Welcome Elise to the No-Colon Club
by Megan on Monday, June 22, 2009 20:36This entry is filed under: Coping/Support
JoyceS. No Colon Tattoo
We know you are headed into surgery Elise, and we wanted to wish you a safe surgery and a speedy recovery! You’ve been such a wonderful friend on jpouch.net, and now you’ll soon be giving advice to others headed into surgery.
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ml says:
June 23rd, 2009 at 7:19 pm
Do you have a blog to follow? I hope everything goes well for you. ML
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Elise says:
June 24th, 2009 at 3:10 pm
Thank you Megan and ML, I did indeed join the club yesterday, but during my surgery the surgeon decided not to create my J-Pouch. So I just had the colon removed. He said that my colon was a mess and also had thick walls. He is concerned that it is Crohn’s Disease and not UC. So the colon was sent to pathology and I have to wait and see. I was also told that it takes about a week for them to do their thing in Pathology. I am not happy at all about the possibility of having my baggie for life, so I have been a bit emotional about that. Other than that I have already been walking, which is good I have heard. I had a lot of pain last night and this morning – muscle spasms in my abdomen. I am pleasantly surprised that the heparin shots don’t hurt, they are giving them to me in the arm because of the muscle spasms in my stomach. What I have trouble tolerating is the potassium drip – now that I find is uncomfortable! It is funny things affect everyone in different ways. Please cross your fingers that Pathology will say it is UC! If so, I have to have an additional surgery, but at least I would have my J-Pouch.
Elise
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Eric Reply:
June 25th, 2009 at 10:38 am
Our thoughts are with you, Elise. I had just my colon removed for my first surgery because I was sooooooooooooo sick, I had toxic megacolon. Three surgeries isn’t too bad.
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Debbie Aiello Reply:
June 25th, 2009 at 2:22 pm
What is toxic megacolon? How were you sick? How are you doing now?
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ml says:
June 24th, 2009 at 3:20 pm
Elise, I am praying that it is UC. I am curious to know how long you have had symptoms and how they didnt know the difference prior to surgery. I have been told for 10+ years that I am a UC patient but so I can understand how upset you might be that you would end up with Crohns. But it is my understanding that even Crohn’s patients can have a j pouch.
Hope you feel better soon. Take it easy.
ML
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Brevin says:
June 24th, 2009 at 5:55 pm
Lizz, don’t you have a JPouch and Crohn’s?
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Elise says:
June 27th, 2009 at 1:25 am
Well, got the bad news last evening from my surgeon. Pathology does indeed feel that my colon had Crohn’s disease, which means I have Crohn’s Disease. I pretty much turned inward last night and just wanted to be alone. This was devistating news for me. Baggie for life. I wasn’t sure how I was going to cope with the baggie for two months, let alone all my life! So, I am having a hard time getting my arms around this one. I really wanted a j-pouch and to be rid of UC. I wanted that chance. I have now been told that I may have a positive outcome on the colon removal for some time before symptoms return, but that they probably will return. I cannot toloerate Remicade or Humira, so my treatment options are limited. I also feel uncomfortable with the baggie attached to me. How am I going to wear all of my form fitting clothes? I have also only had my boyfriend for 3 months, he is incredible, but this is kind of crazy for him to have to accept so early on. I am in a pretty dark place and wish things were turning out differently. I am sure I will come out okay, but this news is pretty bad. For all of you that were lucky enough to get a J-Pouch, please be very thankful. I should probably go home tomorrow from the hospital.
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Debbie Aiello Reply:
July 3rd, 2009 at 6:34 pm
Elise,
I read your story and thanks for sharing it. I have had UC for 7 years and going in the surgery in 30 days. Did you have UC first and then it developed in Chrohn’s?? Is that why they removed the colon? It appears that way. I am surprised they didn’t do a CT scan in Radiology to test it first. I had a colonoscopy done by the Mayo clinic and my lower part of the small intestine was inflammed along with my whole large intestine. I need to do the scan in a couple of weeks to make sure I don’t have chrohns also. What were your symptoms? I am being told if I have Chrohns, they won’t do the surgery???? Looks like you had your’s done. Where did you go? Enough questions, I am sure you will get used to the bag, if I end up having to live with one the rest of my life I will be ok with it at this point, I am sick of feeling sick all the time, my life has been horrible for the last 8 mos. with 2 flare up’s, haven’t been able to work or do ANYTHING hardly. The important thing is feeling good enough to live your life, if you do, that’s worth a million, hang in there, look forward to your response. My email address is dalesko3790@gmail.com, thanks.
