Moving forward... Or not!

Hi all... It's been a pretty emotional ride for the past 3 weeks here. First I worried about that potential neoplasia biopsy (benign, whew...). I've consulted with my GI, my CR surgeon and an ET nurse. Both my GI and my surgeon are strongly recommending a permanent ileostomy - total proctocolectomy (right - all of colon and rectum?) Last summer when I saw my surgeon she said she'd be willing to give me a temp ileo to see if things would heal up (fistula included). So after my scope 3 weeks ago my thought was, OK time for a temp ostomy. (I'd been told the bowel would likely heal up when not in use) Since that time I've been told repeatedly that if I do not agree to removing the rectum, they don't want to do the surgery.

If that biopsy had not been benign, it would have been a no-brainer! If I were hemorrhaging (like when I bled out half my blood a few years ago), it would be an easier decision. Even if I were in the bathroom 20 times a day it would be easier to consider.

But, none of this is the case. He said that my tissues are very severely ulcerated - about 1/3 of my colon. Very severe when it comes to endoscopy type of evaluation. Since I work from home most of the time, am anemic but not hemorrhaging, still working, still raising my girl... it's also considered moderate. My pain is controlled with pain meds, for the most part. I do not take them every moment of the day, just morning and again evening-time. Not every 4-6 hours kind of dosing. I get low-grade temps, rarely above 100.2-100.3. Because of the pain meds, I take stool softener in the evening and this narcotic/stool softener thing sort of allows me to slow up during the day and then softens the blow in the mornings to empty me out. Intermittent nausea/vomiting... Impossible to predict when or why. Last week I woke up vomiting, today I felt pretty good. Pretty little in the way of continence. I basically have to go and that's that. I miss the bathroom several times when I'm just in my own home. Sed rate hovers around 80. WBC - around 15. iron is still borderline anemic, even after the 5 infusions in june. (too much inflammation, he says)

I am just not sure that I'm ready for a permanent solution and they will not offer a diverting ostomy at this time. Am I crazy to just keep on like I"ve been doing? I mean, I frequently have "Crohn's moments' (accidents) but I guess I've learned to deal with that in most ways. With the iron infusions, I feel more energetic too. I've quit mtx because it was not helping - my scope was worse. I realized last night that my CRP was almost *normal* back when I was on Tysabri. So maybe I think that offers hope with vedolizumab comes out (not eligible for the trial)...

Anyway, I suppose I'm just rambling and getting my feelings out. I've been SO very confused these past few weeks. Today after learning they feel like it's "all or nothing" I feel more settled in the, "fine just leave me as I am" decision. My GI is willing to allow me to try things like LDN, statins (found a trial on the .gov site), and maybe even the parasites.

Just thought I'd throw it out there to you guys... If anyone has any words of wisdom or point that I've missed. It's so hard to make these decisions on my own. My family is nowhere near. I am single. It's just me, my girl, my cats and the bunny! If I wait for the surgery (until it becomes more an urgent situation, hence more clear it's necessary) she will also be older and more able to deal with me being gone for a while (hospital and recovery).

Sorry for the long, long-winded note. It just always helps to put my thoughts out there to you guys.

Thanks for reading if you made it through all that!

---Oh, I've also officially failed all meds. I'm not questioning if it was just my fear of PML that made me quit Tysabri. Not sure about trying that again, but the other meds - all biologics, immune modulators, antibiotics, etc, I have failed.

sr5599~Here's my story...In 2000 I had to have a temp ileo for a sx complication...didn't care to keep it and had a reversal. What I didn't realize was that an ileo gave me my quality of life back...I had been suffering for 5+ years In 2001 my docs laughed when I asked for another one! They knew I'd get to that point...no meds worked well enough...and my daughter only knew her mom as 'sick' all the time

I lived with my temp ileo for 8 years and took my meds for my rectal disease (NO PAIN MEDS though!)...became the mom I wanted to be and could work 40 hours without batting an eye! After my Proctocolectomy I realized how sick my colon/rectum made me. I felt fine at the time, but when it was gone, I couldn't believe it It wasn't instant like UC suffers, but it did happen within a few months of surgery.

