16 Days from Iliostomy Reversal

Last night I had the best night's sleep I've had in months. I had two BM's all night, no pain, slept comfortably and awoke refreshed. God it felt good. All day I was pain free, took no pain pills and my wife and I went shopping at an antique store for about two hours. It was great. Then this evening we had a dinner of baked breaded shrimp, tenderloin wrapped in bacon and a sweet potato. I think the commercial food, shrimp and tenderloin appetizers did me in. I had some fairly severe cramps and spent about two hours going back and forth to the "john."

The fecal material burned terribly on my skin. If I could remove it and clean it off, the pain subsided, but while one my skin it was as though someone where burning my skin with a torch. I had an episode. I am no stranger to episodes, it was pretty much how my life revolved for over four years after the first bowel resection in 2007. I have learned though. I did end up taking a couple of powerful pain pills because of the intensity. I have cleaned my bottom thoroughly with a wash cloth after each BM and now am fairly comfortable. However, I do have to watch what I eat, that obviously makes a difference.

Week Two after Iliostomy Reversal

I have a pocket of fluid along the incision line. It apparently is not infection, the Dr. did not prescribe antibiotics. Terry and I drained most of it at home. We called the Dr.'s office and were told to come in immediately. At first he said infection, but as Terry pointed out when he saw it infection never came up again and the treatment was different. He used some forceps to open a hole in my abdomen, no pain. He then "wallered" the forceps around in the hole to increase the drainage. Terry had to avert her head as he was sticking that instrument about two and a half inches into my body. After he was satisfied the drainage stopped he put some type of a ribbon into the wound, about 8 to 10 inches of it, left a portion out and told me that was for me to pull it out on Friday. This was a Wednesday when we saw him. His instructions to us were to wait till Friday, take the bandage off, and using a sterilized cotton swab swab the wound with peroxide. We were to insert the swab into the hole in my side to keep it open and draining until it healed on its own.

In the meantime I still am plagued by fecal matter burning my anal area. At times it gets quite intense. I frequently have a BM, and they are now mostly formed. There is a progression going on from very loose, shapeless, debris to round, small but formed stools. The consistency may be firming up, last night they were like glue, in fact it took a while for them to drop. Also on the 2 AM to 6 AM episodes the stools were formed and not just loose material as the night before. So that is encouraging. However, the fecal matter sticks quite stubbornly to my anal area and just burns the skin immediately. I have taken to getting up and cleaning myself as best I can as soon as I feel the burning sensation even though I may not have a BM.

Terry and I saw the oncologist on Thursday, and maintenance chemo will be delayed until the fluid pocket is healed. The oncologists did tell when I asked if he had any wisdom that might ease my predicament that I should take one Immodium when I go to bed. The idea is to slow the movement of fecal material through the system to give my system time to recover. I did take an Immodium and did not experience any BM's until 2 AM, which provided me with some much needed sleep and relief.

I have been going some this morning and suffering the burning sensation. I am also going to try a Low Residue Diet that is supposed to reduce the amount of waste produced and thereby increase the time between BM's.

Are there good signs? Yes. I am able to urinate standing up without feeling like I will have an accident. While there is pain from the fecal matter contacting the skin, I am not really suffering the bloating, gas pain and upset stomach I had for over a year earlier. I do feel like if the large intestine is able to reduce the water content of the fecal material some more and slow the process that I may return to a somewhat normal digestive regime. I pray for that. These pain is relentless and at times I almost feel as though I will go mad as I am not able to get relief. However, I do get relief. I just to a percocet, had a BM, cleaned myself with some Aloe Vera wipes and am sitting quite comfortably right now. However, tonight we shall begin the routine again.

I do believe things will work out. I want them to, they must.

Intellicast - Paragould Weather Report in Arkansas (72450)

OK, time to start relating home recovery information about iliostomy reversal.