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Mark says:
June 27th, 2009 at 10:17 am
Oh Elise, I’m sorry you’ve heard news you weren’t expecting or wanting! Have you ever shown signs of crohn’s in the past? Since this is such a life changing diagnosis when you are back to fighting you may want to take your pathology results to another surgeon. I’ve never agreed that we trust huge diagnosis in our lives to just one person! Elise it is very difficult situation you are in, but try your best to not deal with everything at once, like try not to worry about medicine interventions (humira, remicade not working), and complications with your personal life and the bag. Give the back some time, I was so suprised by how quickly the bag became part of my life (even though I had only for 3 months), but it really faded away because I felt so GOOD! Just do your best to not make the bag a bad thing but see it is as your window to freedom. There are some great people I can give you emails for who lost their jpouches due to complications and now living with the bag, if/when you are ready for those, just email me mdhilton@gmail.com .
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Elise says:
June 27th, 2009 at 12:58 pm
Thank you, I think I am just having a moment, I am sure I will figure this out.
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Mark Reply:
June 27th, 2009 at 2:23 pm
It is a big thing, a big thing so you have all the time and moments you need. We’ll listen because we’ve all had our moments too. I don’t know if this will resonate with you but I like the words of Pema Chodron, she said something years ago that really resonated with me, “We might say ‘totally fed up.’ It describes an experience of complete hoelessness, of completely give up hope. This is an important point. This is the beginning of the beginning. Without giving up hope-that there’s somewhere better to be, that there’s someone better to be-we willnever relax with where we are or who we are” (P.38, When Things Fall Apart).
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trish says:
June 28th, 2009 at 5:44 am
Hi Elise! I am so sorry about your diagnosis but I agree with Mark that you should get a second opinion. 14 + years ago I was diagnosed w/ Crohns/colitis and after my surgery it turns out I only had colitis. I also agree that you should give your bag some time. I’ve only been out of surgery for 6 weeks now but I’m telling you: It feels SOOOOOO good NOT to be sick anymore, and despite the scars and the stoma, I look like my old self again, but better cuz my skin isnt pasty from being sick and my hair is getting thick again and my energy (although slow) is coming back. Some days I have leaks, yes (my stomach is concave and my stoma is still changing size) and I get frustrated but overall I am so very grateful. I’m still trying to figure out the clothing thing but hey, compared to running to the bathroom constantly, this is all ok. I could have take-down in 5weeks but I am going to finish another semester and dont want to deal with the emotional/physical changes right now with the stress of school. I’ll wait until Dec./Jan., but to tell the truth, my bag has given me soooo much relief that I am actually afraid of the take-down. I am afraid that I won’t actually have as much freedom FROM the bathroom as my bag gives me….sooooo, don’t dish the bag yet…Yeah, I wish my body looked like it used to but I dont EVER want to go back to feeling like I used to. I wish you the best, Elise….and it is OK to feel angry/overwhelmed/sad…..
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Elise says:
June 28th, 2009 at 10:32 am
Thank you Trish, I hope I start to see the so-called bright side of this. My mom says I am in mourning. I just wanted a chance at the normal life that I envisioned. It was finally my turn to have it all. I am having one heck of a pity party and it is really quite pitiful. I think the biggest thing for me will end up being the clothes. I only have about 20 pounds of prednisone weight to lose and then I want to wear my old clothes. I want to look good, not frumpy. My stoma is kind of low, same level as my belly button, so it is going to hit the waistband of a lot of things. I wish it were put a little higher now that I know it is here to stay. I liked the idea of it being lower when we marked it, because I wanted to conceal the scar from it after takedown. I also wish there were some kind fashionable bands or stretchy belt like things to wear around your waist to support the darn thing and conceal it. And why the world aren’t these pouches made in colors like pink? I might actually like it if I could pick out my favorite girly girl color. Am I going to have to become an ostomy designer? Is there such a thing? I am so glad you wrote in Trish, I was worried not hearing from you. I am happy that the coin flipped for you and you ended up with UC.
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ml says:
June 28th, 2009 at 6:57 pm
Elise, how frightened and mad you must be at this moment. I will pray for you to find some peace in all of this. You did make me laugh at the ostomy designer thought. Seriously, you’d think by now there would be some stinking cute stuff out there. I have heard of a little pouch called the heart tie for those intimate moments. Can I ask you how it is that they didnt know you had crohn’s until just now? I know that sometimes the patterns can mimic each other but to have it come down to this instance. I can only imagine how over whelming this could be. This concerns me. I have been told I have UC and have been living with it for over 10 years now, even though last three were in remission. I am about to go to surgery soon and would like to follow your recovery more. Do you have a blog address to follow or do you only post here? Take care and know you are being thought of. ML
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trish says:
June 29th, 2009 at 6:04 pm
I’ve been thinking there needs to be more fashionable clothing/ostomy bags/underwear/bathing suits too! I’m constantly trying to hide it, even taping my bag down…and I hate how it crinkles when I move. I’ve been having problems with leaks since my swelling went down. My belly now dimples on the side and I am rashed and am now trying a concave pouch to see if that will help. I still am terrified about take-down. My surgeon told me today that I’ll probably be in the bathroom as frequently at first as I was with UC…that’s TERRIBLE news to me. The bag, despite it’s difficulties, really is a kind of relief. I’m wondering if I am making the right choice with this whole j-pouch thing. I’m sooooo sorry that the decision is made for you, Elise but if its any comfort (and it might not be at this time and it IS ok to mourn, I’m in my own sortof mourning now too…don’t we all when we give up the colon even if it hated us???) I have a couple friends who have permanent ileostomies and they say the quality of their lives is amazing compared to before their surgeries. Looking at them, radiating health, I know they speak the truth. My thoughts are with you, Elise. I hope you find strength and joy in even the simplest of things. As you well know, its quite the road to recovery…but I DO believe you are on that road…..and you aren’t alone! Hang in there! You can email me anytime: usmile4me_tap@yahoo.com. I’m on facebook too if you need to chat…..
