TI Resection Stress

[Scorpionb]

Hi All,
I am new to the forum, but have been diagnosed for about 5-6 years. I am now about to have a TI resection and have some questions regarding it and would like to hear your opinions/experiences.

First, a little history.
I am a healthy 27 year old outside of my flare ups
I have had about 6-7 flare ups in the past year, which only really affect me for one day, where I get flu like symptoms until I throw up and clear my system
I have been on Steroids (worked great, too bad I cant stay on them), Remicaide, Humira, and Cymzia
The flare ups started to be real bad when I went off the Humira for a bit and seemed to build a tolerance to it. However, I did have one or two while on it consistently. However, when I switched to Cymzia I had possible side effects and then a flare up one month after starting (right after the initial load)
This prompted me to go to my dr and request the surgery since I was tired of drug after drug only working halfway and having to worry about side effects. After a fresh endo/colon he said I was a good candidate for it. However, I feel he would have suggested more drugs over surgery had I not brought it up due to my general good health. Then, the surgeon told me that most who get the surgery say they wish they would have done it sooner...well I am doing it sooner.
However, my family and some who have had Crohn's feel that surgery should be only in an extreme case, yet my research points that I am correct in getting it since the drugs are only a partial solution that never seem to truly put me in remission. So, I began to research the surgery more in depth.
Oh, and the endo/colon found that the TI affected is fairly small, but I do have to follow up with how much would be removed (I cant imagine it would be too much)
Also, I have tried to figure out a specific food that triggers the flares, but keep finding more and more seemingly

Now the questions:
Do you feel I should get the surgery given the above and that there is a minute chance of death and less so from drugs...? Yet, it should put me into immediate remission (first time since diagnosed)
What are your own experiences with this surgery? Successful?, years in remission?, long lasting side effects (I have heard diarhea?)?, etc
Are there any questions I should ask the doctor from your own experiences. Here is what I have now:
-How many people have you lost due to this surgery (whether post op or during op)
-Are there long lasting side effects
-How long until I can return to normal eating and activity
I had more, but am drawing a blank now...I will update later if I remember

If you have had the surgery, please let me know:
-your age when you had the surgery
-how long ago since you have had the surgery
-your overall physical healthiness before and currently
-laporoscopy or open?

Any thoughts/opinions would be very appreciated.

 

[cally]

Hey Scorpionb! Welcome

Based on my experiences, here are some things I'd keep in mind:

Surgery will not cure Crohn's disease, and may not even provide long term relief. I had a few feet of terminal ileum + colon removed in February of 2009, and I am currently in the throes of another flare. Typically Crohn's will flare up again at the anastomosis (the juncture of the two pieces of bowel where they sew you up), and that's why surgery is typically only used as a last resort or to correct complications like fistulas and abscesses. Surgery may end up setting you on the path for more surgeries later.

One of the long lasting effects of surgery is that you may never be able to eat certain foods again. Because the surgery results in scarring at the anastomosis, that part of your bowel will be narrower than the rest and may increase your chances of having a bowel obstruction (similar to what a Crohn's stricture might do). After my resection, I was told never to eat highly fibrous foods like broccoli, celery, cauliflower, popcorn, etc because of the risk of creating a blockage. Also, your bowel habits will likely change (as you will have less bowel to move food through) - hence why some people develop chronic loose stools.

The length of time you require to recover will depend on the type of incision your surgeon can make to perform the surgery. My surgeons attempted to do my resection laproscopically (through five small incisions that do minimal damage to the overlaying muscle), but when they got in there they found that an abscess would require the more traditional 8-inch vertical gash. Because they cut through my abdominal wall, it hurt a great deal to walk upright for awhile post-surgery. I couldn't even wear pants with buttons on them because they hurt my incision! I'd say that I was back to walking normally after about 6-7 weeks. For the first 2-3 weeks after surgery, I just felt overwhelmingly tired. I developed anemia after my surgery and required a blood transfusion.

One thing I wish I had known about surgery was the potential for seemingly unrelated side effects like hair loss. I lost about 40% of my hair due to a condition called telogen effluvium, which occurs after highly stressful or traumatic events for the body (surgery, pregnancy, etc.). It grows back, though!

I know that this post sounds largely negative haha, but truly, my resection surgery saved my life. The surgeons pulled out an abscess the size of an orange from my belly, which could have caused major problems like sepsis/death if it had gotten into my blood stream through a Crohn's ulcer. It's important to get your flares under control but if the surgery is considered elective at this point, I'm not sure I would personally choose to do it. It's a big sacrifice in terms of time, money, and energy, but for some people it is VERY worth it.

-Cally

 

[Scorpionb]

Thanks Cally.
I have updated some of my questions for the doctor and for posters in my above post.

