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Posted 6/1/2017 8:56 AM (GMT 0)
I have RV crohns with fistulas in rectum and outside vaginal area. For last 20 years.
As I write this post I sit uncomfortably as my rectum feels like it is being squeezed shut by pressure and a ball is sitting in there that won't come out. I have taken three epsom salt baths, Miralax x 2 today, stool softners, gingerale and lemons, real ginger with lemons to help soften stool and help me to go. Nothing is working. I had setons placed last Friday bit this only confirmed to surgeon what she already knew. My rectal area is not salvageable.

I am coming to grips with the fact that I need do something about this. Getting and having diversion surgery is the only option. I am allergic to Remicade, 6MP and most sulfa or flagy medications.

Having this surgery is complicated and scary to me as when I had my resection surgery back in 2008 it was discovered that I was highly sensitive to the morphine and I spent days itching all over despite benedryl. My sensitivity of itching is for most of the narcotics. I worry about how my pain will be managed and my vanity. I know it seems petty.

I should be all over this surgery to feel better and get my life back. I have suffered long enough and my quality of life is worth more then a bag that can be concealed under my clothes.

Did anyone else have issues with pain medication before or after the surgery and how did you manage it?

Thank you in advance.
Posted 6/1/2017 12:33 PM (GMT 0)
I'm sorry, that sounds awful. I had an RV fistula and was miserable.

I understand how you feel. Before my first surgery for a resection the surgeon said there was a 50/50 chance I would have a temporary ostomy depending on the damage. I was so nervous and first
Thing I asked when I woke up was do I have a bag?? I did. However turned out having the temp ostomy was the best thing because it showed me how much better I could feel. I felt normal, even with the bag on my stomach!!

When I got really sick again and the RV fistula was bad it made my decision a no brainer. I knew how good I could feel and that made it worth it. So I had surgery for a permanent ostomy.

Do you know if the surgeon would do an ileostomy or colostomy? Would it be a diverting loop ostomy or an end ostomy?
Posted 6/1/2017 12:41 PM (GMT 0)
My understanding is that it would be a colostomy bag. Complete removal of the rectum.

Thank you for sharing your own story with me.
Did you have alot of pain after the surgery and how long was your hospital stay?
Posted 6/1/2017 5:34 PM (GMT 0)
What other pain medications have you tried that have caused the itching issue? I believe there are only two above Morpheine and that is Dilaudid and Fentanyl. I couldn't handle the side effects of morpheine and got bumped up to Dialudid.
Posted 6/1/2017 7:21 PM (GMT 0)
Blksteeda,

I had dilaudid and it kicked in my restress leg system something fierce!
Fentanly I can't really say.
Tramadol, hydrocodone all now cause itching when taken. Perxocet caused quite the reaction with itching and vomiting. But I found out that it's meant to be taken on an empty stomach and I had just eaten some oatmeal prior to taking it. Years ago. Maybe perxocet will be added back. Wippee!!!!
Posted 6/1/2017 10:32 PM (GMT 0)
My stay was suppose to be 4-5 days, which is what my first surgery was. I was much sicker for this surgery and was in the hospital 11 days. The pain was tolerable with oral pain meds but definitely a hard recovery in my case.

A colostomy bag can refer to what is used for either ostomy. If they are removing your entire colon with your rectum your stoma will be made from your small intestine and you will have an ileostomy, if they only remove part of your colon with the rectum your stoma will be created from your colon and it will be a colostomy.

You may want to ask about an epidural/ pain block for yuor surgery. They offers it for a lot of CR surgeries now and it blocks the pain and is suppose to allow for a quicker recovery with the use of less or no pain meds for the recoberunin the hospital.
Posted 6/3/2017 7:21 AM (GMT 0)
@Cupcakesprinkgal.. when I saw the surgeon she had mentioned that my colonscopy showed my colon was still good and that the left side would be where she would go. Based on that and your descriptions it sounds like she would use the colon and I would have an colostomy.

I would definitely be talking to her about the pain management. Appreciate you letting me know about that option. I know after my resection in '08 and the pain I felt just getting out of surgery.. the nurse asked my pain and I said 12 12! Lol..it's funny now, but I remember not even being able to open my eyes, I was trying to concentrate on taking the pain away.
Posted 6/6/2017 12:03 AM (GMT 0)
DolphinGirl,

6 weeks ago I had most of my rectum removed due to rectal cancer. I luckily get to keep my sphincter muscles so my ileostomy is temporary. There is a fairly new procedure you should look into if removal of your rectum is in your future. It's called Transanal Total Mesorectal Excision (taTME). Only a few hospitals in the United States do it. If you need further information and the name of an excellent, skilled surgeon who does this, let me know.

