rectal strictures

by Pat
(Tacoma, WA)

I have a rectal stricture. Last month I went to the hospital and had it dilated in the OR under general anesthesia. This week I saw the doctor and he checked it and found very little improvement. I am scheduled to go back to the OR next month for another attempt.
In the office, he told me the only sure cure is rectum and colon removal and an ostomy. I have been a wreck ever since. I need some hope that the dilation will work. I can't handle the stress and worry at this time.
Any advice or positive thoughts?

Comments for rectal strictures

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Rectal stricture
by: Anonymous

@justforthisnow
I would love to know how you made out. I am having the same exact problem only my doctor said it's just a matter of time as to when I will need a complete colostomy. My email is phillyeagle715 at yahoo dot com. Please let me know.
Things that can help a stricture
by: justforthisnow

I have had a rectal stricture for 6 years. It caused constant severe constipation and pain. The docs gave me lost of laxitives (which did not work because the stricture stayed closed), and I could go 1 to 3 weeks with no BM. The only option I was given was total colon removal. The stricture in only about 1". I finally, after years of searching, found that Refaximin helps considerable (search on SIBO), there is a doctor in Oregon that has a very comprehensive site about this treatment, and they are using it in other countries.

And finally, I found a colorectal surgeon in Florida that reviewed all my CT's and records and said I could be treated without a colon removal. I was freaking out at the thought of a colon removal after having had 5 surgeries for colorectal cancer (and being diagnosed later with Chrons). I'm going down to FL in a couple of weeks for my exam and treatment. Don't freak out, or give up. Don't let them remove your colon, you will end up with more problems. Colon removal is required if your colon is diseased, not for a stricture that CAN be repaired. I am not a doctor or nurse (disclaimer), but am telling you from my personal experience of searching forever. I don't think I can post the doctor's name on here, but if you can post your email, I will let you know what happens and how things work. Don't give up. I know what you are going through.
Humira
by: Anonymous

After a few dilations for my rectal stricture and I'm still having a lot of pain from straining, my doctor has decided that the inflammation needs to be treated with a biologic and has prescribed Humira. He says that the reduced inflammation will help me to heal and possibly go into remission and also help the stricture. My problem is that I have read so many scary things about the biologics that I'm terrified to use them. He says it's benefit vs risk and I know he's right but I need some positive reinforcement to give me the courage to go ahead with the treatment. I find mostly negative reports on the internet and I don't know where else to seek information. Is anybody here taking a biologic and feeling that it is helpful and worth the risks?
In similar boat
by: Anonymous

Hello Pat!

I have an anal stricture too; not due to Crohn's but because of surgery involving the colon (this difference of our individual cases is something you might want to keep in mind while reading my post).

I've got it dilated endoscopically three times, over a period of two months with an average interval of two weeks; under sedation. A fourth round was advised by my doctors who saw scope for further dilation, but I have not got it done yet due to having to return to work related commitments. I shall be getting it done soon.

My condition greatly improved after the third round during which a steroid injection was also administered into the stricture. The relief, however, lasted for a month and during which time it was absolute (read fantastic) in nature.

My doctors had anticipated this deterioration of the relief, hence they've advised a fourth round of dilation.

Although my stricture related pains are back and are manageable only with the help of laxatives, I look forward to having the fourth round of dilation done and hope for the best.

One important thing to keep in mind that all strictures are not the same. In my case. for instance, it's quite fibrotic and hard and hence resists dilation. That might not be the case for you. There are medical reports that document complete resolution of strictures through dilation with steroid injections (an option you might want to explore further and discuss with your doctors).

And I cannot say that the three dilation sessions haven't done me any good at all. The absolute relief lasted a month but despite the return of the pains now, I do notice a little improvement with the stricture. Earlier it was difficult to induce bowel movements despite the laxatives, now its slightly easier.

As is advised in an earlier post, it would be best to avoid removal of organs as long as possible. My humble advise would be to stick with the option of dilation and let's hope for improvement, or better still, complete resolution of the stricture.

(My doctors have advised me against home dilation as in my particular case, the stricture area is angulated and I would risk self injury if I self dilate. My doctors are all from Gastroenterology.)

Despite having battled with the problem for two years now, I still feel that I am stronger than it and will eventually defeat it. I'm sure you are stronger that it too! = )

rectal strictures
by: Anonymous

Get a second opinion from a colorectal surgeon. Generally, they try to be very conservative - i.e. as little surgery as possible. I had a proctocolectomy when I was 33 (female) and it gave me back my life, but my colon and rectum were totally Crohn's'd and I was in incredible pain and crippled with exhaustion and by the medication.

Some years later after a few ileal resections I ended up with intestinal failure (aka short bowel syndrome aka malabsorption) - irreversible in my case and it has invalided me. So surgery does not always provide the answer and I would encourage you to hang on to as many organs for as long as you can.

The caveat is that a stricture of the rectum is holding all the waste in and this can lead to a poisoning of the body. One starts to feel as though one is literally dying. I have been there. If the stricturplasty is not working then it would indicate that the anal tissue is nearly all wound tissue. From the literature it is fairly common that strictures revert back to their original form after mechanical stretching. I would be wary about trying to do any DYI at home. Firstly, because of the excruciating pain. Secondly, if it tears when you are in the process, you suddenly become an emergency patient.

For other than IBD patients the docs would suggest a colostomy if sufficient colon was viable. However, for Crohn's patients an ileostomy seems to be the first port of call with no other real choices (such as a pouch for ulcerative colitis patients) if surgery is absolutely necessary. It is a shame because a colostomy is generally a lot easier to manage than an ileostomy.

I think that you also need to check that you have exhausted all possible avenues of treatment. Have a look at the clinical guidelines for Crohn's in your country and check whether or not there are treatments that you have not received. In the USA, for example, http://www.guidelinecentral.com/_webapp_1824920/American_Gastroenterological_Association_medical_position_statement_perianal_Crohns_disease

Guidelines are just guidelines and are not compulsory for doctors, unfortunately.

Another thought is that a planned operation has a greater success rate than an emergency operation. It might be a good idea to keep a patient diary and also to write down the pros and cons of the surgery. It does sound to me that you are very near to losing your rectum and some sort of an ostomy is the only answer for a Crohn's disease.

I did hear of a lady who was going in for an ileostomy and prior to her hospitalisation she threw a bag party where everyone had to come wearing a bag on their tummies. My bag has not stopped me from travelling the world, scuba diving, weight training (careful on the tummy), cycling, swimming, dancing, etc.

I hope that you get things sorted out.

Lydia D.
embarrasing but helpful
by: Lili (NJ)

Hi Pat,
I do not have Crohn's but, my husband does so I now a little of what you are going through. I also work in the field and about 80% of my patients are Crohn's patients..
For rectal strictures there does come a time when you must have them dilated under general anesthesia but, there are "rectal dilators" that you can purchase on-line and start to use them in the privacy of your home.(just make sure that you are not having a flare up)
I do not know if you are a male or female, but usually the man have a very hard time doing these anal/rectal exercises simply because of pride...
They do help and they do cut your trips to your GI specialist.
Look into it and think about it..no one has to know and you can do it in the privacy of your home.
Just remember that this is not going to cure your strictures and that follow ups with you specialist are a must.
Good Luck...

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