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melski
New Member


Date Joined May 2011
Total Posts : 19
   Posted 8/8/2011 5:41 AM (GMT -6)   
Hi guys n girls

I'm a little confused about what to do now, it appears everything is my choice now :S

It's been 5 months since my ileostomy and iv just been for my appointment to talk about reversal.

My consultant has said that my tests came back inconclusive with regards to whether i had Ulcerative Colitis or crohn's disease.

Although my body is healing well he said that if i have the reversal i am running the risk that it maybe crohn's disease and may i suffer very badly after the surgery (which is going to be major :/ and will involve another small op afterwards) and could result in having to have yet another operation to re-due my stoma.

The risks appear to be rather heightened due to the fact that it maybe crohn's. I am really shock at this as every other doctor seems to think it was defiantly Ulcerative Colitis

I'm not really to sure of how the J - pouch will affect me and whether it is something i really need although being only 23 i feels a long time to live with the bag and i would hate to spend the rest of my life thinking i should have had the op, for better or worse.

I have got an appointment to see my stoma nurse who is lovely and im sure will help me learn all the facts in more detail although for now it would be nice to hear from real people rather then booklets about any situations that could perhaps teach me a little more about the emotional side rather then just the op side

Thanks for any advice and for any comments

It will be gratefully and happily received

Melski x

im guessing this cud be the best place to post this as i did post on the Ulcerative Colitis but it think maybe here is more appropriate?

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/8/2011 6:01 AM (GMT -6)   
I was one of the people who was originally diagnosed with UC but then they changed it to Crohn's colitis. At the time of my surgery, there was still a 15% chance it was UC. I went with the permanent ileo just because I didn't want to risk any more diarrhea or sickness; I'd been through enough. Right now I'm pretending it's UC (as is my gastro) and I'm not on any Crohn's meds, because as my dr says, usually if your disease (even if it is Crohn's) is concentrated only in your colon, it is unlikely to go anywhere else. If I *should* ever need to get back on meds, I'll deal with it then, but as for now, the risks outweigh the benefits in my mind.

It is a totally individual decision based on each individual diagnosis and person's life situation...I can't tell you what to do, but I hope this helped. Oh, and I was 28 when I decided this.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/8/2011 7:01 AM (GMT -6)   
Mine went the other way -- I started with the permanent ileo because they were pretty sure I had Crohn's, and then the test came back that is was more likely UC (but still could be Crohn's). I am older, which makes a difference, but I feel fine with how things worked out. I just wanted to be done with surgery and sickness; I didn't want to have to worry about urgency w/the j pouch, and I was OK with having the bag. If it really is UC, that's a bonus, then I'm done for sure.

I am not sure what I would have done if I were younger, though.

One thing to keep in mind with being young, is that the research will get better, and some of the surgeries might change too. My doctor said that he thinks Crohn's is really about ten different diseases, and UC fewer..... wouldn't be surprised when they sort out some of the genetic things if there will be much better answers before surgery as to who is likely to have problems and who not. Crohn's and UC are clearly kind of fuzzy categories at their boundaries.

So, I wouldn't be positive that not having the surgery right away means having a bag for the rest of your life, that's all I'm saying..... although I can also see where if you're going to do it, you might not want to wait ....

It is hard decision, and as Stephanie says, yours alone.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/8/2011 7:19 AM (GMT -6)   
I guess I am not that familiar with the pathology diagnosis process.

Even though my husband ended up not being able to have the j-pouch performed as hoped and anticipated and ended up with a permanent ilesostomy, the pathology report on his diseased colon that was removed indicated UC...no chrons and no cancer.

His diagnosis sounded quite conclusive and emphatic...so I guess I am confused how they are not sure if it is chrons in your case.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/8/2011 10:22 AM (GMT -6)   
Here's what my pathology report said, "...these features are more consistent with ulcerative colitis than Crohn's colitis, although a definitive distinction between these two entities does require correlation with other clinical and laboratory data."

I don't know about Melski, but in my case, some of the other clinical and lab data indicated Crohn's. My scopes always looked patchy, like Crohn's, and I had a skin condition that biopsied as having granulatomas, like Crohn's. Flagyl helped one of my flares, and that's much more likely for Crohn's colitis than UC.

