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Kline84
So I have a few questions. About 2 weeks ago I had to go see my surgeon to have 2 small abscesses drained and a scope of my pouch done. During the scope he found a fissure in the rectal cuff and some ulceration at the top of my pouch. Does it sound to u guys that maybe I actually have chrohns instead of UC? Also after being released from the hospital I was on antibiotics and felt like a million bucks so I figured the abscesses must have been my problem with pain and difficulty passing stool all along. Well about 3 days after quoting the antibiotics the pain has returned and I have a spasming painful urgent feeling when I need to use the restroom with little warning at all. Also it has been difficult holding it in and I have had a few accidents at night. I also have discomfort all the way up to my stomach. And my frequency has gone up a ton! When I was feeling good I usually only go to the bathroom about 3-4 times in a 24 hr period. Now it seems like I am going every 15minutes and it is very liquid like in consistency. Everything is starting to get irritated down below and feels like I am swollen inside. I can still see the open cut where the surgeon drained one of the abscesses right at the anal opening so some of the pain may have to do with this open wound trying to heal. I have also been losing some weight. It seems like anytime I have been on antibiotics I feel great but within a day or two of being off of them things start to go downhill. I have never had the stomach aches and discomfort within my whole small intestine so this is new. So I now I was kinda rambling but from
All of the info I have given anyone got any suggestions or ideas on what is wrong with me? Thanks for the help this forum is awesome!
KEITH

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Kline84Kline84Member
PS- I have also been having a ton of gas gurgling around inside and have never had a problem with gas. Now it is so painful and seems like there is just a ton of gas all day. I have tried beano and gas-x with no success. I try to stay away from gas producing foods but nothing seems to be helping. I started out like a rockstar with my pouch when I first had the surgery last July but things seems to be slowly going downhill. It really has me worried.
Kline84
Jan DollarJan DollarModerator, RN, retired
Doesn't seem like Crohn's to me. Has your doc suggested it as a possible diagnosis? Your scope findings sound like cuffitis and pouchitis and they are probably the reason for ALL your symptoms, and also probably the reason you were doing well on antibiotics.

So, you may need to be on a longer course of antibiotics to take care of it, and some topical treatment for the cuffitis, Canasa or hydrocortisone suppositories. If you had been on long term antibioticalready, I'd recommend asking about a C. difficile test before resuming antibiotics. Flagyl generally does not cause C. diff, but there are resistant strains.

Good luck!

Jan Smiler
Jan Dollar
Kline84Kline84Member
Thank you for your response Jan. my doc had been treating it as pouchitis and I have been on several courses of Cipro and Flagyl but the symptoms always return within a day or two of stopping the antibiotics. My doc is 6 hrs away since I live in Wyoming my only option is to travel. With my work schedule I only get to see him once in a great while so much of his diagnosing is what I tell him over the phone. I just was worried about the pain going all the way up to my stomach. I never thought about c diff. And that is something our local hospital could test for. I'm trying so hard to not let this change my lifestyle but even everyday things are getting hard to do because of urgency and pain. I have heard that some people have to take an antibiotic everyday for their whole life and I'm starting to wonder if I am one of those unlucky few. It would be nice to gain some weight also
Since I used to be in fairly good shape and cut...... Now I just look like a scrawny bag of bones.
Kline84
J jeaneMember
Kline,

I am a chronic pouchitis and cuffitis sufferer (along with stricture at anastomosis). I deal
with the same symptoms you are describing often within a couple of days of stopping antibiotics. I also have upper abdominal pain often on my left side. I have had ulcers at my anastomosis
and below the connection. I take daily antibiotics and use canasa suppositories often to deal with the rectal issues and discomfort. At this time, my doctor has not diagnosed me with crohn's disease.


What I have been experimenting with lately with some success is alternating days with antibiotics and I am at a much smaller dose (maybe 500mg every few days) now than I was at even 6 months ago to handle the pouch issues. I have also moved from daily suppository use for almost a year to several days without any and sometimes adding them in once or twice a week if the rectal irritation/bleeding acts up badly.
J
Jan DollarJan DollarModerator, RN, retired
Kline, it is fine for your doc have your local primary doc order tests at the local lab. You may not have antibiotic dependent chronic pouchitis, yet! Sometimes it is just a stubborn case that requires a prolonged course of antibiotics. One time I went through several courses of antibiotic with symptoms returning each time. It was not until I stayed on antibiotics constantly for 6 weeks or more that it resolved. Plus, I started Canasa suppositories for the cuffitis while I was on the antibiotics, and continued them for a few months after the antibiotics.