I wore the bag for ten weeks. I must admit, it had its pros. I emptied the bag often, but I did it when I wanted to not when my system told me to. Secondly, I had no stomach upset, no bloating, nor any cramps. The biggest con and one that makes me want to have my system work normally instead of a colonostomy is we never could depend on the method we used to fasten the appliance to the stoma area and have it not leak until we changed it. Over half the time we were successful, but a lot of times I ended up with a leaking bag and a few times it was at really uncomfortable situations like in front of co-workers. So when I was told the iliostomy reversal was probably I decided to go for it. The deciding factor was the iliostomy is considered by the medical community to be temporary, it is too messy and difficult to maintain. So even if I wanted a colonostomy in place of the regular hook up I would have had to have the iliostomy reversed anyway.

Surgery was set for Thursday, October 13, 2011. It went off without a hitch. In fact when I got back to my room and settled in as the day wore on I began to feel better and better. I even had thoughts that this was like outpatient surgery and I could go home now. Friday was the same, the staples burned in my side and were somewhat painful, but I felt great. The Dr. came in Friday evening and said he had given orders that if I felt like going home Saturday I could. I was quite confident that I would be leaving the confines of the hospital and heading home. It was not to be.

About Saturday noon, roughly 48 hours after surgery I got hit with diarrhea that was very intense. I had warning signs and was able to control myself until I could make it to the commode but I was really passing some fluid and a little material. While I did not feel good, I was glad I was having diarrhea instead of constipation. At least things were on the move. The Dr. came in about 4 PM and I agreed with his assessment that I did not need to go home at this time. So, I spent one more night in the hospital.

About 7 PM or six hours after the initial onset of diarrhea it started to let up. The frequency diminished and the intensity. Of course I had almost nothing to eat, but I had tried to eat something as I think part of the Dr.'s routine is to see how you react to food being introduced into your system. About 11 PM after a four hour nap I got up and got a cup of coffee. That went down well and I laid down to watch a late night west coast football game. About 1 AM I had a few more episodes of diarrhea and then was pretty quiet the rest of the night with only about three trips to the commode between 1 AM and 6 AM.

When breakfast came I felt better. I did not feel as upset in the abdominal area as I had and felt stronger. I had a breakfast of a biscuit, scrambled eggs and some juice. It went down well and I did not have any abdominal upset. The Dr. came in about 10 am, I told him I had breakfast two hours earlier and there was no negative reaction. I felt better, and he agreed with me that it was time to go home. The nurse changed the dressing on the incision point the day before and the Dr. removed it Sunday morning. The incision looked good, clean, not oozing or blood and was dry. Everything looked very good.

As we drove home I became more and more comfortable and even stayed up and watch the Packer-Falcon game on Sunday night football. However I did not sleep well. About every hour I had to get up and go pee, a few times I felt like I had to pass some material but it was not to be. However, I did pass gas in the middle of the night, so intensely that I woke up. It was a relief, but I was surprised at the volume.

I woke Monday morning, but I stayed in bed for a while dozing and drinking coffee with my wife. Breakfast that morning consisted of oatmeal and we kept the diet bland all day. Monday evening about 7 PM I had to go to bed, I was just exhausted and felt ill. I slept, off and on, until 8 AM the next morning. I guess the excitement of coming home and not napping had done me in. I felt good, had a bacon and egg breakfast, and slowly Terry and I started introducing my system into my normal diet, little by little. I was really comfortable other than the pulling and burning of the staples when I moved too excessively. This comfort lasted until about Thursday, or a week after surgery.

Thursday I began to feel like I had to have a BM. Not too strong a feeling, but I was passing some mucous type material that had some fecal matter with it, but mostly looked like debris. I also was experiencing some light cramping or gas pains, it was difficult to tell. My stomach for most of the week had been roaring and gushing like I've never heard before. In fact several times when I had to use the commode I know because I could feel the rumbling in the lower part of the abdomen near the incision area, then the feeling and rumbling would start up the ascending colon, cross at the transverse colon and go down the descending colon, and I either passed some gas or had some mucous come out. It was interesting, not at all uncomfortable, and I was OK.

