New here, but need your advice quickly

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

G

Gravity Jim

Guest
My name is Jm, and I have Crohn's, restricted to about 3 feet of the ileum (no involvement of the colon). i am 50 years old, diagnosed about 7 years ago.

Since then I have had several hospital visits, some for obstruction and a couple for abscesses caused by inflammation (although no imaging has ever ben able to classify these infections as fistula, they are certainly related).

I can't take Remicade (allergic reaction when I was first diagnosed) and seem to be completely steroid dependent... it responds to nothing but prednisone.

I have been taking some dosage or another of steroids for nearly two years, and while it hasn't caused any tissue damage, I am now diabetic. I can't take the steroids anymore.

There are two choices at this point: Humera, which is very expensive and untried, only just now approved for Crohn's, or small bowel resection. Under pressure from my wife, I scheduled the surgery for next week.

But my GI doctor seems reluctant to support the decision.... he was obviously surprised that I wasn't trying the Humera.

What are your experiences with Humera? With small bowel resection not involving the colon. FOr example, my surgeon says I have a less than 5% chance of requiring an ostomy post surgery... he expects that I will have a better than average, even ":excellent" outcome. But I don't want to go to "the last resort" if there are reasons not to.

I'm sorry to just barge in here and ask this question, but I really need some advice. i hate being put in the position of making the decision... I'm not that smart!
 
Humira is in the same class of drugs as Enbrel and Remicade. These drugs are called anti-TNF drugs or TNF blocker drugs. TNF is a small protein called a cytokine, which has a major role in the regulation of the immune system. Anti-TNF drugs confine TNF and obstruct the reaction, which causes the abnormal joint inflammation. These drugs have shown to work in Crohn's in the short term but have not played well as long term solutions with many reporting the drug stops working after a year or two. Studies have also shown in all three drugs an increased risk in some cancers especially lymphoma, and in some rare cases death has occurred from infections, tuberculosis, or other reactions associated with the drug class. Most of these bad side effects are very rare and within the norm of approved drugs by the FDA, however you should know the facts.

I would also recommend surgery as a last result. Always get a second or third opinion from a doctor (or GI or naturopath) and I would also try some natural remedies before resorting to surgery. I had no choice but to have surgery, but would never recommend it unless it was necessity.
 
Also, here is the Mayo Clinic's recent report on Humira:
(Mayo Clinic Study) The findings of this new study can be found in the May 17, 2006 issue of the Journal of the American Medical Association. The Mayo Clinic study found an apparent link to other cancers, including skin, gastrointestinal, breast and lung tumors. Eric Matteson, a professor at the Mayo Clinic in Rochester, Minn., and an author of the study, stated that physicians might well expect to see one additional case of cancer develop within 6 to 12 months of treatment for every 154 patients who take the drugs. Doctors could expect to see one serious infection, such as pneumonia, within 3 to 12 months for every 59 patients treated. Less than 1% of patients in the study developed cancer. The Mayo Clinic study found an apparent link to other cancers, including skin, gastrointestinal, breast and lung tumors. Anti-TNF antibody drugs are one of the fastest-growing prescription classes in the nation.
 
Hi Jim and welcome to the forum. I have had a bowel resection at the terminal ileum site, and for me it was the last resort. I didn't want to have drugs like Methotrexate or Remicade and I had terrible problems with anal fistulae and had been in a flare for nearly 12 months. Nearly nine months after surgery, I have virtually no crohns symptoms, I have a stoma, but its only temporary and I have been given the all clear to go ahead with reversal surgery. I know I still have a long way to go, what with recovery afterwards and all that but I know I did the right thing for me. I'm not saying, go for the surgery, after all thats your choice, but what I am saying is, its significantly improved my life. Clearly, things are bad in this certain area for you, maybe things won't improve much anymore. I hope things work out for you.


Ruth
 
Thank you so much for the replies.

I'm pretty well versed in TNF drugs and how they work. I was an early recipient of Remicade and did my homework then (unfortunately, I developed the antibodies and can't have it anymore). I also talked with the NP's who were running the Humira trials at Mayo a while back, so I know the advantages and the pitfalls.

ruthymg, thanks for your story. My surgeon says I have only about a 5% chance of waking up with a stoma: he's expecting a very clean result. I've been having more and more frequent abscess/fistula problems, and recurring bowel obstruction, even with taking prednisone and imuren, so I feel that I need to do something to get off the steroids now (not to mention I'm also now experiencing a steroid induced diabetes).

My GI guy says that given my current progression, I might expect to be symptom free for 3 or 4 years, maybe even more.

I appreciate the information from both of you... it is helping me make a hard decision. The surgery is sounding like the best short-term solution right now.
 
have you tried any natural healing processes? they worked for me and many many other people where prescription drugs did not. there is a good chance they can help you enough to not have to have surgery.. it would at least be worth trying out before resorting to the knife.
 
Have you tried cipro or flagle for the fistulaes.
Remicade and cipro help a little bit for me in the fistula department
slows the drainage down.
Goodluck and welcome to the forum.
 
If the prescription drugs dont work, try looking into homeopathic methods. It's not just me who has felt extremely better through non-synthetic medicines. Remember, a last resort is a last resort. If you truly cannot handle the pain or put up with it, then go for surgery, but the more intestine you have the better.
 
