Why not just remove my colon?

This may be a stupid question, but I'm recently diagnosed, and Id appreciate an answer to this question. Right now my doctors are tweaking the 5 ASA drugs to figure out if they will work. I am on a "three-month plan" so to speak. If 5 ASA's fail, I go to Uceris, if Uceris fails, we go to Humira. I have a very hard time dealing with the psychological effects of prednisone. I cant sleep for days, I get anxious, like crazy anxious,as well as irritable and depressed. I feel like Im manic depressive on prednisone, plus the lack of sleep for days makes me unbearable to be around. Obviously if Im in a flare and bleeding to death, Ill have to do it, but otherwise, no thanks.

My doctor gave me a pamphlet entitled, "Could it be time for a biologic?" Propaganda from Humira. Rare but serious side effects include dying from lymphoma. Right now I bleed out my rear, but Im not dying from a rare, but serious cancer. That terrifies me. I have two children under the age of three. I want to see them graduate. Yes, I understand that removing one's colon takes months to recover from and is a long process. I understand that food goes "right through you" and you need to be near a bathroom after eating, but why not spare me the misery and scary side effects and just remove the SOB? I know there's more to it and the answer cant be simple, so please enlighten my ignorant and anxious self.

As always, I am greatful for your time, energy, positivity, and knowledge. I hope this day finds you well!!

Food you just eat doesn't go right through....it's eating that triggers peristalsis and the stool or whatever (blood, mucus, colon fluids, etc) in the lower colon will be purged if you're flaring or not able to hold it..

Your lifestyle and quality of life is subjective. If you're not wanting to try stepping up to immuno or biologic meds, then push for colon removal.

Explain what "supposed to be on Lialda" means exactly.

Are you using the Rowasa and supps daily?

Have you tried steroid retention enemas yet?

I know I'd have a difficult psychological time with prednisone and would avoid it like the plague, and I wouldn't want to use biologics or immuno. But I've not been put in that situation since the 5ASA oral/rectal have worked for over 25 years.

q

I had mine removed because I had severe pancolitis that wouldn't respond to any of the meds. So I really had no other choice. If you have choices left...which you do....I would try them first. Having said that, I am very happy I had the surgery. I don't ever have to deal with UC again and I am off all drugs. Some people don't want to take all those drugs and opt for surgery first. That's fine....everyone is different and that's what makes your question tough to answer. You have to weigh everything out and look at your quality of life as well.

PS- just to comment on something you wrote: Food does not go "right thru me". Far from it. :)

The odds of biologics giving you lymphoma are statistically rare, 6 in 10,000 or 0.006% which is hardly something to loose sleep over.

Surgery has risks as well, removing an organ is hardly something to be taken lightly. The risks are less than 5%. Surgery helps those with no response to meds, and/or severe disease. Surgery doesn't make one like they were pre-uc, you still poop 4-6 times a day but without urgency. It's an improvement for some. Others who are in remission with uc meds poop once a day and their large intestine looks normal under a scope.

garylouisville said...
What do you mean by "supposed to take Lialda"?

I have a bottle of Lialda sitting in my cabinet. I just changed doctors to be seen at the Hopkins IBD Center. My new doctor said I can try to take Rowasa PM and Canasa AM for one month. If it doesnt work, he will add 2 pills of Lialda. If that doesnt work, it will move to 4 pills in the AM. Right now, I dont take it because I am nursing a baby. I know both Rowasa and Lialda may transfer to breastmilk. I've been told it is less likely with rectal meds.

garylouisville said...
Are you actually on prednisone now or have you taken it before or have you not taken it yet (it's not in your signature)?

I have asthma also, so I have taken prednisone "bursts" for 5-7 days and it makes me a complete nut job. I hate to admit it, but I have a Generalized Anxiety Disorder, and it makes my condition so much worse.

garyloiusville said...
What are your current UC symptoms?

Right now on the canasa and rowasa, I have no symptoms. If I miss a day (which thanks to your sage advice I try very hard not to do. thanks for that by the way, my last two doctors never mentioned to me that I needed to take the meds continously. one even refused to give me a ballpark answer for how long I'd be taking them.) anyways, if I miss a day or two I have a bloated feeling, blood in my stool, urgency, and an sore/irritated bum. Mostly it feels like someone sandpapered my bum and the tract that precedes it. I dont know if that makes sense to you, or if that is too graphic.

garyloiusville said...
Have you been getting better?

