[The_little_didgee]

My bum hurts. I have been struggling with this problem for over 5 years, but I never went to the doctor until this summer. I self diagnosed and lived with the discomfort, because I thought it was due to a_nal fissures and hemorrhoids, embarrassing problems that I can fix at home. Five years of intermittent rectal bleeding wasn't enough to see the doctor until the pain and bleeding started up again.

I have two small ulcers (on the mucous membrane) right near the dentate line, the area where skin turns into mucous membrane in the a_nus. They look like cankers. The GI thinks I have proctitis due to Crohn's disease. She won't give me anything until I have the dreaded colonoscopy which isn't for another three weeks. Now, I'm just using over the counter products (which are nearly useless) and prescription hydrocortisone cream for the itching that my family doctor gave me.

My bum is ruling my life right now. I'm in constant pain and struggling with nasty tenesmus. I feel the pain in my back, left side, and belly button area. Sometimes it makes me nauseated and feverish. What else can I do besides use creams, suppositories, and baths to alleviate my discomfort?

[geis]

Wow, they're not giving you anything? That's crap! (Pun intended.) I have ulcerative colitis (very similar to Crohn's), and I know how useless OTC meds are.

I would call back and ask if they'll give you mesalamine enemas or suppositories. They aren't too risky in terms of side effects, so maybe your doc would be willing to prescribe that while you're waiting for the scope. Those help me a lot when I get rectal ulcers. They probably won't help with the rest of the pain--they don't for me, anyway, as my entire colon is affected. But some relief might still help.

For the abdominal pain and cramping, I've found some relief with a heating pad. It doesn't cure the pain, but it makes it a little more tolerable. But really, they need to be treating the underlying inflammation--it sounds like more than just proctitis to me; probably your descending and possibly transverse are affected too, if you're having left-sided and mid-abdominal pain. (But I'm not a doctor.)

For nausea, there are prescription meds, if your doc will prescribe them. What's worked best for me is Zofran. But peppermint and ginger (oils, teas, even candies) help in a pinch, too. Again, they don't cure it, but they might help tide you over until you can get real treatment.

I'm sorry you're suffering so much. I hope you get some answers and relief soon! And if you ever want another IBD'er to talk to, you can PM me. I'm happy to talk/listen.

[The_little_didgee]

Thank you for replying. I really appreciate it. When I created this thread I wondered if anyone would read it. No one really wants to read about bowel problems.

All I am getting is hydrocortisone cream for my a_nal itch which really helps that problem, but does nothing for my rectum. I'm going to see my family doctor next Wednesday. I'd rather see her than bother the GI who I just met.

The GI is worried there may be more inflammation. I really hope the problem is limited to my rectum.

When the GI mentioned IBD I didn't believe her, because I don't really get diarrhea. All I seem to get is blood, mucus, itch, tenesmus and belly and bum pain. My bum hurts 24/7 now. It even wakes me up sometimes.

I never thought about using a heating pad for my belly pain and ginger for nausea. I'm going to try those.

Is your UC under control? Is the pain continuous?

[geis]

It can be lonely--I know what you mean about people not wanting to hear about GI problems. But I have basically no TMI filter. I've talked about my poop and my butt and my guts in more detail with more people than I ever would've imagined before I got sick. None of it grosses me out anymore. (I'll confess I sometimes mention details to my more squeamish friends for a little bit of a laugh.)

My UC is somewhat controlled but not in remission. I've never been able to get into remission. With UC, about 1/3 of patients go into remission without drugs, another 1/3 go into remission with drugs, and another 1/3 never manage to go into remission. I imagine the statistics are similar for Crohn's, but I couldn't swear to that. I also know that with UC, the more of the colon that's affected, the harder it is to achieve remission, but I don't know if that holds true for Crohn's as well. (In UC, the ulcerations are usually continuous, but in Crohn's, they're patchier, so it might not be the same with Crohn's.)

