Hi Barbara, 

That is a difficult decision to make, but I'm glad you're looking at it from all angles. 

Personally, I'd opt to remove the problem parts and move forward from there. In my own situation, I had to remove the rectal stump months after my ileostomy because it would continue to be a problem in the future. Sounds like you're in a similar situation, although yours doesn't sound like it was part of the plan (mine was). 

I know that you're in more of a rush to decide because of the pain, but I hope you're able to make the best decision for yourself based on your options. 

Good luck! 

I am not a Dr. but if I were u, I would get second options......... 

You seem to have many complaints and something has to be done..  Also, you  have had a rough year.. Maybe things have to get adjusted now, so - The body is a delicate being.. Yet, so tough............. I had to get MY MIND into a proper healing before my body could heal..  Yes, I too, had many set backs-pills, but my major healing was my mind.. Then everything came into focus. I feel this is a MUST for everyone that experience any illness......... Heal the mind--

Thanks Eric.  I appreciate the fact that someone else went through tis type of issue.  One of the most painful things right now is that it feels like I fell on my tailbone on concrete. They treated it with hydrocortisone suppositories. A 4 day treatment lasted about 3 days then it came back again. Mine was left so it could be reattached but the doc told me then that I probably wouldn't do it. He said reconnect is more difficult and it is hard to get the plumbing ever working well. So, your thoughts are similar to mine,. Get it fixed and move on with life.

Marcie, I haven't talked to another surgeon, but my rheumatologist and my primary care doc (an internist) both think it would be a pretty good idea to get it done.

well, there u have it........... IF problems continue, fix it.. and if the Dr. say go for it? ......?

Seems to me if I were in your shoes, that is hat I would do. DONE!!

Hi Barbara,

Like the others have said, these are serious considerations. But, it looks like there might be a good option to make at least some of the pain go away. I guess you would still have to cope with the RA, but with your entire colon removed it would certainly reduce the inflammatory 'load' on your entire body. It might even be that some of the anti inflammatory treatments would then work better. That is what I was told anyway. ASK the doctors. And, the divirticulitus would be gone maybe?

Also, you have the oddly placed stoma, right? Belly button. Maybe that could be relocated to a more usual place where the wafer would stick better.

Since, you are most likely NOT going to get the stump of your colon reattached, this seems like it would be a good move.

Make a good list of questions for your doctors.  Going through one more big surgery might be better than a bunch of smaller ones and opiates forever.  You have to consider the quality of life you want a year from now, and work towards that.

I will keep thinking!

And, why is it IBS and not IBD? It seems like your colitus is severe.

Keep asking questions.... someone will know or learn the answers.

Hello Barbara, My Heart goes out to you. You may have struggled with Stella when she came to you but coped and now seem to be doing well with her. just the other day you said it had been a 3/4 day period between changes and no leaks ! I have no doubts you will cope and reading your post I think you have made up your mind what is best. No one can live with uncertainty or constant pain. Reason with your thoughts review the comments and replies and the answer will become clear.

Yup, I'm the one with the weirdly placed stoma. The Stoma guard I talked about the other day is helping with that a lot. The back piece on the guard puts gentle pressure on the wafer and it stays stuck. I have been thinking too that it may help get my RA under control. I think that if there is a lessor load on my whole system it will improve somewhat. Glad to see that others who have "been there" seem to think like I am thinking.  I was beginning to think I was a bit crazy for asking for it.

Your the boss Barbara......... Make it work for YOU!!! Do the "why not" thing with the Dr. There is a way around this pain.. Your RA as many others  have this will always be separate.. 

Get you list ready---------Time to start healing and advance on accepting the RA, and join groups with that issue.. 

First things first.... You can do it with grace........ Now go have fun at the lounge.. :-)

The reason i was given for IBS  instead of IBD is thT they wont say i have chrone's disease

What is the difference of IBS and IBD ???????? just wondering.

I think it goes like this:

IBS  ... Irritable Bowel Syndrome.  This is more or  less a catch-all used to describe all kinds of maladies involving the bowels.  It tends to be less severe. Syndromes are usually a collection of symptoms the cause of which is not fully understood

IBD ...Inflammatory Bowel Disease is an autoimmune disease. The main two categories of this are Ulcerative Colitis ( mostly involving the colon) ,and Crohns disease which can have manifestations in any part of the bowel. The small intestine, ( ileum)  Large intestine ( colon) ,rectum, even mouth. People with this sometimes develop fistulas.  

IBD is often treated with immune suppressants since it is an auto immune disease.

If this is not right, please chime in!

Both sounds horrible and truly I think one of these is subject to only one surgery (text book style) when both need surgeries after a time.. Sounds like an ever lasting infectious issues. 

Of course.. a lot of us were first treated with immune suppressants and they were not effective. Thus, our stomas! Reasonably our doctors begin with the easiest treatments and move on from there. The trouble is that it takes so long to find out what does or doesn't work and then move on to the next one. Typically years, by which time we are all quite sick both from the disease and the effects of it. Weight loss, and malnutrition  lack of sleep, social isolation,

Barbara,I am not sure where diverticulitis figures into this..but it sounds painful and like removal of the rest of your colon would take it all away.

Like we all have said.. keep asking questions when you see your doctors. Write them down, and write down the answers!

Dona, from what I have learned you are pretty close to being on the mark.  I was also told that IBS is often a precursor to IBD.  IBD is a lot worse. I have been on immunosuppressive drugs for about 6 years now. They are a frustrating hit or miss game too. There are lots of drugs that were made for one disease and they found that while treating someone for a particular disease that also have RA, the RA improves so the med gets authorized to treat RA. For example methotrexate is one of the first drugs tried for RA but it is a chemotherapy drug (read--poison) used for breast cancer.  The game is to find a drug that helps without side effects that try to kill you.  Methotrexate put me in the ICU in complete pulmonary failure on a ventilator for 5 days.  It takes several months to experiment with each one ... Life can be hell while finding the right one.  Right now I take plaquenil as part of my drug cocktail.  It was made to treat malaria. ( I can safely walk in the woods and let the mosquitos bite away ... No malaria). My rheumatologist says he works in a branch of medicine that moves at a snails pace.  I just don't have the strenght to deal with a  2nd disease that the treatment moves so slowly for.

I know how that goes!

Methotrexate made me really sick too. They gave it to my mother who , as I said before, had severe RA and psoriasis. I don't think it helped her either. A lot of the same drugs are used for cancer treatment. One of my last was a drug that is used for people who have received organ transplants to keep them from rejecting it! YIKES.  I think I lasted on that one for less than a week! unsustainable. 

I hope you can find a solution where you can reduce the amounts of drugs you have to take , both for treatment and for the pain.. 

The immune suppressants also make it more likely to get other illnesses. Big down side there. Perhaps if you didn't have the pain from the diverticulitis you could more effectively deal with the pain caused by the RA. It is a mystery.  Even some of the the doctors  and health care workers are confused it seems.

I think that is why it is the "practice" of medicine.  I feel like the ginie (sp) pig.

Barbara haven't been on here much last couple days  . I'm seeing what you are going through Im sorry you now have this problem too . Everybody sounds very good with their suggestions to me . I think you have a hard decision no doubt and I sure can't tell you what it might be . But I think if you take one thing at a time and beat it ! Like I think you can because you are strong you have already beaten a lot . You will have the quality of life . Then the quantity will follow  .