I do feel like I am getting better. I had to ride out intense D after starting rowasa, but it has improved and my energy is back. I have way less abdominal pain/feels like bloating. I still have to avoid certain foods, but I think that will always be the case.

I am glad you mentioned reading the resources. I looked at it once, and I became overwhelmed by all the protocols for supplements and what not. I have no idea what supplements to take and right now I am too sick to be able to work, so my family is living on one income. I dont have extra cash for probiotics, supplements, etc. I am going to ignore what I dont need and read the rest. Thank you for your feedback and encouragement. I think that you are someone who could be very helpful to me because you also have proctosigmoiditis. Thank you so much for your time.

Also, great advice to find a doctor who will work with you. I left my second doctor last week because he was hell bent on me going on pred for 4 months. The weenie left a voicemail that he was calling in an RX after I called to ask a question about rowasa. Then when I called and said I had concerns and wanted to talk with him about the risks and benefits, the D-bag sent me an email about how I was non-compliant patient. You cant call me, but you have the time to send me an email about noncompliance?! Moving on.

Thanks again!!

Post Edited (AlohaYankee) : 6/12/2014 9:18:31 PM (GMT-6)

I have a very fast moving and severe form of pancolitis (entire colon) and I tried m esalamines, steroids, and biologic. Remicade.

I highly suggest trying atleast one biologic before heading into the OR.
I chose remicade because it had better #s for UC remission.

Unfortunately no relief for me. So my colon is coming out in a few weeks.

But with your form of UC... I really think you should try couple more meds for complete remission before going through months and months of surgery and recovery. Especially since you already say money is tight with only one income, etc.

But thats just my opinion :D

ks1905 said...
And I have to say that surgery is very tough and is a long road but in the end it has been great for me.

I am glad that you found something that helped, even if it was difficult. It is so kind of you to be on this forum giving people hope and support! Amazing. Your parents raised you well to show such kindness!

I am going to do my homework!! Thanks for your suggestion. I dont want to jump to colon removal, but I want to see my children graduate. I dont want to risk something crazy like lymphoma, even if the chances are small.

Guardian7 said...
I asked a doc the same thing last year after my antibiotic misery, and he was fairly objective about it.

I will have to look at your previous posts to see what you mean. I am so sorry that you were miserable. I hope you find something that brings you good health! Thanks for your feedback.

embersglow1 said...


I chose remicade because it had better #s for UC remission.

Thank you for this information. Is remicade a chemotherapy drug? I have to take a look at it. I am sorry that you arent feeling better and I hope your surgery goes well! PLease keep me updated. I am going to keep trying a few more meds. Im hoping the change up in 5 asa's will do the trick. Good luck!

I was wondering about that myself. I had never heard you could not take mesalamines while breastfeeding and thought I had seen many here that did with no problems. Sometimes I think when doctors don't know and are too lazy to look it up they just tell their patients to avoid certain drugs.

I have been nursing on Lialda as well and was told by several doctors and our pediatrician it was fine. The baby had no problem with it.

Pluot said...

Guardian7 said...
I asked a doc the same thing last year after my antibiotic misery, and he was fairly objective about it. He erred on the side of not removing it because of possible inflammation in the small intestine, making a colectomy an unnecessary risk for me.

Backwash ileitis is not statistically predictive of j-pouch failures or complications. If the inflammation was not consistent with backwash ileitis, that's a different story. I also had backwash ileitis and have not had pouch issues.

Good to know. Thanks.

Why now said...
I have been nursing on Lialda as well and was told by several doctors and our pediatrician it was fine. The baby had no problem with it.

Thank you for your feedback. Im so glad you had a good experience and baby was happy.

My doctor looked it up and thinks it is fine, but they really dont know what the long term effects of Lialda are on a nursing baby. I just worry about it too much, and to be honest the rectal meds seem to be working. I keep saying Im going to wean him, as he is 10 months now, but this is likely my last child and I am holding on to this special time.