How do you know if its time to consider Surgery?

Please keep in mind that these procedures are done everyday and go off without a hitch. Success is in the majority. The surgeries are tough....I won't sugar coat it.... But totally worth it in the end. I love my j pouch.

lol. Spending a year and a half into researching the drug I've been on for 6 months meant nothing. I was simply pointing out the misinformation of the drug. I've contacted Dr. Jill Smith and Skip's, but that shows my ignorance of the drug apparently.
Just wanted to help.

Post Edited (Sibby) : 5/9/2013 8:21:32 PM (GMT-6)

Wow herbgarden... You are very much educated and involved in your sons care. He's lucky to have a supportive parent like you . Lol my father doesn't even know that the disease is chronic. It's sad that some people could stay so distant and uninvolved in the care of their loved ones.

I am in the same boat. I had to increase prednisone and discontinue the LDN. I wish I could quickly taper the steroids. I have to taper mg by mg.. or maybe by 2mgs the most. I am on 13mg of pred, was on 15 a week ago and I can notice my body getting pissed off. When I was your sons age, I used to be able to do the quick taper with no problem and then the doctor would always give me a maintenance drug (they've given me metronidazole, sulfa drugs (i was allergic), asacol, pentasa) I never took those drugs, as I was able to come off of prednisone and once I was off the steriod, I was in remission. I was in remission for 5 years with no drugs, but the doctors frown on it... I know now, why that's so... bill my insurance and collect some $$$$.

He can make changes to his diet and he will if he wants to get better. Oh, ya know what makes my gut hurt, the artificial sweeteners. The ones they use in sweet & low or crystal light. If he likes soda, you can make Kefir soda for him and it's cheap, easy to make and is full of healthy bacteria... not to mention it's yummy when adding fruit juice to give him his sugar fix.

herbgarden said...
Sweets7,
Thanks for all of the information. I will definitely look at your blogs. Mayo was primarily to diagnose his PSC, they aren't involved in his UC care. I get the whole point that you're making about the body and how these meds just supress symptoms. Eventually, the body will win and it will reject the meds. We've been to an integrative doctor and my son has been on LDN (1.5 mg transdermal). However, with now having to start Prednisone again, we will have to discontinue the LDN. You can't take LDN if you're on immunosuppressants. They will work against each other. My plan is this: Start Prednisone with a quick taper, start Vanco and resume LDN in hopes of remission. Also, if I can just convince my son to avoid sugar, and white products, that will help tremendously. He has given up soda, so I know he can eliminate the sugar.

Somedude - "his loss"??? there's no need to say things in a crass way. We are all trying to do the best we can and maybe he is going on what his intuition is telling him. My intuition is always right and when i go against that gut feeling that I know I should or should not do, things don't end up going so well. Also, there's smarter therapies out there. Remicade (when i was on it) made me feel toxic and didn't improve my quality of life much at all, plus my hair fell out and I was chancing the risks of the side effects from that medication for what? THey aren't for everyone, and it's not Remicade or surgery and that's it. It's not this or that.. period. Maybe that's what you know because of your amount of research. Research harder and then see if you agree with your post.

at sweets,
I did enough research, I am on a restrictivr diet, I did the fecal transplant trial, I am on ldn, I tried the 5asa, dont tell me about research. you dont know how much I did or did not or anything.

and yes his loss. whatever works as long as it gives quality of life and things are good.

Where do you get the pascalite clay? Can't find it in the health food store.

Oh dear...Suggestions - candles, many air fresheners, fans, incense, oh and matches (they say the fumes of the match eliminates the odor)... I'm thinking that he's need to light the whole book... scratch that idea.

I hope he wants to take some interest in learning about his conditions. If he isn't motivated to try or change different things in his life, it wont matter how much research you do. Has he researched this himself at all. You do a lot for him, thats a blessing, but he needs to take the initiative too. It's his body.

herbgarden said...
I also have some Pascalite Clay at home and I think I will have him start drinking some of that too. It will help absorb some of the bacteria. I know bacteria is at play here because the smell of his stools is just horrible and it literally stinks up the whole house! Poor thing!!

Hi Herbgarden (like the name). I just wanted to give my input from the other side of surgery.

