Colon removal

[Stuffette]

colon removal

So my cousin (my mother's sister's daughter) is still in the hospital after a month and is getting worse and not better. She has colitis. Her gastro doctor has recommended that she have her colon removed. Her primary care physician is against the removal. She is torn with this decision. She is 24 years old, just graduated college and has just started her first full time job. Luckily she has insurance right now but probably not for long if she stays in the hospital like this.

This is now the fourth person in my family with either Crohns or Colitis. We think my sister and nephew have something going on as well. My nephew, who is three, has to have all of his teeth replaced because they have rotted from all of his vomiting and gagging.

Anyway, some advice for my cousin?

 

[Cog]

I am sorry to hear about your cousin. I had that choice 4 years ago. It was not easy. I did get a second opinion from another GI and spoke to a few other doctors. in my case my intestinal walls had thickened too much having had Crohn's for 20 years. Initially I was trying to persuade the surgeon to do a partial colectomy, then he promised only one visit to my insides and no more colonoscopies we agreed on a full colectomy and he connected my small intestine to my rectum. If your cousin does have surgery, having it done laproscopically is definitely the way to go. I was walking down the mall in a week. I hope this helps

 

[Kev]

This is a life altering surgery.. I'm contemplating it, and having a tremendously tuff time with it... don't think its' something that anyone can advise on.. for the person involved to make their decision on. I have heard from some who've gone that way, and post op are so very glad they did. But I think thats' because theyd' decided for themselves. If someone isn't at that point yet, and allows others to convince them (aside from the best medical advice they can get), then there's no going back after the operation. Then how are they going to cope with their life post operation? You know what I mean? For myself, I think the operation is just inevitable.. I just want to feel inside that I did everything humanly possible to avoid the operation first... even if that means I have to prolong my suffering, and damage myself in the process... even to the point where I no longer have a choice

 

[Stuffette]

She's having the hardest time with this since she is getting different advice from her doctors. She has been in the hospital, drinking broth and wearing diapers for over a month. They can't get her stabilized and feel like this is the last resort. She wants to tough it out and try to get through this but it sounds to me like her doctors are looking for the easiest way out of getting her out of the hospital as soon as possible.

They let her home when she wasn't going in the diaper anymore without any resolutions but she had to be admitted again a few days later.

I'l keep you all posted....

 

[brass_marsh]

Surgery?

I'm a 24 yr old from London and I've been diagnosed with Crohn's for 3 yrs. Yesterday I had my second colonoscopy and my consultant saw that the latter part was 'damaged beyond repair'. We were going to go on to Infiximab as I can no longer use steroids (other drugs I've been on-Pentasa, Azathioprine, Antibiotics in that order) but after the procedure he suggested cutting out the damaged part seems like the best solution. Any advice would be very welcome and if I can give any back don't hesitate to ask. Thanks

 

[Kev]

Well Brass_Marsh.. first, welcome to the forum. Second, 'damaged beyond repair' is a pretty definite diagnosis. If your consultant recommends partial resection of your colon, I hope my experience will alleviate somewhat any fears your have of doing it. I am not recommending it per se... as I stated before, its a deeply personal decision. I had a resection, they took out 1 1/2 feet, and it was literally a walk in the park. It had to be the easiest operation I've had, and the recovery was remarkable easy and quick. Post op was the best that I have felt in several years.
There are risks with any procedure, and I don't want to minimize those.. and there is a risk of developing Short Bowel Syndrome, where you lose that much colon the need to go to the bathroom is fairly constant. I'm sure your doctor will advise you of the risks.. In the overall scheme of things, the surgery should be the 'least' of the things one should worry about. The one thing I would venture in the negative is that one shouldn't equate an operation to being the equivalent of a cure, okay?
Afterall, the stated intent is to remove the section damaged beyond repair so that you don't rupture, perforate, and possibly develop peritonitis, which can kill. Geez, I hope that this makes some sense... I'm writing it in a pretty thick head fog, OK?

 

[brass_marsh]

Hi Kev,
Thanks for your thoughts. Even though as you say a resection is no cure, at least it's good to know that you've had it and that the recovery period is not so bad. I wish I knew the chances of a lengthy period of remission afterwards. Thanks again,
J

 

