Just hugs and hopes for some sort of positive outlook.
Sharon

I am sorry for your test results.

I am not sure I understand this. When you say remaining five feet are you talking about your entire jpouch and intestine above it (for a total amount of five feet) or all the 5 feet of small intestine above your pouch? Have you been having symptoms and that is why you had a biopsy and scope?

I think the plan now will be to treat you medically as best as possible. The cuff can be treated with canasa or anucort suppositories (also cortifoam). They can try antibiotics for the inflammation in the intestine and possibly stronger IBD meds as DJB has indicated.

I have been dealing with a lot of this the entire time I have had my pouch and my cuffitis has been pretty refractory to treatment (does not mean yours will be). You want to start treating this medically as soon as possible to get on top of it.

Hi Jeane and skn69. Thank you so much for responding. That means a lot. I have had a number of obstructions with smalll bowel resections, thus leaving 5 feet of small bowel. Apparently there are ulcers in the pouch, and I have an appt. today to get results from primary care doctor. Then, in two days I have an appt. to meet with the G.I. clinic. I have been a wreck. Oddly, my whole back side is so painful, that I can barely move and is getting worse. I have no idea if it is related to the pouchitis. Anyone had that problem? Hugs to you both. Thanks for writing. And good luck with yours. Sally

I am so sorry Sally,
When you say 'backside' do you mean the buttocks (like the muscle part) or the tender under-parts?
If it is the buttocks then it may just be that you are so stressed that you are unintentionnally tightening everything down there and you are feeling it...if it is the tender under-parts...well they seem to be taking a beating right about now...could be the sigmoidoscopy? Sometimes things swell a bit afterwards...if that is all that it is then a couple of tylenol usually work for me.
Hang in there and keep us posted on what the doctor said.
Sharon

Hi Sharon! The paiin is across my whole lower back, including buttocks. It keeps getting worse . . . probably the sigmoidoscopy. They put me in twilight sleep but it sounded like a roto rooter in there, and I had a lot of pain and some blood after. I also have slight scoliosis, and degenerative disc disease, but it probably added to the picture. I am 60. I have been in bed with a heating pad for over a week, so it was about time I go up and went somewhere! Thanks for your concern . . . so very much. Sally

Sharon, have you ever come across a situation like mine? Sally

Sorry, it's Sally again! Yes, I ordered the pouch checked because (l) I didn't have insurance and became a member of a county facility to manage health, and (2) I was having a lot of anal leakage and so many water stools a day. Sally

Sally,

The lower back pain and pressure is most likely from the UC in your cuff. I have the same issue. I also have what I would call a pain that envelopes me from the front of the pelvis to my back (almost like deep premenstrual type pain although I no longer get my period).

Hot baths help as well as the heating pad. When both the cuff and lower distal pouch are impacted (distal pouch with pouchitis), I sometimes feel like my bottom is going to literally drop out when I need to empty my pouch.

Try and not get yourself too nervous as it will not help your healing. The meds will hopefully start giving you some relief. My concern would be how they will manage the inflammation in the small bowel as hopefully the cuff and pouch can be managed with suppositories and possibly antibiotics and these may also help the small intestine. If not, 6 mp and possibly biologics can help. I empathize with you as I can totally relate to your pain. I hope you are feeling better soon. The cortisone seems to be helping with my severe cuffitis.

Hi Sally,
How are you feeling today? Better, I hope...to answer your question, No, I have never heard of a case as extreme as yours and I have heard a lot..5feet left and it is ulcerated...Darn, that is hard to live with. You may be experiencing some absorbtion problems and be ware of taking your meds by mouth, they may just run right through your or worse, irritate the intestinal lining even more...I don't like that fact that you have been in bed for a week though, if possible get up a little bit and walk around your home for 5 mins...you need to keep your body moving to get some of the pain to subside...or you are going to end up with more pain instead of less, your muscles are going to atrophy if you stay flat for too long and trust me it doesn't take long for it to start...if it hurts too much to walk then try just getting up, standing for a minute at a time and then laying back down...keep us posted on what is going on.
Sharon

