45 Years of this!!!

[caligirl]

Hi all - I'm a newbie - can't believe I just found this site and now just wondering how I can recap 45 years of fighting IBDs ... here goes. Diagnosed with UC when I was 14. I imagine you all know the symptoms and med reactions so I'll fast forward to when I was 37 and my gastro told me about the new surgery that I would only have to live with an ileostomy for a short period. Within a month I underwent a coloanal anastomosis (pouch). The temp ostomy was awful for me - large volume, leakage, constant movement, dehydration, extreme fatigue, weight loss, etc. They reversed the ostomy after 9 weeks...over the years I still had most of the same symptoms of UC and then developed chronic pouchitis. Last December, the pouchoscopy showed problems in the ileum. I've been tested for Crohn's - none of the markers are there for it, but other things point to Crohn's. In August I went to the ER with severe ab pain and now I've developed a sinus tract/fistula to the sacrum and have been diagnosed with sacral osteomyelis (infection of the sacrum bone) - never did figure out what the ab pain was all about that sent me to the ER! Of course, my surgeon wants to give me a permanent ileostomy. My infectious disease doctor and PCP understand how I feel about another ostomy since I had such a horrible time with it before and are trying to do everything to save my pouch. My gastro recommends a permanent ostomy to just get this over with, but is now saying maybe we could do a temp ostomy to divert the fecal matter, give the infection a chance to heal...I will most likely have to have surgery to clean out the sacral infection or lose part of that bone. Other than my husband, my family is pushing me to have the permanent ostomy, but they don't understand how sick I was with the last one and the psychological effect it had on me. The drs say that things have improved with ileostomyies over the past 20 years and there are new meds. My predicament is that if I have the permanent ostomy, and my body reacts the same way, I have no recourse whatsoever...then what do I do - not a pleasant thought.

I am taking a myriad of meds - Pentasa, Entocort, Cipro, Lomotil, Flagyl, Canasa suppositories, along with others...I'm forcing down about 28 pills a day. Can't believe after 45 years I'm back to the beginning!

Anyway, I'm so glad I found this site. Thanks for letting me vent and it's so good to know that I'm not alone, but I'm so sorry to see that there are so many of us fighting these diseases.

 

[DustyKat]

Hi caligirl and :welcome:

I'm so glad you have found your way here 'cause this is a fab place with loads of friendly people, support and info and let's face it with 45 years!!! of experience we can certainly learn a lot from you.

Okay, coming from someone with no first hand experience of IBD or ostomies, , I would be inclined to go with the temporary ostomy and allow the bone to heal and then move on from there. We have a Stoma Subforum and maybe a browse through that might give you some idea of what is happening now days....................

http://www.crohnsforum.com/forumdisplay.php?f=46

Good luck with the decision you need to make and please keep us posted.......welcome aboard!

Take care,
Dusty

 

[Dexky]

Hi Caligirl, welcome!! I agree that you should look through the ostomy forum!! Most, especially those who have ostomies as a last resort, seem very happy with theirs!! I'm sure there is a huge mental aspect to it, especially in light of your former bad experience with it. I hope whatever you decide works out the best for you!! Good luck!!

 

[Astra]

Hi Caligirl
and welcome

I think if it was me, I'd go temporary too, save the permanent when all else has failed.
Have a read thro the threads, see how others feel about theirs!
glad you found us, it's a great place to come to, to vent, scream or have a laugh!
lotsa luv
Joan xxx

 

[caligirl]

Wow, what a wonderful welcome I've received here! It is so cool to actually talk with others who have some idea what I'm talking about and going through without feeling like I'm a drag who has this (these) horrible disease(s) and need to be near a bathroom all the time and usually have to work my life around that single issue!!!

I appreciate all the advice and I will certainly check the stoma subforum for more info. It's one thing for the drs to tell me how things are now vs what peeps are really experiencing. I, too, know people who have lived with ostomies for many years with no major problems. I've also heard that the "further up" they are, the more complications you can expect to have...but I will check out the stoma forum.

Something tells me I will be here often - look forward to getting to know everyone and, again, many thanks for all the info. I'll keep y'all posted on what tests show and what decisions are necessary!

 

[CDDad]

Hi,
I'm sure much has advanced since you had your ostomy. Plus the equipment is better today. There are many of us here doing well with an ostomy. Me for instance - it's been 6 months and life is back to normal. My Hollister system is great. I change every 4 days and mostly no problems in between.

Anyway 45 years is too long for this crap! I'm only at 23 years. For now, I am cured with the removal of my colon and rectum.

Good luck with your decision and we'll be here to support you.

 

[Sue-2009]

CaliGirl--I had colitis terribly 5 years ago, and opted for the J Pouch too. I too did not like the temp ileostomy. Since last Nov--I been diagnosed with crohns...Not of the markers show crohns. But, my dr said if it walks like a duck and looks like a duck...Its a duck. So, for just under a year, I have been treated for crohns. I can't tell from your post what kinds of treatment they have been giving you. But, I would divert it, get treatment and go from there...Your last few years sound familiar, alot like mine actually. The meds seem to be working...I had what I thought was pouchitis. My new GI, who is the head of the department says that it is Crohns--even with the negative test. I feel for you, I am trying to save my pouch too! Good luck, post me if you want to...Sue