4 months post op reversal... How do u feel

lovedby2Member

Hello, I'm new to the site and could really use some help. I'm going on 4 months post op ileostomy reversal and still have so much pain in the anal area. I have no colon and rectum removed. I can not eat a variety of foods, if I do it causes either major gas and bloating with horrible rumbling pains. Or I get severe diareah! I have been hospitalized once since my reversal for about 2 weeks due to severe stomach distended and vomiting 3 weeks after my surgery.
My main concern now, is that I have anal pain, burning and afraid to eat. I just lost my insurance through my husbands job and was denied Medicaid. I was told I need to be dialated and that I have fistula tear!? I have "flare ups" it seems, even though I shouldn't have UC anymore. The inflamation causes blood and pain to use the restroom. My body also goes into these contraction type pushing episodes while using the restroom!?
I was taking cipro, metronidazole, fluconazole.
I am taking tramadol for pain, hyoscyamine for spasms, lomotil for diareah.
Any advice as to what I can do about not having insurance?
Any reasoning as to why I still hurt in that area and why food affects me in one way or another. I go about 10+ times a day and 5+ times at night... Not always actually "going", just urgency and small partials coming out... Followed by occasional blood, some to point of changing the water red in the toilet (TMI) sorry.

Diagnosed in 2011 ... Rapid severe ulcerative colitis weighing 148 pounds ... I now weigh 110 pounds.
Just want a better quality of life.

Any help is appreciated... Daily regimens, foods, etc...

2/8/1310:53 AM

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lovedby2Member

Forgot to add
Diagnosed with unresponsive UC in August 2011
Total colectomy with ileostomy April 22, 2012
Jpouch surgery with loop ileostomy August 7, 2012
Ileostomy reversal October 23, 2012
31 years of age

2/8/1311:17 AM

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kathy smithMember

You may have a number of different things going on. The anal burning/pain could be butt burn. For that there are many excellent ointments you can try. The king of skin protectant paste is Ilex. It needs a light layer of Vaseline over the top to prevent glueing your gluts together.

However, the burning could be the result of the fissure (I suspect it's not a fistula). Fissures often take quite a while to heal. Prescription nitroglycerin is what is often used. It does cause a pretty severe, but fleeting, headache. The fissure could be caused by the stricture which could cause you to strain. Yes, it's a viscious cycle. A sitz bath or jumping into the real bath can help with the fissure. Try not to wipe after having a bowel movement.

You may need to be dilated by the doctor. If you have a fairly difficult stricture it would be best to have it done there. But you could then ask if you could self-dilate.

Seeing blood after bowel movements might be an indication of cuffitis. That would be treated with different drugs than the ones you were taking.

If you don't know have a GI who is familiar with j-pouches, but it would be good to see if there is one in your neck of the woods. Even though you don't have insurance, some or all of your symptoms need to be taken care of (initially) by a competent GI.

You should also apply again for Medicaid. Sometimes it just takes a squeeky wheel to get a butt examined.

I'm so sorry you're having such a rough time. Hopefully you'll find the help and support you need.

kathy

2/8/132:13 PM

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lovedby2Member

Thank you for writing me back.
I was told about the nitro, but in regards to help dialate the opening. Now about the headaches from it, how long will this last? I was prescribed to apply for a month!? Did you have trouble with eating a variety of foods?

2/8/132:45 PM

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ClintMember

Hi, have a j pouch since 1999 and pouchitis just once. After going, I use a lot of toilet paper with water and clean myself good. I use Udderly Smooth body cream(from walmart) on the affected area. I am dehydrated a lot of the time, but try hard to continue drinking as much as possible. I can eat anything I want, but if I eat spicy food I know I will pay for it later. I have constant diarrhea, 7-10 time 24 hrs. I use Lidocaine 3% cream when I burn and that numbs the area. It is an RX medication. The best thing I take to control the diarrhea is Morphine 20mg/5ml solution and that is RX also.(MORPHINE IS AN AGE OLD HELP FOR CONSTANT DIARRHEA) I take 2-3 cc before lunch, 3-4 cc about 6 pm and 4 cc about 10 and only get up 1-2 times at night. If it wasn't for that, I would be almost homebound with 20-25 trips to the bathroom. The Morphine does not make you high or anything as it is such a small amount. I also take Tums if I am going to eat the spicy foods and it helps coats the insides of my stomach. I try to have my main meal of the day at noon so that the foods can go all the way thru me before bedtime. I don't eat breakfast and I can go anywhere in the mornings, but have to be careful what I eat before I get home. My wife has the same problems and we both take the same medications.

10/27/152:18 PM

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aka KNKLHEADMember

I am very sorry you are having these issues! It would seem as though you can get some form of medical coverage, I hope! While some would argue "Obamacare" is the plight of civilization as we know it, isn't it supposed to help people without insurance or the capability to get insurance? I hope you can get help.

"Leakage" no matter how it's defined - fissure, fistula, "small leak," etc., is never good and IMHO, deserves immediate attention. Do you feel your current surgeon/doctor is capable to help you?

Sadly, while butt cream can help, and medications -- as Dr. Remzi at Cleveland Clinic might say, "you have a mechanical problem" -- you deserve a higher level of care!

10/29/1511:33 AM

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