Question about Crohn's meds after ileostomy surgery

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Calico

I was just wondering how many people who have Crohn's disease with an ileostomy are on preventative medications, i.e. Humira, Simzia, Remicade. And how soon after your ostomy surgery did your GI doctor put you on these meds, or were you always on them?



Before my surgery, I had been on all the typical meds over a 10-year period, starting with oral meds, then 3 years of Remicade, then a few months of Humira. But a couple of months into the Humira treatment, I started having a reaction. It turned out to be vasculitis. While I was going through that, my GI doctor was diagnosed with stage IV bladder cancer and died within months. It took a long time to figure out that it was the Humira that was causing the vasculitis, so I kept using it. But once I figured it out and stopped using it over the next year, I was not on any medications for my Crohn's AND I was dealing with vasculitis and every single one of its symptoms, and was very sick, so I moved back home with my family and had to quit my job.



Once I moved, I was in a different state with no doctors, no Crohn's meds, and started having the worst flare-ups I've ever had in my life, which led to my ostomy surgery. But while I was in the hospital, my insurance got cut off, so I did not have any care after. While I was in the hospital, I literally had every kind of complication possible happen, and the last 1.5 years have been spent recuperating. But again, I have not been on any Crohn's meds.



I'm worried that since I have not been on any Crohn's meds, I am just going to stay this sick, and a flare-up will always be right around the corner. I have insurance now, so I am about to see the doctors who I was seeing just before and during my surgery.



It seems like I should be on something for the rest of my life to prevent losing any more bowel loss.



Thanks, Nora "Calico"

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Steve7809
Hi Nora,
My GI doctor put me on Humira right after being diagnosed with Crohn's. Shortly thereafter, I had a colonoscopy where she found colon cancer. About 4 months later, I underwent ileostomy surgery and at that point, she took me off of Humira, saying that I shouldn't have any more symptoms. I did end up having symptoms again, so she put me on Colazol. Over time, I started having severe joint pain, mostly in my shoulders and knees but occasionally in other joints. My primary doctor sent me to see a rheumatologist (which was booked 7 months out) and gave me hydrocodone, which I still take, and later fentanyl, which I still take also. My GI wanted to put me back on Humira, but I was reluctant, so the rheumatologist put me on sulfasalazine, which is supposed to work for Crohn's and arthritis, but it hasn't really been helping. Now it looks like Humira is my only choice. I see my GI in a couple of weeks. I assume I will start Humira again at that time after four years of having my ileo. Not sure if this helps or answers your questions, but I was hoping you could tell me more about this condition that Humira caused for you. Thanks, Steve.
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MissMeganM

Hi Calico, I have Crohn's and an ileostomy but I am not on any medications. I take a baby aspirin a day, a multivitamin, 50,000 units of vitamin D once a week for the next 4 weeks (then I drop down on the dose) and I have B12 injections once a month. I still have active disease according to a CT, but I have no symptoms. I have never taken Crohn's meds and am not now.

If I start to have problems, I'm sure I will be put on them. But personally they are something I would like to avoid as it seems that those medications tend to make people sicker, not better.

Sophie96

Hi Calico, I was unsure exactly what you mean, even though you now have the ileostomy, do you still have Crohn's flare-ups?
I had symptoms for years (upset stomach, sickness, pain, tiredness) and no doctor could work out what was wrong with me until I went to A&E with terrible stomach pain and scans revealed a perforated bowel, so I had an emergency op and ended up with a colostomy. My Crohn's was so bad because it had been left for years with no treatment that they had to do two further ops because my bowel kept perforating, so I now have an ileostomy and since having them I have had no flare-ups at all and am on no treatment for Crohn's at all. My Crohn's doctor told me to come back to see him if/when I had the reversal because he said that's when I would need treatment.

Sophie x

WOUNDED DOE

I am currently not on any meds for my Crohn's either... Doc had me on Remicade for years but the side effects were horrible, and even though I've been off Remicade now for years, the side effects never went away. In fact, they became worse and am now having more problems because of it :/ Since last April when FDA was forced to take another look at the 'drug', they now have it "Black Boxed" and unfortunately it does change our DNA due to the fact that it is derived from the antibodies taken from the spleens of mice... This is just a caution and word up for everyone to research any suggested medications very carefully before making the choice... I currently just try to keep myself hydrated and nibble every few hours, extra B vitamins and other vitamins much like MissMeganM... Good luck everyone! Much love to you all!



