Surgery to come, and not for my ovaries!

[SarahAnne]

Holy cow! I don't remember the last time I posted. I've been so sick, was playing the run around with my old GI last time I was on here. Can't remember if I mentioned that I was hospitalized for the 3rd time in 3 months in August. I was in so much pain, GI still wouldn't give me any pain meds (in hospital he actually gave me tylenol. Tylenol! Honestly! If I didn't mention here in a vent before, GI's final assessment was that the pain was probably my ovaries, and he sent me for a pelvic/vaginal ultrasound. When nothing was found (surprise!) I was released, again, with no plan, no meds, no hope, except for the coming appointment at UAB.

My appointment here (UAB) was on Friday 8/26. GI wanted to admit me immediately, but I opted to go home over the weekend to pack (I'm 5 hours away from home) with the intention of going back on Monday. I made it to Saturday morning and when I couldn't walk from my chair to the bathroom without falling, my husband got worried, called the hospital and my mom and I were on our way back. I've been in the hospital since then.

I am furious with my old GI. He seemed to think there was nothing wrong with me. I had an endoscopy and colonoscopy, and a small bowel series. I have severe inflammation, ulceration and narrowing at my ileocecal (?) valve, all where I had my previous surgery 15 yrs ago. The narrowing is so bad that they couldn't get the upper scope through the opening. There is a 10 cm area that I need to have removed because it is not responding to any medication, steroids or remicade. GI doc wanted to do surgery right away, but GI surgeon said NO WAY! My electrolytes and nutrition levels are such that doing anything but any emergency surgery for a blockage would be "dangerous" (surgeons words, not mine). I'm supposed to be released soon, with orders to go home and drink 5 high calorie, high protein supplement drinks a day for at least 2 weeks to get my body ready for surgery.

It has been such a roller coaster. The high doses of pred are working on my emotions, not to mention that I go from one doctor who says there's nothing wrong, to a highly respected surgeon who can't believe I got to this point. I'm terrified of having surgery, the last time I was 19 and had no clue what was going on. I know more now, but it doesn't make it any less scary. Plus, I have two young kids at home. It's going to be hard to go home for two weeks and not expend any calories. My mom is going to come over every day to help out so I don't have to worry about shopping or housework, and she has been here with me in the hospital the entire time.

I guess I'm just confused and angry. How does a doctor let a patient get to this point? My husband wants to file a medical malpractice suit for negligence or something, he's just so angry right now. I'm still trying to wrap my head around everything.

Hope everyone else is doing well, or as well as you can. I will update with information when I get it, there is no official date set for anything right now. I'm starving from the pred on top of everything else, and of course on a clear liquid diet. Surgeon is afraid I will become blocked if I even try to eat soft foods. The only positive thing so far is that Carnation Instant Breakfast makes a 560 calorie, high protein drink (lactose free too!) that tastes far better than Ensure or Boost. So I have that and popsicles to look forward to. All I'm hoping for at this point is to be able to eat a decent Thanksgiving dinner without having to put all my food into a blender.

 

[archie]

What a journey but at least they're at the point that they are hopefully going to sort you out and hopefully get on the way to feeling better. Try not to get too stressed about the GI as it will only worsen your condition just concentrate on getting better then deal with it after the surgery. You've had surgery before so you know a bit about it, but good luck with everything and get well soon. Hope you get to eat a decent meal very soon.

 

[Artificial]

what a nightmare! Hope things get better soon SarahAnne!

Rachel x x

 

[Carrie]

I'm sorry to hear you've gone through so much crap in the past few months. I hope the liquid diet goes OK for you. My Crohn's was getting so out of control that I couldn't even manage the supplements for my liquid diets (I tried two: 1) Fortisip (similar to Ensure or Boost, but lactose free); 2) Modulen). I had lost 10kg prior to my three-month admission to hospital, and lost another 4kg with all their running around. Eventually they put me on TPN instead, which started to work OK. The intention was to have me on TPN until I gained enough weight to be healthy for surgery. Luckily, after I transferred hospitals, the surgeon had just gotten back from holiday, and had availability in his diary to do my surgery the next day. He didn't think I was likely to get any healthier prior to surgery, and was likely to make myself worse if I didn't get it done sooner.

I'm so glad I agreed to do it, even if it was short notice. I'm nearly three weeks out, and feeling so much better than I have in the past year or two. I hope the next few weeks go well for you, and you have a similar outcome where you are feeling significantly better in only a matter of time.

 

[SarahAnne]

I'm having a hard time trying to find these supplement drinks they want me on. Apparently you can order them online but they are ridiculously hard to find anywhere else. They are Carnation Instant Breakfast VHC (Very High Calorie). In an 8oz can, it has 560 calories, 23 grams of protein, and 14 grams of fat. The high protein Boost my husband found only has 240 calories, 15 g. protein, and 6 g. fat. I'd have to drink at least double of what they want me to. I will make due with these until we can order some of the other I guess. I have to gain this weight. I was 82 lbs, now I'm up to 84. I want to have the best chance for recovery, so I'm going to do the best I can to get the weight up. My diet is very limited (liquids and very, very soft foods, like scrambled eggs and mashed potatoes w/no lumps). The 40mg of prednisone a day is making it a struggle to limit my diet. I'm starving!

Carrie - I'm so glad that you're feeling better that soon after surgery! It gives me a lot of hope and eases some of the fears about mine. My last major surgery for my Crohn's was 15 yrs ago, and at 19 I was terrified. I'd never been through anything like it. I'm a lot more prepared now, and know what to expect. I'm dreading it, but looking forward to it in a weird way. I'm sure you understand, it's that feeling you get when you'll do anything to stop hurting. Even let someone put you under and cut into you. I'm ready to know what it feels like to be in remission. I'm pretty excited for the future.

 

[Jandeacs]

Hello Sarah Ann

Hello There .. I think we worry about surgery , try to delay it , then when its necessary its not as bad as we think .. like most things the thought is worse than the deed You will gradully feel better and slowly be able to introduce more foods .. woohooooo how good is that .. just look forward to next years Thankgiving .
Thinking of you
jan .

 

[Carrie]

Carrie - I'm so glad that you're feeling better that soon after surgery! It gives me a lot of hope and eases some of the fears about mine. My last major surgery for my Crohn's was 15 yrs ago, and at 19 I was terrified. I'd never been through anything like it. I'm a lot more prepared now, and know what to expect. I'm dreading it, but looking forward to it in a weird way. I'm sure you understand, it's that feeling you get when you'll do anything to stop hurting. Even let someone put you under and cut into you. I'm ready to know what it feels like to be in remission. I'm pretty excited for the future.

Maybe it's because this was my third surgery, but the only things I really worried about were 1) possibility of waking up with an NG tube (which didn't happen); 2) having the staples removed--they make me incredibly squeamish, and while I'm looking forward to having them out Friday, I'm not looking forward to the actual procedure of having them removed. And because I've been on pred for so long, I the surgeons wanted me to keep them in an extra two weeks to ensure the wound healed correctly.

I guess after the surgery, I was a bit apprehensive that things had gone so well. They had me sipping water that same afternoon/evening, drinking "free fluids" the next day (i.e. any fluids), eating mushy food the third day (e.g. yoghurt and nutritional drinks) and eating normally the forth day. When I'd had my resections in the US, I had the horrible NG tube for the first 4 - 5 days, and wasn't eating until the 6 or 7th day. Hopefully my most recent experience is an example of how much these surgeries have advanced in the past 10 years.

Fingers crossed both our surgeries last us another 15+ years!