For me, pain is manageable unless I'm in an active flare, but then it gets unmanageable. When I had my first flare, it totally redefined the pain scale for me. While I've never managed to get into remission, the pain and other symptoms are MUCH better now that I'm on meds that help. There's definitely hope! But it pisses me off that your GI doc isn't doing anything. IMO, it's unethical to let a patient suffer for months while you're waiting for more tests. When I first got sick, before they knew what it was, they immediately started me on meds. Granted, they didn't help at first because they had me on the wrong meds (they thought it was C. diff. at first, not UC), but at least they were trying. And they were giving me pretty much the strongest painkillers. They still weren't working that great, but again, at least they were making an effort to do something. I had a colonoscopy on the third day of my admission, and they immediately started me on steroids and 5-ASA's.

Do you think your GP would be willing to prescribe something while you're waiting on the GI doc? The 5-ASA's are generally the first-line treatment, and they don't have scary side effects. (Most of the other meds used to treat IBD do, but don't let that scare you off--those side effects are rare.)

I've also really benefited from dietary modifications. I cut out dairy, eggs, gluten, and corn, and I limit fructose, fiber, and caffeine. The diet's a pain in the butt to stick to, but it decreases the literal pain in my butt. Different IBD'ers have had success with different dietary changes, so unfortunately it's kind of a trial and error process. Also, it can take a few months to see meaningful results. It wouldn't help you right away, but it might be helpful in the long run.

[The_little_didgee]

If a person is fine with me discussing my bowels I won't hold back. I'm very open about my chronic fissure problem and bunghole skin tags. Sometimes I will even describe my BMs.

UC sounds really awful. I first heard of it in 1998 when I had shigellosis. The doctors told me if my stool sample came back negative UC and Crohn's were going to be the next considerations. I remember being really worried about the possibility that I may have to live with longterm diarrhea, spasms and bleeding. It really scared me. How do you cope?

Don't be pissed off. My problems are so much more minor than yours. I'm not even sure I have Crohn's. My problem could be something minor such as internal hemorrhoids, levator ani syndrome, and/or a skin condition.

My GP has given my suppositories that contain hydrocortisone before. They are the only medication that seems to help. I'm all out so I'm hoping she will give me some more. I don't think she would prescribe anything stronger until I get a diagnosis from the GI.

Do you also have celiac disease?

I have eliminated a lot of foods from my diet over the years which has helped tremendously. I've discovered some foods like lettuce and cherries torture my bowels. I never used to have that problem before. Since I'm lactose intolerant I take Lactaid whenever I eat dairy products. I also read food labels because lactose is hidden in a lot of foods one wouldn't consider to be dairy. I also avoid processed foods, restaurants, and excessive fat and caffeine. I really need my one and only morning coffee so I'm never giving that up.

[geis]

I never know what to tell people when they ask how I cope. I just do, I guess, which is a crappy answer...but I don't have a better one so far. There are a lot of days when I hate the world because it's so unfair that I'm sick, and there are days when I'm so depressed and hopeless about it that I can barely function. But that's actually normal, you know? There's a grief process when you get diagnosed with a chronic disease. Your life changes forever, and there's not a lot you can do about it. It sucks, and grief is normal and healthy.

Having a sense of humor helps too. I make so many poop jokes it's ridiculous. Otherwise I'd spend a lot more time crying and/or raging. I mean, once I crapped my pants a few minutes before I had to give a speech to run as a delegate at my town's caucus, and I did it anyway, just hoping no one would smell it. The only way I can cope about that is to laugh hysterically. (Carrying a change of underwear with me wherever I go helps in that regard too.)

Talking to other IBD'ers helps me a lot too. There aren't any in-person support groups near me (the joys of living in the middle of nowhere), but I've found a few good Facebook support groups. It's nice to be around other people who get it, and it can be a good place to figure out what's fairly normal and what might require calling the GI doc.

I've also found that it really doesn't help to compare who's sicker/sickest. I think it's easy for us to minimize our own pain, but in a way, we're abandoning and neglecting ourselves when we do that. I mean, imagine you and I are in a car accident together. One of your legs is broken, and both of mine are. Yours still hurts, and you still deserve treatment and care and help.

Hydrocortisone is a relatively weak drug, so it's not really one you see used to treat IBD. I'd ask your GP about 5-ASA's like mesalamine. (Not sure if all the same drugs are available in your area.) But if the hydrocortisone is all you can get, it's certainly better than nothing. Is there any chance of getting the date of your scope moved up? Maybe if your GP calls the GI doc, they'd make an appointment for you sooner?