[crohnsmom]

resection surgery

Hi brassmarsh-thought I would share my son's experience with resection surgery with you. My 20 year old son had resection surgery at the end of May. He had an area of damage that was way beyond repair in the ileocecal junction as well as a large abcess and the infection had also spread to his appendix(not unusual because of its location). Prior to the surgery his quality of life was really suffering. He had long stretches of time when he could not eat any solid food at all, was subsisting on ensure, was in constant pain, and was tired and continually loosing weight. There was no way to repair the damaged area with medications, namely antibiotics and prednisone, which only kept the inflammation and infection from spreading to any surrounding areas. It really was a no brainer for him-surgery offered the only promise of improving his quality of life. Because he is a college student he postponed the surgery until the end of the semester to complete his courses. This was the most difficult part-making it through the months from January to May feeling horrible most of the time. Thankfully due to his overwhelming tenacity he was able to make it.
The surgery was an overwhelming success-although not a cure,by 48 hours post op the quality of his life was already improving. He was eating solid food for the first time in months without pain , 5 days post op we were able to take long walks of more than a mile at a time, and 7 days later on his 20th birthday we were able to go to one of the finest Italian restaurants in Boston and completely pig out! His check-up at 10 days post -op gave him the go ahead to resume all normal activities but heavy lifting, and at that time he went back to his dorm and back to his life!
Blood tests this past month show no evidence of inflammatory markers, and he is enjoying this remission for as long as it lasts. Unfortunately that is the best anyone can hope for-I know people who have had more than 10 years of remission after surgery, and others who have had only weeks. There is no telling when this disease will rear its ugly head again!
This is a decision only you can make based on your own medical condition and the best input from the medical professionals treating you. I hope sharing this experience helps.
Take care,
Sincerely,
Ramona

 

[KCMike]

Hi crohnsmom. Your son is a real trooper. Making school a top priority over pain shows real courage. It really puts things in perspective when you hear about "normal" kids complain about anything. I'm approaching my one year anniversary since my resection last October. I've been symptom-free the entire time but not a day goes by that I don't think that I may have to go through the whole ordeal(pain and suffering, weight loss, surgery...etc.) again. Every symptom-free day is a reason to celebrate but I feel like I can't have too much fun because the Crohn's demon that is inside me will awaken. Maybe I should have an exorcism. Has anyone tried that...just kidding.

 

[brass_marsh]

Dear Ramona,
Thanks for sharing your experiences. I'm glad to hear your son is recovering so well. I also know how difficult it is for you as a parent as telling my grandmother (my main guardian) was the hardest thing so far about being told about the operation. I want to go ahead with the surgery however the circumstances in my case of being told I needed it are odd in my opinion. From the months of March til June 2007 I had my first period of remission since my diagnosis in April 2004, in which I had no symptoms-the first time that I could be on no medication at all. This I believe and still believe is down to my work with the Alexander Technique (in fact I'm curious to know if anyone else has explored the technique and found success). It was therefore a massive shock that although I'd been feeling well up until July, the condition of my colon had nevertheless continued to deteriorate. Thanks for listening,
J

 

[crohnsmom]

Thanks, KC Mike
We not only think our son is a trooper here, we think he is totally amazing! There has never been a moment, either befor his diagnosis or since that his father I and I have not been proud of him. I could go on and on, however since he posts on this forum also I will contain myself for fear of embarrassing him!
I wish you continued health post resection-enjoy every moment!
Sincerely,
Ramona

 

[kpratte]

I've had similar experience before and after surgery (resection 13 inches).. I got to the point where drugs (prednisone) wasn't doing much for me and based on xrays they could see that I had some narrowing and scare tissue giving me my issues.

My surgery was laparoscopic and I spent Monday through Saturday in the hospital and was back at work 6 weeks later. I spent more time in the hospital because I had a reaction to something and had a miserable couple days (vomiting) but got to check out morphine. God that stuff is great.

- Ken

 

[Sojourn]

She is 24 years old, just graduated college and has just started her first full time job. Luckily she has insurance right now but probably not for long if she stays in the hospital like this.

It doesn't sound like she's been employed for a year, but if she has, she would qualify for FMLA, Family Medical Leave Act, which would keep her insurance paid while on leave and they couldn't fire her. Otherwise, it depends on the employer. I was not employed for a year when I went into the hospital and was out of work for two months but my employer continued to pay my insurance for those two months. I did get another job afterwards and went on COBRA. COBRA is very expensive, but that would be an option for your cousin if she loses her job.

 

[Shoeless]

I had a resection. I need another will get soon does anyone have the Bag. how is it getting used to it what do have to do with it

 

[Stuffette]

So my cousin is in surgery right now. The good news is she got up the strength to get to Mt. Sinai in Manhattan and get the best care possible. We are all confident that she is doing the right thing since she got the same advice from both hospitals plus Mt. Sinai is a very good hospital.

I am sure she will be on here soon asking lots of questions about how to live with her new situtation.

 

[Cog]

Wishing her all the best and a speedy recovery. If they are connecting her small intestine to her rectum - what they forget to tell you is that part of the small intestine will expand a little and act like a sort of colon. I read that after surgery. Life is not too bad afterwards.