Newbie here but not new to Crohn's;surgery concerns

[Wish2BCrohnsFree]

Hello
I am in my 40's and have Crohn's, mainly in the small bowel near the terminal ileum. I had symptoms for many years (mentioning them to my GP) but wasn't diagnosed until 2000 after chronic Anemia and a diagnosis of Osteoporosis prompted a referral to a GI spec followed by a colonoscopy.

The TI was so narrowed, the GI could not put the scope thru to examine. A SBFT, (small bowel follow thru), showed subsequent strictures for which I will be undergoing surgery soon. I have had many blockages, and just as many trips to the ER (not too fond of that place!) so I have learned to be really careful what I eat and chew my food better. This has helped but my GI saying I was an 85% risk for emergency surgery has made me finally accept that I need to go ahead with the surgery.

I have all the usual yucky symptoms of Crohn's as well as the embarrassing ones. My family has been really supportive, especially my husband, although they don't fully know what it's like, they try hard.

I am quite nervous about the upcoming surgery, likely this month (Apr 2010) and have put it off for 2 years. Part of my anxiety extends from also dealing with the pain of Anykylosing Spondylitis and Fibromyalgia. A simple trip to the dentist increases my pain. I do not know what it is like to NOT feel pain, I have it 24/7 both in my joints and in the soft tissue areas.

So I am worried about the usual concerns, infection, scarring, further surgeries, but primarily about the PAIN during recovery. I a worried I will get hooked on pain killers or be really emotional after coming off them. Presently I take the maximum dosages of Tylenol (about 3600 mg/day) and about 600 mg of Ibuprophen a day and 200 mg of Tramadol. I finally succombed to taking Tramadol, to try to get some sleep at night and relax the muscles although I still wake up in intense pain during the night.

Would love to hear some positive thoughts from any in similar circumstances, or who have any words of wisdom!

 

[Nyx]

Ibuprofen is bad for Crohnies! Any NSAIDS actually...if you can get off that, that might help with the Crohn's stuff. Not sure what you could replace it with though for your other pain. And about pain after surgery, talk to your doctor and surgeon about pain management. I had a colostomy in December and was on IV Demerol and Gravol and didn't have any pain at all. When I was done with that just plain old Tylenol worked well (I was only on painkillers for a week, then the Tylenol for about 3 days then didn't need anything). But then again, I don't have fibromyalgia either.

Talk to your doctor! That's the best advice I can give....good luck! I hope it gets better for you soon

 

[Astra]

Hiya wish 2 be
and welcome

Sorry, I've not had any Crohns surgery yet, so can't help you there, but glad you found us cos there's loads on here who can advise you on surgery. lots of support too, don't be afraid, any questions, just ask!
I hammered the ibuprofen for a neck injury, and it nearly killed me! I didn't know at the time that it's a major no no for a Crohnie!
lotsa luv
Joan xxx

 

[Wish2BCrohnsFree]

Newbie here but not to Crohn's

Thank you Nyx and Astra101 for your kind input. I know I shouldn't take Ibuprophen, I learned that from the gammit of other NSAIDS that I took over the years which seriously affected my Crohn's. Unfortunately, at the moment, unless I go onto other harder med's I have no alternative to get me thru the pain. It does affect my BM and so does the Tramadol, just trying to get thru with the lesser of evils.

After surgery I am likely going to start Cimzia to helf with both my arthritis and Crohn's. I am nervous about that as well but trying to tell myself it's necessary.

I wonder what other people have done to prep for surgery, to make it easier, (both mentally and physically) and also what they did to speed recovery? How long before life returns to a somewhat "normal" existence? How long should I prepare to be laid up?

 

[Claire617]

Heya! Was pretty much in the same situation as you before my operation.
Like you I had an invasive operation a month ago today, the best thing ever!!! They put me on an epidural for post op pain, couldn't feel a thing, they took me off that after 2 days then I was put onto paracetamol and tramadol, I won't lie getting the pain under control after taking the epidural wasn't fun and it was a sucky 12 hours, but after that time was FINE!
Got home on the 5th day, needed some help getting out of bed and out of chairs etc but omg how awesome it is to eat without pain. They used disolvable stitches and I'm not lying the scar down my stomach is so neat, clean and will be hardly noticable in a year or so; they did a brilliant job!
Seriously I hope everything went as straight forward for you as it did for me and you get the outcome i did too. Easier said than done but really dont be scared

 

[Wish2BCrohnsFree]

New to here but not Crohns; surgery concerns

Awe that is brilliant Claire 617! I am so happy that things went well for you. I will discuss an epidural with my anesthesiologist. My surgeon said he prefers to use staples in case of infection but that he would use sutures if I wanted. Haven't decided. He said if there is infection, one cut to the sutures removes the entire batch and completely opens the wound again, however, with staples, they can take out one or two to drain the infection and then the rest of the incision stays closed. It's a gamble but I am glad it worked out great for you.

Co-incidentally Paracetemol is the same as Tylenol here, it is both Acetominiphen, just different names in different countries.

Thank you for sharing your experience. Very helpful and positive! Cheers!

 

[alexandros8]

Hey there! I'm also about a month post-op. The recovery is not bad at all... and so far its really helped my situation. I was really nervous going in as well... but it goes by really quickly, and the pain is mostly incisional and muscular. I had a lot of the same concerns... and I think of surgery as a last resort. But once you've made that decision you can't think twice about it- and just concentrate on the benefits it will bring, which are many. I had staples and a month later my incisions are clean and small.

As far as pain meds go, talk to your doctor about the best way to take them and then ween off them to minimize addiction. Once you're past the initial week or so, try to only take them if you need them.

Also, I'm researching the best way to approach CD post-op. Some Dr's think aggressive action like Cimzia, others think differently. It does depend if they are able to take all your inflammation out or not. I was on Cimzia prior to my surgery, and it seemed like it was helping but my condition was beyond being helped by meds.

Good luck with everything. Let us know if you have any more questions about surgery!

Alex

 

[Wish2BCrohnsFree]

Newbie here but not new to Crohn's; surgery concerns

Thanks Alexandros8 for your personal experience! Sorry I haven't replied sooner. Had visitors from out of country. It is encouraging to hear that the surgery was a success for you. I am hoping I will have a similar outcome. I have my pre-surgical screening soon and have a few questions/decisions to make. Ie: epidural or general anesthetic, sutures or staples, how soon a normal diet or whether I should eat the same way as prior, will there be abdominal muscle loss and if so how soon to exercise etc. Any further thoughts appreciated...

Thanks again.

 

[Crohn's 35]

Hi there Wish to be CF. I could of sworn I posted on here a while ago but nevertheless I have had 2 resections of the TI. First one was laproscopic and week before and after I was on antibiotics IV. I had the surgery, very small incision and no staples. I had anaesthesia and morphine after. Laproscopic is way less invasive and your healing is quicker. The second one was a full down the belly cut, and they tried to put the epidural in whilst I was put under but when I woke up, pain! It didnt work. BUT everyone is different and I would try it again. Sutures were disolvable so no pulling the suckers out.

If you are in good shape for your age, I would get the laproscopic and sutures and epidural. You will bounce back in no time. The first time I was, the second time I was older and took longer, didnt help that I got infected after, because the idiot wouldnt give me antibotics and operated while I had a high fever.

Your doctor will recommend what your exercises are permitted and when. Depends on your surgery. My original Gi says that every Crohn's patient could keep a minimum out 10lbs over ideal weight. Too much weight loss is not good.

Keep us posted on your surgery, best of luck, let us know what your surgeon plans on doing. Ask questions and keep a list! Go for it, you won't regret it!