I have a new plan, again!

I had my now weekly check in with my GI at 6 weeks post op. I am still having too much pain, but I am eating a bit more. Still losing about 2lbs every few days. He felt my belly and said it felt a bit softer, so he thinks things are starting to resolve. But we both agree that I am not bouncing back from this resection even like a slow re-bounder should. He took me off the antibiotic since it made no change. Now he wants to put me on Effexor to see if it will help block my brain from registering nerve pain. Thinking that some of the pain is being caused by all the nerves being cut. Theory is once I am not "feeling" the nerve pain I should get my appetite back and be able to eat.

We discussed sending my records off to Cleveland Clinic for review (my insurance will pay for it). I may do this. I have filled out all the online paperwork, just have to have the doctors office send their stuff now. But also he would like me to see the GI I had been seeing in Boston, he is head of the IBD clinic. I like that idea better because I don't think you get an accurate picture of the problem with out having the patient in the exam room with you. So Monday morning I will call and schedule an appointment. I am hoping since it has only been a couple of years since I saw him, I can get a quick appointment. If not I will have my GI call him for an appointment (They trained together). I think I will hold off on Cleveland for now, but I'm still a not sure if I will just send it off for kicks and giggles.

Its just frustrating that everything has to be given a few weeks to see if it works, meanwhile I just keep putting my life on hold. At 6 weeks post op on all 3 of my other surgeries, I was pretty much good to go.

I'll keep you updated.

I hope you get some relief soon, Zanne.

Gotta admit, 6 weeks was still pretty rough for me too. I just had my follow ups with my gyn and GI at 8 weeks. Hysterectomy went well, but not sure about this ongoing LRQ pain. I hope it's not recurring "you know what." I can't even write it down.
I'm going for an ultra sound to have a look at the possibilities.

It's been so helpful to have fellow CD sisters to share with. Thanks, Zanne.

Has westat been around? She was having a hysterectomy and resection too.

Also littlemiss and JAB—how are you guys doing?

Nah Zanne you aren't scaring me off the surgery, my last kidney surgery took care of that. But as I told my husband, I think I need to work on strengthening my legs and arms up so that I can come thru the surgery better. Maybe if I go in in better condition, I won't have so many issues.

NY Veggie, Don't let me scare you off the surgery. What is going on with me is a complete fluke. I have had 4 resections. My second one I had to wait a couple of months for. While waiting, I was on complete liquids, no solid food at all, my stricture was so narrow no solid food could pass. I was in pretty rough shape by the time I hit the operating room. The third resection, the doctors were not sure if I had scar tissue or inflammation. I was put in the hospital on high doses of prednisone and TPN for several weeks. When that didn't work, they finally decided it was scar tissue and to do the resection. Once again, I was in pretty rough shape. I was down to the lowest weight I have been since before I hit my teens, well under 100lbs. Both of these times I recovered without a problem, and I was taking care of 2 little ones and working part-time without a problem in 6 weeks. I was tired by mid afternoon, but I was functioning at a pretty high level. This is just a weird thing that none of the doctors have seen go on for this long. I actually have a friend who had an ileus (not a CDer) from an emergency surgery for an ectopic pregnancy 20 years ago. Hers lasted 18 days. She is the only other one I have every heard of.

As for the neurontin, that was one of the options that my doctor considered. He put a call in to someone to discuss 3 or 4 different options, and they thought the effexor was the one to start with. However, I just started today and I am now nauseous and have a headache, both side effects. If it continues, it will be on to the next option. Not sure what plan it is: Plan Q or Plan R at this point

I agree on the doctors getting along point too. My doctor wants me to see either the doctor I have seen off and on for 10 years or one other doctor in the same group (They all, my doctor included, trained with the same GI doctor I saw 20 years ago). The other doctor was actually on Mystery Diagnosis on Discovery, and I she was the doctor of my hospital room mate when I was in patient at that hospital a few years ago. So I am pretty comfortable with either of them.

All my surgeries have been open, even my gallbladder was done open. The first resection, I was in for 7 days after, but each one after that has been less days, 5, 4, 5. My surgeon said I could go home after 3 days too, but it was 5, so ...

After your surgery they will, or should, get you on some maintenance medication ASAP, and it probably won't be a steriod. I just continued on all of my regular medications, since my surgery was for adhesions and not for a stricture or active disease. They continued all my meds in the hospital. My surgeon did have me start taking Vit A before the surgery because it helps in healing especially if you are on steroids. He wanted me to take 20,000 IU a day, but I could only find 8000 capsules, so I am taking 16,000 IU. I see him tomorrow and I will find out if I can stop those.

If you aren't feeling like you can manage at home, then make sure your doctor knows it. They do have some leeway in when to discharge patients. Sometimes the extra day is all you need to set yourself up for a better recovery.

Zanne
Just so you know I tried many of the SSRIs (diff class then what you are trying) and I had very bad anxiety with them.. foot couldn't stop tapping etc etc.. and they made me more depressed.. "guess I have teenage brain" I said to my shrink.. but seriously I can tell you that I am not entirely happy with gaba but it doesn't "feel" like a brain chemical even tho I know it's one.. if you know what I mean. I never tried the ones that you tried and I know everyone is different.. so I'm keeping my fingers crossed that it works for you..

For some really weird reason I am gaining weight.. I didn't gain any weight on prednisone or entocort.. but now that I am finally off all that several months ago.. I can't stop the pounds from coming on and I am eating MUCH less and no, I am not eating foods that should be doing this.. and I don't think it's water weight.. I eat very little salt and my BP is low.

I wish you well and hope you feel better... I was just saying to my boyfriend that I feel so sorry for what all the people on here are going through.. and then I said "Wait a minute.. I'm one of those people"
NY Veggie

At this point, I am willing to give anything a try. But I can not and will not continue on the Effexor. I am so nauseous and my head is killing me. I do get migraines, but this is different, I get headaches as a side effect to a lot of medicines and this is the same. I know I won't be sleeping tonight. Oh well, such is the life of a Crohnie.

I'm on topamax, B2, and Atenolol for my migraines. I have no idea what one works because they all got added in rapid succession. Topamax is suppose to make you sleepy but it wires me, so I have to take it in the morning. I also have Fioricet and Imitrex if I need them. But my migraines have been under control for a few months. I had Occipital nerve blocks done in November and they really helped. darn this getting old crap. I didn't have migraines until I hit 40!