New Here - Upcoming surgery

[Jessy]

Hi All - I am a 29 year old wife and mother and have been dealing with Crohn's Disease for about 10 years now. I started having symptoms my freshman year of college but wasn't formally diagnosed until my junior year (colonoscopy showed ulcers and I had a perianal fistula).

My Crohn's was "managed" for about 3 years on 6MP, but I never really maintained a full remission. When I was about 24 I started Humira and had a good 3 years of full remission on it. I gave birth to my son 2 years ago, which induced a flare that I have yet to come out of. I switched from Humira to Remicade about a year ago which gave me some relief, but nothing close to the remission I had on Remicade. Since the birth of my son I have developed 3 strictures that are causing a lot of pain when eating and have caused Small Intestinal Bacterial Overgrowth. I also have a lot of inflammation in my TI area that is no longer responding to Remicade.

I have been in a massive flare since June requiring 3 hospitalizations. The first hospitalization revealed massive inflammation in the TI area with a abscess. Every visit is the same - get admitted for about a week on antibiotics, prednisone, and pain killers until I start to feel better and can eat again. Get sent home with pred and some pain killers - get by for a while until the abscess returns and lands me back in the ER, and repeat.

I have met with a few surgeons, one at local hospital and one at the Cleveland Clinic. Both agree that I need surgery (resection and strictureplasty), but feel that I am not physically ready for surgery yet because of all the inflammation and my nutrition levels are low. After my last hospitalization (about 3 weeks ago) I decided to agree to the surgery with my local surgeon. I was sent home on 40mg prednisone and TPN (12 hours per day) and pain relief (oxyContin and oxycodone) and have been meeting with my surgeon weekly to assess when I will be ready for the surgery. I have been tapering rather quickly off the pred because we don't want me on it for surgery (am currently on 25mg).

I am back up to a healthy weight due to the TPN and prednisone and feel much better now that I am receiving continuous pain relief. I am off work and just waiting to get this surgery OVER with. Really, I have been putting it off forever, but all my doctors say there is nothing else they can offer me. They all say I have severe Crohn's and it is impressive that I have gone this long without a surgery. Following surgery, I plan on implementing the SCD diet in hopes to maintain a remission.

What are your thoughts on this surgery? Do I need it? It is hard because I am feeling better right now, but I know it is probably artificial from the steroids and pain medication. I am also off from work so I can rest whenever I want. Eating is still very painful, but I am trying to supplement the TPN with real food and my weight is back to normal (if not a few pounds heavier, ugh). Have any of you had surgery for Crohn's that has led to remission? Anyone regret having surgery?

Thank you for taking the time to read this and offer advice! I am so ready to get this surgery over with and move on with my life. I have been sitting home WAITING around for 3 weeks now and don't know how much more I can take (I usually work full time. My son still goes to daycare everyday and my husband works. BUT my house is cleaner than ever and the laundry is all caught up, haha).

 

[Crohn's gal since 1989]

I am currently waiting for a resection of a stricture I has in the TI. If your strictures are from scar tissue, then you will only continue on the viscous cycle of obstructions, intense pain and hospital ER visits.

My GI has me on a low residue diet until I meet my surgeon in late October. In hopes that this keeps me from getting another obstruction.

 

[valleysangel92]

Welcome to the forum, sorry you've had such a bad time of it.

I know surgery is a scary prospect, but it does sound like you really have exhausted your other options, and the longer you put it off the more chance there is of it becoming an emergency. I had a hemicolectomy 2 months ago and before it I was really anxious, but looking back it wasn't nearly as bad as I thought it was going to be, and if I ever need more surgery I will certainly not be as nervous as I was this time.
It sounds like your doctors have done their best to keep you out of surgery, but there is only so much medication will do, and if its scaring then only surgery is going to solve it. I dont think that your doctors would be pressing for surgery if they didnt think it was necessary.

We are all here to help and support you through all of this so feel free to share any fears and ask as many questions as you like.

 

[annawato]

Hi Jessy. Your story sounds very like mine. Ti disease and recurrent abdominal abscesses. My first resection gave me a couple of years of feeling 'relatively' better. Not perfect but not in agony either. Then I developed an abscess. When they went in to resect the area (after trying to drain the abscess, iv antibiotics etc) they found that the small intestine was too diseased to even resect so they just gave me a stoma to rest as much of the bowel as possible. That gave me a year of being "relatively" well and then I had the stoam reversed. I only got about 6 months before the abscesses returned and spent the next year mainly in hospital. It got to the point that everyone was scared to even go in and operate but eventually one of the top colorectal surgeons here agreed and so I had another chunk of bowel removed and a new stoma formed.
I guess the point to my story is that surgery doesn't necessarily put you in remission but it will give you a period of being better. My IBD specialist explained that where they rejoin you is like creating another TI so the disease will return there.
Even though surgery isn't a cure it is probably necessary in your case. The abscess is not likely to go away on its own and its dangerous to have it recurring all the time. Plus you are unable to plan anything in your life cos you never know when it will flare again and land you in hospital.
It sounds like your doctors have exhausted all the medical solutions and it is now time for surgery. Don't me alarmed by my story. It really has been the worst case scenario and many people have years of being well after having a resection. The surgery is painful but only for a little while and you will really appreciate the difference it makes.
The main thing for you now is to get the steroids down as low as possible and to get as strong nutritionally as you can. Eat loads of protein. . Supplement drinks like ensure are great for this if you can't tolerate food. The less steroids you are on and the higher your protein levels the better and faster you will heal and the less likely you will have the complications (stoma) I had. Plus you are younger than me so that will help too.
My first resection when I was about 38 I was walking the halls the next day and home in 5days.
Good luck with it all and keep us posted with how you go.

