crohn's colitis it just seems to come up with endless Crohn's & Colitis links, which isn't what you're after.

From the point of view of having surgery, a change of diagnosis absolutely sucks: I'm not going to pretend otherwise. You almost certainly will not be eligible for a j-pouch. That said, most folks who have CC and a permanent ileostomy end up doing well. I had a colectomy in 2013 and had an ileostomy for two years. If I had known what I know now about reversal, I'm pretty sure I would have just stayed with the ileostomy. Anyway, my surgeon had kept my rectum and some of my sigmoid colon in and joined my small bowel up to that: the Crohn's came back almost straight away. I'm on every med for Crohn's going, but nothing is boshing it on the head. I will probably eventually end up having my rectum removed, butt sewn up, and stoma for life.

Chances of your disease spreading beyond the colon are small if you've had 'UC'' since 2004 and have never had any sign of small bowel disease for all that time.

NCOT and CCPG,
Thank you ladies for responding!

NCOT I'm disappointed your reversal isn't working out--I take it you plan to have surgery again? Your suggestion to google colonic colitis was very helpful and brought up alot more results--thank you.

CCPG it is encouraging that you feel good and are not on any meds--that has always been my goal--to live life unlimited by the disease. Congrats and I am so happy things are working out for you!

My IBD Specialist is a darn liar because she said "Don't worry about the diagnosis because it doesn't change the way we treat you--we still treat you the same". However, taking the j pouch off the table is a BFD. I'm supposed to see a colorectal surgeon on Tuesday (day after tomorrow) and I will have to ask what he thinks.

Plucky - Glad it helped! If you want to bring up a couple of old papers from the 1960s, try googling granulomatous colitis ;p

I'm not ready to have surgery again just yet. I'll probably be able to try Stelara next year. If that fails, then I will start to think really seriously about having surgery.

In one sense your IBD specialist was right - medically, the treatments are the same for Crohn's colitis as for UC. However, it was disingenuous of her to ignore surgery. I dunno what it is about GIs, but they don't seem to want to talk about the surgery option. In my case, none of the GIs I had brought it up even once over the course of 12 years. In the end it was me who broke down one day and practically demanded surgery. My GI then had no choice to talk about it with me. He confirmed what I was beginning to suspect anyway by that point - that my disease was too extensive for a resection, I'd have to have my whole colon removed and an ileostomy. But it was still sobering to hear it actually said for the first time.

He referred me to a colorectal surgeon, who echoed what my GI said. She did give me an ileostomy, but she also kept in my rectum with a view to a future reconnection. I didn't have severe disease in my rectum and I'd never had fistulas, so I suppose my surgeon felt like I was a good candidate for an ileorectal anastomosis (connection of the ileum to the rectum). I was reassured that the rectal inflammation I had with a stoma was 'diversion colitis' and would go away after reconnection - yeah, right -_-

I should add I was never eligible for a j-pouch; my surgeon made that clear to me from our first meeting. I became interested for a while in a new innovation called a TIES implant (it's a titanium implant which replaces the stoma); my surgeon poured cold water all over that too :-( She said if I looked around, I might be able to find a surgeon who agreed to do it, but she wouldn't put an implant in somebody with Crohn's. So yeah, long story short, if you have Crohn's and you need a colectomy there aren't any satisfactory surgical options besides a stoma - any other option is just likely to lead to the Crohn's coming back. (It can happen with a stoma too; it's just much less likely, particularly if you've never had any small bowel disease.)

I will be interested in hearing your colorectal surgeon's opinion.

Cupcakesoinkgal said...
Even after my surgery when all my other doctors were impressed with how well I was doing (not to mention I was happy) but my GI treated it like a failure because I now had a permanent stoma. Maybe because she wasn't the one to fix me?

I think there is truth to this. It may be disappointment on their end that they can't fix or cure the disease. I remember a friend who was a veterinarian telling me once how frustrating amputation can be. He knew it was an easy surgery, and dogs compensate great for missing limbs, and it took away the problem, but it made him mad that he couldn't fix the problem.

beave said...
The medical treatment is similar but NOT the same between ulcerative colitis and crohn's colitis.

With ulcerative colitis the mesalamines are a first-line treatment that are proven effective for many people.

With Crohn's colitis you skip the mesalamine class of drugs and move up, because the data shows they are NOT effective in treating Crohn's colitis.

The surgical treatment is different too, as discussed above.

Thanks Beave!
This is interesting because mesalamines definitely do help me and in fact, IBD Specialist just put me back on rowasa enemas.

