Looks like I'm still indeterminate

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blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/20/2011 4:13 PM (GMT -6)   
I saw my gi doc today, and the pathology report from my colon came back saying that it was more consistent with UC than with Crohn's (but still possible that it is Crohn's). My doctor was pretty surprised, because one time flagyl/cipro helped a flare (usually a Crohn's colitis not a UC thing), and I had boils that biopsied with granulatomas (also a Crohn's thing).

He said before the surgery he leaned towards it being Crohn's, now he leans toward UC, but he said Crohn's is probably really about ten different diseases and UC fewer, but that they overlap enough that in cases like mine it doesn't matter all that much practically what you call it.

I guess it's better for me the closer it is to UC, as the surgery is more of a cure, but then I started wondering if I could have had a J Pouch. He said maybe, but there was a lot of potential for complications, and I don't even know that I would have gone for it, as I really didn't want to sign on for multiple surgeries...... kind of think it'd be in my interest not to really think about this much, as it's too late..... but of course I am wondering..... I was just so, so sick when I was trying to make decisions, and was mostly going on the advice I was getting, which I still think was the best advice of excellent doctors w/the info they had at the time (he was very surprised by the results..... wish I could win the lottery instead of beating the odds in something like this).

Now that I'm getting better, I am pondering some.

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 4/20/2011 7:05 PM (GMT -6)   
It is frustrating not to know whether you have Crohn's or UC. Every test I had, including a genetic one, all pointed to UC but the doctors said that there was always the possibility they could be wrong. I think that is often times the case with IBD.

I chose a permanent ileostomy even though I could have tried a j-pouch. Every once in a while my mind starts to wonder, out of curiosity, how my body would have handled a j-pouch even though I was very sure I did not want to go that route. I put ALOT of thought and research into which surgery to choose, and I know I made the right choice for me. I think it is just human nature to play the "what if" game. As I become more comfortable with my ileostomy and, one by one, successfully try all the activities I love, second guessing my decision has completely gone away. That is not to say I don't have the occasional bad day, but it does mean I have no regrets. I am very, very happy with the outcome of surgery and life with an ileostomy.

By the way, my low feelings yesterday are gone. As I said, I really don't know why I was down. Last week was one of my best post-surgery. I took a challenging week-long certification course for my profession (something I doubted I would be able to do this year with all the illness and surgery) and then went on snowy overnight backpacking trip and overcame many fears of doing such an excursion with an ostomy. Sometimes the emotions of all this throw me for a loop, but then I remind myself of how far I really have come in 5 months. Maybe I just expect too much of myself. Along with healing physically, one has to heal emotionally and perhaps that just takes a little longer.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 4/20/2011 8:06:04 PM (GMT-6)


blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/20/2011 7:28 PM (GMT -6)   
Blueheron, I was also talking to my doctor today about how hard it is to adjust to being healthy..... well, partly because I'm not there yet, still packing my wound, still low energy, but I am also just used to being sick, it's been such a primary focus for so long. I was kind of sad leaving my docs partly because I like the people there, and I've been there so much (especially when I was getting remicade). Of course I don't want to be sick all the time or go to the gi doctor all the time(and I'll still go), but it feels like moving to a new neighborhood or maybe a new job when the old one was bad and you wanted to leave, but there still were a few good things and it was familiar and you don't know exactly what the new one will be like.....

It's not like I've been in a coma for ten year, my life has moved along, but I feel like I haven't been healthy at this phase of life, if that makes sense.... it's not like going back to where I was before, because I was a lot younger when I was healthier. I only know how to be in my 40s as a sick person, if that makes sense.

And it's a great problem to have, not complaining but it is surprisingly disorienting.

That's awesome that you did the backpacking trip and certification course -- very exciting. Five months isn't really that long; think of what you can be doing in five years! Glad you're doing better today.

I did very little research on the j pouch, and maybe I'm regretting that.... but I so wanted to just be DONE and not risk having something that felt like more colitis and needing more surgeries etc.... and they really thought I had Crohn's....I think now I'm maybe regretting the lack of research than my decision, but I had just been in crisis for a long time, and did my best, I know that......

It is weird to have had such a drastic surgery and still not know your diagnosis...
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. 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

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 416
   Posted 4/21/2011 2:14 PM (GMT -6)   
BLUEGLASS:

i AM ONE week past surgery...not believing that I am still alive..I had two surgeons tell me that I was qualified for a j-pouch, and 2 to 3 GI's that I should just get an illeostomy...

After doing tons of reading on-line (actually, too much now that I realize it), I went ahead with the illeostomy...I didn't want to have 3 surgeries..and, that was if all went right.....will I regret not getting a j-pouch, maybe a little now and then...but, in 5-10 years from now, I, like you and everyone else, will be on with life..and, there will be new osotomy products coming out to make life easier..