 

[nogutsnoglory]

Sometimes surgery is the answer and only you and your medical team can truly answer whether you need this surgery. It seems they very much seem to think so. The steroids can trick you into feeling better but your disease is still active and often once the steroids are discontinued the pain returns.

I do regret one of my surgeries because I don't think all medical options were exhausted. At the time I didn't even try biologics. Maybe that would have saved me from surgery?

You tried Humira and Remicade. Have you tried Cimzia? Have they told you if you mostly have inflammation or scar tissue?

 

[Jessy]

Thank you all for your input and welcome! I think you are all right - surgery is my only option. I will be so happy when it's over. @Crohn's gal - good luck on you surgery! @valleysangel - thanks for the support, I'm glad your surgery went well. It's great to hear success stories.

@Annawato - Your story does sound like mine! I am nervous about requiring a temporary stoma and have been warned that this is a real option, that is why I am trying so hard to wean down on the prednisone. As I taper I am definitely noticing more pain in the TI area and the need for more pain medication throughout the day. I am thankful my surgeon is willing to treat my pain pre-operatively, otherwise I really think I would be back in the hospital right now. The TI area was very inflamed prior to starting prednisone (you could literally see a baseball-size mass), but this has gone down since starting the pred. I just hope it doesn't come back too much prior to surgery so that they can actually resect that area. One of the GIs at the Cleveland Clinic suggested a temporary stoma without surgery to give that area a rest, but I just can't. How is it living with a stoma? For the longest time that seemed like the utmost worst outcome of this disease, but as I lie here unable to participate in life, it is seeming less and less horrid. However, I know that a stoma is not necessarily a cure for CD and would hate to have one and still feel sick. The HOPE is that my surgeon is able to resect the inflamed area of my TI and do a stricureplasty in 2 areas where I have a lot of dilation and pain. These are the problems that show up on MREs and CT scans, but in my heart I feel there is more going on that may be a surprise once I'm opened up - I hope I am wrong!

My nutrition levels are improving and I thank the TPN and prednisone for this. The prednisone is definitely increasing my appetite and I am eating pretty regularly (even though this causes pain most of the time - it's like I can't control myself, stupid pred!). My Albumin level is not quite where they want it, but I think another couple of weeks and it will be. I will be tapering to 20mg of pred tomorrow and hopefully down to 15mg by the end of the week. I have an appointment with my surgeon Monday and may need to request she increases my breakthrough meds for this final stretch of the taper because I feel like 10mg Percocet doesn't even touch it sometimes. This worries me as well because the pain pills are not something I want to stay on, so I will need to be weaned off these as well following the surgery. My DR tells me not to worry about that now, but I can't help it . . .

@Nogutsnoglory - I have not tried Cimzia, but I will be starting it after surgery. I will also be going on the SCD diet. I am willing to try ANYTHING to achieve and maintain a remission following this ordeal. I have had trouble implementing a strict diet right now because there is so much focus on me gaining weight and improving my nutrition, doctors just want me to eat anything (and I have been and have actually passed my "healthy" weight - which is not making me feel great, but "eye on the prize" - need to bulk up for surgery).

 

[annawato]

Getting a stoma is very scary and confronting emotionally but it is amazing how quickly you adjust to having one. Come and visit the stoma sub forum to get more insight into having one. its under the surgery heading. You probably won't get one but it would be great to have some knowledge of them in the event you wake from surgery with one. This happened with my first one. They mentioned it was a possibility but of course I thought No, that won't happen to me. But it did.
Remember though that the majority of people writing in the stoma subforum are doing so because they are having problems. People who are doing well with their stomas, which is the majority, don't have the need to visit. i would say that 99.9% of ostomates are very thankful and appreciative for the quality of life that having a stoma gives them. Its not a walk in the park but its not the worst thing either.
As far as pain meds goes you only do what allows you to survive now. Weaning off them is something to think about once you have recovered from the surgery. The same goes for food - for now you need to eat a healthy diet that puts you in the best condition for surgery as possible. Extra kilos/pounds can be lost afterwards.
At least you seem to have the right attitude and remember whatever happens there are loads of people here to give you support, advice and shoulder to cry on. We also have lots of laughs.
:heart: anna

 

[Jessy]

Thanks again Anna. I will definitely lurk around the stoma sub forum and read up about it. I met with my surgeon today and she said 25% chance for a stoma. I obviously don't want the stoma, but agree with everything you say. I just want to come out in less pain and on the road to remission.

