Facing surgery, advice much appreciated

[KatieDid]

Hello everyone I'm pretty new to the forum and I'm in need of some advice. I was diagnosed with a case of severe Crohn's in the terminal ileum in Nov. Since then I've tried multiple meds, I'm currently on imuran; nothing has helped. Prednisone seems to be the only thing that works for me, I've been on different doses since April, but I know this is not a long term med. My GI dr has been telling me for a while that if I didn't have such an extensive amount of affected tissue that I would have had surgery a while back. Well, I received a call from the surgeon about 2 wks ago that he and my GI dr have now decided that it's time for surgery, I'm scheduled for Sept 19th. The plan is to go in laproscopically and remove the bad tissue and then reconnect everything. I'll then continue on imuran as a maintainance med. I guess I'm just wondering: Is there anyone who has had only one surgery? Will having this surgery put me on the road to more and more surgeries? I'm 28 and the thought of starting down this path is so scary. The drs keep talking about what a large amount will have to be removed and how I'll be at risk of developing short gut syndrome down the road if I need more surgeries. Also, has anyone had a surgery and then tried a special diet, like the SCD diet, and did it work? For those of you who have had surgery, did you change your diets afterwards? Do you think that it helps to prevent/delay the disease from coming back? I know there are mixed thoughts on the role of diet and Crohn's. Sorry this is so long, and thank you in advance for your advice

 

[ameslouise]

Hi Katie - I can't offer you much specific advice as my case was very different than yours. But I did want to chime in to say good luck on the surgery. It can be so, so scary thinking about it, and there's a lot of anxiety in the days before the operation.

The thing with Crohn's is that it can be so unpredictable. This could be your one and only surgery. Or it could be the first of many resections. Or you could end up with an ileo-or colostomy someday. Who knows? The best advice I can offer is to take it one step at a time and try not to get overwhelmed with "what if" and "what's next" scenarios. Get thru this surgery, rest as much as you can, take it easy, ease back into foods, etc. Be and stay as healthy as you can, try to control your stress, take your meds etc. Its the best you can do, live your life one day at a time.

I hope the surgery has you feeling much better and gives you a great quality of life. Good luck!! - Amy

 

[DustyKat]

Both of my children have had surgery, one at 14 and the other at 17, and this has always been a fear of mine...having had surgery at such a young age will they require further in their life times.

They both have the same type of Crohns and have had the same surgeries, the same surgery you will be having. Matt's is only recent but Sarah's was 5 years ago and at the time I asked the GI about her age and the likelihood of further surgery. Naturally you never know the real answer to that question but he did say there was no reason she should have the need for another surgery in her life. I guess he was thinking about her having a diagnosis, being monitored and projecting that as each day, month and year passes treatments improve. As it is she is now 5 years post op and 5 years in remission.

Sarah was left with a degree of short bowel problems due to her inability to absorb bile salts. She struggled with this for the first four years, planned her eating around her day, but has finally found her way around it. Part of that solution I do believe is diet. Post operatively she found meat difficult to handle and over time found herself eating next to no meat at all. About 12 months ago she moved to a vegan diet and she has found that it suits her very well, she says she feels well on it and it gives her more energy.

I personally believe that diet can play a role in keeping you feeling well and energised but won't prevent a flare from occurring. If that flare does occur then again diet can play a role in alleviating symptoms.

Dusty. xxx

 

[SarahAnne]

Agreed. Crohn's is very different in everyone, I had my first surgery at 19 and 15 years later I'm having a second resection. I believe it's more about quality of life. I didn't want surgery then, obviously, but it was necessary and let me live a much better life for most of those 15 years. Of course, with a second surgery I'm concerned about short bowel and the possibility of having a colostomy someday, but.....I can't live the way I'm going on now. For me, surgery is a reprieve from the constant pain. There's no guarantee that the surgery will last for the rest of my life, but if I don't have it, my CD is guaranteed to keep getting worse.

Like DustyKat said, doctors are hopeful about improving treatments and meds. There may not even be a reason to worry that far ahead into the future. I have found it's best not to paralyze myself into inaction by being scared of meds or treatments, ask lots of questions to make an informed decision, not one based on fear of the future.

Good luck!!

 

[Feather]

Hello! I'm also new to the forum, though I've had Crohn's for 8 years so far. My Crohn's is also in the TI (and jejunum), and I needed surgery a couple weeks ago to remove a severe stricture that had been developing for years. I'm also on 6-MP (Imuran) as a maintenance med.

I think that removing a large amount of tissue is definitely a concern for surgery, though it would probably offer you a lot of relief. Do you know if your disease is mostly scar tissue or inflammation? Biologic drugs like Remicade/Humira can help with inflammation (though, if you're looking at surgery, your doctors have likely ruled this out already).

My doctors mentioned a partially polymeric diet for post-surgical maintenance, through either gastrostomy or NG tube, which might be something to look into, because I think it can be really effective in some people.

As my surgery was only two weeks ago, I can't speak to long-term effects, but I'm hoping it will last me a good long time. I think what Amy said about taking it one day at a time is definitely a great way to go--if you're always on top of the current problems, you should be in good shape!

 

[Loriebird]

Hi I'm also facing surgery soon to correct a stubborn fistula. I am also scared.

Back when I was first hospitalized, my doctors asked me to have the same surgery that you are considering. I had a 5-in absess in my tummy and a bad staph infection. I said no. I'm in law school, and it was the week before finals. As result, I developed a large fistula connecting from my colon to my belly button that drains on a daily basis and will not heal. The fistula opened up during one of my law school finals and began draining.. I had a meltdown in the bathroom and almost went to the ER. If I had consented to surgery as soon as my doctors advised it, this likely would not have happened and my recovery probably would have been much, much quicker - instead, I spent 6 months on IV antibiotics, had over 15 CT scans, and went in and out of ERs for about a year, and I still have a fistula that won't heal!

On the upside, I have a coworker who was in the same situation and did consent to surgery. She is still in remission and has little to no symptoms But of course, you never know what the future holds with this disease.

I know exactly how you feel. Surgery with Crohn's is really scary.. and I am also terrified that surgery will increase the likelihood of needing surgery again in the future. I don't know what the answer is - is it better to tyr to tough it out or operate? I know that surgery has helped a lot of people, and it would have helped me if I hadn't been so stubborn.

I really hope you recovery quickly and that you will come back here soon to tell us what a life-saver your operation was and how wonderful you feel

 

[KatieDid]

Thank you everyone so much for your replies and advice Feather, remicade was one of the other meds that I tried a couple of months ago. I was so hoping that it would help, I've heard that it's a miracle drug for some, but unfortunately I just didn't respond to it. I've decided to go ahead with the surgery on Monday. I'm very anxious, but like SarahAnne said, I can't let myself be paralyzed into inaction by fear of meds, treatments, or surgery. I'm just really hoping for a much better quality of life after the surgery. I'll let you guys know how things go, and thank you so much for all of the well wishes