Just curious of you two, what products do you use and why? I am just now getting samples....also, have you ever used skin barrier stuff at all or just going with bare skin?

Regards,
enigma


blueglass said...
Blueheron, I was also talking to my doctor today about how hard it is to adjust to being healthy..... well, partly because I'm not there yet, still packing my wound, still low energy, but I am also just used to being sick, it's been such a primary focus for so long. I was kind of sad leaving my docs partly because I like the people there, and I've been there so much (especially when I was getting remicade). Of course I don't want to be sick all the time or go to the gi doctor all the time(and I'll still go), but it feels like moving to a new neighborhood or maybe a new job when the old one was bad and you wanted to leave, but there still were a few good things and it was familiar and you don't know exactly what the new one will be like.....

It's not like I've been in a coma for ten year, my life has moved along, but I feel like I haven't been healthy at this phase of life, if that makes sense.... it's not like going back to where I was before, because I was a lot younger when I was healthier. I only know how to be in my 40s as a sick person, if that makes sense.

And it's a great problem to have, not complaining but it is surprisingly disorienting.

That's awesome that you did the backpacking trip and certification course -- very exciting. Five months isn't really that long; think of what you can be doing in five years! Glad you're doing better today.

I did very little research on the j pouch, and maybe I'm regretting that.... but I so wanted to just be DONE and not risk having something that felt like more colitis and needing more surgeries etc.... and they really thought I had Crohn's....I think now I'm maybe regretting the lack of research than my decision, but I had just been in crisis for a long time, and did my best, I know that......

It is weird to have had such a drastic surgery and still not know your diagnosis...

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/21/2011 3:56 PM (GMT -6)   
Enigma, hope your healing goes smoothly. Glad you're happy with your decision; after getting a good night's sleep, I am also remembering that while I didn't do extensive research, I did think about the j pouch, and I also didn't want so many surgeries with a non-trivial risk that it wouldn't work. I just wanted to not be so sick anymore.... also, I knew that when I felt better I'd be questioning something.... just didn't like the idea of making major decisions when I was so sick, but I wouldn't have had surgery at all if I weren't so sick....sigh.

I am using the coloplast one piece sensura pouch. So far I like the one-pieces better because they are lighter, and I like this pouch because it's easy to clean and seems to do well on my skin. I use the eakin ring around my stoma, and the sure seals on top. I had a few skin problems at the beginning, and then was using too much powder and skin prep .... the pouches weren't staying on. With the eakin ring, I'm not having the skin problems, and I'm doing fine w/out any prep or adhesive removers.

I have a lot of samples that I have not yet tried, as I found something that is working and just want that confidence for now.

There have been other recent posts about what products people use, skin preps etc.... they might be helpful.
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

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/21/2011 9:58 PM (GMT -6)   
Blueglass- I understand what you mean about adjusting to being healthy. about a month ago, I saw my surgeon for the last time (if all continues to go well). It was very weird, as I had seen him every two weeks for four months, and my husband and I had talked to him many times, sometimes daily, on the phone when I hit rough patches. He was such a kind and caring Dr. and had become a major source of support and help. Then all of a sudden I was done... healed... sent off on my own to live the rest of my life with my ileostomy. I felt like I had fledged and it was a bit scary actually. Of course he, and my wound care nurse, said I could call any time in the future. But still, it was strange to basically be cured after being sick for so long and then having several surgical complications. Then there was the part about returning to the real world after being off of work for a while. When my friends and coworkers saw I was healthy, they thought it was so great, but then kind of moved on to other subjects like nothing ever happened. Obviously, this surgery was such a major, life-altering event for me. I am still processing the whole thing and dealing with pretty complex emotions sometimes. I often find I still need to talk about it, despite it being "old news" to my friends. Of course, my husband is a huge source of support, but I am also glad for this forum where I can still talk to other people about the surgery and work through things and also help others.

Enigma- I am using the transparent Coloplast Sensura 1-pieces though I really want to switch to a 2-piece now that my incision is finally healed (my nurse wanted me to stick with 1-pieces while I was healing). I have trouble placing opaque 1-piece pouches over my irregular shaped stoma because I can't see what I am doing, yet I am so sick of the transparent ones. A 2-piece will allow me to see my stoma as I place the wafer and then I can use an opaque pouch. I have tons of samples from every company that I am finally getting around to trying. Problem is, I don't like trying them if there is anything unusual in my schedule for the week since the 1-pieces I have been using are so trusty. It seems like it is going to take me forever to try all my samples. However, I really do want to experiment just to make sure I am not missing out on something that might be the perfect system. I really like the Coloplast pouches, but sometimes the wafers peel up along the edges a bit since they are made out of a thicker plastic. I like the Convatec wafers, but the pouches are not my favorite. Too bad one can't mix and match! One thing is for certain though- I love the Eakin Seals. It seems that no matter what brand or style of wafer I try, the Eakin Seal makes it work with no leaks. The Eakins have even allowed a small irritation that was at the base of my stoma (where it flops over a bit) to finally heal. I do use powder occasionally over small irritated areas and always cover it with some skin prep so it forms a crust. Again, I use this sparingly and only on areas where I absolutely need it as I think it does make the wafer not stick as well.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 416
   Posted 4/22/2011 12:45 PM (GMT -6)   
Blueheron,
 
how do you use the Eakin seal?  how is put on?  where?
 