PamSmith said...
I was initially diagnosed with crohn's colitis as I had very small patch in sigmoid colon but when I had a flare in 2013, I had pancolitis and I had a newGI and he told me it looks more like UC than crohn's as I had diffused inflamation from rectum to traverse colon and TI and right colon clear. My pathology never mentioned either way. It always said chronic colits. I had Prometheus blood test both time. First time came as UC like crohns and second time "indermined colitis"

I had remission with asacol for 2 years but I stopped taking it and then for my second flare I had to go on 6mp as I could not get off prednisone with out flaring. My GI is keeping crohs colitis diagnosis for now.

Surgery will be different. For me I am not sure I can go through 3 surgeries. I am mentally preparing myself for bag if I need surgery. I like the idea of drug free remission.

I heard that ClevelandClinic does j- pouch for crohn's colitis if they meet certain condition but most will not do it.

Pam,
I know what you mean--3 surgeries is a lot especially when the outcome is 50/50 at best. Seems like having one surgery is the safest bet. Then hopefully the disease stays quiet and life can go on without waiting for more surgeries and battling complications.

Kanva said...
Plucky, it must be so hard to have this change in diagnosis come at the same time you were trying to decide whether you could come to terms with surgery. And all those drives can't be easy, especially if you're not feeling well. Having recently made an eight-hour drive home post surgery, I get it!
How are you feeling?
As far as the options about how many surgeries to have, my surgeon made me feel better about the three-step plan. He said multiple steps let them take it slow, make sure the body heals well at each step, and get it right. I'm not loooking forward to three recoveries, but I can see how it will be easier on my body overall (I hope).

Hey Kanva!
I just read your update--you sound good! I'm slightly jealous. I'm doing ok--last week was awful post-colonoscopy but I have improved this week. I just started cortifoam and I think it's helping because I am waking up less in the night (to toilet). However I am still at 40mg prednisone and hesitant to drop, but as long as I stay stable through the weekend I'll drop to 35mg Monday and see how it goes.

I don't know about this diagnosis. When it comes to surgery I think I should be allowed to consider a j-pouch given that (according to IBD Specialist) everything about my disease presents as UC *except* for the fistula. She says fistulas are exclusively a Crohn's symptom. But even 2% of the population that is unaffected by IBD will present with a fistula, therefore a fistula is not exclusive to people with IBD or people with Crohn's--this is a fact. So I don't see why IBD Specialist sees fit to change my diagnosis based on the fistula. And I bet other IBD Specialists and Surgeons would disagree with her. Unless there's some other criteria she is basing my diagnosis on that I am unaware of. But she (Specialist) was VERY defensive when I questioned my diagnosis. So I don't really want to get into with her. When it comes down to it, I'll deal with her and this Crohn's diagnosis but I have no problem challenging her/the diagnosis when it comes to surgery.

NiceCupOfTea said...
Plucky. If I was in your shoes I'd be seeking a second opinion as soon as I could. I'm not implying your specialist is incompetent, but I'd certainly want more than one expert opinion on such a contentious subject. You said you had a perianal fistula, but I dunno if you've ever said you had an anal abscess before - have you? Also when you say that 2% of the population has had a fistula does that include all types of fistulas? Injury in childbirth or surgery is sometimes a cause of rectovaginal fistulas for example, but I'd ignore rectovaginal fistulas for now 'cos that's not what you have.

As for anal fistulas by far the most common cause of them are anal abscesses. Most anal abscesses are caused by an infection of the anal glands and not necessarily anything to do with Crohn's. But if you've never had an anal abscess, that means that something else has caused your fistula - and it is most likely (but not definitely) to be Crohn's in all honesty.

Please seek as many as many expert opinions as you can before having surgery. I hope you don't have Crohn's and you can have a j-pouch.

Hey NCOT!
I do want to see another specialist--my former GI in STL--but won't be able to make that trip until mid-June or early July. I mean, unless something crazy happens before then (I hope to God nothing happens). I know that I had an abscess prior to my fistula but was not treated for it until 10 days *after* my fistula broke the surface (draining all the pus from the abscess). I called my GI (the lame one that referred me to IBD Specialist) and they were not concerned enough to see me immediately or send me to the ER. I realize now that I shouod have gonevto the ER prior to the abscess fistulizing, because I was spiking fevers and felt like death was imminent. But I chose not to go because my prior ER trips during this flare had been so useless. My mistake there, but in my defense my GI was not helpful and I was far too sick to be making rational decisions at that point.
As for surgery, IBD Specialist doesn't think it will come to that *yet* and declined to discuss it. She thinks I can reach remisdion with drug therapy. So, hopefully she is right and I can take my time to seek out 2nd opinions and be ready when the time comes.

I'm keeping my fingers crossed for you to find a local, stable specialist you can trust ... I think that would make a world of difference for you. At least you have one in STL, even if it's too far away to be convenient. Sometimes just knowing one of your doctors gets you is enough to make you feel better!
Good luck with the prednisone taper!

Hey NCOT, Kanva & Sfc,

Thanks guys for the encouragement--much appreciated.