Some people need the combination of both Flagyl and Cipro to get it under control.

But, yes unfortunately, chronic pouchitis is a possibility.

Jan Smiler
Jan Dollar
Kline84Kline84Member
Thank you both so much for your help! The longest course of antibiotics he has prescribed has been 10 days so maybe a longer course is in order. It's pretty frustrating since none of the local doctors will help me at all with this disease since they know nothing about it. It's like they are scared to help me even with the more simple things like prescribing an antibiotic if I feel something brewing. I have always been fairly good at self-diagnosing and usually have been pretty accurate even after seeing the doctor and telling him what I thought was going on beforehand. I don't wish this illness on anyone but sometimes I tell myself it would be nice to have a doctor who has gone through this so he knows exactly what I am talking about. That is just one more reason I am so thankful for this forum. Now I can get advice from people actually suffering from the same things I am and know how it feels. Again thank you for your help it is much appreciated. I'm bound and determined not to let this rule my life! I know it takes a lot of trial and error but eventually I will figure this stuff out. Smiler
Kline84
TE MarieTE MarieMember
Please get tested for c-diff. Your local doctor can order it or your doctors can fax it into a local lab. Cipro is one of the antibiotics that has brought it on me in the past. I get it along with cuffitis and it really sounds like you have them both or just c-diff. I don't know about pouchitis as have not had it. The abscesses could also be messing you up too. Flagyl works to rid my c-diff. Good luck in sorting this all out. It really sucks having so maky problems at once. Confused
TE Marie
S SKadettMember
Kline, I'm searching for the same answers myself. I want to feel like a Rockstar again!! I was on a path for a promotion at work and now I'm at home on my 5th leave of absence in 6 years. I feel like I'll never get ahead in life at this pace but my bowels really have not given me a choice. GRR!

I'm on a 3 week cycle of antibiotics myself and I'm still feeling the pain and cramping, urgency and bleeding. I've wondered myself if I have Crohns too. Waiting on the pathology from my most recent scope, will find out May 2 if it shows anything.
S
Kline84Kline84Member
Well I'm thinking I may have had a bug of some sort because I am starting to feel a bit better. The spasming and pain I believe are cause by the two abcsess that the surgeon cut into right on the external sphincter. They are both directly across from eachother and they are still fairly deep open cuts that go from outside the anal area up into the rectal cuff. I think the pain from these was causing my urgency and spasming because my doc prescribed nitro glycerine and it helps with the spasming and pain and overall I feel much better. I also think I have been dehydrated so I have been knocking back the waters and noticed the cramping has slowed down also. Still not feeling completely good but at least its a step in the right direction. Generally how long does it take for a abcsess that was cut open to close up and heal? It is directly on the sphincter so it sees a lot of action. Thanks for all the help and if these things I'm doing don't solve the problem ill be back for more advice!

P.S- I have also been dissolving a heaping spoonful of natural honey from our beehives into a cup of hot tea along with a teaspoon of cinnamon and it has really helped sooth my guts. I drink it every evening now and it tastes pretty good too! Cinnamon is a natural bacteria killer so this concoction is also known to cure bladder infections and also relieves pain from arthritis when drank daily.
Kline84
TE MarieTE MarieMember
Have you tried putting the honey right on the healing wound? I'm trying to imagine open abscesses at the sphincter site OUCH. I had a big hole cut out under my incision from the removal of an abscess at my take down that was 2"L x 2"D x over 1"W. My husband had to measure it. It took around 3 weeks to heal. I don't think your openings are that large. Also I was packing it with gauze and changed that twice daily. So there goes my theory of putting the honey on it.

I still can't imagine how you are keeping it clean from the fecal matter, but am assuming you are some how.