UC wife, my guess would be that your husband was more consistent -- his scopes and responses to drugs and such probably indicated UC all along.

My doc says he put me at about 2/3 as having Crohn's going into surgery, and now he'd say about 2/3 that I have UC..... it's just not clear for some people.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/8/2011 10:29 AM (GMT -6)   
Yeah, like Blueglass said, they have similar symptoms. I had continuous inflammation throughout my colon when I was diagnosed, which is consistent with UC, and then it got more patchy as I got better, which is more like Crohn's. Then I didn't really have any symptoms like fistulas or abcesses which are common with Crohn's, and when my colon was removed they were still not sure. I'm sure it's because like someone said above, they just don't know as much about either disease as we wish they did. It is most likely that there are different subdivisions of the disease that they just haven't identified yet.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Golfnut50
New Member


Date Joined Aug 2011
Total Posts : 19
   Posted 8/8/2011 12:04 PM (GMT -6)   
Hi Melski,

You have a very tough decision a head of you. I have Crohn's for the past 25 years and there were good days and bad. When my GI doctor said I'm a good canidate for cancer in the next 5 to 10 years, there really wasn't much to think about.

I'm 48 years old and been on the bag for the past 9 months. I'm still having good and bad days but in most part it was a good decision.

I'l be honest with you, I still have problems looking in the mirror and seeing a bag hanging from my stomach.

Good luck...........

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/8/2011 12:52 PM (GMT -6)   
I had my ileo done at 20 yo. It was a loop ileo and the idea originally was to reverse it. After 2 days of not running to the bathroom and being able to eat and not be in agony I said to my surgeon that I never wanted it reversed. I had only been dx 2 years before but in that time i had missed out on so much living that I refused to go throuh that again just to get rid of the bag. My surgeon said it was good job I didn't want it reversed as my colon was completely shot to pieces but it had to be my decision. Mine if most def CD and never been in any doubt as had colon and small bowel disease. I still get flares in small bowel and am taking meds to keep it in remission. I have never regretted this decision and have done so much that I would never have been able to do without it.

However, and this is a big however. It is your decision and yours alone. I decided I had had enough of feeling ill and not being able to enjoy my life like my friends. It really depends how mentally prepared you are and how you feel you can live with it. You have to feel comfortable with the decision as you are the one that is living with the illness.

Good luck in whatever you decide.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

melski
New Member


Date Joined May 2011
Total Posts : 19
   Posted 8/9/2011 4:25 AM (GMT -6)   
thankyou all for your comments its nice to know that people are willing to talk and help others, although i still have to decide :(

I was kinda hoping they'd just say one way or the other and i'd follow their lead.

Thanks for commenting and i'll keep u updated

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 8/9/2011 6:52 AM (GMT -6)   
Common thinking nowadays is that if it IS Crohns (or what they call Crohns Colitis, ie Crohns that acts like Colitis and is limited to your large intestine only and hasn't spread, and is NOT as some people think both Crohns and Colitis - you can't have both) and has been limited to your large intestine only for the past 5 years at least, in which case it will, usually, always only stay there and not spread, and a j pouch should fix the problem.

It's up to you. Are you willing to take the risk, the risk being that a few years down the track you may have to revert to a permanent ileostomy in the rare event that the Crohns spreads?
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/9/2011 8:00 AM (GMT -6)   
I was told going in, on the assumption that what I had was Crohn's colitis, that the permanent ileo had about an 85% chance of being a cure, and that if the Crohn's came back, it was likely to be near the stoma and easy to treat. My gi doc recommended permanent ileo.

My surgeon (who I had just met) pushed me on making sure I was OK with closing out the possibility of having a j pouch..... but she said the two conditions for a j pouch w/Crohn's were a) pristine ileum (which I had) and b) uninflamed rectum (which I was very, very far from having).

The NP at my gi docs office had told me that I would have to go to another country to get j pouch surgery....... my surgeon said I could go to Cleveland Clinic, but they don't do them on Crohn's patients at Mass General.

It was all very crazy and confusing, as I was so sick (had just gotten out of a 10 day hospitalization w/a very high fever). I was mostly going on my gi doc's recommendation, as I trust him, and also my strong desire to just be done.