~Doe
 
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Past Member

Hi Calico,
I think with Crohn's we have to be careful as it is a trickier disease than UC. It is systemic and can affect anywhere in the GI tract. Although one source of inflammation may be removed, it can move to another area. I recently had an ileostomy and have dealt with Crohn's colitis, meaning Crohn's pertaining to the colon. I am taking a biologic currently as I am not convinced Crohn's is gone because my colon is not being utilized.

For you, I think it is worth pursuing a gastroenterologist consult at this point for information on your options and what to do next. It is a difficult decision.

Jaxdog

mara727

I was on Lialda, so is my son.

Past Member

Hi, I have Crohn's and an ileostomy. I'm not on any medication after the surgery. I was on immunosuppressants for two years before.
I'm now super fit, 10 months after the ileostomy, and ready for the rest of my life.

Beaner

I was placed on Remicade before my bowels perforated and having a colostomy. The Remicade did nothing for me because my Crohn's was too inflamed at the time. After my colostomy, I was really nervous about taking any drugs, but the GI said Imuran was meant to keep me in remission. I had a Hartmann's reversal 18 months ago, take Imuran daily (100 mg), get bloodwork every six months, and have had no symptoms at all. I was also told, warned actually, that most people who are going to have a repeat of bad flare-ups usually have them up to two years after the reversal. In other words, if you make it two years without a flare-up, your chances are good that you could stay in remission for years. He also told me to continue the Imuran for life, even though I may feel fine, it would be a mistake to stop it. I do have a problem with painful arthritis, take Tramadol for it, but many times it doesn't help at all. Arthritis can be one of those things that pops up with Crohn's, among other things that I have discovered....
One more thing I have noticed when talking with people with Crohn's. Many of us are very low in vitamin D.....interesting.....

Past Member

I am so sorry this has happened. I had 3 surgeries beginning with the colostomy, then a reversal, and then Crohn's and Colitis was found and ended up with removal of the rectum, anus, and colon and a permanent ileostomy. My doctor said that there is a 35% chance I might have it come back (the diseases) but he thinks that would be very rare so I just hold on to that thought.



I never had any of those meds but my gastro wanted me to go on infusions, etc., and I refused as I spent a year and a half in and out of hospital/rehab centers and said I feel good now, and so long as I have had this surgery and feel good, I am not about to enter another hospital or go on any meds unless I have to and thank God, I am not on anything! It will be one full year after the last surgery in October so I am one grateful woman!



I also have COPD, type 2 diabetes, polymyalgia, and I take and feel my taking Vitamin D (2,000 units I think—I would have to get up and find out—was very low MAKE SURE YOU ARE NOT LOW AND THIS CAN BE DETERMINED WITH A BLOOD TEST, AND I take a magnesium supplement, glucosamine/chondroitin, calcium, and vitamin and a baby aspirin. I am on Advair, Spiriva, 2 BP meds, Thyroid med so I do all I can to keep up a healthy immune system and RA doctor said Crohn's can lead to RA or with me a form of RA. You just plow through what you need to and keep a positive attitude and do all you can to stay healthy and eat right, and some form of exercise.



Good luck!

Calico
Thank you all for the responses. I was actually surprised since I thought that having Crohn's, that being on these medications would be for life. I thought that it was just because of my situation (not having insurance for a long time after my surgery, then being passed around from doctor to doctor and not being treated by any of them) that I was never put back on any Crohn's meds.

But I did just have a colonoscopy Monday, and I had some blood work done the week before, checking for inflammation in my bowels, and some other markers, I don't remember. I have to wait for the biopsies, but after the procedure the doctor came and told me that I still have proctitis (I've had that for a long time now, just never treated, I'm seeing a second surgeon for another opinion about having my rectum removed since it is very diseased and has stayed infected since my ostomy surgery). He also said that there was inflammation in my small intestine, and said that he needed to see me in his office to discuss the rest and to put me on something for the Crohn's. He said that by the time I come in he will have the biopsy results in and can make a more informed decision at that time.

I've also been dealing with gastritis and H. pylori, and I had an H. pylori test done Friday before the colonoscopy, plus the doctor took stomach biopsies. My last colonoscopy was in September 2012 and I had all of it: gastritis, proctitis, H. pylori, intestinal metaplasia, and the doctor never treated me. The symptoms have been consistent for the last year.