Good Luck.
Posted 6/6/2017 6:28 AM (GMT 0)
Cmfdrama.. removal of the rectum is definitely in my forseable future. What is the taTME all about?
Posted 6/6/2017 3:06 PM (GMT 0)
To Cmfdrama. U may wanna think hard bout getting your Ileostomy reversed or not. I have heard from a lot of ostomates say they felt better with their stomas than they did once it was reversed. Also many have said they had their surgery, then had it reversed, then for one reason or another had to have their Ileostomy back again. Just something to seriously consider. It's a really big deal.
Posted 6/6/2017 4:08 PM (GMT 0)
Lubessa..you aren't the first person to say this. I have been researching and come across several people who have been very thankful to have returned to the ileostomy that they had temporarily.
Posted 6/6/2017 10:47 PM (GMT 0)
Hi Dolphingirl,

I hope this link helps -https://consultqd.clevelandclinic.org/2016/10/tatme-rectal-cancer-gains-momentum/ . Not sure if you would be a candidate for this type of surgery or not. UMASS Memorial in Worcester, MA also does this type of surgery.

Lubessa:

Reversal surgery is my next research project. I can't imagine having this for the rest of my life. I'm so over it already. I feel like a prisoner to it. On average, I empty the bag 7 times a day and I'm still trying to find the right bagging system to use. I haven't slept comfortably in weeks because I have to sleep on my back and I'm a side sleeper. The skin around the stoma is starting to get irritated and having the pouching system is uncomfortable as well. There are more annoyances, but I'll spare you the rest. I do have 5 more months to go before the reversal can be done.
Posted 6/7/2017 12:13 AM (GMT 0)
To my knowledge that is another procedure that wouldn't be recommended by most CR surgeons for a patient with Crohn's disease because the disease can even affect the anus. Many options that are available for cancer patients are not an option for Crohns patients.

Being reconnected is usually a very different outcome for IBDers vs cancer patients. I don't think experiences from IBDers to cancer patients and vice versa about reconnection are the best for researching reconnection outcomes because Crohns patients are mostly dictated by the disease not just retraining bowels or learning to work with new plumbing.
Posted 6/7/2017 2:24 AM (GMT 0)
Thanks for the info cupcakespinkgal. I'm not too familiar with Crohns or any other IBD conditions. I hope I haven't insulted anyone with any suggestions or comments I've made.
Posted 6/7/2017 4:59 AM (GMT 0)
Lots of information to have here. But, cupcakespinkgal since I had adult onset leukemia with my 6MP purenethol I think definitely cancer surgeries would not be the same for us crohns patients. We are getting rid of diseased parts that no longer are functional.

I am doing my best to make the best of this seton placement but it's trying. My fistulas never drained this much on a good day. I was usually trying to get them to drain myself. And, the smell is not pleasant. My fistulas vaginally never smelled bad. I assume that the smell is coming from the rectal fistulas, since they are now draining out of the vaginal fistulas.

I am taking 1 hour or more Epsom salt baths to cleanse the area. Honestly though, I fall asleep in the tub because it's the only time I feel like I am not in discomfort . I have a heating pad on my butt as I type this to help with pressure feeling and I just spent 30 minutes or more on the toilet. Thankful for miralax, stool softner and gingerale with lemon. I felt good for about 10 minutes. I assume however, that despite emptying what I felt was alot.. it caused strain on the rectal area and now I am feeling pressure from that. Epsom salt bath will be the next step. Oh, I did take Tylenol.
Posted 6/7/2017 11:05 AM (GMT 0)
cmfdrama not at all, just trying to point out not all reconnections are the same and I wouldn't want someone with cancer to be discouraged by our reconnection stories on here (a lot of IBDers on here) because i think Crohns patients success rate is much lower than patients who are reconnected after surgery for cancer, diverticulitis, etc.

Dolphingirl I am so sorry that sounds so familiar to what I was going through last Winter. I would never sleep for more than an hour due to pain and would cycle through rotations of the bath tub and heating pad trying to find comfort. Fistulas and rectal disease are the worst!
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