 

[DustyKat]

Firstly, I have not had the surgery my daughter has. I am not surprised your family do not agree with you contemplating this simply because as you have stated you are generally in good health but you are the one that has to live with Crohns. I wish you all the luck in the world with your decision.

Now the questions:
Do you feel I should get the surgery given the above and that there is a minute chance of death and less so from drugs...? Yet, it should put me into immediate remission (first time since diagnosed)

I find this really difficult to answer as it is such a personal decision. The surgery versus medication issue is something I often think about because Roo did not have a choice with her surgery. I wonder where she would be now if she had been given the opportunity to go down the diet and medication path and that is something I will never know.

What are your own experiences with this surgery? Successful?, years in remission?, long lasting side effects (I have heard diarhea?)?, etc

Roo has had a mixed bag of success and side effects from her surgery. It immediately put her into remission and she has been that way ever since, it was 4 years in July. I would say her only side effect, and it is a big one, is short bowel syndrome. I guess your chances of being left with this are very much dependent on how much bowel you have removed. Roo had 59cms removed but you indicate that in your case it would be much less than this, so that has to be a positive and surely a very significantly reduced chance of you developing chronic diarrhoea. There is medication available to help with this should it happen.

Are there any questions I should ask the doctor from your own experiences. Here is what I have now:
-How many people have you lost due to this surgery (whether post op or during op)
-Are there long lasting side effects
-How long until I can return to normal eating and activity
I had more, but am drawing a blank now...I will update later if I remember

- Will I be on maintenance medication post op.
- Will I require supplements such as B12 injections, Folic Acid etc.

If you have had the surgery, please let me know:
-your age when you had the surgery

Roo was 14 years old.

-how long ago since you have had the surgery

She had the surgery in July 2006.

-your overall physical healthiness before and currently

Her health in the lead up to surgery was extremely poor and immediately prior to surgery it was critical. Although she was septic and her bowel was a mess, perforated and infarcted, she had a very good post op recovery time and was in hospital for only 6 days. I gave her 6 months to fully recover and realistically this is about how long it took, I'm talking to get back to 100% here. Bear in mind she was very ill for 6 months prior to her surgery. Currently she is going extremely well both mentally and physically. She lives away from home, on campus at university.

HTH,
Dusty

 

[Dexky]

Hi Scorpion, I can't comment on your surgery!! I just want to welcome you and encourage you to intro yourself in the Your Story section of the forum so more members will see you and welcome you here!! Good luck with your decision!! I'm a little surprised this is considered an elective surgery though!!

 

[Scorpionb]

Again, thanks all for the opinions. I have been trying to browse all different forums and have come to the conclusion that this has become an even harder decision. It seems almost 50/50 on those who feel it is good versus those who feel it should be a last resort. I plan on talking more in depth with both my GI and the surgeon, esp since my GI said he is for it, but I wonder if I had not suggested it if he would have....so I'm going to try to get their true opinions as they have seen my insides. Again, thanks for the responses and keep em coming

 

[dvdgrs]

I would like to know the same things...

For the past two years, I have been contemplating the surgical resection of a 15 cm long stricture that is proximal to my ileo-ecal valve. I was first diagnosed with Crohn’s 20 years ago after being treated surgically for a peri-anal abscess. As far as I can remember, my stomach problems began at age 7 when I was treated with high doses of penicillin for Lyme Disease.

I was even scheduled for surgery at Stanford, but changed my mind a week before. I am really concerned about losing the ileocecal valve. It seems important. I would like to talk with more people who have had the surgery. I would like to know their state before and after the surgery. Mostly, I am concerned about diarrhea. Currently, I have a bout once a month, usually when I am stressed out and not eating well.

I am worried that if I have the valve removed, I will have much more frequent diarrhea. The trade-off is that now, I am kept awake by cramping several nights per month. I also wonder if I would have a lot more energy if I go ahead and get the surgery. The problem is that there is no going back.

Has anyone else agonized over this decision like me?
I would like to know anyone with this sort of personal experience?

 

[tpd320]

I had the surgery about a year and a half ago. The reason I needing it was because of the stricture that I had, had narrowed so much I ended up having a peforation (hole). This led to a nasty abcess. They went with the intentions of doing the keyhole surgery but they had to revert to open. This led to a longer recovery but was necessary. I was back to work in about a month.

I am glad I had the surgery because I was able to function again. Before, I was in constant pain and could not function for the most part. I just laid around in agony. The surgery has taken care of that. At least for now anyway.