TNT, I have been through several cycles of Flagyl and Levaquin, and sometimes it reverses the fistula, sometimes it doesn't (and so I end up in ER, either getting drained by interventional radiology personnel or getting it fixed my surgeon).

I want to thank you all for your input. I've decided to go through with the surgery. In my case, the only part of my intestine that is affected is 2 to 3 feet of the terminal ileum. I have no involvement of the colon, the lileocecal valve appears normal... my surgeon expects that I will lose just the affected area of the small bowel and that I will not require an ostomy.

This has not responded to any medication but cortical steroids, which I simply can't take anymore. The steroids themselves are now exacerbating the fistulas, and have also raised my blood sugar to diabetic levels.

I've tried several "natural" remedies, but have not found one that works.

I was diagnosed late in life, and at 50 years old, this will be my first resection. Considering that the best predictor of the future is the past, this may very likely be my only resection, as my disease hasn't progressed or spread in almost 7 years of treatment. This, and the fact that it doesn't respond to any drug therapy but prednisone has indicated that much of what obstructs my ileum may be (at this point) scar tissue, which cannot be fixed by any systemic drug.

So after much deliberation, the surgery really looks like a good option for me. I think I can hope for a few years of relatively trouble-free living, and if and when my symptoms do return, I'm sure that the current drug therapies will be much improved.

Thanks again for being so kind to a newbie.....
 
I would just like to wish you good luck. Welcome to the forums. Also when you get surgery try not to eat any processed sugars and anything that can create a habitat for bad bacteria. Ask about probiotics after surgery because they will help build a healthy intestinal flora.

Best of luck my friend with surgery
 
Jim, hopefully you will do well having the surgery. I am new on this forum, but have had crohns for 40 yrs. I have had 3 bowel resections, with a total of a little over 3 feet removed. After each surgery, I felt like a new person, except for the diarrhea factor. The last surgery I postponed for a year until I was having bowel obstr. almost every 3 or 4 days. And was also on prednisone. I have been free of disease now (I think) for 10 yrs. No meds, but I am an awful pt. Just recently I have a recurrence, was on prednisone and entecort, and now the dr is talking about remicade. I'm thinking of trying a major diet change first to see if that works. Anyway, watch the food channel while you are recuperating, it gets the peristalsis going in your bowel. I also had only toradol for pain IM instead of narcotics which slow down the peristalsis. And be sure to take B12 injections every month. I am currently being treated for neurological damage from B12 def. Good luck and keep us informed.
 
The Sx started for me in my legs, symmetrical tingling and burning and lower back discomfort, and it was thought to be a "back sprain". Had trouble with urinating and then it progressed to my arms with numbness and up to my lower eyelids. I got sparky feelings and dizziness, along with heart palpatations and memory problems. Long story short, I had developed Subacute Combined Degeneration of the spinal cord. (And I had always thought I had to be aware of anemia). Since B12 shots a lot of my sx have gotten better, but are not gone. I have peripheral neuropathy and still have leg and hand cramps, sleeping diff, palpatations and trouble remembering things. So, take yer B12 for sure. PS: Many doctors are in the dark ages about this syndrome.
 
Hello, all.

Wanted to thank you for your help in making my decision. I am home from the surgery, and it turned out to be the best possible decision and outcome.

The ileum was twisted into a loop, which was inflamed and sticking to the fascia (and seemingly had been since the beginning of a series of flareups last August), and about a foot downstream from that little knot was a mass of scar tissue my doctor described as "woody." No medication would have reversed this condition. Pathology on the mass is consistent with Crohn's, no evidence of any cancer.

The surgeon took 1.5 feet of the small bowel (half what he expected from imaging) along wtih the ileocecal valve and appendix, and closed me up with no stoma or drainage tubes required. I spent six days in hospital, had the staples removed the day they sent me home. I am now back to work in my home office and feeling rapidly stronger. One more day or two and I won't need my oral pain meds anymore. (Those of you who have had this expereince know the joy of being asked to stand up and walk 24 hours after abdominal surgery!)

Now my GI doctor and I can start with a clean slate. Thanks again to you folks for answering when I needed it.
 
Hi Jim!

I am so pleased to hear the outcome of your troubles.
Please continue to feel better and get stronger each day. :)
It's always great when we get some good news here in the Forum!
Be sure to pop in from time to time and let us know how you are doing.
And even just to chat or help others out because of your experience.

All the best,
Happy Easter, Nancy
 
Aw Jim thats fantastic news, its great to hear happy stories from others and humbling to know that in some way we helped a little in your decision. So pleased for you.


Ruth
 

Similar threads

F
Advice needed 😊
Replies
3
Views
440
thike1966
thike1966
A
Loop ileostomy, active disease + rectal discharge
Replies
6
Views
1K
Nadia96
N
W
Needing help understanding
Replies
5
Views
3K
Andersen007
A
N
Advice on diagnosis
Replies
1
Views
988
Scipio
Scipio
G
Introducing myself - Hi!
Replies
2
Views
449
valleysangel92
valleysangel92

Latest posts

Back
Top