One experience I was having was I could urinate without feeling like I was going to have a back door accident too. This was such a relief, I had not used a men's urinal in a public restroom for over a year simply because I was never confident that the only thing I would do is pee.

Saturday afternoon, now nine days after surgery and not quite a week after coming home, I was a happy person. Things were comfortable, the staples weren't pulling or hurting as much as healing was taking place and I seemed to be exercising system control I had not experience in several years, maybe as long as 5 years.

Saturday afternoon became a different story. My system got upset over something. I had bought some commercial holiday cookies that usually have a high fat content and I suspected of upsetting mys system in the past. Well the rest of the afternoon was spent lying on the couch, feeling ill and getting up about every 15 minutes to use the commode. I did pass some stool looking material but much of it was mucous with a little fecal matter suspended in the mucous. I cramped some, no more trips around the large intestine, now it was just get up and go to the bathroom. The material I was passing was harsh, it irritated the skin around my anus to the extent that it hurt to clean myself and I was blotting some blood. Pretty soon I was trying several types of salve we had to ease the burning pain but when you go about every fifteen minutes the salve gets wiped off and you have to reapply. I really got disheartened because this was much like I had experience prior to this cancer diagnosis and was part of the IBS symptoms I was experiencing. However, I have also learned that the body goes through stages during recovery and so I should wait.

The frequency began to taper off last night, however I did wear briefs and panty liners to bed as I was having a hard time passing some material when I thought it might be gas. I had stained several pairs of underwear and was visiting the porcelain shrine frequently. I made it through the night without too much distress but felt awfully bloated this morning when I got up.

I took the dogs for a walk and had a breakfast of sausage, eggs and toast. Afterwards as I sat in my easy chair fooling with the computer I experience three or four extreme abdominal cramps. Strong enough to make a person moan in pain. Nothing happened, just severe cramping. As of this writing I am now feeling quite well, the cramping seems to have ceased and I have no urge to go to the bathroom. So this appears to be another step along the recovery path.

One thing I have noticed is the fecal material I do pass appears very light in color and has the consistency of pudding. I had a barium enema a week before surgery and I have a feeling the light color is due to passing barium. It may also retard the absorption of water which accounts for the thin consistency of the stool. It may also account for the strong irritation the material has on my anal area as part of the large colon's job is to reduce the PH of the fecal material to a normal level. If the colon is prevented from doing its job because it is still coated in part with barium, then maybe the fecal material is not getting moderated on its passage thus burning my butt.

Right now, as I end this posting, I feel quite good, comfortable, no pain in the anal area and now sense of urgency to go. Just another step.

Now I am a survivor

The first time I had colorectal cancer it was a polyp that when removed the Dr.'s told me I was cured. It was so confined and the surrounding tissue so free of cancer that the oncologist told me I reverted back to the risk percentage of the population that had never had a polyp. Ha! At the cellular level along the point of resection lurked some cells that grew into another tumor. This tumor followed the incision line circumferentially until it ringed the colon and presented some obstruction to fecal matter. This I had severe IBS symptoms and about a year of pain and agony before we found the problem.

This time I went the full route, chemo/radiation, surgery and iliostomy, iliostomy reversal, and finally I will have three to four months of maintenance chemo. The side effects of the chemo/radiation were horrendous, the surgery was long and difficult the recovery not too bad but dealing with the bag of the iliostomy was a frustrating, maddening experience. Finally the iliostomy reversal and the diarrhea and incision pain are what I am currently dealing with. Soon I will begin the chemo maintenance program and hopefully about ten months after the colonoscopy found the tumor the treatment program will be done. I now pronounce myself a survivor. It has been tough, mentally. It has been tough on my wife both physically and mentally, and it has been psychologically draining. I have not lost my zest for life nor my will to live, but I am hopeful that I will have some years of peace in our lives and can grow old without such large amounts of time devoted to dealing with how you get through each day. I'd like to sit on the porch, drink some coffee and talk with some friends and not feel like I always had a sword dangling over my head.

Here's to a better future.