I'm glad you are feeling better.
TE Marie
Kline84Kline84Member
The only way I have been keeping clean is with sitz bath and dabbing with wipes but I'm not sure it's doing a great job. I had the abscesses drained on April 30th and it does not appear that the open wounds have gotten any smaller. Tonight is especially rough as I have had to go so often. The doc says they will take time to heal but I don't see how its possible with the sphincter constantly moving with bowel movements and pulling the wounds open again. I am about out of my pain meds and have a 7 day hitch coming up at work so this is going to be interesting. My doc is across state line so he cannot call in more to my pharmacy and my local physician will not help me at all with anything that has to do with this disease. So I'm hoping I can tough it out till days off and get down to see my GI. I have tried Tylenol today so I could save the stronger stuff for work but I'm about to give in and take one of the few I have left. I have been putting Neosporin on the wounds hoping they will heal faster. Not sure if its helping but at least it eases the mind to think I am! When I'm in a hot bath I feel great but pain returns when I get out. Well thanks for letting me vent! Lol
Kline84
Kline84Kline84Member
Ok thank you For your knowledge Jan. is there anything I can do besides sitz baths for the pain? It is not a terrible pain but the fact that it is constantly there is wearing on me. When I'm laying down its not so bad but I go back to work tomorrow for a 7 day hitch. My job as an oilfield lease operator requires that I spend about 7 hrs of the day driving in my truck on rough oilfield ranch roads and I occasionally get out to collect data from the wells and grease pumping units and generally make sure the oil field is running smooth. The company I have started working for about a month ago is in the nation top 100 most desirable companies to work for and pays very well with the potential to turn into a high profile job. With that being said they also can't put up with having to take sick days very often and count on me being there day in and day out. When I was feeling good before the abcsesses it was great and it is not real physically demanding. If I can just find a way to curb this pain and get through till this heals I will be set. I have an appt with my GI on next days off and am hoping he can prescribe me some pain meds to get me by for a while. But that is 8 days away. I know sitting in that truck all day is not going to be comfortable. Also do you think me putting a gob of neosporin in the wound hurting or helping the healing? I understand it needs to breathe and be open but I also don't want remnants of stool remaining in the wound all day since I will be far from a bathtub. Thanks again for your help you really are a blessing to those of us who are not as experienced.
Kline84
Jan DollarJan DollarModerator, RN, retired
Polysporin is considered better than Neosporin by all my doctors. That is because the neomycin is more likely to cause irritation and inflammation. Otherwise, it is OK. Just don't use so much as to prevent drainage. For pain you can use a topical anethetic, like Oragel, for local stinging and burning. Probably better than oral opiates. You can also use NSAIDs, if you tolerate them. Just be sure to stop them immediately if you develop any GI symptoms. Tylenol is fine, but probably not as good for your pain.

Good luck!

Jan Smiler
Jan Dollar
TE MarieTE MarieMember
Prescription strength ibuprofen is 800 mg or 4 200 pills a dose. I wouldn't take more than twice a day. You need to worry about your liver. You can also take Tylenol with but it doesn't help. Also make sure you eat before you take it. You might not need 800, maybe just 400 or whatever. This is what I was taking before I received my UC diagnosis. My MD prescribed it, way back in the day before you could buy it OTC.
I have a rubber like donut blow-up cushion that I use in the car. There are pillows with holes in the middle too that might help as you are driving in the truck on what sounds like rough roads so much.
TE Marie
S SKadettMember
Get yourself a bottle of tea tree oil, put 8-10 drops in a warm sitz bath, it will cool and soothe the sores better than just a plain sitz. It's a natural antibacterial/antimicrobial oil from New Zealand. Also, manuka honey is some incredible stuff, it's made by bees who get their pollen from the tea tree. You can eat it, or spread it directly on a wound.

You can also get yourself a little squirt bottle that you can use to clean out the wound when you are not at home or close to a sitz bath.

I think the neosporin is a good idea, just make sure after the day you give everything a good wash and let it dry.

Are you able to take Immodium or lomotil to slow down your bowels so that you have fewer bowel movements throughout the day?

Also, when driving all day, don't eat a big breakfast and don't eat much during the day. This will ensure you don't have to irritate the area.
S
Kline84Kline84Member
Thanks for all the help! I have been putting a little eucalyptus oil in the sitz bath as it is soothing and claims to have morphine like properties. It does seems to be helping but I'm not quite sure about the morphine claim lol I have been taking Metamucil wafers and those have helped slow things down a bunch. Theses last couple days at work have not been to horrible.
Kline84

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