Sorry we couldn't make it simple for you..... it just isn't..... sounds like maybe you should talk to all your docs about it.... see what the ones who thought it was UC think now....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/9/2011 8:17 AM (GMT -6)   
I was totally like blueglass. I just wanted to be DONE. That was how I decided against the j pouch. It was a really easy decision for me.
 
Blueglass, since you have a similar diagnosis to mine, I'm curious--are you on any meds for Crohn's? I'm not (hooray) and just wondering if anyone else is in the same spot I am.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/9/2011 9:50 AM (GMT -6)   
80sChick, nope I'm not on any meds at all! Isn't that amazing! Just vitamins.....

I'm not sure what meds they would put me on, as I've already blown through asacol, 6MP, remicade, humira, cimzia, etc. So, fingers crossed that I really am done.

I did have an abscess and boils (which they called cutaneous crohn's at the time -- it's rare, and horrible).... my doc was not sure that the surgery would take away the skin problems, but so far, so good. I was on antibiotics for them, but not any more.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

melski
New Member


Date Joined May 2011
Total Posts : 19
   Posted 8/10/2011 11:13 AM (GMT -6)   
Iv had my large intestine removed and altho they say i cud be very ill if it comes back i assumed that after having it removed i would be cured :S
To be honest i dont reali get what they mean when they said i could be ill again, is that only if i have crohns and if thats the case will i be the same as i was before, which is my worry as i didnt reacted to the medicine, i was onli aware i had ud or crohns for a week before my op they said had to operate as my body wasnt responding so does that mean that if i had the j-pouch and it did make me ill what wud happen then ??

also for the last week iv been being reali sick and feeling flushed alot im rather worried bout that as i had tummy craps too my doctor said to come bak in a week and they will check me over any ideas if i shud be worried about this i dont wanna make myself a pain to the doctors but i dont think worrying is helpin me.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/10/2011 11:22 AM (GMT -6)   
If you had colitis before -- whether it was UC or Crohn's colitis -- it's not going to come back the same as it was if you don't have a colon, since what you had before was inflammation in the colon.

Crohn's can occur anywhere in the digestive system, although it's usually in the intestines. So, the fear would be that it could come back in your small intestine. If you get a j pouch, that would be made from your small intestine, so inflammation in the pouch might have some of the same symptoms as colitis -- urgency, accidents, etc. but it is still different from colitis (no colon = no colitis).

Sorry you aren't feeling well. Can you call and talk to a nurse to see if you need to come in earlier? Hope you feel better soon.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

melski
New Member


Date Joined May 2011
Total Posts : 19
   Posted 8/10/2011 11:43 AM (GMT -6)   
thanks blue glass, i think ill call tomorrow. so it would be simila but not the same i just dont like the thought that it would really be my own fault if it went bad. i really do fear being that ill again and im not sure what the treatment would be if it did. i mean i no id end up with a bag again but would that stop the small intestine being inflamed ?

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/10/2011 11:58 AM (GMT -6)   
Have you ever had small intestine issues before? It's not that likely that you will if you have not (I was told it's a 15% chance).

If you have Crohn's, you can have small intestine issues whether you have a bag or not. A lot of inflammation in a j pouch will make it not work right, though, and might lead to going back to a bag.


It's not your fault if a surgery doesn't work out. You've had a nasty illness, and you might still have it. You need to get the best medical help you can and as much information as you can, and make your decisions in that context. But no one, including your doctors and you, can predict the future. Just do the best you can, and deal with what you have to deal with when it comes up.


Do you have someone who goes with you to medical appointments? A parent or other relative or friend? I think you need to get some good information and some help sorting through it. You sound pretty overwhelmed; some support could help w/that burden.

Hang in.

hang in.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

melski
New Member


Date Joined May 2011
Total Posts : 19
   Posted 8/10/2011 12:09 PM (GMT -6)   
no not really my family is just my grandparents and they dont really understand my nan has not long ago had a stroke so i dont really want to stress her out, and my partner doesnt really understand whats going on.