 
Enigma-! One thing is for certain though- I love the Eakin Seals. It seems that no matter what brand or style of wafer I try, the Eakin Seal makes it work with no leaks. The Eakins have even allowed a small irritation that was at the base of my stoma (where it flops over a bit) to finally heal. I do use powder occasionally over small irritated areas and always cover it with some skin prep so it forms a crust. Again, I use this sparingly and only on areas where I absolutely need it as I think it does make the wafer not stick as well.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/22/2011 1:35 PM (GMT -6)   
Enigma, I use the eakin seals too. They are rings that go around the stoma. It's a sticky thick material, and you just stretch it to the right shape and put it around the stoma (some people attach it to the wafer before putting the wafer on; I find it easier to just put it on my skin). It protects the skin around the stoma -- I found them easier to use and more effective than the paste. At first I had some problems with irritated skin near the stoma, haven't had any problems since I started using the eakins.
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

JMCH3
New Member


Date Joined Apr 2011
Total Posts : 13
   Posted 4/23/2011 11:36 AM (GMT -6)   
I, too, played the "indeterminate" game for too long. I was diagnosed with UC in 2004 and lived with without much issue until November of 2009 when I experienced a flare that lasted 5 months and nearly killed me. All of the inflammation remained in my large intestine, but because I failed to respond to all of the medications, they were unable to determine if it was Chron's or UC. In May of 2010 I had a total colectomy at the Mayo Clinic. Upon looking at my colon, the surgeon and pathologist determined that I had UC and therefore constructed a Jpouch and a temporary ileostomy. In June I started to experience pain and complications around my diverted Jpouch, and have been through hell this year trying to save the pouch. They never were able to do the 'takedown', and I just scheduled surgery for the 19th of May at another hospital to have the Jpouch removed and a permanent ileostomy placed. SO, while you might be second-guessing going straight to the ileostomy, I will be honest with you and say that I wish that I had made that decision a year ago. I wouldn't have spent yet another year having to deal with multiple doctors, procedures, pain meds, steroids, etc. I didn't know it was going to turn out like this, and I suppose I would have always 'wondered', but I can honestly that living with an ileostomy is much better than living with the constant pain/inflammation of a pissed off jpouch!
As for equipment - I've been using the 2-piece Convatec Durahesive Convex Wafer. I recently ordered the moldable barrier, since I still have a temp. ileostomy and most of what comes out is liquid. I'm hoping that changes with the permanent ileo. I use their 1" pre-cut, which are awesome. I also use the corresponding pouch without the filter, since the filter seems to leak and cause more trouble than its worth. I always use an ekin seal (but only for the lower half), and use powder only if my skin looks really irritated. I tried using the Holister products, but found they were too flimsy and too odorous for me. I like Convotec much more.
I hope that some of this helps!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/23/2011 6:01 PM (GMT -6)   
JM, that's rough. I hope the permanent ileo does the trick and you can stop the multiple doctor/drug treadmill. When I was thinking about the surgery, I was afraid of the sort of thing that you've had to go through .... I'd just been so sick w/so many complications, didn't want to risk things still feeling the same (my recent second-guessing was more about how I didn't really think about the possibility of the surgery working...)

Did your complications change your diagnosis to Crohn's? Just curious.

Welcome to the list!
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

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/25/2011 9:37 AM (GMT -6)   
Enigma- sorry I never got to answer your question about the Eakins. I have been super busy which is actually a wonderful thing!

I use the Eakin Rings right on my skin around the stoma just like Blueglass said. I have found that putting them on the wafer doesn't get them quite as close to the stoma. They look like a thin donut and the hole in the middle stretches. They can be handled without losing their stickiness too... I confirmed this with the Convatec rep. They also make a thin version called "Eakin Cohesive Slims", but I like the regular ones so much that I haven't tried my samples of these.

One thing I do that is a little different is that I tear one side of the ring and then hook it around my stoma, getting it as close to the base of my stoma as possible. I then rejoin the broken ends by smushing them together and then pressing the whole thing down on my skin so it is nice and stuck. I found that when I was putting the ring over the stoma (like putting a shirt over one's head) the underside of the ring would get a bit wet from stoma mucous brushing against it and it wouldn't stick as well. My new method eliminates that, and the broken ends where I tear it fuse back together very easily.

Hope this makes sense. Basically, with whatever method you use, when you get done it looks like a thin donut of putty with your stoma sticking out of the middle. Then you put your wafer over the whole thing.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
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