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Elise says:
July 4th, 2009 at 8:47 am
HI there, sorry I fell off the face of the earth, it wasn’t because I have been having a hard time, I am doing better. I was staying with my parents this week after coming home from the hospital and I didn’t have internet except for what I could get on my phone! So thank you for all your very thoughtful comments.
To answer some questions: I was diagnosed with Crohn’s disease in 1996 at Yale University Hosptial, I moved around and had different doctors in NJ, CA and finally Virginia, my symptoms were always in the large intestine. One time in 1998 I had a fistula and it came through my belly button. It was quickly closed without surgery (Flagyl), and I was on my way. I was well controlled on medicine, mostly Asacol and 6mP for most of my time with IBD. It wasn’t until 2 years ago that things really ramped up. My GI physician here was just positive that I had Ulcerative Colitis, even the promethieus test favored UC with its markers and so have all of my numerous colonoscopy biopsies and cat scans. So, I trusted the docs, I always brought up the fistula and they said it could have been something else. The surgeon said if he found a mass just under my belly button then he would believe it was a fistula. He did not find a mass, he just felt that my colon once it was out had really thick walls, and it was in horrible condition. The thick walls is what concerned him and stopped him from creating my J-pouch, because UC only affects that inner layer of the intestine and Crohn’s goes through many layers. So that is my path to my diagnosis. I had what they called Indeterminate Colitis.
The most frustrating thing right now is I think my stoma might be too low, it is level with my belly button and the bag is right where my bend is. I want to roll it up – oh I hate it!! I have been told it can be moved, but what the world!! Haven’t I been through enough???? Dern (southern for darn), I also think my home nurse cut my flange too small yesterday, Burberry is upset. But other than that I have been doing quite well. I hope I keep adjusting and figuring out how to feel ok with this and not be self conscious. I really love all of you so much, thank you for caring about me like you have. Happy 4th of July!!!!
Elise
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Brevin says:
July 4th, 2009 at 11:49 am
“Dern Burberry!” – A quote that should be on a t-shirt.
Welcome back to the world of the interwebs, Elise. You missed a lot while you were gone (Lizz gave away free tickets to the circus, an the circus was on the moon! Although I might have imagined that one. Silly moon circus… with your awesome low gravity acrobatics… dare to dream). Anywho.
What size is your stoma? What’s your diet?
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Elise says:
July 4th, 2009 at 1:55 pm
HOLA Brevin,
Burberry is just bigger than an inch right now. 1 1/8th inch was the last measurement. She is quite beautiful according to her many admirers. I wonder how much smaller she will get?? I can’t believe I missed the circus! I love the circus and on the moon! Dern!! My diet is pretty regular, I just can’t eat as much as I used to. I am still on prednisone, so I want everything. I can’t wait to be off of that, I have been on pred since January! I go for my post-op visit at UVA on Wednesday.
Elise
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Paul LaGrange says:
July 14th, 2009 at 5:41 am
Be careful of the remicade and humira treatments. I took remicade and abatacept both similar drugs. Among the disclosures and possible side effects is pancreatitis. While I did not develop pancreatitis my surgeon commented that my pancreas was a little harder than normal and something I will have to keep an eye on going forward. One of the many reasons I opted for the surgery was because I was fearful of the long term effects of the drugs, which as it turns out may be well founded.
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Elise Reply:
July 14th, 2009 at 6:02 am
No worries Paul, I am allergic to Remicade and I cannot tolerate Humira (got MRSA infection from that). I have no idea what kind of maintenance drug I will be on after I have been tapered off of prednisone. Hope you are doing okay
Elise
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Paul Reply:
July 14th, 2009 at 7:44 pm
Still sore, coping with a blood clot and inflammation around the groin. Its still a little slow going but making progress and in many ways doing great not having to worry about my UC anymore. Today was our three week anniversary, so Happy Anniversary. Hope you are doing well, I know you have a bit more to cope with, so hang in there and drop me a line any time you want to talk.
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