Reversal Surgery booked! Nervous!

[writermom39]

Hello everyone,

Thank you so much for being here to answer questions and support others. I will try to come back as often as possible to answer questions when I'm able. I have a few questions about my upcoming ileostomy reversal and I'm hoping some of you might be able to answer them.

1. Should I purchase items before going in like diaper rash cream and adult diapers? I've read that diarrhea is a common after-effect. Is there anything else you recommend I purchase in advance?

2. Last time the doctors tried to get me eating the day after my surgery. It was way too soon! What is the best way to approach diet after the reversal? Fluids for a few days, then soft foods, then solids? Or can you jump into solids right away?

3. You know the foods we tend to avoid with ileostomies? (raw veggies, fruits with skin, nuts, etc) Can we eat those again after the reversal, or will they continue to be bothersome?

4. Is there a huge risk of hernia? They are opening me right up because I have an end ileostomy, so no laparoscopic surgery for me. If there is a risk, any advice on preventing a hernia? I have a two year old, so I cannot prevent the obligation to lift forever. Will wearing a pressure garment around my stomach help?

I am so excited for the reversal. My stoma is extremely noisy and my bowel is prone to partial obstructions just under the stoma. I have become a hermit because I am so embarrassed by the noise. It is the biggest thing I hate about my stoma. If it didn't make so much noise, I wouldn't find it so hard to live with. I'm am very grateful for the blessing to receive the reversal. I would need serious psychotherapy if I had to live with this noisy, painful stoma for the rest of my life.

[Jackie61]

You will be nervous it natural .I took depends with me .It made me more comfortable to know i had them i only used 1 on my way home.God was with me no movement for the 2 hour drive. Food, The nurses pushed me, my Dr. let me go on my own time frame. I had total liquid 2 days, i did everything a little longer.THE KEY was don't eat a lot when food starts.They sent a meal that would feed two.The girl with me ate almost all an was sick. I ate small amount with a few hours between.Everything came along beautiful, If you can call smelly poop beautiful. It took 5 days to pass gas an poop.Just take it one day at a time your gut an body will guide you. Sore butt. Ask to have the cream from the first day. I let a day pass, it took a day to get on track from the sore butt. The rest of your recovery will come along . Keep the faith its been four months for me .Its like i never had a problem at all. WALK, WALK, WALK, it does work. let know please how it goes. Remember one day at a time. Good Luck !!!!!

[nicola smith]

How you must be looking forward to this! Here is what I did and, 2 years out, everything is just great.

1. I bought two packages of adult diapers and only used 2 or 3 of them, but was still glad I had them. A mattress pad gave me reassurance too. Calmoseptin cream is a must for butt burn. I also recommend a bidet-style toilet seat or, as a minimum, a hand-held spray. Very soft strong toilet tissue (Charmin), and wet wipes.

2. Don't eat anything until normal gurgling sounds start in the stomach and you have passed gas. Then follow a low residue diet for the next 4-6 weeks and introduce new foods gradually. Low residue is not the same as no fibre...it means avoiding non-soluble fibre.
http://www.hhsc.ca/documents/Patient%2 ... ds-trh.pdf

Keep a BM/food diary so you will be able to track frequency, improvements, etc.

3. After a few weeks, start following the MD Anderson bowel training program (imodium, psyllium at regular intervals after meals).
http://www2.mdanderson.org/app/pe/inde ... c&docid=34

This document also has instructions for Kegels, which you should be doing as much as possible prior to your surgery,

For me, this was the key to getting to a new normal.

4. I have no hernia experience but think that a pressure garment or maternity band might be a good idea. You certainly CANNOT lift anything over 5 lb for at least 5-6 weeks after your surgery. Lifting a toddler would be OUT.

5. Although I did not have a noisy stoma, it produced a lot of gas and after reversal I still have more gas than 'before', especially at night. So I take a Gas-x before bed and the problem is solved.

6. Be aware that frequency, butt burn, feelings of urgency (tenesmus) will persist for quite a while.

Tenesmus (rectal spasming) was an unexpected shock for me. This is apparently quite common and there's even a You Tube video (google for rectal tenesmus). At any rate, I found the best thing to do was just freeze and breathe through the spasm rather than run to the loo and strain to produce nothing. After a few weeks, the spasms decreased in frequency and duration and then disappeared. If they were really bad or frequent, I took a mild muscle relaxant.

5. You will be able to eat again, whatever you want, but it will take time and some foods will always have 'consequences' - for me its chinese vegetables, tomatoes, pizza.

6. Did you have ulcerative colitis prior to your stoma surgery? If so, consider taking probiotics. A fairly high percentage of people who have had UC develop pouchitis which is UC of the jpouch. Probiotics are an effective preventive and will moderate pouchitis if it occurs. I take a sachet of VSL#3 daily and so far, so good. VSL3 is expensive but worth it imo. Here's a link. I found the research papers provided on the site very helpful.

http://www.vsl3.ca/

Good luck!

[writermom39]

Thanks for the advice! I didn't have UC. They aren't sure what caused a bowel perforation in my large colon. Maybe an infection or bacteria. I will definitely come back and update my progress! My surgery date is April 10th. One week away! xoxo

[dlsa12]

Best of luck to you!! My reversal surgery is almost a year old now. I have had lots of trials but each day gets better and better. I am so appreciative that I was able to have this reversed.

I have found that Metamucil works wonders. It keeps down the gas and keeps me regular. The MD Anderson bowel training program really works. I was so glad that I read and followed these instructions.