I am currently med free and more active than I have ever been! I run long distances (long for me, lol), kayak, spend HOURS with my daughter at horseshows and can travel without batting an eye.

I knew I'd made the right decision when my daughter's comment one day was "the witch from the closet is gone"! It made me sad that I was that irritable when I was sick...I'm glad I heard that, though, and have definitely made up for all those horrible years!

Now, I also wanted to mention, that even though I am thrilled with my outcome (and would do it again, lol), it is a major surgery and sometimes there are set backs. Not everyone experiences them, and some get back to life/work sooner than others.

Please check out the ostomies forum (use quick jump) and meet some of us that have stuck around to share our stories. Many posters stop coming back and I think that is the biggest testament that they are living liife!!

Quality of life is the best gauge for when surgery is needed

Thanks you guys... I can't believe I posted such a *long* post! Definitely a confusing time for me. Quality of Life is what I'm trying to understand. Which would be better. I am not offended by ostomies, I see that they save lives and give freedom. But, I've heard about skin issues that scare me and... I've also read that sometimes sex is painful after the rectum has been removed. Now, I haven't even tried to date in a very long time but that does scare me. I don't wish to be alone my entire life (though I can't guarantee anything with or without an ostomy. But, dating with one scares me, then to hear sex hurts...

I read everything I can on the Ostomy forum. I've been in touch with a couple of new ostomates, but I need to call UOAA or my ET nurse and see if I can talk to someone who's done it for a while. I emailed UOAA but didn't get a response. And, my ET nurse didn't suggest it. My GI did yesterday though.

My biggest hang-up is that Prochymal *did* work. It healed me 50-60% in 30 days (by scope, not subjective CDAI). And if the drug were approved I could repeat that dose and heal ... how much more? And that is 2/3 of the way done and fast tracked. It's already approved for Graft vs Host disease. The idea of permanently making this decision when I don't know the trade-off is harder knowing that this drug is closer to making its appearance on the market.

I would not say no to a temp ostomy. If I were allowed to leave in the rectum and just *see* if it heals. I mean, isn't bowel rest supposed to heal the guts? If it would not cause pain and I'd not worry about continence issues (because of the ileo) then I'd walk the line. That's what I wish I could do. Just get the temp ostomy and see how I feel about things like skin issues, etc. Then I could make my decision knowing which I felt more comfortable with. Again, I'm not going to the bathroom 20 times a day. It's mostly just in the morning that I worry about continence issues. And... the past couple of days I've woken feeling pretty clear headed and well - with energy.

I probably will need an ostomy someday, so I agree that it seems silly to wait... But, I just don't know if I'm ready for permanent.

Thanks again, guys. I so much appreciate your willingness to be supportive! It's hard to go through this without anyone. I have a couple of friends who listen. My mom is against it (fear way worse than I feel) ... My dad is good about it because he HAD UC. His "went away" about 15 years ago.

What a tough decision! I offer you one more option to try if you are not quite ready for the surgery. You could try enteral nutrition (special full-liquid diet), which is an old treatment for Crohn's disease that has been validated in randomized, controlled clinical trials. Based on the available evidence, the chances of success are a little better for people with small intestinal involvement than those with Crohn's colitis only, but it does work for a decent percentage of the latter as well. Given the fistulas and the rectal involvement, you'd probably need to give it at least a few weeks to see substantial benefit, but at least within the first couple of weeks you're likely to start feeling better if it's going to work at all. Just a thought.

With the temporary ostomy, they may be worried about the risks of repeated surgery given that you've been quite ill, and think it safer to go ahead with the prominent ostomy if you are going to undergo surgery.

Regarding enteral nutrition vs. TPN, the advantage of the former is avoiding the risk of infection and liver damage that can be associated with the latter. Used correctly, you take enough of the enteral nutrition in order to gain weight, not lose weight. If you began to lose weight in spite of adequate consumption, they would likely either switch formulas or switch to a different treatment because that would be a sign you were not responding.

I agree that it is very important to be on the right page emotionally when you have a big decision to make, so I hope you will have the time you need to think things through.