[The_little_didgee]

I like your attitude and sense of humor. My bowels have been entertaining at times. They inspired me to draw some cartoons of anthropomorphic colons.

My experience with mental illness has given me some understanding of what it is like to live with a chronic physical medical condition. When I got sick with psychosis the symptoms fluctuated. Some days were bad and others were good. My rectal pain seems to behave in the same way.

I haven't tried any support groups and won't consider attending any unless I actually have an IBD.

My family doctor gave me Anuzinc plus 20 mg-10 mg in suppository form that is used to treat a wide variety of rectal problems. I'm hoping the anesthetic in it won't burn the inside of my rectum like the one in Anusol Plus did. My ulcers fumed so I'll never ever use it again. It burned so bad that I had trouble breathing for a few minutes.

No, I can't move my colonoscopy appointment up.

I really appreciate all your help. Thank you.

P.S. I've crapped my pants too.

[kiwi33]

The_little_didgee, I hope that your colonoscopy returns a negative result for Crohn's Disease.

If it is positive then there are a number of non-surgical therapeutic options. This is something that I know a fair bit about - a dear IRL (now deceased) friend of mine lived with Crohn's Disease for many years.

As geis has pointed out, 5-aminosalicylic acid and steroids can be effective.

An alternative class of medications are a group of genetically-engineered antibodies which block the action of a protein called TNF. TNF is thought to trigger the inflammation which is part of the IBDs. Examples of them include Adalimumab and Infliximab (there are others).

If your Crohn's Disease Dx is positive, they are an option which is worth discussing with your clinical care team.

[The_little_didgee]

My colonoscopy had to be postponed. I'm having it done in the beginning of February.

I was doing well during the Christmas break. There wasn't much discomfort and bleeding. The discomfort returned on the weekend. It seems to be triggered by certain foods, such as seeds, nuts and fiber bits found in cereals. When I have a BM that contains any of these items it seems to scrape the rim and cause bleeding. I used to eat these foods without any problems.

On December 18th I saw the doctor and told her what was going on. She mentioned that I probably had a partial blockage in one of the glands in my a_nal canal. Before I have a BM I feel a sharp discomfort in my bottom that is very different from the typical urge to go. After I go a nasty fluid comes out and I feel better afterwards.

[unaluna]

I found some hemp bread that makes my tummy feel really good - also all parts south of it! I recommend it. Its high fiber but doesnt have chunky pointy bits.

[AncientMelody]

Dealing with rectal obstruction symptoms myself right now and awaiting further eval, I see my primary care doc next week. Just thought I'd throw-in with the other bowelly-bothered here.

[Perna]

A good friend has/had Crohn's and some of the problems you describe. I am so sorry you are in such pain. I hope the doctor gets it all figured out and can fix it.

[The_little_didgee]

I finally went for the colonoscopy. It wasn't very pleasant but I got through it. I always thought this test was unnecessary. Yesterday morning that was proven correct. The only reason I went along with it was my family doctor. She took the time to write the referral and help so I thought it would be best to just get it done.

The inflammatory bowel disease explanation didn't make much sense since I did not have the typical Crohn's symptoms. The GI talked as if I did which really upset and scared me. All I have are atypical a_nal fissures meaning they are not in the usually places and a small internal pile. I have no idea why I get fissures because my bowel habits are normal. The generic fiber and water advice doesn't apply to my situation since I drink enough and eat an adequate amount of fiber. Eating too much fiber gives me more fissures so why heed their advice?

I've decided not to pursue the matter any further nor fill the cream prescription and attend followup appointments. I've lived with fissures for over five years and survived so I can survive the next five. I'm going to find some home remedies and deal with this matter on my own.

Now, I am livid and hurt. Medicine is a pain in the back passage.

[possum220]

I just replied to the other post regarding the colonoscopy. I'm glad that they didnt find anything major. Forget I mentioned the anusol, but you might like to give proctosedyl a go.

Herbal might be another way to go (after all our medicines are all synthetics from the Natural world). Have a look a earthclinic.com

Good Luck