[writermom39]

Thank you! I came home from the hospital today. My surgery was eight days ago. Apparently my small bowel was glued together by adhesions, so my surgeon had to cut it apart. He warned it would take awhile for my bowel to "wake up." I'm taking Maxeran to help keep things moving enough that I can be home from the hospital and have that awful ng tube out of my nose and throat. Probably the worst part so far of my recovery was that tube. I've caught myself reaching to check my bag a few times and I have to smile when it' s not there. Other than some wet farts in my sleep, I have been able to control my bowels for the most part. The urgency isn't as bad as I thought it would be. I am fortunate. Hopefully I am not speaking too soon! LOL

My stomach is hugely bloated and still quite a bit of pain. I imagine this will last until I'm moving things easier. I am immediately weaning myself off the dilaudid because I think I can manage the pain with tylenol and advil, however I know from my original surgery that going off dilaudid cold turkey doesn't work for me. I'm cutting down every day and should be completely off it in a week. In the meantime, I have had only a few very small soft foods. I'm sticking with fluids otherwise. I'd like to wait until my bowel is accepting fluids comfortably before jumping right into the solids, but it is so hard to resist! Wish me luck! XO

[DebEvans]

Sounds like you are doing great! I had a rectal/vaginal fistula repair on Apr 3rd so am recovering from that. I go back on June 3rd to check progress and hopefully schedule my reversal surgery! I hope I do as well as you seem to be doing. Hoping everything continues going great for you!!!

[niknak]

I'm glad to hear you are doing well and I hope your recovery continues smoothly. I'm going to be scheduling my takedown next month and I'm already getting nervous about it! Best wishes for you!!

[writermom39]

Thanks so much!

Well, I was mistaken thinking I could wean off the dilaudid so soon. Debilitating pain taught me better, lol. So I'm on the narcs for awhile. That's fine. It's better than being in horrible pain. hehe

I got my staples out yesterday and noticed when I got home that my incision was open in one spot. Although it was more fleshy than bleeding, I was concerned enough to go to the hospital. They've arranged for me to have home care until the opening heals on its own. A nurse will come each day and change my dressing.

I still have quite a bit of bloating and I think the hernia still appears to be there. I guess I won't know for sure until the tension stitches are out and my bowels are moving more regularly. I seem to alternate between constipation and diarrhea. I have a feeling the dilaudid is causing the constipation. I can't wait until my pain is more manageable and I can get off the narcs.

In the meantime, just trying to get rest and not push myself while I recover. xo

[writermom39]

I thought I'd post a brief update. It's been three weeks since surgery. A huge amount of pain was relieved when I got my retention sutures out. My tummy is still very swollen but I read somewhere this is normal and can last up to a year. I have not started trying on my old clothes yet. Still very tired and constipation is a bother. As soon as the retention sutures were out, the extreme decrease in pain inspired me to wean off the dilaudid. I'm doing it much faster this time with similar results, a general feeling of malaise while I cut down. But I remember how much better I felt once off of them altogether last time. So my goal makes the general yucky feeling worth it. As dilaudid is known for causing constipation, I hope that getting off it will cure that particular problem.

I would love if others going through this experience post their updates too. If I can offer any support, please let me know. xoxo

[writermom39]

Update on the swollen belly! It's gas! I woke up for the first time the other morning with a pretty flat stomach! Once I started eating, the gas started building and my stomach became more and more swollen as the day wore on. I've watched this happen every day since. If I lie down after a meal and let some gas out, my tummy feels a lot better. The gas isn't coming out as well as I'd like, but considering I just started farting again in the last week, it's a relief that I'm getting my gas out at all! Now it is morning and I am dreading eating, as I have so much energy and feel so good before I start on the solids every day.

[writermom39]

I hope that someone finds these posts useful at some point. I should have started a new thread!

Anyhow, yesterday I wore a compression garment for the tummy (bought at Sears for women looking for a flatter stomach). It actually helped me a lot! As the day wears on, I feel a lot of pressure in my stomach. Wearing the compression garment took a lot of that pressure away. I hope it will also help me avoid getting a hernia.

[willimtw]

I will probably book my reversal surgery next week. Scared to death....mostly of the NG tube, of all things. How long did it have to stay in? I've made them promise that I would be asleep when they put it in. Had a very bad experience with them trying to put one in while I was in the hospital - gag reflex to the max - they had to take it out - I just couldn't handle it. All the nurses said the reversal surgery is much worse than the first surgery, but when I talked to a friend who had the same thing done, she said it was a piece of cake compared to the first surgery. I am confused, scared, nervous but oh so grateful that reversal surgery is an option at the same time.

I appreciate the opportunity to ask questions and am glad to have found this site.

Thank you.

[joiwinds]

I am scheduled to have my reversal next Monday, so I really appreciate you posting about how yours has gone. Other than the gas, were there any other problems? I read a lot about people having butt burn and incontinence. Things like this make me even more nervous about the reversal, but at the same time I know it will all be worth it.

[writermom39]

I'm sorry I didn't check back sooner to answer questions! I've been having a hard time of things - depression, constant diarrhea, hernia, bloody stools. The ng tube was the worst part of my surgery too. I had to have it in a week, but this isn't the usual. My doctor said it was because I almost died and had so much toxicity in my intestines for the first surgery, that my small intestine was all glued together. He had to cut it all apart before re-connecting me. So, he didn't want me to eat for a full week and I had the ng tube in the whole time.

I am much happier to be crapping out of my ass, but the recovery is taking a toll. I don't get any sleep. I'm up all night going to the bathroom, scared to fart because I'll mess my bed. My sex life has gone to shit too. I have zero libido. Work is stressful and embarrassing. If I didn't have kids, I'd probably lock myself in a room and hope to die, to be honest. I hope this all works itself out soon. I am trying the anderson bowel training but so far, it isn't helping at all.

One thing is for sure, I wouldn't go back to a shit bag. I can, at least, be grateful for that.