Looking for advice - I am so frustrated/confused right now!

[mlusti1]

Hey everyone - I posted this on the "My Story" thread, but since I have a stoma and since this thread is related to further surgery, I wonder if anyone here might have further insight...Read on and thank you so much!!

I need some guidance and am hoping you can help. I've been sick for about 8 years now, went through the whole slew of medications and finally ended up in emergency surgery this past March. I had a full colectomy and now have an ileostomy. Because of my condition, what is usually done over 2 surgeries, has to be done over 3. So during the first surgery (as noted above) they removed my colon and gave me an ileostomy. The second surgery was supposed to happen in June, but got pushed back. This surgery will involve the building of a J-Pouch. After that, I'll be in recover mode again and then have my final surgery which will involve a reversal.
I am a teacher and am supposed to head back to work in 2 weeks. Of course, I just got a call this afternoon from my surgeon's office, with a date two weeks after I get back to work. I feel amazing since my surgery - I can't believe I don't run to the bathroom every 2 seconds! What a relief to be able to go grocery shopping and run other errands without having to consider where the closest bathrooms are!! So I feel great, but I really don't want to live with a bag my whole life. I'm okay with putting it off for a little while (I got over the fact that it wasn't going to happen this summer), but I dont' want to say no to the date they're offering me in case nothing comes up for a while. I have 2 major concerns:

1 - That I won't feel as great as I do now, after the second surgery (though my understanding is that the final surgery - the reversal - will be the one that is toughest to adjust to).

2 - Work - I had to take a bunch of time off last year (first in the winter because I had a major flare and was hospitalized), and then for/after surgery to recover. I don't want anyone to be inconvenienced by my taking off from work, especially my students. And I don't hold a tenured or seniority position, so I worry that at the end of this academic year, they'd find someone else (more reliable, with less health issues) to teach and I'd be out of a job.

This whole thing is just so frustrating. It took me forever to decide to go through with surgery (even if it was emergency), and now that I've gone through 1 procedure, I just don't want to be sick again. And I don't want this next surgery to interfere with my life (i.e. work)!

Any guidance, suggestions, advice would be so helpful!!
Thanks!

 

[Terriernut]

Welcome! The first question I have to ask is, what is your diagnosis, UC or Crohns? I must assume it is UC or they wouldnt consider a J pouch? Crohnies dont do J pouches well. Can you give us a general symptom and diagnosis to help?

I have a so called temp..and I'm in NO hurry to have it reversed I assure you. If it wasnt for Ollie the hernia, I'd be completely full of beans! (thats english for over the moon, happy)

 

[mlusti1]

Hi there Misty,

Sorry - I left that detail out! Mostly because I find it confusing...
For about 7 of the 8 years I've been sick, my doctors have referred to my disease as "indeterminate." My GI kept saying he wouldn't be able to tell what it was for sure until my colon was in a bottle! Ha! Then, just about a year ago, he told me it was likely UC, but we still didn't know for sure. When I spoke to my surgeon, following my surgery, he told me it looked like it was UC. I was thrilled, because the surgery was considered a cure (essentially). But don't worry! The excitement continues...
A few weeks later, everything came back from the lab and he told me it actually looked like Crohn's. For whatever reason, we're still not 100% sure, but it's probably Crohn's now. When I went in for surgery, the inflammation was isolated to my colon, but now it's possible the disease will come back since it might be Crohn's.
Hence much of my confusion...

 

[glum chump]

HI mlusti1:

Those are quite the dilemmas! Isn't it just the way that just as you are returning to work, you get a surgery date. Oy.

I'm wondering if you've talked to your union rep/shop steward about the potential risks of taking time off may be in terms of employment security. I realize that this doesn't help in terms of not letting your students' down, but i'm wondering if it's possible to take the first term off and go on short-term illness leave (giving students continuity with one teacher and you enough time to heal just in case you hit a speed bump along the way). Crohn's is a disabling condition, and since I see you're located in Canada, you can't lose your position unless your employer can show that they will undergo "undue hardship" if they kept your position open for you to return to.

I have the Crohn's/colitis dilemma as well---my ileostomy is permanent, and I'm really hoping that I have UC and not Crohn's. Oh well, the "is it Crohn's or is it colitis" will all become clear if the inflammation moves elsewhere.

Hmmm, I don't think my response is likely very helpful, but here goes nothing...

Cheers,

Kismet

 

[CrohnsGA]

Need help

I'm getting things together for my surgery and hospital stay next week. Do you suggest taking gowns instead of PJ sets? Will it be easier for me and less painful to wear a gown? I'm getting an ileostomy. Thx for your help?

Welcome! The first question I have to ask is, what is your diagnosis, UC or Crohns? I must assume it is UC or they wouldnt consider a J pouch? Crohnies dont do J pouches well. Can you give us a general symptom and diagnosis to help?

I have a so called temp..and I'm in NO hurry to have it reversed I assure you. If it wasnt for Ollie the hernia, I'd be completely full of beans! (thats english for over the moon, happy)

 

[mlusti1]

Good luck!

Lots of luck with the surgery. I hope it goes well and you have a speedy recovery.
In terms of what to bring, I wore hospital gowns the whole time. If you'd rather wear your own stuff, I'd definitely suggest gowns as opposed to sets. But it's a good idea to have some comfy pants with you, for when you get up and start walking around. They'll probably find a good spot to make the stoma, usually over or under the pant line, but you might be more comfortable without pants for the first little bit! I also had a bunch of different things hooked up to my body (a rectal tube and catheter) for the first few days, so wearing bottoms was out of the question.
Hope this helps!