Sharon: Thank you for that information. . . you are a smart cookie! Like you said, I got up and took a walk today and am trying to stay up more and endure pain. Tomorrow I meet with g.i. clinic and will ask about absorption (very very good question) and prognosis. The prim. care dr. gave me two antibiotics yesterday for a total of three days (since I will see dr. tomorrow).. . Metronidazole 500 mg. and Cipro 500 mg. I think I should have had these a couple of weeks ago, personally. You sound like you have had a horrible time . . . how are you feeling today? Sally

Doing ok today, thanks...I have worked hard to force my body into workouts...I started out climbing the stairs once an hour in my house...now I am up to about 75xs a day...I count. I add weights to my hands sometimes too and wave them around like an injured bird to get the circulation going in them and build some muscle back up...all the surgeries really took a toll on my muscle mass and weakend all of the abdominal and back muscles. I am combatting that now. After all of my time sick it took months of very slow and steady work to build back some strength in my body. Without it I was just one big ball of pain.
Now I have pain, in areas like my lower back/sacro-ileal region but my arms and legs are fine and I have finally gotten a bit of muscle on my abdomen which goes a long way to relieve my back pain and help to protect me from hernias.
It has been a long run and very difficult at times but when you start to see the end of the tunnel it feels great.
HOpe you get there soon.
Sharon

Did you ever consider the ileostomy again? Just curious. Sally

Sally, as my dad always said, I am as stubborn as a mule! I never wanted an end ileo and fought like the dickens not to have one...it was never an option for me (mentally speaking)...I was too young and too sick to have that added to my load...I was very, very lucky at 18. I met Dr Cohen after a series of last ditch surgeries that unfortunatley failed (not the doctor's fault, I just do not heal well)...Dr C gave me a lot of pamphletes to read with a dzn different options ranging from end ileos that had 'magnetic bath tub plugs' as closures, bags, loops, and finally the k pouch. I jumped at the opportunity and never gave up on in.
He finally agreed after having me jump through a dzn medical hoops (boards of surgeon, psych evaluations, tests, emams...etc). I was number 13 for him. It was supposed to be a 1 step but at the last minute he changed his mind and left my colon in. Disaster.
Step 2 ended in me waking up in O.R. and surgery stopping mid-way. Step 3 was 9 months later. Each and every time he offered me the option of an end ileo. I always refused and trusted him and the k pouch.
It was a long and difficult road. I have had complications over the last 12yrs that have made my life a nightmare but I still hang on to my k pouch...and my surgeon. Things are better now too.
No, I never, ever regretted having it done. And hopefully never will. It was the very best thing that I have ever done.
Sharon

Good story, Sharon. Thanks!

Well I got my biopsy results. BENIGN! However, they are scheduling an endoscopy and sent me home with metronidazole and cipro and two more weeks of Rowasa enemas, indicating that I have crohn's disease as well as the UC that came back in the rectum. They biopsied 15 2mm to 4mm polyps and did a blood workup to see if I have short bowel syndrome and will biopsy the other end of the small intestine when they do the endoscopy. I feel like you know what! I want my mom!! (too bad she passed away ten years ago). I am pretty frightened, and in so much pain. Woe is me!
Sally

I am sorry Sally. I am sending thoughts and prayers your way. I am in a rough spot too at the moment but less concerning than your situation. I hope they can help you with meds, possibly some biologics. Thankfully the tests are benign so now you can concentrate on the appropriate treatment to help you feel better.

I remember how relieved I was when my final colectomy report came back indefinite for low grade dysplasia, as going in I was diagnosed with it. Sometimes it is very hard to focus on that result considering everything I have been through since the surgery but I try and remind myself of it often. Hopefully focusing on the benign results may help ease your discomfort even if it is in a very small way.

Thank you Jeane. You are so sweet. And, you are right . . . concentrate on the positive. Unfortunately they are doing the endoscopy to rule out polyps/tumors at the end of the small intestinen they could not get to with the sigmoidoscopy. For some reason, the meds nauseate me a little, and my tummy is tender and pouch (no pun intended) ever since...general fatigue. I had the black tarry stool yesterday, and can't figure why. But, if it happens again, I will call the doc. They are closed today. I am trying to figure out what to eat! I was eating baguettes (french bread) but read that it was not good for crohns. So, I just had a banana, and yogurt a little earlier. My diet seems to be changing with this new addition of crohns to my already historic j pouch. I hope you are feeling better today. Sally