I knew it was time for me when I was on Remicade and Prednisone and still had an accident at work. My quality of life was awful. I was so worn out. I only worked part time, but I couldn't even keep up on housework. I was treating anemia all the time. The number of BM's I had wasn't that great (maybe 10?). I also had been dx'ed in July of 2011 and had never been in remission except when I was on Pred. Right before surgery, not even that was working. I finally had surgery last August of last year. The biggest factor for me was quality of life. Remicade wasn't working after three doses. It had initially worked great, but then just quickly lost its effectiveness. I had little faith in Humira working so I didn't even try it. I don't know much about PSC, so I have no input on that aspect. I just know it makes things complicated.

Before I had surgery, I had accepted that the bag was possibility (although slight), but I also thought it would be better than living with UC. Now that I've had the bag for six months, I think I was right.

I've only had the colectomy so far. I had to wait at least six months for the steroids to get out of my system as they affect healing (I was on them for a solid year). I also need to lose weight, so I am working on that. Cleveland Clinic states say that 92?% of the people with a jpouch are happy with it. 4% end up with an ostomy anyway and most of those might have had Crohns instead of UC.

Now that I'm doing better, I realize just how much UC had hit me. It was like being sick constantly in terms of exhaustion and feelings of well-being. That shouldn't be surprising because I was sick constantly, but the other feelings just kind of sneak up on you and they seem less horrible than they actually are.

Now for the not so good. My immune system hates me. As I was going off Pred post surgery, I developed horrible arthritis. I thought that I was tapering my Pred to fast, but even after slowing the taper I still had horrible arthritis (like, swelling hands and feet, can't walk type of arthritis). I also have quite a bit of output from my remaining rectum. This includes blood and mucous. They left quite a bit of rectum in as the other part of the jpouch requires delicate work...which my tissues were not set up for after the steroids. After visiting a Rheumatologist, my Dr.'s determined that I had IBD related arthritis. Since it was so bad, I went on Humira. During that time, I also developed auto-immune skin ulcers around my stoma, called peristomal pyoderma gangrenosum. They required steroid injections directly into the ulcer, so I had to go to my surgeon's office. Now I've developed some additional symptoms and it turns out that I likely have Behcet's disease. It's another auto-immune condition. So I will likely be on some type of drug for quite a long time. I'm not happy about it, but I wouldn't be happy if I couldn't live some type of normalish life.

Even if I have Behcet's, even with the skin ulcers, and even with all the illnesses I've been getting because I'm still on Humira, I still feel soooo much better than I did with my full UC colon. I don't know what the Behcet's dx means for my jpouch surgery, but I don't regret getting my colon removed. I felt that awful and didn't even realize how bad it was.

Your son is very young, I feel that's all the more reason to get things under control. I lived for a year as a very sick hermit. It's not that I didn't want to do things, I was just not physical able. I'm a bit older than your son (30 at the time of surgery) but people would still look at me and say "you're so young to need a bag." But I was also too young to live like I was living and I wasn't willing to experiment anymore with surgery. If your son's quality of life is severely impacted, I can definitely see why he would be considering surgery.

I don't know anything about the Vanco drug, but if you and your son think it could help (especially with the PSC), then go for it!

Good luck to your son and your family on this journey.

Quincy- I decided not to do the clay. Instead, I am doing Psyllium. He seems to be getting better at this point. He's had 3 doses of Prednisone so far, and I think it's beginning to help.

Good!! Glad to hear that he's showing some improvement. Prednisone usually gets the inflammation down pretty quick. Hope things only get better from this point fwd :)

Somedude said...
at sweets,
I did enough research, I am on a restrictivr diet, I did the fecal transplant trial, I am on ldn, I tried the 5asa, dont tell me about research. you dont know how much I did or did not or anything.

and yes his loss. whatever works as long as it gives quality of life and things are good.

How did the fecal transplant work out for you? I'm looking into it, but I think the FDA has put a hold on procedures ... as always interfering with safe and effective treatments to do the nonsense that is just making people suffer a little longer. I wrote more in a post that got lost . I don feel like typing it all over again.. anyway, what were the results for the fecal transplant? were you pleased.... at all?

How did the fecal transplant work out for you? I'm looking into it, but I think the FDA has put a hold on procedures ... as always interfering with safe and effective treatments to do the nonsense that is just making people suffer a little longer. I wrote more in a post that got lost . I don feel like typing it all over again.. anyway, what were the results for the fecal transplant? were you pleased.... at all?"

Well, it didn't really do anything for me, I'm sad about it. I had high hopes for it. I was in the trial with a dude from Orleans. He also didn't get any results. We met a girl there that also didn't get results. Mackster on here was on the same trial and he didn't experience any significant results.

I dunno what it is. Why it didn't work great for us.

hmm I think you misquoted someone, I didn't write that and I am canadian.