I did however, start to flare about three months after the surgery. My doctor told me that I have a very severe case of crohns since it returned so fast. But, I was put on Remicade and have never looked back. I recently had a yearly check up which included a colonoscopy. Doc said she found no evidence of crohns at all. Which is just a fancy way of saying I am in remission.

I do sometimes feel pressure where my anastomosis is but that is from the surgery leaving me with a little smaller opening where my small intenstines connects to my colon. Doc said if it bothers me too much she can go in and do a balloon dialation. But it doesnt affect me all that much at all.

I was glad to get the diseased portion removed and start out fresh with Remicade. My hope is that this will keep me in remission longer. Starting the Remicade before I had my surgery would have done me no good. My stricture was past the point of recovery. I had too much scar tissue, which no meds can cure.

The surgery plus the Remicade gave me my life back. I know that it is probable that I will have another surgery in the future but I am going to enjoy my life while I wait. Who knows... Maybe they will find a cure or even better medicine before that time comes. That is my hope anyway. I say go for it.

 

[Porkpie84]

Hey Scorpionb! Welcome

Based on my experiences, here are some things I'd keep in mind:

Surgery will not cure Crohn's disease, and may not even provide long term relief. I had a few feet of terminal ileum + colon removed in February of 2009, and I am currently in the throes of another flare. Typically Crohn's will flare up again at the anastomosis (the juncture of the two pieces of bowel where they sew you up), and that's why surgery is typically only used as a last resort or to correct complications like fistulas and abscesses. Surgery may end up setting you on the path for more surgeries later.

One of the long lasting effects of surgery is that you may never be able to eat certain foods again. Because the surgery results in scarring at the anastomosis, that part of your bowel will be narrower than the rest and may increase your chances of having a bowel obstruction (similar to what a Crohn's stricture might do). After my resection, I was told never to eat highly fibrous foods like broccoli, celery, cauliflower, popcorn, etc because of the risk of creating a blockage. Also, your bowel habits will likely change (as you will have less bowel to move food through) - hence why some people develop chronic loose stools.

The length of time you require to recover will depend on the type of incision your surgeon can make to perform the surgery. My surgeons attempted to do my resection laproscopically (through five small incisions that do minimal damage to the overlaying muscle), but when they got in there they found that an abscess would require the more traditional 8-inch vertical gash. Because they cut through my abdominal wall, it hurt a great deal to walk upright for awhile post-surgery. I couldn't even wear pants with buttons on them because they hurt my incision! I'd say that I was back to walking normally after about 6-7 weeks. For the first 2-3 weeks after surgery, I just felt overwhelmingly tired. I developed anemia after my surgery and required a blood transfusion.

One thing I wish I had known about surgery was the potential for seemingly unrelated side effects like hair loss. I lost about 40% of my hair due to a condition called telogen effluvium, which occurs after highly stressful or traumatic events for the body (surgery, pregnancy, etc.). It grows back, though!

I know that this post sounds largely negative haha, but truly, my resection surgery saved my life. The surgeons pulled out an abscess the size of an orange from my belly, which could have caused major problems like sepsis/death if it had gotten into my blood stream through a Crohn's ulcer. It's important to get your flares under control but if the surgery is considered elective at this point, I'm not sure I would personally choose to do it. It's a big sacrifice in terms of time, money, and energy, but for some people it is VERY worth it.

-Cally

Hello Cally,

Im fairly newly diagnosed with Crohns disease. Had an emergency operation to remove an abscess from my terminal illeum this May. It was quite a shock as up until then I didnt even know I had the condition.I noticed a few similarities in this paragraph to my sitution so wanted to ask a few questions if thats ok

1) How long after your surgery did you notice your hair shedding increase? How many did you roughly lose a day? Its now nearly 3 months after my surgery and hair is shedding like crazy. When I wash or brush it a significant amount comes out. And when I gently manipulate it I bring a few strands away every time. Strands also just fall out when I sit there also. I havent noticed any bald spots but my hair doesn't feel as thick as it used to. I did notice a lot of hair around my bed after surgery but I never thought into it as I was worried about other things

2) Did you have low serum ferritin levels? Ive recently been told my levels are slightly under the norm and Ive been told to take ferrous fulmerate twice daily. How did you tackle your low iron if so? Any tips you could shareon vitamins etc?

3) How long did the shedding last after the onset?

4) How did you cope with the stress involved with losing hair? The past few months have been a complete downer as Ive still not back to work after getting a post surgical wound infection. Im finding hard to not stress about the increased hair loss but seeing hairs here there and everywhere just increase my anxiety! Did you worry lots too?

5) How long was it until you noticed your hair returning to its former glory?

Im really sorry for the long message. As you can tell im really worried at the moment. Hopefully your answers will help me with it.

Thanking you in advance for you help

Becky x