Moving forward... Or not!

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/3/2010 7:22 PM (GMT -7)   
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.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

Post Edited (sr5599) : 8/3/2010 9:24:50 PM (GMT-6)


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/3/2010 8:29 PM (GMT -7)   
That is a lot to think about. On one hand, take it all out and you would probably feel so much better, but be left with a permanent ostomy. On the other, wait, and risk that one day you might require emergency surgery.

I personally would go ahead with surgery. I know it's easy for me to say...I wouldn't be the one with the ostomy, but if I had the choice of planned surgery vs not, I'd want to plan it all.

Do you think that regardless of the time, you'll need the surgery anyway? That would definitely impact my decision. Given that you've failed all the meds, I'd guess that surgery was inevitable....so really the question is whether or not it's worth what you're going through now to wait for it. It's easy to get to where you are and be able to deal with it, but wouldn't you feel so much better not having to take pain meds, then everything else to combat the C.

Maybe you should pop over to the ostomy board and pose the question to them...whether or not they would have dealt with things for longer or would have gone ahead with surgery sooner had they had the choice. They could tell you more about having an ostomy also, and how it impacts their lives. Just a suggestion...but sometimes looking back you would do things differently, and they could provide a different perspective than some of us in this forum can.

I may not have been much help, but I hope you come to a decision you're comfortable with.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 8/4/2010 3:26 AM (GMT -7)   
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 sad 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 cry

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 turn 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 yeah
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/4/2010 7:28 AM (GMT -7)   
I think Ohio's saying says it all "Quality of life is the best gauge for when surgery is needed". Do you really want to keep living day to day as you are? Not able to really enjoy time with your daughter? Or wouldn't it be better to get on with living your life again? These are questions only you can answer, but in my opinion you have really suffered enough. JMHO

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/4/2010 11:04 AM (GMT -7)   
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.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 8/4/2010 2:25 PM (GMT -7)   
Well as a member of the "permanent" club I would have the surgery. I wouldn't put up with a lot of what others on the site would and do but obviously we all have to make our own decisions. It seems a lot of people seem to think the world comes to an end if you a have a permanent ostomy - I'm here to tell you it doesn't. So continue with your "crohns moments" until you ready to make take that step which will get you a better quality of life for yourself as well as your daughter.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 8/4/2010 3:02 PM (GMT -7)   
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.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/4/2010 6:59 PM (GMT -7)   
cleo35 - I am simply *not* opposed to an ostomy. I just wish they would allow me to do the temp first to see if the rectum would heal with the diversion! That is what I *want*... I can't help but be afraid of what I don't know. I did not mean to offend you in any way. I said, specifically in my second post that I see an ostomy as life saving and freeing. That doesn't mean I'm not scared. Honestly, according to my doctor, most people *are* scared and nervous of getting one.

And, I do *know* that the mesenchymal stem cells helped me to heal. So why wouldn't I want to be able to reverse it when I have access to that?

I have fears of skin infections and irritations, sex hurting, etc. I am not getting any information to allay my fears.

Writer - Thanks for that suggestion - enteral nutrition. I've considered TPN. I'm quite thin, so I wonder if they'd worry about me losing more weight. But, it seems to me that if my guts would heal on this type of treatment it would be information to use in hopes of getting the temporary ostomy. If bowel rest helps, why wouldn't a temp ostomy allow for healing? That's what I don't understand... Why won't they just say I can try the temporary. Then I'd be ready to sign up... Even if that means I had a second surgery later when I was emotionally ready to accept removing the rectum?

Because, not all of us respond emotionally to things the same way. I tried Tysabri, while others would rather get surgery. (I was not so scared to not be able to risk the PML) I drove to Seattle for 2 years of trial for the mesenchymal stem cells... Yet, I am scared of the unknown for the rest of my life while others might embrace it. It's all very personal and nobody is right or wrong. I think we are just here to try to support one other through difficult times.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 8/4/2010 7:14 PM (GMT -7)   
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.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 8/5/2010 6:19 AM (GMT -7)   
sr: first, apologies for coming on so strong - I just get frustrated when it sounds like posters feel an ostomy is the end of life as they know it. It is, but for most people in a good way. I didn't quite understand this part of your last post: "I have fears of skin infections and irritations, sex hurting, etc. I am not getting any information to allay my fears." If this sentence is in relation to an ostomy let me say that I've had mine for more than 4 years and have yet to have a skin issue - a good ostomy/wound nurse and a fastidious attention to cleaning around the stoma is your best defense. The part about sex hurting - I'm not sure what you're asking. Do you mean with an ostomy? I can assure you it has no impact on that :) If the rectum is removed you may have to adjust positions so that the rectal area is not pulled on - especially while it's healing. Hope this helps.
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