When should I demand a surgery?

I have had Crohn's disease for a little over 4 years. I may have had it for much longer but I was misdiagnosed for many years. I have been hospitalized 4 times in the last 2 years. The first time was for a fistula. I began Remicade and never felt better.

Unfortunately, Remicade is losing its futility. I have been hospitalized twice in 3 months. I am in the hospital right now as I am posting this. Both of my hospitalizations have been for inflammation. After numerous flares, I have strictures in my ileum and any bit of inflammation is causing a back up and inflammation into my small intestine.

My GI wants to put me back on steroids and switch me from Remicade to Cimzia. While I appreciate his desire to keep me from surgery, I am at my wits end. I am a law student and I am missing school. I started a paying job 2 weeks ago and I have missed 2 days of work when they needed me most.
Leading up to both of these hospitalizations, I have felt tired and had difficulty concentrating so I am falling behind in school. My personal relationships suffer, I don't know why my fiance is with me some days.

I know a surgery would probably keep me symptom free for a long time, or at least that is my hope. I am on crappy insurance so all of this medicine and hospital stays have put me in a lot of debt, law school aside. Haha.

Has anyone ever demanded surgery? Tried Cimzia?

Hello and welcome Lori, I did not demand surgery, but I did get it. I was always told that surgery is a last resort so I am not sure you can demand it. In my case the surgery worked out very well. I have only had one minor flare in the last 10 years. I can say this. I wish they would have done the surgery earlier. It would have saved me years of suffering. I have no experience w/ Cimza, I have been on Azothiaprin since the surgery.

I demanded surgery. I had a lot of the same problems you had plus some others. Get a lot of different opinions before you do any such thing. I consulted five different doctors - two colorectal surgeons, two GIs, and an infectious disease doctor because of my history of infection. One GI advised me against it, everyone else said to do it, so I did.

I would advise you to wait until you are going to have time to heal. Recovery has been very hard for me, and I am always stressed and in pain.

It is not an easy surgery. If you have surgery now, I would advise you to take a semester off. I am also in law school. I had my resection in December between semesters. Post-surgery, I experienced two wound infections, an abscess, and other minor complications that prolonged my recovery. I was not in a lot of pain post-surgery, but I was very tired and did not have energy to do anything. I was bed-ridden for about three weeks.

There is no guarantee you will be symptom free after surgery. Talk to your doctors about your chances. Ct scans taken a week and a half after my surgery showed that the crohn's had already returned. I am already back on remicade after a painful relapse sent me to the er. We are still waiting to find out if my surgery was successful in removing the fistulas.

On the upside, I have a coworker who has crohns and had surgery three years ago and has been in remission ever since.

I don't regret demanding surgery. I will never regret fighting for my health and normalcy. Don't rush into anything. Make an informed, well thought-out decision, and plan your surgery as much as possible. It will go smoother for you that way. If you decide to do it

Good luck!

Ps, I also had a pre-surgery colonoscopy. If you haven't had a colonoscopy recently, ask your doctor if you need one. This was the deciding factor in getting permission from my second GI to proceed with surgery - the colonoscopy showed a significant amount of damage.

Hi LoriS, I was diagnosed almost 16 years ago and I was told then that I should have my entire Colon removed. Medication and many years of research have led me to diet restrictions/changes that have put me into remission and off all medications. Most doctors will tell you that diet has little or no effect on your crohns but I very strongly disagree as I and others have had outstanding success with diet. A positive attitude and not wanting to be sick is also a very real way of dealing with day to day activities. Check out the following books for diet hints and tips for you to try, "Life without Bread", "Sweet Poison" and also the video "Big Fat Liar". Basically I never eat sugar in any form besides a very small amount of fructose in the form of whole fruit that I may eat 2-3 times a week. I never eat any kind of processed carbohydrate at all. I do eat lots of butter, cream, meat, cheese, coconut oil, eggs and cooked vegetables but I do minimize the amount of root vegetables(potatoes,yams) I eat. Do your research, throw away the crap food and keep a positive attitude and you will be on your way to recovery.

Cheers

Peter

peterh88 said:

Hi LoriS, I was diagnosed almost 16 years ago and I was told then that I should have my entire Colon removed. Medication and many years of research have led me to diet restrictions/changes that have put me into remission and off all medications. Most doctors will tell you that diet has little or no effect on your crohns but I very strongly disagree as I and others have had outstanding success with diet. A positive attitude and not wanting to be sick is also a very real way of dealing with day to day activities. Check out the following books for diet hints and tips for you to try, "Life without Bread", "Sweet Poison" and also the video "Big Fat Liar". Basically I never eat sugar in any form besides a very small amount of fructose in the form of whole fruit that I may eat 2-3 times a week. I never eat any kind of processed carbohydrate at all. I do eat lots of butter, cream, meat, cheese, coconut oil, eggs and cooked vegetables but I do minimize the amount of root vegetables(potatoes,yams) I eat. Do your research, throw away the crap food and keep a positive attitude and you will be on your way to recovery.

Cheers

Peter

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Hello Peter and welcome to you, I just wanted to take a moment to say congrats on reaching remission thru diet change. I am sure you are right about the processed foods and suger being the enemy. I think if I had it to do over again I would have started w/ diet before considering surgery. My surgery was before I had the info I now have regarding diet and ibd. I was told what many of us were told, that diet wont make much difference. I must admit that giving up suger sounds like a very daunting task!

Thank you so much for all the advice! I was released yesterday and I have another appointment this week to figure out the next step. My CT scan showed that my ileum is very, very narrow so I may not have a choice in the matter.

Ekay03: I am not thrilled about a surgery at all, but I don't know that I can financially handle the medicine and the hospital anymore. My doctor has put off surgery for the last two years. Remicade was supposed to fix everything, but it doesn't seem to be working anymore. How was your recovery?

Loriebird: I am very sorry to hear that your disease has come back so quickly after surgery. I am terrified of the same thing happening. Were you on
Remicade before your surgery? It healed up my fistula, but seems to be powerless in stopping inflammation any longer. I had a colonoscopy in November and it showed the disease was very active, a month later I was in the hospital. It's nice to hear another law student's suffering. I am sure our education choices did not help our illnesses. Haha. Did your family or doctor suggest anti-anxiety medication? Both my doctor and my family have and I don't want any part of it. I already swallow enough pills a day. May I ask what part of your intestine was removed during the resection? And did you need a "bag?" That's what I have called it because the thought of waking up with one is really unpleasant.

Peterh88: I appreciate the diet advice. Maybe I can get to that point eventually. I am on a low residue diet which is greatly limiting what I can and can't eat right now. If I cut out carbohydrates there probably won't be much left for me to eat. Haha.

Have any of you heard of the whip worm treatment that is being researched right now? I was thinking of trying it because the research makes sense.

LoriS said:

Ekay03: I am not thrilled about a surgery at all, but I don't know that I can financially handle the medicine and the hospital anymore. My doctor has put off surgery for the last two years. Remicade was supposed to fix everything, but it doesn't seem to be working anymore. How was your recovery?

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My surgery was an emergency situation. The doctors treating me didnt think things were that bad. I guess my tests came back and did not look alarming but the pain was so bad and no amount of pain meds could help so they started out as an exploratory surgery. When they got inside they discovered an infection. So they cleaned up in there and resected my intestines and left the incision open, to heal from the inside out. That was the hard part. I had to pack it daily for months. This was 12 years ago now. Time passes so quick! The best parts is I have been pretty well since then. I feel much better now than I did before the surgery.