My appointment revealed that while I am gaining weight, by Albumin levels are still low. I don't get it, but my surgeon was happy with my weight gain. I will continue the TPN until surgery and then be done. She upped my pain med dosage and said the same as you: we will wean after surgery once my pain is gone. I am looking forward to that. Thanks again for all your great advice and support!

 

[annawato]

Hi Jessy, I was just wondering how you are getting on? Any closer to surgery? How is your albumin level going and your pred dose?
I had problems getting my albumin level up pre surgery too. Even when I was on TPN, drinking ensure and two cal. Apparently the body uses it all up just trying to heal the diseased bowel so when you have widespread inflammation your albumin level will be low.
I hope you are not feeling too bad and that surgery is close so you can get on with the rest of your life. Or better still you've had it and are all fixed up!
:heart: anna

 

[Jessy]

Hi guys! Well I am still in the hospital 10 days post-op. The surgery was more involved than expected (well than the doctor's expected, but I had my suspicions). The surgeon ended up taking close to 3 feet of my small intestine (cutting in 6 different spots) and cleaning out some strictures. There were 2 fistulae formed between my small and large colon. I was in a lot of pain following the procedure that took some time to get ahold of. I don't know if this is because my pain medication tolerance has increased so much in the last 6 weeks while waiting for surgery or what, but I had horrible back pain for about 24 hours following the surgery that was not responding to much more than hourly Dilaudid, which even didn't help as much as I would have liked. I think I was on the Dilaudid for 4 hours before switching to the morphine PCA for about 2 more days. Once off the PCA I was withdrawing a little from the pain medications, which sucked, but we are back onto oral pain meds that match what I was taking at home prior to surgery and the next hurdle will be to wean off those pain meds once I get home. Here is a break-down of my surgery foe easier reading:

Tuesday 9/10: Went into the hospital a day early because my blood results showed elevated WBC and my nutrition levels were not going up. Dr. gave me some antibiotics and fluids as a precautions.

Wednesday 9/11:Surgery started at around noon and lasted about 5 hours. My Family told me I was in recovery for almost 3 hours though because of my pain. My husband ended up staying over with me that night (and every night since then - this wasn't planned, but I think we were all scared about my how the surgery and recovery turned out). He and my nurse seemed to be up all night helping to get my pain under control - but this is all a blur.

*The surgery was a success even though I had a lot of pain!! They removed all the diseased portion of my small intestine and I did not wake up with a bag. The surgeon said I absolutely needed this surgery and I think everyone was impressed with how I was functioning without it. She was able to spare enough of my small intestine to avoid any type of short bowel syndrome, which was important to me. I did wake up with an NG tube that was in until Saturday - that sucked.

Thursday 9/12: In and out of it all day. My parents and husband were here helping to get the pain under control. I don't know if I'm a wimp or my tolerance was too high, but my back was KILLING me most of the day. By the end of the day I had managed to stand up at the side of the bed and take a few steps around the room and get washed up. That night I was kind of out of it as well.

Friday-Sunday 9/13-9/15: Still on PCA morphine, which is fully controlling my pain at this point. I had a bowel movement Saturday morning and the NG tube and catheter were taken out later that day. Feel much better after that was taken out.I am getting up and going on walks and washing up daily.

Monday 9/16: Taken off morphine PCA and immediately feeling ill all day from what turns out to be withdrawals. The day was spent regulating my pain meds - PA knocked me down to fast so my surgeon had to get me back to what I was taking prior to surgery.

Tuesday 9/17-Friday 9/20: Thought I would be home by Friday, but had some hick-ups. I am on prednisone and my WBC count is still a little high. They had to give me a CT scan Wednesday which showed a little fluid and inflammation, but nothing to indicate an abscess, so they just started me on preventative antibiotics. They also had to take my picc line out and my surgeon wants a new one in by Monday before I go home. So I am stuck here until Monday and will be going home on prednisone (to taper quickly, pain meds, and TPN). Will be on the TPN until my nutrition levels are stabilized.

Currently I am feeling pretty good. My pain is managed, but I am mad at myself that my tolerance has gotten so high and I am stressed about tapering off these meds and the steroids. I know I just need to do it slowly, but it is just another hurdle to get through. I CANNOT WAIT to get home, I miss my son sooooo much and am getting very bored here. Watching a lot of TV and trying to sleep - but my anxiety seems a little high at times. I have slowly began eating and am things seem to be moving pretty quickly through, which I guess is normal at first.

A few questions for you guys:
-What were your BMs like after surgery?
-How long did you have pain following the surgery?
-Did you have to wean off the pain medication once you got home? Did you find that difficult?
-What was your eating like following surgery?
-Did you have to take anything for nausea? I am finding myself nauseas after eating.

Thank you for all your support. This has been a rough road, but at least I feel like I am halfway there now. Just need to recover and get off this steroids and pain meds.

 

[CheerBear12]

Get well soon and hope it a speedy recovery