I also have problems with my joints. In fact, just before my ostomy surgery, I lost all of my teeth and had to have my upper and lower jaw reconstructed due to bone loss. My knees are getting so bad that I can barely walk anymore. Going shopping is completely impossible anymore, I can barely walk long enough to run into a pharmacy or corner store. It doesn't matter if I'm sitting, standing, walking, or just laying down, my knees always hurt so bad. My right hand/wrist is getting pretty bad too, and my right ankle. I was a paralegal for 17 years and would spend 12 or so hours a day at the computer and never had any problems. Now I can hardly send a short message, or it takes hours to type. Sometimes I'll start a message and work on it over a few days to give my hands a rest. So far the doctors just say that's all just part of Crohn's, it's a full-body disease. In the 10 years that I've been sick, no doctor has ever explained what Crohn's was and what it would do to my body, not until I got so sick I had to quit my job and move out of state to be with my family because I could no longer take care of myself. Then all of a sudden they are taking my large intestines. I always knew "a bag" was a possibility but I never fully understood what that meant, and no doctor ever even mentioned the possibility of needing a bowel resection or a total colectomy.

Well, I have several appointments next week. I'm going back to the surgeon who did my ostomy surgery, I'm going back to the GI doctor that was treating me before my surgery, follow-ups for all the tests I've recently had, and hopefully some answers.

I appreciate everyone's responses and sharing their experiences.

Nora "Calico
bshawn
Hi Calico,

I was diagnosed with UC in '96, had my colon removed in '01, and have had an ileo ever since. Up until last year when I was admitted for severe anemia, I'd had no complications and was drug-free. Through a number of various tests, endoscopy, capsule study, an ileoscopy with a biopsy, it was determined earlier this year that I actually have Crohn's and have been in a mild to medium flare-up causing a very slight blood loss that took months to finally manifest as anemia.

I fired my GI Doc and found a new one. We discussed various treatments, primarily the anti-TFs, and I started Cimzia in May. The initial treatment was two 200 mg shots at day 0, 14, and 28, followed by 2 shots every 28 days. At this point, I've had 4 shots. I haven't seen any of the most common side effects: upper respiratory infections (flu, cold), rash, and urinary tract infections/bladder infections. So far, so good. I plan to follow up with my GI in 3-4 months.
vikinga

OK. I am confused. Calico or very underinformed. I did not think you could have a colonoscopy without a large intestine.??? Someone please shed some light on this for me.
Thanks

rvhumbug
OK, let's start with some basics. I've had my ileostomy for 51 years (surgery in 1962) for (originally) UC. I did not have any meds until 2004 when I had a third revision and was then diagnosed as Crohn's. I take a low dosage of Cipro along with Pepcid. I've had a couple of flares which have been taken care of by increasing my Cipro.

As for having a "colonoscopy" with an ostomy, understand that the term "colonoscopy" is generic for lower bowel visual exam. I have had one every year since 2004 through the stoma without any problems with the procedure.

Hope this helps.
Penguins7
Hi Calico,

This is a very good question that has been on my mind since my surgery. Meds or no meds. I suffered from Crohn's for over 20 years and had the surgery in October 2012. My flare-ups have always been in the lower large intestine which was removed during my surgery. I was on all the meds over the years and not sure they did me any good. Currently, I am on no medication and feeling good but the thought of going through another flare-up is always in the back of my mind. I guess my question would be is there any scientific proof that Asacol, 6MP, and the rest of them are really effective for preventing flare-ups. I got flare-ups while I was on all these drugs. I think for now I am going to stay the course of med-free living. Good luck to you. Rod
sony34

Hello,
Our stories sound so similar. I have not been on much medication since my surgery either. I have had my ileostomy since late 2008. The GI doc said he only wants to give meds on an as-needed basis, not a daily regimen, because the body becomes immune to it. Hope this is helpful.

Mark Strobel

After my surgery, I no longer take prescribed medication.

vikinga

I have come across a stunning article on video about treating Crohn's via diet. I will try to post the link here. Not sure if they will permit it.
http://nutritionfacts.org/video/achieving-remission-of-crohns-disease/

Otherwise, the website is "nutritionfacts" with an org afterwards. Look up Crohn's.
Very interesting.
L

vikinga

I just noticed an ad on this page for "PillCam," a camera pill that can photograph the inside of the GI tract. Has anyone here tried that? Sounds ideal.
L

sony34

I have had that done and it is an all-day procedure and you can't eat the day before or at all that day, but it definitely gives them a good look on your inside.

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