As far as i know i havent had an issues with my small intestine (touch wood). the problem i guess i have is i dont really understand what the doctors mean alot of the time and for sum unknown reason i dont ask them to explain :S

Altho i think wen i ring the doctors tomorrow i might see if they can run through everything again with me

Thankyou :)

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/10/2011 12:43 PM (GMT -6)   
I have Crohn's and have small bowel stricturing and inflammation although this was a lot less severe than the colon. So when I had ileo it was originally planned to have a reversal, this was 20 years ago. However, after 2 days of no pain and no rushing to the bathroom I said there was no way I was going to have it reversed which was great as surgeon then told me that the colon was completely shot to pieces. Scans then weren't that advanced and they couldn't see how bad it was until they got in there but left it as a loop ileo as they said it had to be my decision.

I still have disease in my small bowel and take azathioprine to keep this under control and it only became a problem when I stopped the azathioprine as had been in remission for 6 years and GI said good time to stop it to see if I could manage without it. Very bad move as flared the worst I have done for 20 years and had to restart azathioprine, which is no prob as gives me no side effects, and Humira which has given me bad side effects - nerve damage so i have stopped that and just continued with the azathioprine.

There are always options and it is just about finding out all the information and deciding which one is best for you. There are no guarantees but the aim is to make life easier and to make you feel better. Hope you get it sorted and get some answers.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/10/2011 1:33 PM (GMT -6)   
Yes, definitely ask them to explain some more. You might want to write down your questions before hand and then write down the answers. I find it hard to remember everything from a conversation, and I often forget to ask some questions if I don't bring a list (fortunately, I can email most of my docs, and they are pretty good at getting back to me).

I'm not sure where you are, but is there a social worker or someone else who can help you navigate the medical system?

You can, of course, also keep asking questions here, as there's a lot of knowledge .....but some things need to be more specific to your individual situation.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

melski
New Member


Date Joined May 2011
Total Posts : 19
   Posted 8/11/2011 7:59 PM (GMT -6)   
Well i got in to see my stoma nurse next week and i'v started writing down things as i think of them.

I'm not to sure bout social workers im in the Birmingham area.

Yeah i like posting here is nice to hear from real people i think might as my doc if i can see my reports or what ever they are called as i dont really no much bout what happened.

Again thankyou

mincon
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 8/11/2011 9:43 PM (GMT -6)   
I feel for you, I was in a similar situation. I had emergency sugery to remove my colon b/c of what was thought to be UC. Pathology came back being more consistent with Crohn's but not 100%. My surgeron said no to JPouch but being that I was only 30 at the time I wanted to find a surgeon that would do J pouch. I found one and he said as long as I had no inflamation in small int. and minimal in rectum he would do it. Although I had bad inflamation in the rectum he was still willing to do the Jpouch.  However, the more I thought about it and researched it I decided to stay with perm. illeo. I was feeling great with it and being that I have two small children it seemed like the right decision for my family. If I had to make the decision over again I would still go for the perm. illeo. Obviously you have to do what is right for you but for me the illeo was a small sacrafice for good health.
 
Good luck I know it is not an easy decision when you are at that point.
 
 
All the best,
Mindy 

melski
New Member


Date Joined May 2011
Total Posts : 19
   Posted 8/13/2011 1:09 PM (GMT -6)   
I'm just not to sure if there is even a way to find out what i had?!

Although i dont seem to have any inflammation at this time it still seems like a big risk, if it means im going to under go the major op and a small op to end up back in this position.

It seems hard too differentiate between wither crohn's or uc.

I do seem too feel like i missed a whole section of this because before i went in to hospital for 3 weeks before my op i had no idea i was at risk from any illness i seem to have skipped the suffering most of people had, and so i guess even tho it was a lot of pain and suffering to me it was only a few months not years so i dont really feel as much of the gratitude for the bag that alot of people do.

I really dont have a clue which would benefit me more

Melski x

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/15/2011 2:37 PM (GMT -6)   
WOW that's a tough one. I would find out definitely which disease it is before I did anything. Good luck. Rosemary

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/15/2011 3:11 PM (GMT -6)   
It is kind of weird w/gratitude for the bag and all..... I think it is harder when you weren't as sick beforehand. I go to a support group, and there are folks there who were fine, and then they got diagnosed w/cancer and lost their colon.... that's just very hard to deal with.

If you would have told me 20 yrs ago that I'd be grateful for pooping in a bag the rest of my life, I'd have thought you were completely nuts! But here I am..... guess I paid my dues upfront.

It really is hard, and I hope you get some good advice and support. Hang in.....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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