 

[Terriernut]

mlusti1, If it is Crohns, a J pouch wont work. Therefore you may not be needing that many surgeries. You may need one for the temp ileostomy, and then possibly the reversal. As for employers, that I cant help with as I'm not in your neck of the woods.

crohnsGA, Take both! On the day see what you feel like wearing. I was in hospital in the dead of winter, no jammies for me, I was in sweats and t shirts.

 

[mlusti1]

When you say the J-pouch won't work for Crohn's, is that something you know from experience? When my surgeon spoke to me, he told me that, at the end of the day, we don't know if it's UC or Crohn's, and even if it is Crohn's, I might be in remission to a few to several years. So, he's been talking about doing a J-Pouch since it might give me a better quality of life (even if it's temporarily).
This surgeon seems to know a lot about what he's talking about, and I trust him fully, but do you all think I'm crazy for going through with this? I don't know what to do!!

 

[Terriernut]

Its something many of our members know from experience. They wont do a J pouch on me because I have crohns, period. However, people with UC do fine with a J pouch.

 

[poolside]

I have never had a J pouch but just finished a very eventful reversal surgery, all I can tell you is make sure you are sick of that darned bag and want nothing else other than to have it removed.
That was the point I was at, and the fact that my reconnection worked and my bag is in the garbage is the ONLY think that got me through all of the pain and anguish of my almost 3 week hospital stay.
Coming home has been no picnic either. Although it's absolutely wonderful to be here, I am basically retraining my bowels, trying constantly to get them going, dealing with much more pain than the ostomy surgery.
But I don't care because the one thing in the world I wanted happened so that's what keeps me from losing it!
Soooo make sure you are fed up with the bag.

 

[mlusti1]

Thank you so much for the support and insight!

Hi everyone,

Just wanted to thank everyone so much for the insight. I'm still not sure what I'll end up doing - I find it hard to turn down a surgery date now that they've finally called (and I feel like I've been waiting for so long...though in reality it hasn't been that long). I do have my doubts and concerns, for example, how I'll feel after the reversal. But this second surgery for me would be the building of the actual J-pouch. The reversal wouldn't happen for another while yet.

The deal is this - when I went into the first surgery, it was supposed to be done in 2 steps (colectomy and building of pouch, and then the reversal), but that didn't happen. So I'd prepared myself psychologically for something that didn't even fully happen...Also, another missing piece to this whole story - I'm getting married in the Spring and the original plan was to have everything done and well by the time my wedding date came around. It's looking more and more unlikely that everything will be done by then, and that even if it is, that I'll be adjusted and feeling well...

I want to have a good year. Actually, I want to have the best year of my life! And in my mind that originally meant being "normal" (I hope no one is offended by that, but I'm sure you all know what I mean) and feeling good. Now, I do have a bag that I carry around with me no matter what (my fiance sometimes refers to me as the "bag lady" - ha!), so that might not be completely "normal," but I do feel amazing.

And maybe you're right when you say I should be so sick of the bag and not want anything other than getting rid of it. Maybe I'm not at that point yet. I just feel like I have this constant itch that I can't get at. And, no matter how silly this might sound, I was finally okay with myself and wearing bikinis...and now, well, now I won't wear one....Just frustrating, no matter how silly and petty it seems.

I am so thankful every day that I feel so amazing now. And I don't want to lose that. I just have such a hard time thinking about one of the most important days of my life, a day where everyone will be looking at me, a day where I might want to be intimate with my man (even though I'll probably be SO exhausted), and acknowledge that I might have a bag attached to my body.

I mean, I guess it gives me character =) I guess it reminds me of how strong I am. But I just feel confused about the whole thing.

I apologize for my redundancy. I mean, everyone on this forum has been there, done that, been through tough times, and many of you have even been through way more challenging times than me. I'm just really grateful for all of your support and I should have done this a long time ago. I have an amazing support system from friends and family, but it's good to share my thoughts and feelings with people in similar situations. So thanks! And keep the insight coming, if you have something to share that might help me clarify this whole thing.

Feel good and be strong!

 

[Kris]

I'm in a similar situation. I had most of my colon removed and have a temporary ileostomy. I'm supposed to have a reversal and hook my colon to my rectum.I was told for over 10 years that I have Crohn's. After the surgery the surgeon thought it looked like colitis. Before the surgery, the surgeon said this was my only option before having a permenant ileostomy. He did not want to consider a j-pouch, if I had Cron's. But now since they aren't completely sure what it is, they will do a J-pouch if my resection to my rectum fails. He said if the J-pouch fails then we know it's crohn's. Anyway, this is probably the same thing your surgeon is thinking. My surgery was in Feb. and I'm supposed to find out at the end of this month if I'm ready for the reversal. I may be getting a new job in October, and I'm afraid having a reversal will screw that up. I don't know whether to hurry up and do it before I start the job or wait a few months after.

 

[Ian]

Kris, it's interesting that they were willing to do a resection after colectomy but not a j-pouch when they thought it was Crohns. Isn't the risk the same - that the disease could re-occur at the resection site and cause the disease to spread to the previously unaffected small bowel?

Anyway, I hope this is all irrelevant because you in fact have UC and were cured months ago .

 

[Kris]

I guess the resection could last a life time. There is a chance of getting crohn's back at the resection site. I don't think it will spread to the small intestine, unless it was there before. My doc said that crohn's usualy follows the same pattern. The J-pouch has a much higher failure rate with crohn's. This was how it was explained to me. To be cured would be a dream come true Ian. I wish we all could be cured of this dreadful disease.