Question about Resection

[ItsAlwaysSunny]

Hello! I've got a question for you guys (I'm still rather new to the disease). My background is that I was diagnosed with Crohn's Disease in September of 2011 with a softball size mass of inflammation in my terminal ileum, they told me I had a near bowel obstruction, but it appears I had only about a 1/2 CM to 1 CM opening, my last scan said that there was /some/ improvement. I'm on Entocort 9 mgs a day, and Pentasa 1,000 mg, 4x daily. The surgeon I consulted said I had no strictures when I was diagnosed. Sorry, I'm probably rambling...

Is it possible to come back from a partial-to full bowel obstruction without surgery? If so, what course of drugs did you use? If not, are you glad you did the surgery, or do you after surgery wish that you had just continued to battle the disease strictly with medications?

Please, if it isn't a problem, tell me your positives and negatives for a resection surgery versus an all-drug approach.

Thank you all so much for taking the time to read this and for giving any advice you can. Thank you so much.

 

[Jennifer]

Inflammation can cause scar tissue so if there's too much scar tissue or if the inflammation cannot be controlled with medication then surgery may be your only option.

I went for a year on the highest doses of meds that were available at that time (Entocort, Prednisone, Asacol and 6MP) with a stricture from both inflammation and scar tissue. The inflammation was out of control and the meds weren't working so we had to do a resection. That resection put me into remission (on 13 years now) and I'm glad I did it.

We didn't wait for it to be an emergency because obstructions can be life threatening (can cut off blood flow in the gut not to mention a perforation etc). You can live with a partial one (and treat it with medication if its mainly inflammation and there are procedures for stretching scar tissue but its not permanent and depends on the severity) like you're doing now but not with a full blown blockage.

Glad there was some improvement and hope it keeps improving but remember that surgery is not the end of the world and can make your life a lot better (kick start remission).

 

[ItsAlwaysSunny]

Thank you for the response!

Do you stick to any specific diet now that you've had your resection? How long would you say it took you to heal, and how long was your surgery? Sorry to spam you with questions, I'm just trying to figure out the right path for me... I've been on two courses of steroid treatments, and Pentasa (still at the highest dosage) and I tried to taper to 6 mg of Entocort from 9 mg a week ago and within a day or so immediately began to reflare...

It may sound silly, but I think instinctively my body and mind know that there is something seriously wrong and that the medication isn't fighting it adequately enough. I'm not a very anxious person, but it popped into my head without an provocation the other night to tell my parents that I was quite content with my life in the event that I just randomly passed away from complications from Crohn's Disease.... I think that's why I'm asking so many questions about surgery... I think it's just time to stop struggling and have the surgery....

As you said, it is not the end of the world and can make your life a lot better. I almost cried seeing that you said you'd been in remission for 13 years and counting... The idea that I could have relief for even a year to three would be enough to please me! I was just diagnosed in 2011, but I know I've had the disease my whole life. I've never topped 103 lbs and I'm 5'8"... I'd like to be able to maintain my weight and feel good without worrying about obstructing or constant pain.

 

[Adam_76]

Hello, I was diagnosed with crohns in oct 2011 after a couple of weeks in hospital and a month or two on meds, I had the surgery (a week before christmas) and to be honest apart from the recovery period ( which is uncomfortable by the way lol) it is the best thing I've ever had done (as far as treatment is concerned). I'm now in Azathioprine and infliximab infusions and I feel the best I have in years. Hope this helps. And good luck.

 

[Jennifer]

No I don't follow a specific diet. I eat whatever I want. Only time I followed a diet was while I was in a flare.

I think the surgery took a few hours (I'm guessing 4? Can't remember). They never know how long it will take until they get in there (or how much to remove. I had 8 inches of small and large bowel removed) plus they also took out my appendix while they were in there to avoid future complications.

The healing portion is hard to say because I did get an infection but take out that long story and overall healing for me was about 2 months. I think a more normal amount of time would be a month, maybe a little less with no complications (steroids make healing difficult and that's the problem I ran into).

You want to maintain your current weight or just in general? After surgery and with remission you'll likely gain weight since the disease seems to have its hand in controlling your weight at the moment.

Keep in mind though that I'm not med free. I do take 6MP to stay in remission and may be switching to Humira soon as the 6MP dose keeps getting bumped up to maintain remission. So you'll likely take medication after surgery (which I highly recommend rather than going off all meds and hoping to stay in remission with diet and supplements etc.).

Also keep in mind that not everyone has such great success with surgery (although there are people who have been in remission longer than me that I've seen on this forum which is great) and the more surgeries you have, the more you may need in the future because its common for Crohn's to attack the resection site again. Also keep in mind you only have so much bowel to work with and if you can save it, then do your best to but if meds aren't working then surgery may be a better option.

I didn't want to worry about a full obstruction anymore either. Mine was a partial and I was vomiting from time to time with some lovely pain. It's not fun.

Everyone is different and I hope whatever you choose works for you.

 

[ny_sooner]

My wife just had surgery on july 18th for the same problem you have, a massive inflammation the size of a orange in her illium. To give you some history, my wife was diagnosed with CD in 2006 with two large rectal fistulas and ctons were installed. She had no other symptoms like D or pain, so we opted to try the SCD diet before going hard core with 6mp. GI said we were wasting our time because fistulas that big never heal without drugs. Well guess what, after 6 months on the diet, the first fistula healed so much the cton needed to be removed. Two months later the other fistula healed up also. She was symptom free until 2011, then she started having extreme pain in illium for a three or four hours , then it would go away for a month, only to come back again for 3 or 4 hours or a day , then go away for another month. This went on until dec 2011 when the pain didn't go away so hospital CT showed massive inflammation in ilium. Since dianosed with CD earlier, they assumed this was crohns related and started my wife on predisone and pentasa. Pain went away for a littlle while but kept comming back and more severe until in june, she was hospitalized with massive abscess in the lower abdomial cavity they thought was caused by a fistula from her illium. They drained the abcess and injected fluid to try find the track of the fistula, but nothing was found. Surgery was preformed a week later and the massive lump of inflammation in her illium was a fused mass of flesh which included her apendix and ilium and another part of her intestine. Patholgy samples taken and analized during surgery showed no active CD up stream of inflammation, no CD downstream in the colon, none in the rectum, and none in the other piece of the intestinte involved. The only CD was a small amount found in the small 4in section of ilium near the appendix that was removed. No fistula was found anywhere.

Conclusions were,, all problems were caused by appendix and the CD just happend to be there for the ride, but was not the major cause. This explains why she never had any D all this time while she was having pain.

It has been 2 1/2 weeks since surgery and BMs are 90% normal. a little soft but formed. She has no more pain and eats juts about anything that is scd legal. She still follows the scd diet and she will take pentasa 2000mg a day for maintenance even though the GI wants a harder drug. If a harder drug is needed in the future she will take it, but now, why cause other problems if it is not necessary.

 

[emmaaaargh]

I had a stricture a couple of years ago! It was too far along to consider treating without surgery, I think, but in my experience it went quite well. The surgery itself took about 8 hours for me, but my recovery time wasn't very long - yay for keyhole surgery! They took out 30cm of my small intestine and I was only actually in hospital for 5 days, which was apparently far longer than I needed to be because for three days they kept pumping me full of morphine when I should have been off it the day after the surgery!

I had to go on EN after my surgery and I was on that for 6 weeks. No problems otherwise, though, and I got to eat my first meal again a couple of days before Christmas. I had about a year and a half in remission - and it was amazing!